tag:blogger.com,1999:blog-55051873010236344682024-02-08T03:26:32.562+00:00The Sound of the SilentThe journal of a mother raising a very disabled childThe Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.comBlogger428125tag:blogger.com,1999:blog-5505187301023634468.post-58101783450507305562019-11-19T11:25:00.003+00:002019-11-19T11:30:10.542+00:00Phenytoin, you're fired<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR-Cdo_jKhs3Ipinzb3_rnbClwOuumqycZpB7yAxx_0rin7K3UxaMGMbnIQfpq60577C3rv1HTbD_EGKD_CUepww_y3_osS235USjNNZV0kCnVmrU4joYFiF227PiPFujF96E79E_HNjY/s1600/2019_11_19+C+walking+at+home.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="700" data-original-width="320" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR-Cdo_jKhs3Ipinzb3_rnbClwOuumqycZpB7yAxx_0rin7K3UxaMGMbnIQfpq60577C3rv1HTbD_EGKD_CUepww_y3_osS235USjNNZV0kCnVmrU4joYFiF227PiPFujF96E79E_HNjY/s400/2019_11_19+C+walking+at+home.jpg" width="182" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Roboto, RobotoDraft, Helvetica, Arial, sans-serif; font-size: 12.32px; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: center; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">That's me, walking C in our kitchen<br />seven days<span style="background-color: transparent; font-family: Times New Roman;"> </span></span><span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Roboto, RobotoDraft, Helvetica, Arial, sans-serif; font-size: 12.32px; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: center; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">after we stopped<br />the Phenytoin</span></td></tr>
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Just a week after starting her on 100mg/day of Phenytoin [<a href="https://thesoundofthesilent.blogspot.com/2019/11/phenytoin-is-up-next.html" target="_blank">background</a>], C. had a couple of horrific days, seizing terribly and for hours on end. Nothing I gave her stopped them.<br />
<br />
On the second horrific day and after five hours of that hell, I reported it to her new neurologist, I also just stopped administering it even before her response.<br />
<br />
She emailed us back, agreeing that in rare cases phenytoin can exacerbate instead of improving the situation. <br />
<div>
<br /></div>
<div>
I pointed out to her that on the day of five hours worth of convulsing, C. also had a bloody nose and her menstrual period. Now, she <i>never</i> gets the former and hasn't had the latter in about a decade. </div>
<div>
<br /></div>
<div>
The neurologist attributed the bloody nose to our dry weather. I doubt that. Dry weather is common in these parts but, as I noted, nary a bloody nose. The menstruation stumped her. </div>
<br />
Well, the nose dried up quickly. The period, though light, is still ongoing. All very strange.<br />
<br />
So we're back to square one with medications. <br />
<br />
The neurologist hasn't suggested any others to experiment with. I hope she won't jump to the second option she mentioned after medications: <a href="https://www.healthline.com/nutrition/ketogenic-diet-101">the <b>Ketogenic Diet</b></a>. I haven't got the stamina for that anymore. <br />
<br />
I was some twenty years younger the last time we attempted it. We persevered then for ten months and only ditched it when C. began vomiting several times a day from the high fat content. <br />
<br />
<div>
The neurologist was pretty eager for us to try it when we visited her two months ago. But she seemed even more eager about <a href="https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns">Vagal Nerve Stimulator</a> surgery. </div>
<div>
<br /></div>
<div>
The idea of surgery leaves me positively cold particularly since a surgeon warned us a couple of years ago that it would be "complicated" in C.'s case. She has had an old, non-functional VNS stuck in her neck since 1999. It is undoubtedly coated with all sorts of tissue by now.</div>
<br />
So C. is back to seizing quite a lot and functioning poorly. It is a bleak situation and her new diagnosis of Epileptic Encephalopathy Early Onset 11 due to an SCN2A de novo mutation only bleakens it more.<br />
<br />
<div>
The academic articles about her syndrome which we receive thanks to Google Alert make it clear that there is currently no salvation our there for Haya.</div>
<div>
<br /></div>
This <a href="https://www.sciencedirect.com/science/article/abs/pii/S1525505019309096">last one</a>, for instance, taught me that her current seizure situation qualifies as <a href="https://www.epilepsy.com/learn/challenges-epilepsy/seizure-emergencies/status-epilepticus"><i>Status Epilepticus</i></a>.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-75269414668617325432019-11-05T15:35:00.000+00:002019-11-05T15:44:30.131+00:00Phenytoin is up next<div>
Very excited to share that my daughter C. will finally try out a new anti epileptic - one that has been found successful in a significant percentage of <a href="https://www.omim.org/entry/613721" target="_blank"><b>EIEE11</b></a> cases. </div>
<div>
<br /></div>
<div>
It's the first med change we're making since <a href="https://thesoundofthesilent.blogspot.com/2019/07/diagnosis-delirium.html" target="_blank"><b>her diagnosis</b></a> with that syndrome three months ago. </div>
<div>
<br /></div>
<div>
Aside from <b><a href="https://hightimes.com/health/cannabidiol-cbd/" target="_blank">CBD</a></b>, this addition will bring C.'s anti-epileptic tally to three. And while I loathe giving her so many at once, as the neurologist emphasized, the cardinal rule is one med change at a time. So, we'll wait until C. has settled into the therapeutic dose of phenytoin and then, the doctor promises me, we'll remove at least one of the others. </div>
<div>
<br /></div>
<div>
She even asked me which I believe is less effective. I told her that's hard to judge but since <b><a href="https://www.vimpat.com/" target="_blank">Vimpat </a></b>was added last and there hasn't been an improvement since, I'd like to see the back of that one. </div>
<div>
<br /></div>
<div>
Truth be told, her other med, <b><a href="https://www.drugs.com/keppra.html" target="_blank">Keppra</a></b>, isn't anything to write home about either. </div>
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<br /></div>
<div>
Hoping to get the script for <b><a href="https://www.drugs.com/ppa/phenytoin.html" target="_blank">Phenytoin</a></b> (marketed as <b>Dilantin</b> in some markets) tomorrow.</div>
<div>
<br /></div>
<div>
UPDATE</div>
<br />
<div>
Yay, got the script and C. has taken her very first Phenytoin pill.</div>
<div>
<br /></div>
<div>
When I told C.'s pediatrician that this was the drug selected by the neurologist, he was surprised: "<i>Back in prehistoric days, when I was doing my residency</i>", he recalled, "<i>we had only two anti-epileptics to administer, Phenobarbitol and Phenytoin. There are so many new ones on the market now</i>." </div>
<div>
<br /></div>
<div>
But, I reminded him, those new ones just don't help C.</div>
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<br /></div>
<div>
Here's some <b><a href="https://en.wikipedia.org/wiki/Phenytoin" target="_blank">Wikipedia</a></b> input:</div>
<div>
<blockquote class="tr_bq">
Phenytoin was first made in 1908 by the German chemist Heinrich Biltz and found useful for seizures in 1936. It is on the World Health Organization's List of Essential Medicines, the most effective and safe medicines needed in a health system.</blockquote>
</div>
<div>
Hoping that stellar reputation will prove well deserved!</div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-59429594162182647442019-07-26T15:19:00.000+01:002019-07-26T15:19:09.810+01:00Diagnosis delirium<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdNwklI6WcGu5seYoecI-Kc3c78tCvn9f9LWAsyi0r-4WzHBY9SVPBzmpP_HTQ6BxeurhMGHoc4IdNYlGXoLjWoZ31_EjKoeN4rs3kJSp5JHTlT-dJlXJ1LrsdDNZEoHJlTvAbGwBx058/s1600/2019_07_26+SCN2A+protein.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="764" data-original-width="1024" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdNwklI6WcGu5seYoecI-Kc3c78tCvn9f9LWAsyi0r-4WzHBY9SVPBzmpP_HTQ6BxeurhMGHoc4IdNYlGXoLjWoZ31_EjKoeN4rs3kJSp5JHTlT-dJlXJ1LrsdDNZEoHJlTvAbGwBx058/s400/2019_07_26+SCN2A+protein.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div>
<a href="http://epilepsygenetics.net/2015/08/11/scn2a-this-is-what-you-need-to-know-in-2015/" target="_blank">From Beyond the Ion Channel: The ILAE Genetics Commission Blog</a> </div>
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It only took 24 years but the <a href="https://www.merriam-webster.com/dictionary/idiopathic" target="_blank">idiopathic</a> era is now behind us. Because we finally have a name. A name, that is, for what makes C. seize uncontrollably and incapable of doing just about everything.<br />
<br />
It's <b>Early Infantile Epileptic Encephalopathy Type 11</b> - or <b>EEIE11</b> for short - for which we owe thanks to a mutation of the gene <a href="https://ghr.nlm.nih.gov/gene/SCN2A"><b>SCN2A</b></a>. <div>
<br /></div>
<div>
We received the news in the geneticist's office which we entered and exited in 15 minutes. There just wasn't much for her to tell us, other than our daughter is the only one in the world with the mutation on the specific protein she's got.<br />
<br />
And to learn more: "Go home and Google it." (She said she would have herself but came unprepared because of an office scheduling snafu.)</div>
<br />
It goes without saying our fingers are calloused from heeding her advice. But Google has offered precious little. We now know that this diagnosis is rare, still being researched and at this point untreatable. <br />
<br />
<div>
The silver lining to this bleak news is that <a href="https://www.cancer.gov/publications/dictionaries/genetics-dictionary/def/de-novo-mutation" target="_blank">the mutation is </a><i><a href="https://www.cancer.gov/publications/dictionaries/genetics-dictionary/def/de-novo-mutation" target="_blank">de novo</a>.</i><br />
<i></i><i></i><br /></div>
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<div>
That means it isn't hereditary and, consequently, is of no concern to our offspring. The de novo-ness was confirmed by doing the same full exome test for me and my husband which revealed that neither of us carries that mutation. From what I've read thus far, I've also learned that the most severely affected cases are the de novo ones. (A cloud in the silver lining?)</div>
<br />
This thing is so rare that a couple of journal articles report studies of individual children afflicted. <br />
<br />
Which leads me to believe that some neurologist out there might be eager to study our C. Not only is she rare, but our geneticist said that she's the only person with the mutation on that specific protein of SCN2A.<br />
<br />
Since I will never give up hunting for some treatment that might just ameliorate C.'s condition even a smidgeon, I'm asking anyone who has had experience with this syndrome/mutation to please contact me. <br />
<br />
In the meantime, here (above) is a video clip of my daughter C, showing slight progress with pushing her switch to play music.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-56813750431905935252019-07-21T11:52:00.002+01:002019-07-21T11:52:30.834+01:00Unamusing musings<div>
Plodding along with C. Daily assisted walking, weekly hydro and now, intensely working to get her pushing the "button" independently. Not there yet, as you see in the clip below, but we're optimistic:</div>
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<br /></div>
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I just read the jarring news of the <a href="https://www.cnn.com/2019/07/11/health/epilepsy-sudden-death-sudep-trnd/index.html">death of Cameron Boyce</a>, a Disney actor who died in his sleep following a seizure at the age of 20. While my daughter C.'s seizures are horrific, distressing and all similar adjectives, I never fear that they're also lethal. </div>
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<br /></div>
<div>
My concerns are that they heap fresh damage on her already-ravaged brain and that they occasionally render her ragged and non-functional for hours. </div>
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<br /></div>
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But I never consider that they could do worse than that. </div>
<br />Apparently I'm not alone in that misconception. It's common even in the epilepsy community. You can read more about epilepsy fatality and how the medicos kindly contribute to our ignorance of it <b><a href="https://edition.cnn.com/2019/07/18/opinions/epilepsy-stigma-cameron-boyce-stanton-storey/index.html" target="_blank">here</a></b>. <br /><br /><div>
And as long as I'm in pondering mode: </div>
<div>
<br /></div>
I wonder how many of you have friends or relatives who you are pretty certain consider you nuts for devoting yourselves to keeping your sick children alive. You know, folks who think: "Why do they expend all that energy, money, time and emotion on a child who has barely a modicum of "quality of life"?<br /><br /><div>
Well, I've got a couple such people in my circle. </div>
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<br /></div>
<div>
One had a brother who, in his forties, suffered several mini strokes that left him severely incapacitated for years. Then while lying in bed he somehow broke a leg - although he wasn't mobile. Despite several weeks in a cast, the leg failed to heal. The doctor told my friend that it needed to be amputated or he would die from gangrene. She asked this doctor, who wasn't actually the one treating him, as that one was away on vacation: "But if the leg didn't heal from its break won't it fail to heal from an amputation too?" As my friend related it to me, the doctor replied "That's right."</div>
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<br /></div>
<div>
That was her brother's death sentence. Because then and there my friend decided that amputating was pointless especially since he had no "quality of life" anymore. She placed him in hospice care to await his end, which she was told could take up to six months. </div>
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I didn't intervene because I figured she wouldn't take kindly to it. </div>
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<div>
Shortly afterwards, his G-tube fell out and the hospice nurse told my friend that they couldn't replace it. That could be done only in hospital but, the nurse warned, if he would be hospitalized, he couldn't be readmitted to hospice. So my friend decided to leave him to die of starvation in hospice!!! Without even giving him fluids!! </div>
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<br /></div>
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This time I did intervene and asked how he could be denied even water. Well, he could, and he was. She flew to the US to be there when he died. She told me he was "very focused" whenever his nieces and nephews Skyped with him. I take that as his conveying a will to live. But nobody was listening.</div>
<br /><div>
Then there is this neighbor/friend who had a Tay-Sachs child who passed away at the age of four or five. When C. first became ill and epileptic, that mother told me that her child's doctor had advised her to "get her daughter out of the house" when she began seizing. She dutifully did that, sending her to a hospital in another state. </div>
<div>
<br /></div>
<div>
Bear in mind that everybody knew full well that the child had a short life expectancy. </div>
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<br /></div>
<div>
Well, the parents rarely saw her after that. But fortunately, the child had a compassionate grandmother living in the same city as that hospital. The grandmother once told me that she would visit her granddaughter daily and took her for walks in a pram she redesigned to accommodate her. (This was some forty ago and disability equipment was still primitive.) She said the nurse told her "This child has survived as long as she has only thanks to your daily walks with her."</div>
<br /><div>
I wonder what that neighbor/friend thinks twenty-three years on when she sees me with my C., still alive, still at home, still loved.</div>
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<br /></div>
<div>
We don't speak much anymore. </div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-80633386743150087572019-06-26T18:39:00.003+01:002019-06-26T18:41:21.134+01:00A few fabulous firsts<div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIbFQ-_jOaflDAVBEHHIZS7JBofAz5PbOZe3y3AQntxEE5V7i8KBH8CoeswMcLszNwzSY-qLlkZLrqDcD5TlsIqxHiEIt2MGydhKNa2TiTGvxABK0xdEAk2ItV0BbvOO7zNF6Kg1LKwzg/s1600/2019_06_26+Shiffi+and+Haya+in+the+pool.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="474" data-original-width="773" height="196" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIbFQ-_jOaflDAVBEHHIZS7JBofAz5PbOZe3y3AQntxEE5V7i8KBH8CoeswMcLszNwzSY-qLlkZLrqDcD5TlsIqxHiEIt2MGydhKNa2TiTGvxABK0xdEAk2ItV0BbvOO7zNF6Kg1LKwzg/s320/2019_06_26+Shiffi+and+Haya+in+the+pool.png" width="320" /></a></div>
My daughter C. has had several recent "firsts" that I've been derelict in relating. No valid excuse for that other than 24 hours just no longer suffice for me.</div>
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<br /></div>
<div style="text-align: center;">
<b>I </b></div>
<div>
C., my husband and I went to our local hospital to give blood for her first <a href="https://ghr.nlm.nih.gov/primer/testing/sequencing">whole exome sequencing</a>. Our own blood will only be used for comparison in the event that something comes up in her test.<br />
<br />
The geneticist forewarned us that there's only a 20% chance of that happening. Meaning, the likelihood is we'll be left with the diagnosis we've lived with for over two decades, namely spontaneous mutation. </div>
<br />
<div>
But since genetic testing is still cutting its teeth, there will undoubtedly be new tests available in the near future. C.'s blood will be stored for that eventuality.</div>
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<b><br /></b></div>
<div style="text-align: center;">
<b>II</b></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK1uA-g-4zJqVfNmz1DbMwJXps2DT9xoyo5Djyzi_NgqXlCE8X_yBDmgQ1rBquoJiTspdR5Pg8Q6gAU0tttRmEM9lyZw5zspaYZmPOYAyQ28HNguzzAfyP_vVP02F7BRTcwtMxwAwNP5k/s1600/2019_06_26+The+swing+in+Zur+Hadassah.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="645" data-original-width="425" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK1uA-g-4zJqVfNmz1DbMwJXps2DT9xoyo5Djyzi_NgqXlCE8X_yBDmgQ1rBquoJiTspdR5Pg8Q6gAU0tttRmEM9lyZw5zspaYZmPOYAyQ28HNguzzAfyP_vVP02F7BRTcwtMxwAwNP5k/s320/2019_06_26+The+swing+in+Zur+Hadassah.png" width="209" /></a>C. has returned to the therapy pool - and to her regular, pink bathing suit - with a new hydro-therapist. As I grumbled here recently, her previous therapist ditched her because, as she explained, C. was stressing her out with her very occasional stressed seizures during sessions. . </div>
<br />
<div>
So we tried out a new one which the school offered us. After two sessions with her, I believe I can safely declare her to be unequivocally perfect! </div>
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<br /></div>
<div>
Here she is with C. (above).</div>
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<div>
That beloved wetsuit I've been raving about is stashed away for now, unnecessary in the well-heated therapy pool. </div>
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<br /></div>
<div>
Besides, we're having a heat wave here and transporting C. in a wetsuit to the cooler pool where I work with her would be a torture for her. I'll miss giving her those longer 40-45 minute sessions. She only gets 30 at this school. </div>
<br />
<div>
But the transporting is also a strain for my husband who is in the throes of a debilitating case of <a href="https://www.cdc.gov/cmv/awareness-month.html" target="_blank"><b>CMV</b></a>.</div>
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<br /></div>
<div style="text-align: center;">
<b>III</b></div>
<div>
C. went <i>swinging</i> for the first time in her life. We had a family gathering a couple of months ago where we discovered a swing suitable for children with disabilities. It doesn't accommodate a wheelchair but it was a treat nonetheless. </div>
<div>
<br /></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWfWDHtSYZqQ3ouqNzNcaQhTZHis29MdPFIdSEOL_f7QeGQg7l5as9KD7z5JIPUJgfEjjh1Nmd_J6-ze0Q_ttaOmsSj1vrT_2COgbqOD3kFhYsneXMxWiRjkTqVAMcocehjef4Yzv5S14/s1600/2019_06_26+Haya+and+switch+button.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="639" data-original-width="583" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWfWDHtSYZqQ3ouqNzNcaQhTZHis29MdPFIdSEOL_f7QeGQg7l5as9KD7z5JIPUJgfEjjh1Nmd_J6-ze0Q_ttaOmsSj1vrT_2COgbqOD3kFhYsneXMxWiRjkTqVAMcocehjef4Yzv5S14/s320/2019_06_26+Haya+and+switch+button.png" width="290" /></a>So here she is (in the photo) discovering the sensation of swinging.<br />
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<div style="text-align: center;">
<b>IV</b></div>
The spiffy switch we'd been awaiting is finally here.<br />
<br />
We've borrowed it from a local rehabilitiation center to try it out. If C. responds well we'll purchase one.<br />
<br />
Here she is (on the right) pressing to trigger taped music and looking suitably engaged!<br />
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Unfortunately the "First" we're anxiously awaiting still - namely, having C. seated comfortably - has not yet materialized.<br />
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The modifications to the new chair which a physio-therapist at that same rehab center reccommended haven't arrived yet.<br />
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So C. is still suffering in her old, ill-fitting chair.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-11454524259917235762019-05-02T04:17:00.004+01:002019-05-02T04:17:48.482+01:00Another shot at our wheelchair woes<div class="separator" style="clear: both; text-align: left;">
After a long delay, my interview with a major local news station, aired. I spoke about institutionalization of people with disabilites and about raising a child like C. at home. </div>
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I mentioned my recent guided tour of a local, large institution that houses 80 such residents ranging from infancy to 40 years old ["<a href="https://thesoundofthesilent.blogspot.com/2019/01/my-plunge-into-activism.html"><b>My plunge into activism</b></a>"]<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: #741b47; display: inline !important; float: none; font-family: Cambria; font-size-adjust: none; font-size: 24px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 700; letter-spacing: normal; line-height: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"></span></div>
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The avalanche of venomous comments my words generated on that station's website - some were downright <i>ad hominem</i> - shook me to the core. Now I wonder whether doing the interview was wise, notwithstanding the praise that a leading activist sent me. </div>
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Anyway, no turning back the clock; I'll have to just weather it.</div>
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We have two important, much-deferred appointments approaching for C.</div>
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One, tomorrow, is with a physiotherapist who is a seating expert at a major rehab hospital in our city. We'll bring C. in her new, unusable wheelchair to ascertain whether it is salvageable via inserts and sundry adjustments. Since the chair can't be disassembled we had to book a special van from a local non-profit to transport it.</div>
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I've really had it with the old wheelchair we are now using - it's only slightly better than the frigging new one. Here's hoping we return home tomorrow with some sort of magic-seating-bullet.</div>
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The second upcoming and long-overdue appointment for C. is with a geneticist. The goal is to finally diagnose C. with something, anything, i.e. not only symptoms but an underlying cause -. rare syndrome, a random mutation, not fussy.<br /><div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizRBkmedH9nByrWmfhCI_0_WYyEwc6SFFzqHp8kMNhZETakY9Gofva-_Oxl-YviX1OON8WvbFm5x0CCuhpMI0QHB2zWlJfQxBWZiyvr6ZsMAHJPq3cYMte8In8upMjRgFNR8q3rVd4uoE/s1600/2019_04_30+End+of+hydro.png" imageanchor="1" style="-webkit-text-stroke-width: 0px; background-color: transparent; clear: right; color: #0066cc; float: right; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-left: 1em; orphans: 2; text-align: center; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><img border="0" data-original-height="463" data-original-width="371" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizRBkmedH9nByrWmfhCI_0_WYyEwc6SFFzqHp8kMNhZETakY9Gofva-_Oxl-YviX1OON8WvbFm5x0CCuhpMI0QHB2zWlJfQxBWZiyvr6ZsMAHJPq3cYMte8In8upMjRgFNR8q3rVd4uoE/s320/2019_04_30+End+of+hydro.png" width="256" /></a><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike></div>
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We hope, for one, to thereby relieve our other children of the worry and fear hanging over them with each of their pregnancies. We also hope to learn that whatever C. is afflicted with would respond -even minimally- to some treatment. </div>
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Modest goals, right?</div>
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C. has been seizing a lot lately. Not quite <i>status epliepticus </i>but demoralizing nonetheless. </div>
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Notwithstanding, she positively rocked again this week at my hydro session with her, after entering the water with seizures. </div>
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Too bad we don't have a private pool to zap those seizures with every day. </div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-17856250120577692052019-04-10T11:08:00.000+01:002019-04-10T11:08:09.660+01:00Voting for the vaporsLast month, we brought my daughter C. back to the epileptologist who first examined her in September 2018.<br /><br /><div>
At that first visit, this doctor patiently recorded C's history as we related it. She then recommended several new tests and treatment options. We left her office feeling optimistic.</div>
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But once we tried to implement her advice, we hit snags. The primary one was our inability to contact her staff. They never returned calls or emails and without coordinating everything with them we couldn't proceed. <br /><br />I was prepared to just forget about this epileptologist notwithstanding her superb credentials but the Hubby preferred to persevere. <br /><br />So last week we expended a second round of time, energy and money to shlep back to her with C. As it turned out, the latter proved entirely unnecessary: the doctor didn't so much as look at C., let alone touch or medically examine her - even when she had a huge seizure in the office. <br /><br />One of her concerns back in September was C.'s low weight. This time she asked us whether she had gained at all since our last visit. But she didn't trouble to weigh her on either occasion. C. might as well have been invisible and our efforts to bring her to the office were clearly unnecessary. <br /><br />I was disappointed and annoyed. What do you all think? Am I quibbling?<br /><br />This time around, her assistant did contact us a few days after the appointment, as the doctor had promised. She is instructing us on how to switch Cannabis CBD suppliers. This is a complicated process involving reams of paperwork required by the relevant government department.<br /><br />The switch is necessary in order to procure CBD in vapor form which the epileptologist believes is absorbed more thoroughly than the oil C. currently receives. <br /><br />To start with, we will divide dose between the two forms.<br /><br />But this option was not the epileptologist's first choice. What she plugged most enthusiastically was surgery. She is keen to have C.'s twenty year old, inactive Vagal Nerve Stimulator (VNS) removed and replaced with an updated, more sophisticated version. <br /><br />We had this urged on us three years ago by another neurologist: the one who destroyed Chaya's liver with Valproic Acid and then, when we notified her of the liver crisis, washed her hands of us. So, I'm sure you'll understand why I don't harbor any positive feelings for that option.<br /><br />Back then, we even met with the surgeon himself. He informed us that the surgery would be "complicated" but doable. He too was eager, though he warned us that he would only proceed once C. gained some weight.<br /><br />Before C. could oblige us that way, liver failure struck and the neurologist who had been touting the VNS surgery, as I mentioned, fled the scene. (After making the preposterous assertion that the liver failure had probably been triggered by the CBD and not by the Valproic Acid!)<br /><br /><div>
Fast forward to last week's visit: I've had a couple of years to mull that surgical option and am far less enamored with it than I was then. C. has been through the liver ordeal and several severe urinary tract infections in the interim. What kind of candidate for surgery does all that make her?</div>
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So this time, I pressed hard on the brakes. "Thanks, but no thanks." I told the epileptologist. "C. will try the CBD vapors before we subject her to any complicated surgery." Or something to that effect. <br /><div>
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Of course, the doctor tried to convince me of its "uncomplicatedness". But I wasn't buying it this time. </div>
<br />Here's hoping those vapors deliver C.'s ravaged brain a bit of respite from the decades of daily seizures she has endured.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-72455592701409784432019-04-10T04:36:00.000+01:002019-04-10T04:36:05.936+01:00On Status Epilepticus, the status quo and my status mentis<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj0XmgK0_TNcmJgQmVb_5DYKNJ5mr2Z2JmGfadBWEkgMnkdQpS8WTFNm_oGulrx02NsR7_HU5P6lmbpMs2e4p8OJH3XRP7jov4BgGKGXGUBJhAWGVmgU5N-0PIE1tyA9zmvL5kiBj7xt4/s1600/2019_04_07+At+the+end+of+the+hydro.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="800" data-original-width="530" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj0XmgK0_TNcmJgQmVb_5DYKNJ5mr2Z2JmGfadBWEkgMnkdQpS8WTFNm_oGulrx02NsR7_HU5P6lmbpMs2e4p8OJH3XRP7jov4BgGKGXGUBJhAWGVmgU5N-0PIE1tyA9zmvL5kiBj7xt4/s400/2019_04_07+At+the+end+of+the+hydro.png" width="265" /></a></div>
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I've written these words several times in the past few minutes to family members: </div>
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"I'm at my wit's end. We've had a full day of seizures with a brief respite of about two hours. Otherwise they are coming every four-five minutes."</blockquote>
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That was me losing it on Thursday night. Much of Friday night saw me similarly frantic. </div>
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Saturday's string of seizures was shorter, so I drifted closer to sanity. Then today, after a couple of seizures, C. managed to perform well in the pool for a full 45 minutes. Here she is in aquatic bliss as we approached the chair that lifts her out of the pool.</div>
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A few hours later, she also performed passably well for both her OT and her ST who met together for the first time to decide which sort of communication board/switch would suit C. best. They concluded that what would be best for C. is a large switch/button with a rough surface that can activate either music or a story. </div>
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The ST promised to procure such a device for her via one of the local rehabilitation centers. Hoping this won't prove to be as long and frustrating a process as procuring a wheelchair has been.*</div>
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<br />And since then, C. has accommodated us with a few isolated seizures now and then, occasional low grade fevers responsive to Paracetamol and otherwise her "normality"'. </div>
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It's amazing what a few days of <i>status epilepticus</i> can do for one's state of mind. I'm now OK with her few daily seizures and very low level of functioning. Even thankful.</div>
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<br />But we need to forge ahead with doing something about her status quo. We'll search further for a local CBD supplier who can provide it as an inhalant. The only one we've located so far only has CBD with a fraction of the strength of the oil we now use: 11%, while ours is 30%. </div>
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<br />Unfortunately, we aren't receiving any meaningful assistance from C 's neurologist or her staff. Somehow, I imagine she'd be far more pro-active had we chosen the surgery route i.e. switching C.'s old VNS for a new one.</div>
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* Update: C. is still stuck in her old chair while we await our May appointment in that same rehabilitation center. We'll have to bring her there seated in her new chair via a special van provided by one of our local NGO's. The hope is that the seating specialist there will be able to finally solve the problems rendering the new chair unusable.</div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-70277432139504746282019-03-27T10:15:00.001+00:002019-03-27T10:15:30.801+00:00Our perilous pool<div>
The therapeutic pool were my daughter has been doing hydrotherapy is still closed for repairs. </div>
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If it weren't for that wetsuit we bought her on-line, I'd be positively apoplectic by now. </div>
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But out of curiosity I inquired about the "renovations for safety" that the hydrotherapy business blamed for the closure. I contacted the special ed school where the therapy pool is housed (C.'s alma mater) and learned the truth: tiles had fallen from the pillars in the pool area! Yikes, I thought. What sort of professional therapy pool is that? </div>
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Fortunately nobody was present on either occasion but that was just a fluke. The retiling job has, I was told, proven to be involved and lengthy. </div>
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Here's a photo of one of those potentially lethal pillars.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCcxRVkXWpXWImrAzZ1rWXj9nb9UonqqkVaRqrtn4enaqpK2kiZGcdkix4RNZTIHlX-Cw2AmrSfoHi6g0hZBoBeNLzFv22LSmqC8vAWpBNJV6_afD9DDIsl5KIbZV7l3gK6f1vEXX9bvU/s1600/2019_03_26+Pool+tile+tells+all.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="685" data-original-width="472" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCcxRVkXWpXWImrAzZ1rWXj9nb9UonqqkVaRqrtn4enaqpK2kiZGcdkix4RNZTIHlX-Cw2AmrSfoHi6g0hZBoBeNLzFv22LSmqC8vAWpBNJV6_afD9DDIsl5KIbZV7l3gK6f1vEXX9bvU/s320/2019_03_26+Pool+tile+tells+all.jpg" width="220" /></a></div>
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<br />The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-42007447073275488082019-03-04T12:39:00.000+00:002019-03-04T12:44:49.543+00:00Tokyo here we come?<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj-9RBYTe8P7KxnEj6zg-1957Qr7Px3YnKkIgffbhutGtOIA2sSjr6FB_60asJpr0-IOHDVXF3bWnxUif1w9IsLgUVUZtWffKoFE4d7qUJAzdRkIJ3rXlKs8yBoYFqBrVP9ZnUuuG4mKM/s1600/2019_03_04+Aline+walks+C+in+the+pool.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="776" data-original-width="485" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj-9RBYTe8P7KxnEj6zg-1957Qr7Px3YnKkIgffbhutGtOIA2sSjr6FB_60asJpr0-IOHDVXF3bWnxUif1w9IsLgUVUZtWffKoFE4d7qUJAzdRkIJ3rXlKs8yBoYFqBrVP9ZnUuuG4mKM/s400/2019_03_04+Aline+walks+C+in+the+pool.png" width="250" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">C.'s therapist water-walks her in the pool</td></tr>
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Our local therapy pool, housed in the building of C.'s alma mater, is quite nice and modern. </div>
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The trouble with it is that it frequently suffers "breakdowns", as they're termed. The latest one has stumped the repair guys for over two weeks. </div>
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But I wasn't as disappointed as you'd expect. It spurred us to take C. to my local non-therapy pool for the first time in her her new, state of the art, wetsuit. </div>
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We've already used it twice with undeniable success. She floated without support, and even kicked a tiny bit. E., her caregiver, and I believe that she may not have kicked with her usual enthusiasm because the wetsuit felt cumbersome. So, perhaps with time she'll get used to it and kick as she does in the therapy pool.</div>
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Most important, though, was that she didn't shiver, was relaxed and seemed to enjoy the water as much as she does the heated pool. She had been seizing badly prior to her second wetsuit session and wasn't yet clear of them when I took her in the water. </div>
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But she actually calmed down totally after just a few minutes, confirming my conviction that swimming is soothing and beneficial for her in every way.</div>
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I'm now weighing whether to simply drop her sessions at the therapy pool once it's repaired. I do everything that the trained hydrotherapist does and those sessions are $44 a pop. (Our health insurance only allows us 12 sessions annually at their expense.) </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0BuV5iLuY2cKOo0bLtJYIFL_OMqUC3EWBdeAtyOoJvXeinynYFWec1hlA8POA8qBBn0ko4omGsf5eg_fQ__TRsAujjN9fYK7TkxKdHJrvwWBxn9SqFB2BuXIS991aRlUQBWnjMo0FxJ0/s1600/2019-03_04+Wetsuit.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1137" data-original-width="1600" height="227" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0BuV5iLuY2cKOo0bLtJYIFL_OMqUC3EWBdeAtyOoJvXeinynYFWec1hlA8POA8qBBn0ko4omGsf5eg_fQ__TRsAujjN9fYK7TkxKdHJrvwWBxn9SqFB2BuXIS991aRlUQBWnjMo0FxJ0/s320/2019-03_04+Wetsuit.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm doing the therapy myself with C. in our local public pool.<br />Check out the wetsuit.</td></tr>
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Oh, and there's the fact that the best hydrotherapist dumped her ("<a href="https://thesoundofthesilent.blogspot.com/2019/02/c-gets-ditched.html" target="_blank"><b>C. gets ditched</b></a>") so she would be with the second-best therapist. The latter likes to devote part of the 30 minute session on standing C. in the water. Since I walk with C. every day on land for 45 minutes, I figure <i>water-walking </i>isn't really crucial. </div>
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Besides, C. doesn't seem to like it.</div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-81362056242839213002019-02-18T04:53:00.002+00:002019-11-05T15:37:22.613+00:00C. gets dumped<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXfw35DRTXVRqWy3ymctJG_iRs9Xttt4CdPWgceTHSbDlJHpfNkXTsxXmff6udIcbVEmEXMm_f3s8EmXbQ914ngyoSsq9BwwxcbY8KOwFVfrfS2nRF2Eap6aa2T2QH_wqvvpnB95cwD34/s1600/2019_02_18+Hydro+-+new+therapist.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="506" data-original-width="823" height="245" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXfw35DRTXVRqWy3ymctJG_iRs9Xttt4CdPWgceTHSbDlJHpfNkXTsxXmff6udIcbVEmEXMm_f3s8EmXbQ914ngyoSsq9BwwxcbY8KOwFVfrfS2nRF2Eap6aa2T2QH_wqvvpnB95cwD34/s400/2019_02_18+Hydro+-+new+therapist.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last week's hydro and C. is with the replacement therapist</td></tr>
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As you regulars are by now aware, hydrotherapy is unequivocally the highlight of my daughter's life. We go to great lengths and expense to give her this perk. <br /><br />I've posted numerous photos and videos of her hydro performances. And we couldn't ask for a better therapist.<br /><br />So I was blindsided three weeks ago when that therapist informed me she would cease her work with C. and swap with another therapist. <br /><br />While I do consider the one she's swapping with to be competent, she can't compare with her previous one.<br /><div>
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And here's the reason her "ex" gave: the woman hasn't been feeling well recently (she cancelled last week's sessions) and was told by her doctor that one cause of her symptoms was stress. He advised her to eliminate as many stress triggers as possible. Turns out our C. was top of her "hit list". </div>
<br />You're probably as baffled as I was until she explained that she always dreads that C. will seize in the middle of a session.<br /><br />She said she hopes I'm not offended. <br /><br />Now, since I've never blamed myself for C.'s epilepsy, I can't fathom why I'd take offense. But I sure am disappointed and confounded.<br /><br />C. has rarely seized during a hydro session and, even when she has, she's recovered within two minutes. And this same therapist has years of experience with epileptic children at C.'s old school. <br /><br />But the bottom line is that it stresses her now. <br /><br />What helps me understand her situation is equating it with my driving. Once upon a time, I was fairly adept behind the wheel and capable of inter-city trips with relative ease. But I'm so jittery now, I never leave our city limits and only transport our grandchildren on brief, familiar routes - and never on highways. <br /><br />Fortunately, C. has yet to scare away her Occupational Therapist or her Speech Pathologist. They both seem rather pleased with her responses to them. The OT is working on her grasping and releasing of objects and the SP on her responses to questions of preference with her hand. Pointing her index finger is the sign for "yes" and a fist is "no". <br /><br />E., her caregiver, and I are trying hard to incorporate various questions into her daily activities. So before every sip of water, for instance, we ask her whether she'd like some.<br /><br /> Hoping they don't ditch her any time soon.<span style="margin: 0px;"></span>The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-4408138788225558132019-01-22T20:26:00.001+00:002019-01-26T17:12:18.175+00:00Antibiotic = anti-epileptic?<div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyZv1GVqlbI5vq_0AtQi0P8NIeradlfBgWojXzoBLHUQfyKHqg9P_iI1LStiEKoIaYe3dH7pYSMrB8eA4WCSIN1R9iB7xvJRHf2K3Gv-l5-xVVeg15xYUfUroJugUAi7Hlb5oYYCXgtLE/s1600/2019_01_24+Seizing+child.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="294" data-original-width="756" height="155" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyZv1GVqlbI5vq_0AtQi0P8NIeradlfBgWojXzoBLHUQfyKHqg9P_iI1LStiEKoIaYe3dH7pYSMrB8eA4WCSIN1R9iB7xvJRHf2K3Gv-l5-xVVeg15xYUfUroJugUAi7Hlb5oYYCXgtLE/s400/2019_01_24+Seizing+child.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://discover.dc.nihr.ac.uk/content/signal-00586/lorazepam-confirmed-as-first-line-treatment-for-stopping-prolonged-seizures-in-children" target="_blank">Illustrative image</a></td></tr>
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This could conceivably have been orchestrated worse - say while the Hubby was in Prague for three days last week. But even though he'd returned home the previous night, it was still pretty awfully timed.</div>
<div>
<br /></div>
<div>
So for several days, C., her caregiver E. and I were all sick in unison. That meant from Friday afternoon until Monday morning I was caring for a rather ill C myself. Sunday, I dashed out for my own blood/urine tests but was otherwise homebound all those days. I've been diagnosed with a <a href="https://www.mayoclinic.org/diseases-conditions/urinary-tract-infection/symptoms-causes/syc-20353447" target="_blank">UTI </a>and am on antibiotics. </div>
<br />
C.'s blood and urine tests indicated the flu which blindsided me since I had her down for a definite UTI too. But when her fever rose on Friday morning, I panicked, called the doctor back and was glad he prescribed 3 days of prophylactic antibiotics.<br />
<br />
The worst aspect of her illness was her suppressed appetite resulting in dehydration. We had one 25- hour stretch with NO urine whatsoever. I know, I know, I should have rushed her to the ER. But that's an ordeal I just couldn't confront. When she finally wet herself, she produced torrents.<br />
<br />
E.'s illness involved a fainting spell - a symptom she says she's been prone to since childhood. Given that she spent three of her formative years living on the streets of Manila, that was a frightening fact to learn.<br />
<br />
<div>
But a weird aspect of C.'s virus has been her reaction to the antibiotic. As I've noticed several times in the past, she stopped seizing since starting the antibiotic. Stopped! Cold turkey, for 4 days! </div>
<div>
<br /></div>
<div>
Today is day 5 and she has only had one tiny one. She has already been off the stuff for two days but I imagine there's a residue in her system. </div>
<br />
Has anybody out there ever observed this reaction to antibiotic? I've never mentioned it to any of the neurologists because it seemed so illogical and inconceivable. But could it be that antibiotics have anti-epileptic properties?<br />
<br />
Have I discovered a magic bullet?The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-10028095291678939262019-01-13T20:56:00.001+00:002019-01-13T20:56:43.688+00:00Two switches: To a wetsuit and to a drier diaper<div>
After a three week closure for repairs, the local therapy pool finally reopened. </div>
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<br /></div>
<div>
During its closure, I took C. to the neighborhood regular pool where I do my laps. It's only heated to around 27 degrees Celsius (about 81 Fahrenheit) versus the therapy pool's 33 degrees (91.4 F). </div>
<div>
<br /></div>
<div>
While she floated passably well in it, she didn't kick and was clearly cold. Can you see the difference between her demeanor in the two pools in these photos? If it isn't apparent trust me, she was shivering.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvskwd1P8hjqLUBA_jpirDVTrsnTSiWLYHNsQgufVuvw-NSc3WdbdoYGyW-3zDj9jxh9fJfusv6xtzmGxU96wvvymkvG80JdIInA8VHoEpFs0Yv_ugfYV1duprRujGXCgsbfxN7XFfx5s/s1600/2019_01_13+Cold+water.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="255" data-original-width="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvskwd1P8hjqLUBA_jpirDVTrsnTSiWLYHNsQgufVuvw-NSc3WdbdoYGyW-3zDj9jxh9fJfusv6xtzmGxU96wvvymkvG80JdIInA8VHoEpFs0Yv_ugfYV1duprRujGXCgsbfxN7XFfx5s/s1600/2019_01_13+Cold+water.png" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the cold water</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-VA78oqviWWDlykhfgV4WeAWQRWfAGFZhFFni7oUQaYko2Pvg2o3qoEIzfiKQVdawDeFoXuDrkQaSfTuqRZJ42Y7qn7IJCDzErVCwv_PJgtw5jXKW4SOsuhB0ZL_t2n14aOh7uYEBX-8/s1600/2019_01_13+Warm.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="123" data-original-width="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-VA78oqviWWDlykhfgV4WeAWQRWfAGFZhFFni7oUQaYko2Pvg2o3qoEIzfiKQVdawDeFoXuDrkQaSfTuqRZJ42Y7qn7IJCDzErVCwv_PJgtw5jXKW4SOsuhB0ZL_t2n14aOh7uYEBX-8/s1600/2019_01_13+Warm.png" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the warm water</td></tr>
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<div>
A friend who was in the pool with his baby during one of those sessions suggested buying C. a wetsuit. Diving isn't our thing so we promptly boned up on them and ordered one from Amazon which equally promptly sent it.<br /><br />Here is C. trying it on. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx7RBGL12h9OVjvoveCETRtSYGQ_PQQfjdASAWPk1TpbKHX34mA2IH1enaGogVKWTVw-0ggCNQiRk49esymTdqSIwcWk86lo3p1HDk-pVnlyemcpF6jEkmlA49HSUFtbOQPs9K2GRC2II/s1600/2019_01_13+C+in+her+new+wetsuit+-+cropped.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="633" data-original-width="816" height="155" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx7RBGL12h9OVjvoveCETRtSYGQ_PQQfjdASAWPk1TpbKHX34mA2IH1enaGogVKWTVw-0ggCNQiRk49esymTdqSIwcWk86lo3p1HDk-pVnlyemcpF6jEkmlA49HSUFtbOQPs9K2GRC2II/s200/2019_01_13+C+in+her+new+wetsuit+-+cropped.png" width="200" /></a></div>
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Stay tuned for a report of her maiden swim in it. <span style="-webkit-text-stroke-width: 0px; background-color: white; color: #222222; display: inline; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 13.33px; font-style: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span></span></span></div>
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<br />
Another major switch we've made is of C.'s diapers. I have been resistant to using adult diapers, clinging to the largest size of Huggies. I'd use two at a time for greater absorption but her pants were always getting drenched nonetheless. I can't really explain my reluctance to switch other than because the smallest of the adult ones are still too large and bulky for C. </div>
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<br /></div>
<div>
Well, one of my daughters took the bull by the horns and brought us a couple of packages of adult diapers. E., C.'s caregiver, was immediately smitten with them and I came around eventually too. </div>
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<br /></div>
<div>
Her pants do get drenched occasionally but not always as before. Also, because of the improved absorption, those spots that were prone to pressure sores are totally healed. </div>
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<br /></div>
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Win win.</div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-49127215454969840092019-01-11T13:37:00.002+00:002019-01-11T13:37:20.042+00:00My plunge into activismSomehow I have less and less time these days. Admittedly, since my heart attack two years ago, I've stopped skimping on sleep. But I doubt that explains my inability to do nearly as much as before. <br /><br /><div>
In any case, one result has been neglect of this blog. </div>
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<br /></div>
<div>
I suppose that the "same old, same old" status of C. has also contributed to my failure to post (seizures are still a fixture of our lives, fine and gross motor skills - plateaued and that new wheelchair is still a nightmare.) </div>
<br /><div>
An additional factor is my recent involvement in some honest-to-goodness activism. It fell into my lap, out of left field. </div>
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<br /></div>
<div>
Here's how:</div>
<br /><div>
A major local organization defending the rights of people with disabilities recently paired up fifteen members of the legislature with fifteen involved citizens, me among them. We were sent - all on the same day - to stage surprise raids on twelve large, closed institutions scattered across the country. </div>
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<br /></div>
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The idea was that the law-makers, who by law <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">must </span>be admitted whenever they appear at an institution's door, would insist on being accompanied by their activist-partners. Of course, on our own we would never have gained entrance.</div>
<br />My lawmaker-partner and I visited an institution that's just fifteen minutes drive from my home. It houses 82 people with severe disabilities ranging in age from infancy to 40 years old. I've been harshly criticizing this place in posts here and at other sites for a long time so it was thrilling to finally gain entrance to it. <br /><br />A complaint letter has been sent to the relevant government ministry containing some of what I learned from the tour guide - an employee of the raided institution.<br /><br />I've spent tons of time transcribing the recording I made of our tour guide's hour-long spiel. She's an administrator of the place and just spewed the jargon-laden gobbledy-gook for over an hour. <br /><br /><div>
This week, a complaint letter drafted by the advocacy organization and containing some of what I learned from the tour guide, was sent to the government department that's in charge of social welfare. </div>
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I'll share some of the damning points in another post, after the department responds.</div>
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The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-10586922561796548202018-11-24T21:56:00.002+00:002018-11-24T22:03:43.809+00:00On institutions and getting your life back<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8zcnvz6t-HBmMJsWTWYZNzYbnAyIEh0aE88zwvnumkahD66BBq8Hx90Qf1sfKdmki-DF7ze7q1lEsRCU526PxVFAhweQIMRZJic3cVic5EAdfJOkWZCbYwBQFkxbbDU7jLB03hG6cLWQ/s1600/2018_11_25+NYTimes+inside+an+institution.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="675" data-original-width="954" height="282" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8zcnvz6t-HBmMJsWTWYZNzYbnAyIEh0aE88zwvnumkahD66BBq8Hx90Qf1sfKdmki-DF7ze7q1lEsRCU526PxVFAhweQIMRZJic3cVic5EAdfJOkWZCbYwBQFkxbbDU7jLB03hG6cLWQ/s400/2018_11_25+NYTimes+inside+an+institution.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From the New York Times article quoted below</td></tr>
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How nice. We have our own month. <br />
<br />
This year’s theme for <a href="https://caregiveraction.org/national-family-caregivers-month-background">National Family Caregivers Month</a>, November 2018, is “<a href="http://caregiveraction.org/national-family-caregivers-month">Supercharge Your Caregiving</a>”.<br />
<br />
Now that's so vague, it begs an interpretation. This is mine:<br />
<blockquote class="tr_bq">
Galvanize and supercharge the public. Enlist them as supporters of home care.<br />
<div style="line-height: normal; margin: 0px 0px 6.66px;">
<b><i></i></b></div>
</blockquote>
So here goes.<br />
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<br /></div>
<div>
To those living in countries like mine, where the institutionalization of people with disabilities remains a flourishing business: You may be among those swayed by the propaganda disseminated by our local institutions. You may now be convinced that they are indispensable; that people with disabilities could not survive – or would suffer - without them.</div>
<br />
And I don't blame you. You are in good company. Most of our fellow citizens have succumbed to the contention that the residents of our large, closed institutions have nowhere else to go; that many have been abandoned by their parents and that some are sent there by court order. <br />
<br />
But I have learned that the above is a far cry from the truth.<br />
<div>
<br /></div>
<div>
I called a hotline recently opened by the largest chain of large institutions in my country. I posed as a parent who is considering institutionalizing her daughter with disabilities, urged on by her husband but very reluctant to take the step.</div>
<br />
The staff member who answered my call immediately assuaged my concerns about the negative effects of institutionalization which I told her I’d read about. <br />
<br />
She reassured me that I would “remain my daughter’s parent” since I would be free to visit her whenever I choose to. To reinforce that, she mentioned one mother who stops by her child’s institution every night to tuck her into bed. <br />
<div style="line-height: normal; margin: 0px 0px 16px;">
</div>
I had described my daughter as “severely disabled”. But at no point in the conversation did the staff member inquire about the extent or type of disability my daughter has. She asked me whether I had tried out some sort of day program. When I replied that we couldn’t find a suitable one, she left it at that, with no questions about why we rejected them all. <br />
<br />
She conceded that handing my daughter over would be “a difficult process” but that ultimately it would be worth it. Once it is done, she promised, “you will get your life back”. To conclude, she urged me to meet with the institution’s social worker who would be able to give me further details.<br />
<br />
Sometimes this chain of institutions resorts to outright hard-sell. A video proudly publicized on its website features the hyperbolic praise of several parents who institutionalized their children. One father relates that within days of his wife’s passing, he was phoned directly by the CEO of that enterprise<a href="file:///C:/Users/arnol/Downloads/November%20is%20Caregiving%20Month.docx"> </a>and urged to hand over his child. He is grateful for that interference.
<br />
<br />
In this country the belief that that large, isolated institutions is the ideal option, is embraced as gospel. Even disability advocates don't challenge it unless the blatant abuse of residents has been exposed. <br />
<br />
And as we all know, reports of abuse are rare. Staff members are loathe to turn whistleblower for fear they’ll lose their jobs. Parents rarely learn of abuse from their children who are often incapable of reporting it. Even when they do, many are afraid to speak out lest their abused children incur revenge abuse from the staff. <br />
<br />
So, as I said, if you have succumbed to all the pro-institutionalization PR, that is understandable and you are not alone. But rest assured, it's an entirely different story in the wider enlightened world.<br />
<br />
This recent NY Times opinion piece ("<a href="https://www.nytimes.com/2018/10/16/opinion/orphanages-children-latin-america.html"><b>The Lasting Pain of Children Sent to Orphanages, Rather Than Families</b></a>") highlights that enormous gap. <br />
<div>
<blockquote class="tr_bq">
“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. But such volunteers might be doing more harm than good. Rich countries closed their orphanages long ago. Decades of research [<a href="http://www.faithtoaction.org/wp-content/uploads/2014/03/Summary-of-Research4.pdf">link</a>] shows that institutions — even the best — harm children, who simply do better in every way in a family. Within one, they can get consistent adult attention and engagement. But orphanages are expanding in poor countries."</blockquote>
</div>
<div>
Why is our country treating its children with disabilities as if it were a poor country when the truth is quite the reverse? Why does our government gives tens of millions of dollars annually to just one chain of institutions?</div>
<br />
That cash could instead enable families to care for their children with disabilities at home with greater ease and peace of mind. It could finance therapies and caregivers to "give parents back their lives". And it could achieve that more cost effectively than through institutionalization.<br />
<br />
Many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism". is actively solicited by institutions here and in poorer countries. Ours, repeatedly posts profiles of overseas volunteers who have who have worked there. Over a dozen such volunteer "testimonies" as they are dubbed, currently appear on one website. <br />
<br />
That NYTimes piece about volunteers has more harsh words for volunteers :<br />
<blockquote class="tr_bq">
“Volunteers from rich countries <a href="https://www.theguardian.com/news/2018/sep/13/the-business-of-voluntourism-do-western-do-gooders-actually-do-harm">make children’s lives worse</a> in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away. Volunteers are also perpetuating a system that takes children from their families…What drives the growth in orphanages isn’t motherless children. It’s <a href="https://www.theguardian.com/world/2017/aug/19/the-race-to-rescue-cambodian-children-from-orphanages-exploiting-them-for-profit">donors and volunteers</a> from countries that don’t use.”</blockquote>
So make your voice against institutionalization heard. Support parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many who institutionalize our children would keep them at home – and still “get their lives back”. <br />
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Let's follow the lead of other enlightened countries. Could they all be wrong?The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-80651526154616467022018-11-21T11:17:00.001+00:002018-11-21T11:20:53.747+00:00Regression strikes - then recedes<span style="font-family: inherit;">There are several reasons for my silence, a major one being C.'s disappointing performances in both walking and swimming. It's painful to describe such depressing developments while in the grip of them.</span><br />
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<span style="font-family: inherit;"></span><br /></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM_efZqqBu-ffTmskA23lRzJ6woXrhl4DVRPU8bKyG2bZjF4MJlywA5RItHTRE8dFfpe8gYOttrNqMw3XDYf8zGMy_3QaxamOBGNk-DjTzHxwUhdWGTD1FzWc62FGHQixlulch3i84kFU/s1600/2018_11_21+C+in+pool+with+her+hydrotherapist.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" data-original-height="288" data-original-width="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM_efZqqBu-ffTmskA23lRzJ6woXrhl4DVRPU8bKyG2bZjF4MJlywA5RItHTRE8dFfpe8gYOttrNqMw3XDYf8zGMy_3QaxamOBGNk-DjTzHxwUhdWGTD1FzWc62FGHQixlulch3i84kFU/s1600/2018_11_21+C+in+pool+with+her+hydrotherapist.png" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">Asleep in the hydrotherapy pool</span></td></tr>
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<div>
<span style="font-family: inherit;">Then as suddenly and inexplicably as her walking regressed, it returned to normal - well, normal for C., that is. She resumed straightening her left leg in between steps and independently step</span><br />
<div style="text-align: right;">
</div>
<span style="font-family: inherit;">ping with her right leg. (Stepping with her left one is still a rarity so I push it forward).</span></div>
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<span style="font-family: inherit;"></span><br /></div>
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<span style="font-family: inherit;">The swimming regression was even more alarming. </span></div>
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<span style="font-family: inherit;"></span><br /></div>
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<span style="font-family: inherit;">In two consecutive hydrotherapy sessions, she fell asleep the minute she entered the pool. It was such a deep sleep that no amount of interference from the therapist, E., her caregiver or me could rouse her. </span></div>
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<span style="font-family: inherit;"></span><br /></div>
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<span style="font-family: inherit;">We nudged her, spoke to her, tried to give her drinks, poured cool water all over her face and neck, all to no avail. The first time I panicked and was on the verge of racing her to the ER. </span></div>
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">That first episode passed abruptly five minutes before the end of her session. She even floated nicely until leaving the water. The following week, though, she didn't wake up until she was in the shower. </span><br />
<span style="font-family: inherit;"></span><br />
<div>
<span style="font-family: inherit;">The temperature in and around the pool was higher than usual because the room's heating wasn't functioning properly. But that didn't explain the previous week's fiasco when the room temperature was normal. Nor the fact that nobody else fell asleep there either week. </span></div>
<div>
<span style="font-family: inherit;"></span><br /></div>
<div>
<span style="font-family: inherit;">Has anybody ever had this bizarre reaction to a therapy pool?</span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP0UG27yb82dMe-ZhI4Fvb-3526JckSGy-7IiOfFDPbqS_y0mk4-oimWBLi92lb6kfU2UB9UTaUnVPGEFxc2syzLEOkcBFer_rk-iyS29RuhI_FjT03oDCnmo7WOT1dolyEZ3qHuHoKXs/s1600/2018_11_21+C+with+her+OT.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" data-original-height="288" data-original-width="176" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP0UG27yb82dMe-ZhI4Fvb-3526JckSGy-7IiOfFDPbqS_y0mk4-oimWBLi92lb6kfU2UB9UTaUnVPGEFxc2syzLEOkcBFer_rk-iyS29RuhI_FjT03oDCnmo7WOT1dolyEZ3qHuHoKXs/s400/2018_11_21+C+with+her+OT.png" width="244" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">C getting OT at home</span></td></tr>
</tbody></table>
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">I had resigned myself to the possibility that C.'s hydro days were over and resolved to try just one more session today before cancelling her upcoming ones.</span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP0UG27yb82dMe-ZhI4Fvb-3526JckSGy-7IiOfFDPbqS_y0mk4-oimWBLi92lb6kfU2UB9UTaUnVPGEFxc2syzLEOkcBFer_rk-iyS29RuhI_FjT03oDCnmo7WOT1dolyEZ3qHuHoKXs/s1600/2018_11_21+C+with+her+OT.png" imageanchor="1" style="background-color: transparent; clear: right; color: #0066cc; float: right; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 16px; margin-left: 16px; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP0UG27yb82dMe-ZhI4Fvb-3526JckSGy-7IiOfFDPbqS_y0mk4-oimWBLi92lb6kfU2UB9UTaUnVPGEFxc2syzLEOkcBFer_rk-iyS29RuhI_FjT03oDCnmo7WOT1dolyEZ3qHuHoKXs/s1600/2018_11_21+C+with+her+OT.png" imageanchor="1" style="background-color: transparent; clear: left; color: #0066cc; float: left; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-right: 1em; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: inherit;"></span><span style="font-family: inherit;"></span><br /></a><br />
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">Well, lo and behold, will miracles never cease, Hallelujah and all the rest - C. decided to float and kick today! More impressively than ever.</span><br />
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">The icing on the cake was a productive OT session yesterday. (We've had a couple of wasted ones thanks to seizures or post seizure exhaustion). </span><br />
<div>
<span style="font-family: inherit;"></span><br /></div>
<div>
<div style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<span style="font-family: inherit;">So this time our young, bright therapist watched C. feed herself for the first time. And she threw out this creative idea: instead of our holding her wrist in between spoonfuls as we do, she advised us to just fill the spoon avoiding any contact with C.'s hand. </span></div>
<div style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<span style="font-family: inherit;"></span><br /></div>
<span style="font-family: inherit;">If she doesn't, then put the spoon in her mouth independently; we are to gently tap the back of her hand. </span><span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: inherit;">The goal is to progress to a mere verbal reminder. She stressed how important it is to help C. maintain this skill.</span> </span></div>
<div>
<br /></div>
<div>
Of course, I didn't need that reminder. Each of C.'s tiny skills C. is priceless.</div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-62310363828358418892018-10-14T06:38:00.001+01:002018-10-14T06:47:00.761+01:00On vomit and the vicissitudes of hospitalization<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOdGkbN7IsL9XFUQPLlxisHVjg6KEtAL_TVpif2hq4K1wtFma06LBp7JXZTZQY9b1PQm_kJniUeJny6NRRT-AeFCGvcRUT2pUrxM-vuv9qMMP-9fGoAUq1itoGDlKccmzN1P4U8pt1eWY/s1600/2018_10_14+Suppisitories.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="154" data-original-width="216" height="142" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOdGkbN7IsL9XFUQPLlxisHVjg6KEtAL_TVpif2hq4K1wtFma06LBp7JXZTZQY9b1PQm_kJniUeJny6NRRT-AeFCGvcRUT2pUrxM-vuv9qMMP-9fGoAUq1itoGDlKccmzN1P4U8pt1eWY/s200/2018_10_14+Suppisitories.png" width="200" /></a></div>
Sunday, October 7<br />
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<br /></div>
<div>
I'd hoped we could keep these hospitalizations down to annual events but didn't manage that. </div>
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<br /></div>
<div>
C. suddenly began vomiting copiously yesterday. We tried caring for her at home. On her pediatrician's advice, we tried <a href="https://www.nps.org.au/medical-info/medicine-finder/pramin-tablets" target="_blank"><b>Pramin</b></a> suppositories. He said that with no fever or diarrhea, she wouldn't dehydrate overnight. </div>
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<br /></div>
<div>
But the med had no effect. The gushes of liquid vomit kept coming at two-hour intervals. Horrific doesn't come close to decribing that night. By morning, there were strands of brown blood in the vomit so the question of what to do was a no brainer. </div>
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<br /></div>
<div>
So here we are back in the ER, 11 months after C.'s last hospitalization. </div>
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<br /></div>
<div>
So far, she's weathered a chest X-ray and a 12-hour struggle to get urine via a catheter. (An incredibly incompetent nurse couldn't get any urine even though C.'s on a fluid drip. Nurse on the next shift collected it with ease.) Temporary predictable diagnosis: another <a href="https://www.webmd.com/children/if-your-child-gets-a-uti" target="_blank"><b>UTI</b></a>. </div>
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Now I'm at a loss as to how to prevent them. We had to stop giving cranberry juice several weeks ago because it seemed to cause vomiting. Should we now resume that, perhaps in a more diluted form?<br />
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Tuesday, October 9</div>
<div>
<br /></div>
<div>
Here we are, finally, in a proper ward (where we waited several hours in the corridor for a room).</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4E6cIL1fzBG1NkRVribfXnE0npFspo-vvaH2kx-MomkzWpE_THrArWgpiVFnS_fJOJOu256ZNFi99UTkmyBWb43uYLTebl3OJREmuF1ro1LxDTbXBgMP2BVsi-mdAD_JSJ8e_ZDwgm7A/s1600/2018_10_08+In+the+ward+but+no+cubicle.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="259" data-original-width="216" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4E6cIL1fzBG1NkRVribfXnE0npFspo-vvaH2kx-MomkzWpE_THrArWgpiVFnS_fJOJOu256ZNFi99UTkmyBWb43uYLTebl3OJREmuF1ro1LxDTbXBgMP2BVsi-mdAD_JSJ8e_ZDwgm7A/s320/2018_10_08+In+the+ward+but+no+cubicle.png" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">No cubicles available, so we're in the corridor</td></tr>
</tbody></table>
<div>
<br /></div>
<div>
The doctors have done a diagnosis 180°: UTI is now ruled out, replaced with "some infection, somewhere", possibly <a href="https://en.wikipedia.org/wiki/Gastroenteritis#Cause" target="_blank"><b>gastroenteritis</b></a>. That may have led to aspiration of vomit and may also have caused the intestinal bleeding we saw in her vomit. </div>
<div>
<br /></div>
<div>
She's still getting IV <a href="https://pharmacybook.net/controloc/" target="_blank">Controloc</a> (<a href="https://www.drugs.com/pantoprazole.html" target="_blank">pantoprazole</a>) to prevent a repeat of that bleeding although there's no sign of it anymore, not even in her stools. </div>
<br />
Bumped into the neurologist who we believed had dumped us when she ignored our last email around six weeks ago. Turns out she never saw it and is happy to re-enter C.'s life. She promptly ordered a <a href="https://www.radiologyinfo.org/en/info.cfm?pg=bodyct" target="_blank">CT</a> and <a href="https://www.webmd.com/epilepsy/guide/electroencephalogram-eeg" target="_blank">EEG</a>; assured us she'll contact that terrific American neurologist whom we can't consult directly because he doesn't have a practice.<br />
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She also decided to search for info re central fevers and told us she learned it's not uncommon among uncontrolled epileptics!<br />
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C. is off the IV drip and has begun to eat and drink. She's back on her <a href="https://www.drugs.com/vimpat.html" target="_blank">Vimpat</a> which was only available in pill form. (They had <a href="https://www.drugs.com/pro/keppra-injection.html" target="_blank">Keppra</a> in IV form is so she's been getting that regularly). But I haven't resumed the cannabis yet.<br />
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We've missed hydrotherapy - the highlight of C.'s existence - which takes place on Tuesdays. We may also miss the long-awaited delivery of C.'s new wheelchair scheduled for Thursday.<br />
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<div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqk3or3411e48Jxve_eO8xJWbfojRVEQc-6ZYDLW1RJic7sguKROV2KqFsFtAftarDXv9FOFhyphenhyphenp5Woduw5c-ts8xt-3cJfQEBCM0jhlBny6ejbf-9PcaKh_ts2mUj9DlqXUYO4HC2LwNI/s1600/2018_10_10+Getting+EEG.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="144" data-original-width="144" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqk3or3411e48Jxve_eO8xJWbfojRVEQc-6ZYDLW1RJic7sguKROV2KqFsFtAftarDXv9FOFhyphenhyphenp5Woduw5c-ts8xt-3cJfQEBCM0jhlBny6ejbf-9PcaKh_ts2mUj9DlqXUYO4HC2LwNI/s1600/2018_10_10+Getting+EEG.png" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The EEG</td></tr>
</tbody></table>
Wednesday morning, October 10</div>
<div>
<br /></div>
Back on the drip because after a batch of heavy seizures, C. was unable to eat and could drink only a bit. A CT was done this morning. Not clear why it was ordered but haven't heard any results yet in any case. UTI has been ruled out even more emphatically today. It's not looking as though we'll have C. home in time for the wheelchair delivery tomorrow.<br />
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<div>
And here are a couple of gems from the medicos:</div>
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<br /></div>
<div>
Nurse about to finish her shift comes around with next shift's nurse. I hear her mention that she had taken C.'s temperature which was slightly elevated but that she decided against <a href="https://www.drugs.com/tylenol.html" target="_blank">Tylenol</a>. I told both nurses that C. is seizing badly and could actually benefit from Tylenol for her fever. Then the nurse about to leave delivers her pearls of wisdom: "You see, she's seizing badly because her epilepsy isn't controlled. It needs to be brought under control. She needs to see a neurologist." To me: "You should consult a neurologist." </div>
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<br /></div>
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I regret that I didn't ask her: "Why? Do you think she might have epilepsy.?"</div>
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Wednesday night, October 10</div>
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<br /></div>
<div>
I witnessed an argument between two doctors at the station which was situated immediately outside our cubicle. I had the curtain open so couldn't avoid hearing one, a male, tell the other, a female: "You're a hussy". The other responded: "Well tell me, do you know the patient's background?" "You ought to tell me it", snarled the guy back at her. "No, you're supposed to know it, " she repeated "Why don't you just do your job?" The guy shot back adding once again, "You're a smartass." </div>
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<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi7XfYwoh4tZjjupMTUdsXFWX-L56KXleTE9CoNZTMBWSqXJRzsw7ezVo-7znODU7u2WlLnVRkSKKLvoNaclsvxW1Qf2Ho5rdDNB0ws_VaTg0_K9pzcu_DiYyu0jjKSmQ7Y761tCpbPTs/s1600/2018_10_14+In+the+new+wheelchair.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a>Help, many lives are in the hands of these nincompoops!<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi7XfYwoh4tZjjupMTUdsXFWX-L56KXleTE9CoNZTMBWSqXJRzsw7ezVo-7znODU7u2WlLnVRkSKKLvoNaclsvxW1Qf2Ho5rdDNB0ws_VaTg0_K9pzcu_DiYyu0jjKSmQ7Y761tCpbPTs/s1600/2018_10_14+In+the+new+wheelchair.png" imageanchor="1" style="background-color: transparent; clear: right; color: #0066cc; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><img border="0" data-original-height="330" data-original-width="216" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi7XfYwoh4tZjjupMTUdsXFWX-L56KXleTE9CoNZTMBWSqXJRzsw7ezVo-7znODU7u2WlLnVRkSKKLvoNaclsvxW1Qf2Ho5rdDNB0ws_VaTg0_K9pzcu_DiYyu0jjKSmQ7Y761tCpbPTs/s320/2018_10_14+In+the+new+wheelchair.png" width="208" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First seating</td></tr>
</tbody></table>
</div>
<div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br /></div>
That same male doctor had earlier declared when the Hubby approached him: "Whatever you're about to say I'm not interested unless it's urgent. I only deal with urgent matters."<br />
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<div>
Thursday, October 11</div>
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<br /></div>
<div>
C. will be released today. CT negated anything alarming and the EEG showed no change since the last one. </div>
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<br /></div>
While she isn't eating or drinking much, I nixed the nurse's suggestion of a feeding tube. On Tuesday, a speech pathologist assessed her swallowing skills and they passed muster. So I figured it was best to just persevere with feeding by mouth. The less intervention, the better.<br />
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Thursday night</div>
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br /></div>
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Home! And, the icing on the cake is the new wheelchair is here too! Here is C. over on the right. Sitting in it for the first time:</div>
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<span style="background-color: white; color: #004000; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"></span><br /></div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-71620046586473123392018-10-05T13:26:00.003+01:002018-10-05T13:26:49.248+01:00Back to hydro - and doctor problems<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTM9lnuUC_XYG9NEZXSnC0HxsWehdAsuhAN8ikSn_DUAwW9pDBGlhU_w7E3vjLHNTiH94zSJ-XXXq8a_EqHTKvH7csflvscMTtuh84BJdVG6fJEY_lfPgn0yZNivP93yEfl89d82EZFuQ/s1600/2018_09_30+SM+C+does+hydro+140449.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="432" data-original-width="302" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTM9lnuUC_XYG9NEZXSnC0HxsWehdAsuhAN8ikSn_DUAwW9pDBGlhU_w7E3vjLHNTiH94zSJ-XXXq8a_EqHTKvH7csflvscMTtuh84BJdVG6fJEY_lfPgn0yZNivP93yEfl89d82EZFuQ/s400/2018_09_30+SM+C+does+hydro+140449.png" width="278" /></a>C. finally scored one hydro session during the month of her therapy pool's closure. I had hesitated to give her one because the water in the available pool - it's the one I swim in - is much colder than C.'s therapy pool. But our past experiences there, about a year ago, usually proved worthwhile nonetheless. </div>
<div>
<br /></div>
<div>
So with E. and the Hubby we gave it a shot on Sunday. </div>
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<br /></div>
<div>
The first ten minutes she was tense, limbs bent and unable to float on her own. I was tempted to admit defeat. But eventually she floated independently, kicking slightly - admittedly shivering - but thrilling us all nonetheless for around twenty minutes. </div>
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<br /></div>
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On the seizure front, we're still seeing somewhat of an improvement with the raised <b><a href="https://www.drugs.com/vimpat.html" target="_blank">Vimpat</a></b> dose though not the sort that halts the hunt for better control. </div>
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<br /></div>
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But for now we're occupied with trying to get a neurologist to submit the paperwork required by our health fund for renewal of our Vimpat authorization. It expires on November 24th and the paperwork involves a neurologist filling in forms along with numerous other signatures, a time consuming process. </div>
<br /><div>
The problem is we're getting the email silent treatment from the two neurologists who have most recently treated C. One is the doctor who recommended adding on <b><a href="https://www.sideeffects.com/frisium-clobazam.html" target="_blank">Frisium</a></b> while also recommending that we see an epileptologist since epilepsy isn't her area of expertise (she's a headache specialist!) We notified her that we'd heeded her advice re an epileptologist but not the Frisium tip. We were pleading with her to contact a senior neurologist who had helped us immeasurably in the hospital last year. </div>
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No response from her. Apparently she had her heart set on C. getting Frisium - which would have brought her ant-epileptic tally three! (Excluding cannabis.)</div>
<br />The second neurologist ignoring us is the epileptologist we first saw last month - and paid out-of-pocket for the privilege. She is the one who urged us to raise the Vimpat dosage. And now she won't help is out with the Vimpat authorization paperwork!<br /><br />Is there something in the water these neurologists drink that makes them so heartless?The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-20910059991353187572018-09-28T16:07:00.003+01:002018-09-28T16:07:44.467+01:00Nieces, nephews and one huge hareC. joined us at her niece and nephew's new home on Tuesday. I wish we could bring her more often to family gatherings but the Hubby's aging back isn't amenable to that.<br /><br /><div>
The highlight of the Tuesday's visit was C.'s tete-a-tete with the latest addition to my daughter's family - "Rabbit" (no name yet). Her hutch is stashed in the utility room and she never ventures out on her own so I had forgotten all about her. Fortunately I remembered her in time for C. to enjoy a lengthy pet therapy session. </div>
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Here she is with what I'm certain is a look of concentration and intrigue:</div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEO0qLEVUJaKxSapQR3foUpAlBbZvcHJlLt-VV85DD9GPFKYISAmXDZXpd2MmnsSq8ApLOf-P8gwBYeh1px9q824zuedOWBZ0x_XcUIhGAcXinHxRxMT8F68_najQ8kHDD9tSvj02MPYI/s1600/2018_09_28+SM+C+and+rabbit.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="459" data-original-width="344" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEO0qLEVUJaKxSapQR3foUpAlBbZvcHJlLt-VV85DD9GPFKYISAmXDZXpd2MmnsSq8ApLOf-P8gwBYeh1px9q824zuedOWBZ0x_XcUIhGAcXinHxRxMT8F68_najQ8kHDD9tSvj02MPYI/s320/2018_09_28+SM+C+and+rabbit.png" width="239" /></a></div>
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Her nephew is in the background looking adorable as always. </div>
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There were other nieces and a nephew in the room and I have no doubt their noise, laughter and action benefitted C. immeasurably. </div>
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And this news is <i>strictly confidential</i>: C.'s seizures increased immediately after I added the extra 50 mg of Vimpat to the morning dose one week ago. (I had increased the night-time dose 2 weeks ago). But three days later she settled back down to about three a day, with only one bout of fever and seizures. Could it be her body needed to adjust to the Vimpat change?</div>
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Remember, seizures have been <b>Scientifically Proven Susceptible</b> to superstitions. So improvements are definitely not to be circulated.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-39382061190694347672018-09-23T11:36:00.003+01:002018-09-23T11:36:52.395+01:00I wanna hold your hand<div style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
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I haven't written about C.'s occupational therapy sessions which have been ongoing for two months. </div>
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A few weeks ago we had one fiasco with C. in the throes of a string of seizures when the therapist arrived. (I had called to notify her but she was already on her way). </div>
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Since then, though, we've had a few productive ones. </div>
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Here is C. (above) getting her ligaments gently stretched at the session's start to maximize her range of movement:</div>
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And here below she is working on gripping an object while therapist, N., shakes her hand. </div>
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She is improving at closing her hand to grasp an object and then, on demand, opening her hand to release it.</div>
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Modest goals, but enthusiastic responses from all three of us - the therapist, C.'s caregiver, E. and me. You've got to admit, we're a realistic bunch.</div>
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We had about two weeks of relative relief from seizures (i.e. only about three a day) which I attributed to the rise in the nighttime Vimpat dose. </div>
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But here we are, after raising the morning dose too and the seizures are back with a vengeance. </div>
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We still haven't managed to check the Keppra blood levels so maybe therein lies a solution. The HMO nurse tells us that test will only be available in about a week. </div>
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No hydro photos because the therapy pool is also closed for a few weeks. </div>
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Excitedly awaiting delivery of the new wheelchair on October 8. </div>
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The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-9523032043119646422018-09-09T16:40:00.005+01:002018-09-12T18:38:37.306+01:00New neurology nightmares<div>
Last week, we went to a new neurologist who specializes in epilepsy. Here is C. at the hospital while we wait to be admitted to the doctor's office:</div>
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We had to pay out-of-pocket because in the public clinic, the earliest appointment with her was April 2019. But C. is doing so badly seizure-wise that we felt this was urgent. </div>
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The doctor gave us an hour and a half during which we covered C.'s history, symptoms and functioning. Afterward the doctor gave us her thoughts and recommendations. This probably sounds rather routine but, trust me, in our experience, it's a rarity. We really felt that we got our money's worth. <br />
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Of course, that's not to say we left her office uplifted. There was much for us to digest and ponder. So here goes:<br />
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<b>Med changes</b><br />
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First, she recommended raising one of the two anti-epileptics C.'s on: the Vimpat by 50 mg/dose. I already did that tonight. In two weeks we raise it in the morning as well. She said the current dose is considered low. Who knew? </div>
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She also advised doing a blood test to check the level of the second drug she gets, Keppra. The current dose of that drug - 1,500 mg twice/day - is also deemed low. Likewise, who knew? Our previous neurologist never told us that. In fact, at our last visit she had recommended adding a third anti-epileptic! Frisium! That's one of the benzodiazepams that rendered C. semi-comatose during her hospitalization back in November 2017 </div>
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Btw, that incompetent neurologist never bothered to answer our last email. In it, we mentioned, inter alia, that we did not add the third med, Frisium, as she had instructed us to do. I suppose she wasn't too pleased with that. Back to the new neurologist: <br />
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<b>Video EEG</b></div>
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We've never done one and she'd like us to. So some time in the coming weeks, C. will be hospitalized for 24 hours. Here's hoping we glean some helpful revelations. Our HMO has already authorized the expense.</div>
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<b>C.'s frequent fevers</b></div>
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She wasn't impressed with the exclusion testing that C.'s pediatrician did. As I've written, he did a thorough clinical exam and blood test before concluding that the fevers she's now getting - they max at 100.6 rectally - are not caused by an infection. Ergo, they must be central. </div>
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This neurologist said that those exams weren't enough to reach that conclusion. She said she's seen patients who seize more than C. but never get central fevers. She suspects there could be some underlying condition, perhaps related to her life-long thinness, triggering the fevers. She said the pediatrician should have referred us to a specialist - she couldn't specify but threw out endocrinologist and gastroenterologist as possibilities - who could run tests to determine whether in fact there is another cause for the fevers. </div>
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Whew, not exactly an inviting task. </div>
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<b>VNS</b></div>
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She strongly urged having a new VNS implanted. The one inside C. dates back to December 1999 and never helped her one iota. She advises trying it again. Of course, this time we'll have somebody better equipped to calibrate it afterwards. </div>
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Back in the year 2000 there wasn't any such expert in this city. (I know, I know: so why did we implant it then anyway? That was just another of our many blunders.)</div>
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But removing this old one isn't straightforward we've been told because the wires are coated by now with skin - or something along those lines. Also, the last neurologist who pushed a VNS replacement was the one who destroyed C.'s liver with Valproic Acid but refused to own up to it. Instead she pointed a finger at the cannabis! Which brings me to this new doctor's take on - </div>
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I had braced myself for negativity so I was relieved when she just told us that C.'s CBD dose is very high. Which would explain why the government authority refused to renew our license for 11 bottles (= 100gm) per month. Instead we were given one for only 10 bottles.</div>
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She said C.'s current dose would be more efficacious in the form of vapor. It's absorbed far more quickly than the oil C. now takes. I haven't gotten around to inquiring about the availability of this form at our supplier. My hunch is we'll need to switch to another supplier (the one that the doctor recommended); not a process I relish. <br />
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<b>Hydro</b><br />
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This week yielded a brief respite from frequent seizures and fevers during an extra long hydro session where C. just rocked. The proof is in the photo above.</div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-55599018124699640232018-08-30T07:16:00.000+01:002018-09-01T21:34:38.093+01:00Progress on the wheelchair front<div>
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I am thrilled to report progress this week on the wheelchair front. </div>
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We've endured C.'s current one for some six years. It was the concoction of the so-called seating expert at C.'s old school who selected it and all its accoutrements single-handedly. And believing her title was deserved, we blindly followed her advice.</div>
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It was clear from day one of C's sitting in it that our "expert" was actually clueless. After every seizure, C. slides down. Like this:<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIgZruhkgCmxiqhEx7UulOM5ABhGBYXTyYH6izdkLZ_ujh-gIOtjGSLTsIL_RxlU69Y1i-80pWaZYIempagl5ThU20BHIeNM7zTDAyYs0C2awCsuzWOEN_m-FnDHZzglEZ6zGTAyJWhro/s1600/2018_09_01+C+sliding+out+of+her+chair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1125" data-original-width="1255" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIgZruhkgCmxiqhEx7UulOM5ABhGBYXTyYH6izdkLZ_ujh-gIOtjGSLTsIL_RxlU69Y1i-80pWaZYIempagl5ThU20BHIeNM7zTDAyYs0C2awCsuzWOEN_m-FnDHZzglEZ6zGTAyJWhro/s320/2018_09_01+C+sliding+out+of+her+chair.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sliding out of her current chair</td></tr>
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And even when calm, she gradually slides down over time. When the Hubby is out of the house, I am forced to leave her in that uncomfortable position because I'm not allowed to lift her weight (lest I wreck my pelvic organ surgery). <br />
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So we're all eager to finally acquire this new Italian wheelchair which promises to prevent sliding via its slight tilt backwards. </div>
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According to the importer's rep, who brought a demo chair to our house, this tilt will also readjust pressure spots, thereby relieving to the ones that are normally plagued. He assured us there's a good chance we'll have the new wheelchair delivered by the time the Hubby leaves for his brief overseas trip in November. Hoping hard.</div>
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On the swing front, no such good news. The local person we've been referred to by the overseas manufacturer is on vacation now. But an associate of his told the Hubby that in the past they've encountered opposition from another municipality, similar to the sort ours dished out - see <a href="https://thesoundofthesilent.blogspot.com/2018/05/frustration-overflow.html"><b>Frustration overflow</b></a>.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmVXj0L0oD0lFMABhfKqwdquG9CoZDQ6hp8vVMHs8Uibe542BGbDBGmVQ7RuJKHtusboDvFCLNtzpOoh5VzPgaP8dl3XMu9ge4wBfDrs245d82RGMzi8m6twuiwMW9fWkvWK3X15W73CI/s1600/2018_08_30+Hydro2+with+tongue+sticking+out.png" imageanchor="1" style="background-color: transparent; color: #0066cc; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-left: auto; margin-right: auto; text-align: center; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><img border="0" data-original-height="217" data-original-width="281" height="245" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmVXj0L0oD0lFMABhfKqwdquG9CoZDQ6hp8vVMHs8Uibe542BGbDBGmVQ7RuJKHtusboDvFCLNtzpOoh5VzPgaP8dl3XMu9ge4wBfDrs245d82RGMzi8m6twuiwMW9fWkvWK3X15W73CI/s320/2018_08_30+Hydro2+with+tongue+sticking+out.png" style="cursor: move;" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hydrotherapy - notice the tip of her tongue</td></tr>
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />
Her impression was that some folks there simply don't want children with disabilities frequenting their playgrounds.<br />
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I managed to attend C.'s weekly hydrotherapy session yesterday.<br />
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Normally, I'm with grandchildren at that hour so E., her caregiver, is with her on her own and sends me photos and videos. But seeing it in real time is such an very uplifting experience. The pool is still the only venue in which C. thrives.<br /><br />Yesterday she seized right before entering the pool and right afterward. But during those 35 minutes of floating, she was the epitome of calm and contentment. We were even treated to several of her "smiles" - the tip of her tongue sticking out as the photo above shows.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmVXj0L0oD0lFMABhfKqwdquG9CoZDQ6hp8vVMHs8Uibe542BGbDBGmVQ7RuJKHtusboDvFCLNtzpOoh5VzPgaP8dl3XMu9ge4wBfDrs245d82RGMzi8m6twuiwMW9fWkvWK3X15W73CI/s1600/2018_08_30+Hydro2+with+tongue+sticking+out.png" imageanchor="1" style="-webkit-text-stroke-width: 0px; background-color: transparent; clear: left; color: #0066cc; float: left; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-right: 1em; orphans: 2; text-align: center; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></a></div>
The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-54147506343707462272018-08-23T10:44:00.000+01:002018-08-23T10:44:13.721+01:00Why my daughter stays at homeI've been learning about my fantasy adult day program. Turns out, it is a reality in LA for young adults like C. I'm happy for <a href="http://elizabethaquino.blogspot.com/" target="_blank">my blogger-friend, <b>Elizabeth</b></a>, whose daughter, Sophie, was admitted to the program after a wait of over a year.<br />
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But reading about it also makes me apoplectic. I mean, why don't we have something even remotely similar in these parts?</div>
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When C. was about to "graduate" at the age of 21, her school told us about three day programs available in our city. The Hubby and I visited one of them together and he checked out a second. We were the told the third was similar to the one he saw alone. How would I best describe them all? </div>
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Beneath all contempt.</div>
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It was a no brainer - we chose to keep C. at home. But, while we knew that none of the programs provided even the basics we didn't have a clear vision of what they could and should offer. Now, after reading about the one in LA that Sophie attends, we do. </div>
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But before I share those details, here was my reaction to the one I checked out:</div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><b><a href="http://thesoundofthesilent.blogspot.com/2016/07/mea-culpa.html">Mea culpa</a></b><br />I dutifully submitted to a tour of a day center for adults with disabilities. It's the one that seemed to be the least of the three evils available in our city. <br /><br />The social worker at C.'s school escorted us and the Hubby drove since I was still wary of taking the wheel after my cataract surgery. It was his second visit to the place and he had earlier conveyed to me in no uncertain terms its awfulness. The idea was to forget all that and assess it with an open mind. </span><br />
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Despite serious efforts to do that, I was, by the end, to put it delicately, very unimpressed. Both by what we saw and what we were told by the director. </div>
<br />The small room we were shown was filled with eight people sprawled out on thin mats - young women C.'s size and age side by side with middle aged men. Two aides were on duty. That translates into two mere mortals changing the diapers and clothing, escorting to the toilet whoever is capable, and feeding two meals per day to eight entirely-dependent individuals. <br /><br />Needless to say, that is a totally consuming challenge even for two highly trained employees. And these aides by no stretch of the imagination fit that description.<br /><br />So there isn't a snowball's chance in hell that they could find the time, energy or desire to do what the director assured us they do - namely, to exercise their charges throughout the day according to instruction they've received from the physiotherapist<br /><br />Now I fully understand why the director told us that tall tale: Because there are only two physio-therapists for the entire center who give each charge a half an hour of therapy per week! When I told her it's a shame that her center is so under-financed and wouldn't it be wonderful if the government subsidized it as generously as it does institutions, she said: "It wouldn't help. Because it isn't a question of finances. There's just a dearth of therapists willing to work with people as disabled as these."<br /><br />I posited that a generous salary would undoubtedly entice more applicants. Made no headway.<br /><br />In any case, on both this and the Hubby's previous visit, everyone in the room was lying down on mattresses in mid-morning. Unlike the last time, there was a row of lit candles in the aisle which, we were told, had been placed there for the "yoga session". Hmmm. I have my doubts about yoga and people with disabilities like C's.</span><br />
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And now to explain my <a href="https://en.wikipedia.org/wiki/Mea_culpa"><b>mea culpa</b></a>:</div>
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On our way out of the room, and in direct contravention of the Hubby's request, I took a photo of the class. A second after we left it, one of the aides summoned the director back in and tattled on me. The director chastised me and explained that it's an invasion of the privacy of the people cared for there. I showed her the photo which features no faces. <br />
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She was appeased, didn't demand a delete and in turn reassured the aide. <br />
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I was then rebuked by the Hubby and by the social worker who both maintained that I had, in effect, been magnanimously invited into somebody's home and had betrayed their hospitality. The director would now be suspicious of my intentions in visiting there and would fear my going to the media to report on the visit.<br />
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I apologized to everybody but did half-heartedly present this contrary view. The day centers are a service offered by our government. So why forbid a visitor's recording of what's happening behind their closed doors. After all, the charges cared for there are incapable of that. And oral testimony on its own isn't worth very much; it's so easily denied. With faces absent or blurred, where's the crime in a photograph?<br />
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Readers, what do you think? I'd appreciate your input.<br />
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In LA, the personal aides are assigned to each participant. Home caregivers are invited to help in their training. The participants who are capable, do community volunteer work. Those who too impaired for that, are taken via public transportation on day trips to museums, parks and beaches. They also receive a range of therapy sessions and coaching in Daily Skills. Then there's the socializing with fellow charges. Need I say more? </div>
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One added detail: it's publicly funded. And while our government's fiscal situation is dire in comparison to LA's, it does somehow manage to subsidize several large, closed institutions to the tune of thousands of dollars per resident per month. While those who remain at home with their families are fed the crumbs of abysmal programs like the one described above.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-29503751868459628522018-07-31T15:39:00.000+01:002018-07-31T15:39:22.605+01:00Time for a new neurologist<div>
We visited C.'s neurologist last week. </div>
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Just a reminder: this doctor was <a href="http://thesoundofthesilent.blogspot.com/2017/11/a-dismal-discharge.html" target="_blank"><b>on the team</b></a> that rendered C. semi-comatose with a barrage of drugs in November 2017 to combat her status epilepticus. Her specialty is the treatment of headaches. We had no clue about that when we began bringing C. to her. She came highly recommended by C.'s pediatrician.</div>
<br />At this latest visit, we related C.'s fever and seizure woes to her and showed her a video of C.'s aquatic skills. We noted that the raised dose of Keppra and the addition of Vimpat, which has been C.'s regimen since hospitalization, has left her in the same state she was in pre-hospitalization. No improvement whatsoever. We'd like to try her on Keppra alone again, we said.<br /><br /> The doctor then told us we ought to consult an epileptologist. For me, that translated into: "<i>This case stumps me; it's not my field of expertise. Try an expert.</i>" No news to us. But we reminded her that the neurologist who helped rescue C. from that near-coma in 2017 and is a colleague of hers, advised us to use her as a conduit to him. We can't consult him directly because he doesn't have a practice in this country. He earns his living from home by assessing scans from overseas patients and advising treatments. And then, once a month he spends a week in the neurology ward where C. was hospitalized last year.<br /><br /><div>
After the neurologist assured us she would seek that other neurologist's input, she added, almost as an afterthought: "I have a feeling that the Frisium we gave her in the hospital would help her. Add it on." </div>
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The Hubby noted we don't want any more benzodiazepams in C.'s life and inquired whether Frisium is in that drug category. The doctor conceded that it is - but that "We'll start her on a low dose and raise it very gradually so it shouldn't cause her to be sleepy the way it did in the hospital". </div>
<br />"Sleepy" is a generous term to describe C. in the hospital. As I can't overly stress, what she most closely resembled was semi-comatose.<br /><br />The doctor claims her goal is to rise to a therapeutic level of Frisium and only then begin to wean her off Vimpat. She left us with instructions on introducing the Frisium. But none for the weaning of Vimpat.<br /><br />Needless to say, we haven't filled the prescription for Frisium and have booked an appointment with that specialist epileptologist.<br /><br /><div>
It's nearly a week since the visit but no word from this neurologist about her consult with the other neurologist. I didn't really expect her to, though.</div>
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<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Through it all C. has somehow managed to advance her walking to this: here (above) is some evidence from a few nights ago.</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-40170335905707885112018-07-29T20:05:00.000+01:002018-07-29T20:05:12.634+01:00This terrific therapy needs a new name<div>
To be perfectly clear, even in my wildest fantasies I don't see C. acquiring any sort of occupation. </div>
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But, misnomer aside, we finally re-introduced Occupational Therapy to C.'s regimen this week. She hasn't had it for years. Even while still in school, she rarely received any and never with positive results to show. </div>
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We've been accepted into a pilot project sponsored by a local organization which provides participants with a personal basket of therapies selected by their parents and funded by the sponsor. <br />
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The therapist we selected was the only one we could locate in this city who gives receipts and was willing to work in our house. </div>
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I was initially disappointed when she entered on Monday evening for the first session: Young, bubbly, her mouth emblazoned with dark red lipstick, she didn't appear up to the challenge. But that impression dissipated seconds later when she warmly approached and addressed C. </div>
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She first spoke the local language. But when I pointed out that C. hears English almost exclusively, she switched to that with ease - though she is far from fluent in it. </div>
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She took a history, examined C.'s arms and hands, noting what she termed their "surprisingly good condition". Then asked me what C. is capable of doing with her hands. I showed her C.'s pointing for "yes" and putting a spoonful of food to mouth. She gave the performance rave reviews. Despite my engrained cynicism, I really believe her praise was genuine. </div>
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Oh, and while I prepared C.'s food for the eating demo, the woman grabbed the opportunity to have C. pop some balls into a cup. </div>
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Finally, she laid out her goals for C. Four very modest, realistic skills she plans to try and impart. She warned me that they will take time and perhaps only half will be achieved. I think she was amazed by my enthusiastic response.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0