On Status Epilepticus, the status quo and my status mentis

I've written these words several times in the past few minutes to family members: 

"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."

That was me losing it on Thursday night. Much of Friday night saw me similarly frantic. 

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.

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. 

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.*

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"'. 

It's amazing what a few days of status epilepticus 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.

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%.

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.

* 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.

C. gets dumped

Last week's hydro and C. is with the replacement therapist

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.

I've posted numerous photos and videos of her hydro performances. And we couldn't ask for a better therapist.

So I was blindsided three weeks ago when that therapist informed me she would cease her work with C. and swap with another therapist.

While I do consider the one she's swapping with to be competent, she can't compare with her previous one.

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".

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.

She said she hopes I'm not offended.

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.

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.

But the bottom line is that it stresses her now.

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.

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".

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.

Hoping they don't ditch her any time soon.

I wanna hold your hand

I haven't written about C.'s occupational therapy sessions which have been ongoing for two months. 

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). 

Since then, though, we've had a few productive ones. 

Here is C. (above) getting her ligaments gently stretched at the session's start to maximize her range of movement:

And here below she is working on gripping an object while therapist, N., shakes her hand. 

She is improving at closing her hand to grasp an object and then, on demand, opening her hand to release it.

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.

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. 

But here we are, after raising the morning dose too and the seizures are back with a vengeance. 

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. 

No hydro photos because the therapy pool is also closed for a few weeks. 

Excitedly awaiting delivery of the new wheelchair on October 8. 

Febrile fun and games

C. kicking really well during
last week's hydrotherapy session

C. has been quite unwell these days.

I always feel ridiculous describing her that way when the fact is she is always "quite unwell". But what I mean is she's been running fevers of over 39° C and vomited several times yesterday.

Needless to say, to cap it all off, there were seizures. But, oddly, the seizures weren't any more frequent than with milder fevers. In fact, they subsided without the lowering of fever.

So today she'll be checked by her pediatrician who will tell us whether she can go to hydrotherapy. Tuesday is the one day that our local therapeutic pool admits females. We are all eager to see her in the water, the only context where she flowers.

Last week, while back floating, she kicked vigorously with both legs for the entire session!

Still no word from the local Liberty Swing distributor who promised us he'd deal directly with the reluctant municipality.

And still haven't located an Occupational Therapist or a Speech Therapist experienced in cases like C. who gives receipts. Without names we can't proceed with the pilot project we've been accepted to. The idea is to provide C. at home with the services and therapies she would receive were she warehoused in an institution. Currently, in this country, she can't.

UPDATE: After a thorough exam today, the pediatrician has declared C. fit for hydro. While he couldn't find a cause for her fevers, he recommended doing some blood readings, testing her urine to eliminate UTI and having her elbow wound seen at the wound clinic to eliminate infection. He doubted either is causing the fever. If the tests prove negative, we'll be left with a diagnosis of neurological fever that has climbed higher than ever before. Did I really believe there were improvements on the horizon?

A great school - but not for the students

I gave a lift yesterday to a woman I recognized from C.'s "alma mater".

Of course, during the ride I asked her about the state of the school since C.'s graduation. It had switched, at that time, from a private to a government-run school so I was curious about the impact that ensued.

The woman raved about the change. When I pressed her for details, she cited "benefits and gifts to the staff" noting that. teacher's aides, for instance, now work only five instead of six day weeks and only until 2:30 pm.

All in all, she gushed, things are great.

Then I asked her how the administrative switch had affected the children. Were they receiving more therapies, for instance? (While C. was there, the number of therapies per week was piddling. At best, one half hour session per week of physical, occupational and speech therapies).

"No", she divulged readily. "They receive fewer therapies."

"But everybody seems pleased," she added. "I don't hear any parents complaining".

I choked, silently... This woman was unabashedly lavishing praise on the new administrators although the children were suffering.

And those children are entrusted to her care. Not very reassuring, right?

Thoughts anybody?

PS: We didn't manage to get to the neurologist this week as intended. But, for now, we aren't feeling the urgency since C. has grown weary of that mysterious vomiting and has even cut back on her central fevers. The Hubby plans to meet the neurologist next week to discuss strategies for reducing seizures. Yeah, I know, he'll go without C. since she's been thoroughly examined by the pediatrician just last week. Yeah, I know, we never seem to give up the futile fight.

In the dark and groping

Here we are, C. and I (my hand, that is) both struggling. She, to move her fingers on the board and elicit sounds. I to prod her to do that. At times we both succeed. Ever so slightly.

In the world of profound disability, the minutest desired movement is welcome. But sometimes even that eludes us, as you see here.

In this domain, I'm really just groping in the dark.  I rely on whatever meager Occupational Therapy skills I've gleaned from professionals over the past twenty years. It can be an exercise in frustration and futility.

In the dark and groping from Mary Silenti on Vimeo.

The OT's at C.'s school are in the same predicament. They may very well succeed with the less severely impaired children. But when confronted with C. and those like her, they are rather clueless. In the fifteen years she's attended that school, they've achieved nothing with her.

I know that there are OT's out there whose expertise lies in working with profound disabilities. The Hubby and I once hired a pair of them for an hour at great expense. C.'s school lacks the funds to employ them and we couldn't afford to bring them back to our home.

But our government clearly can. If it re-channeled just a fraction of the multi-million dollar budget it lavishes annually on large, closed institutions, to children with disabilities who live at home, this problem would vanish.

And C. might actually press the buttons on her toy board. It's that simple.