I haven't talked about this much, mostly because I dismissed it as nothing at the beginning, and have been continually reassured by medical personnel that it probably is nothing. I've been at the doctors at least 4 times about this, most recently two days ago.
But the more I read, and the more I think, the more I'm certain that something else is afoot. I feel like I need to call in Dr. House and his team.
However, he's a fictional character, and besides, I don't think I could afford him anyway and Medicare probably won't cover it. I've asked Dr. Google several times, but so far he's been indecisive. So I want your opinion and ideas!
Differential diagnosis, people!
The parts you probably know: Abby started having seizures again in the middle of December, and has had multiple dosage increases on her anti-epileptic medications since then. They have only been partially effective, reducing her seizure numbers from 3-6 daily to about 2-3 daily (and having odd days where there appear to be zero). Her current medications include 700 mg of valproic acid per day (split into three doses), and 4 mg of nitrazepam twice a day (daily total of 8 mg). I've been pushing for a change in drugs, but so far no one is listening because they refuse to do anything as long as she's not feeling well.
So now the "not feeling well" part. For nearly two months, she's been lethargic, sleepy, pale, irritable, not eating well, pooping weird, and generally amiss.
Lethargic: a puddle on the couch. She wants to cuddle and watch Raffi instead of going outside to play. Refuses to stand up at times. A normally active child, she's been reduced to the speed of a basset hound.
Sleepy: sleeps 12 hours at night, then proceeds to sleep another 2-3 hours during the day. She gave up napping a year ago at Christmas. Her norm, without the clonidine, is about 9-10 hours, but we're still having to give the clonidine otherwise she wakes up multiple times with night terrors. Often, she'll just be sitting there, falling asleep with her eyes rolling back in her head. Refuses to do ABA work, and wants to lay down in my bed. Is frequently crawling into our bed at night these days anyway too.
Pale: She looks like death warmed-over. Actually, that would be an improvement. She's death sitting at room temperature getting cold.
Irritable: see sleepy. Refuses to do ABA, which she normally loves. Refuses to get off the couch to come eat. Complains often, cries for no apparent reasons. Easily distressed.
Not eating well: rearranges food on her plate most meals. Anything she does eat tends to be carb-heavy, although she's having a good run on green grapes the past few days. Also is drinking very little the past few days.
The pooping thing: Stool has been a pale yellow colour. It reminds me a little of oddly-coloured clay. It's disgusting.
Have I mentioned this has been going on for two months??? I mean, she has good days and bad days, and will occasionally have a string of two or three good days, but really, it's been two frigging months!!!!
Many of these symptoms indicate liver failure, which is a definite possibility with the valproic acid, especially the fatigue and yellow stools. Her last few ALTs, however, have come back normal (last one was drawn March 25), and when palpitated her liver feels normal. She did, however, scream like a banshee when her bladder got palpitated, so Dr. E felt that she probably had a bladder infection (which the urine sample seems to be a little vague about, but he's still pretty sure), and we did a course of antibiotics. Which we're now done, and she doesn't scream when you touch her lower tummy anymore, but she sure isn't any better with anything else.
I keep getting told that she has a virus and just needs time to get over it. Exactly how much time am I supposed to give this?
Oh, and have I mentioned that "they" won't do anything about her seizures until she's "feeling better"? Because that might be why she's having seizures, because viral infections lowers seizure resistance in many people.
But what if her return of the seizures is a symptom of whatever the larger problem is???
I don't think it's the medication, because we've had a couple of changes in this time frame, and it doesn't seem to make it better OR worse. Besides, Dr. E was impressed that she wasn't stoned, especially with the dosage of nitrazepam.
A friend has suggested to me maybe a blood sugar issue is happening, something like hypoglycemia, which does fit her family history. I'm wondering about thyroid, and I'm wondering when the last TSH level was done. Thyroid issues would also be more-or-less consistent with her family history. Her metabolic workups have always been clear, and I'm doubtful that an inborn metabolism thing would magically show up at this point in the game.
I'm doubtful it's the change in her diet to the GFCF, as this problem predates it, and I was actually hoping that it would maybe resolve whatever the problem is. I've started giving her multivitamins wondering if it's maybe a malnutrition issue due to her self-restricting on foods. I'm not sure if the really bad self-restricting predates this thing, or if they happened together.