Wednesday, September 16, 2015

Unwelcome weight loss

During the summer vacation last month and, again, when hydro-therapy was cancelled last week, I gave C. her showers at home.

Besides being strenuous,  the experience was traumatic. That's because, to put it bluntly, C. has grown gaunt. The real-deal gaunt; the anorexic-gaunt.

Those weeks when she was barely eating (here and here for instance) have clearly taken their toll. I decided to add something to her modified Atkins diet that might add a bit of fat to her skin and bones. First, I tried red quinoa mixed in with her meat and vegetables.. She rejected that out of hand. For three meals she refused to lift the spoon and, when I myself fed her, she kept the stuff in her mouth for ages before swallowing despite many swigs of water to wash it down.

I admitted defeat and ditched the quinoa. I've now switched to whole sesame tahina. She seems more amenable to this and spoon-feeds herself again, albeit very slowly. Each meal takes a half to two hours.

Here is C.'s gauntness in all its glory:

And here is her seizure-related gash healing very nicely:

I can't wait to have those whisker-like stitches removed, though.


Elizabeth said...

Sophie has gone through several anorexia-like periods -- several times due to a drug she was one and twice when she was diagnosed with ESES. Has C every been checked for that? The only way you can get a diagnosis is to have an overnight EEG that proves the person is seizing for at least 90% of slow-wave sleep. It caused global regression for Sophie, including anorexia. Ugh. Let me know if you need more information and discard if you already know all about this!

The Sound of the Silent said...

No discarding of this message: ESES is a new one for me. Thank you so much for enlightening us. How was Sophie treated for it? From what I've just Googled, it's usually with the very benzos we're now weaning off. Were you told it tends to have passed by puberty? Google also mentioned that. I'll pursue it with our neurologist and keep you posted.

Elizabeth said...

There are three treatments for ESES: benzos, steroids and IVIG. We chose door number three, and the intravenous immunoglobulin resolved the EEG. She had infusions over a six month period with no side effects. Again, feel free to email me if you want to talk at length about it.

The Sound of the Silent said...

Thanks so much for all this help, Elizabeth. We tried IVIG once many years ago. After one dose, the neurologist at the time declared it ineffective. We'll suggest sticking with it for a longer period, the way you did.

The thought of doing the overnight EEG is daunting for me, though, so I'll need to work on psyching myself for that if the Dr. orders it.

P.S. That family portrait of three posts ago was stunning. In particular, Sophie who looked at once content, insightful and pensive. Definitely one to frame.

Elizabeth said...

The infusions would be for five to eight hours, twice a week, every six weeks or so, if I remember correctly. The thing about ESES is that you are basically treating the EEG -- meaning the EEG will return to its baseline (however messed up that baseline is to begin with!), and will no longer show the slow-wave sleep spikes or status. So, just treating with IvIg wouldn't be the way you're treated unless you "qualify" for the diagnosis of ESES.

The Sound of the Silent said...

Thanks for this further clarification, Elizabeth. We have a neurologist's appointment soon and will raise ESES then.

C.'s EEG's have always been horrific, though I understand ESES involves a specific type of irregularity.

In the meantime, her appetite has improved and she's eating somewhat more which is mildly reassuring.