Phenytoin, you're fired

That's me, walking C in our kitchen
seven days after we stopped
the Phenytoin

Just a week after starting her on 100mg/day of Phenytoin [background], C. had a couple of horrific days, seizing terribly and for hours on end. Nothing I gave her stopped them.

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.

She emailed us back, agreeing that in rare cases phenytoin can exacerbate instead of improving the situation.

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 never gets the former and hasn't had the latter in about a decade. 

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.

Well, the nose dried up quickly. The period, though light, is still ongoing. All very strange.

So we're back to square one with medications.

The neurologist hasn't suggested any others to experiment with. I hope she won't jump to the second option she mentioned after medications: the Ketogenic Diet. I haven't got the stamina for that anymore.

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.

The neurologist was pretty eager for us to try it when we visited her two months ago. But she seemed even more eager about Vagal Nerve Stimulator surgery. 

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.

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.

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.

This last one, for instance, taught me that her current seizure situation qualifies as Status Epilepticus.

The occupational therapist called to brighten my day (just kidding)

There's nothing like a stay in hospital to grab some attention for your child from the school staff.

So yesterday the occupational therapist called me to discuss C.'s bout of dehydration and lethargy. The last time she spoke to me was years ago.

I was out. The Hubby took a message, urged me to call her back (I was inclined not to) and insisted "She means well." (I begged to differ.)

So for the sake of marital harmony, I returned the call.

She questioned me regarding C.'s diet, vitamin levels, malnutrition, insufficient calories,  the need to test for vitamin levels, the need to consult a dietitian, the undesirability of giving water when C. is reclining (she swallows it better that way when weak).

Everything but the kitchen sink.

Given the low self-esteem that's been plaguing me lately,  this little chat was the last thing I needed.

But somehow I swallowed it all, dutifully thanked and agreed with her on every score and emitted but one criticism: of  the aides who left C. dry and hungry for hours without even notifying us. The OT asked me to demonstrate to her how I give C. drinks while she's lying down with torso slightly elevated. I do this whenever she's reluctant to drink, lethargic or in the middle of the night.

The demo took place today.

The OT didn't like the position, advised me to elevate her even higher, and declared that nobody but I, she or the nurse should give her drinks that way. So it was concluded that the aides, when on their own, will be instructed to call us whenever C. refuses to drink.

I also filled her in on all sorts of info re C.'s behavior, seizures, eating habits and more. I believe - or at least hope - she was satisfied.

Then she gave me phone number of a dietitian who specialized in the Ketogenic Diet in order to ask her about the Modified Atkins Diet. I promised I'd call - but doubt I will. I mean there's just so much time in a day and so much energy in a 61 year old.

I think that's the last I'll hear from this therapist and believe the staff will now return to their policy of "benign neglect".