Frustration

We thought she was getting better for a few days, but then she's gotten worse again. She slept 13 hours last night, work up at 10 this morning, but has been asleep again since 11:15 (it's now almost 1:15). She picked at her breakfast. I'm going to weigh her again when she wakes up, as I suspect she's lost more weight.

Keep us in your prayers.

The Mother of Invention...

....truly is some lady named necessity.

Check out this very cool invention.

Ten Things

I recently finished this book, Ten Things Every Child with Autism Wishes You Knew. I had ordered it from Amazon awhile back, but only got around to reading it this past week. Wow. I think I will be reading it again in the near future. 

 

 

 

If you have struggled to understand your kid on the spectrum, this book is for you. Even if you haven't, this book is for you. If you don't even have a kid on the spectrum, but think you might meet one someday, this book is for you. 

 

Ms. Notbohm draws on her own experience as a parent of a child on the spectrum to show you some fundamental truths about your own child. Some of them you probably intuitively knew. I found many I probably should have known but didn't. But instead of making you feel guilty about your own misunderstandings, she uplifts you and inspires you to do even better by your child. 

 

This is truly a book that makes you feel happy and secure as a parent again, and teaches you to regard your child in a whole light. It's so brilliant, it's almost blinding. 

Two Things

Thing One: 

Abby is (I hope) finally on the mend. After much reading, compiling information and yet another doctor's appointment, it was finally (unofficially, of course) concluded that Abby may have a systemic candida overgrowth, possibly from the five courses of antibiotics she had in the space of six months (three of which were heavy-duty trying to clear a sinus infection that wouldn't die).

I had already suspected a couple of weeks ago that she was probably suffering from malnutrition for a variety of reasons (something the doctor pooh-poohed initially), but giving her a good-quality multivitamin and some almond milk every day has seemed to help. We also started probiotic drops today too. Of course, this is all very par for the course if your child is being treated by a DAN! doctor, but most mainstream medical practitioners won't really give these issues the time of day. Good old doc, bless his soul, was unhappy to admit it certainly was a possibility and was better than any theory he had about her mysterious illness.

Anyway, this only strengthens my resolve to carry on with our plans to pursue treatment using a naturopath to help improve her overall health status. Not that I'm expecting her epilepsy or Autism to be magically "cured", but I'm hoping to identify her unique health needs not normally treated by the mainstream medical community. My goal remains improving her overall health and quality of life.

Oh, and did I mention she quit having as many seizures within a couple of days of her starting the vitamins? Even after neurology had us reduce her nitrazepam down to a lower dose in case that was causing all the sleepiness?

And we're 48 hours without a seizure and counting?

Thing Two:

Ummm... I forgot. I'll let you know if I remember.

Differential Diagnosis

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!!!!

So, ideas?

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.

Help!!!

Something New

After my last ramble about chreese, I got to thinking (dangerous pastime, I know). I think one of the things I miss the most about Facebook was the Living Social's Visual Bookshelf application. It allowed you to keep track of what you read, and to create reviews and rate them. 

I have been known, on occasion, to create reviews on Amazon's website (usually if I really hate a book), although I've been kinda pissy that the .ca website won't let me create a review, but the .com one will (even though I've ordered from both). 

(Note to my American friends: I'm very jealous of your amazon.com. It rocks. amazon.ca sucks in comparison. And tons of stuff on .com won't ship to Canada.)

I do read a lot, both on Autism-related topics and faith-related topics. And I looooove a good, or even mediocre, Star Trek novel (I read those like many women read Harlequin Romances). So why not tell you about what I'm reading? Wouldn't that be fun? Huh? Huh? 

*smiles*

 So here we go. We'll call this new feature "the book review". Catchy, non?

*drum roll please*

 

Okay, so I finished this one a while ago, and lent it to my friend Jen who is working her way through the CF part with her daughter. 

The book it totally awesome. It was actually one of the last ones I read on the topic, but I wished it had been among the first. I might have started this whole GFCF thing a lot sooner if I had.  She spells the who-what-when-where and whys of the diet in clear English, and has some great tips and ideas for adjusting to the diet, traveling and vacationing, reading labels, and just generally getting your head around it.

I strongly recommend it to anyone considering the GFCF diet for their child. The other book that I would recommend as a "first read" is The Kid-Friendly ADHD & Autism Cookbook, Updated and Revised: The Ultimate Guide to the Gluten-Free, Casein-Free Diet. It was instrumental for convincing me that we should also try eliminating soy on a trial basis.

So that wraps up our first segment of "book review". Thanks for stopping in!

The Awesomeness Known as "Chreese"

 Recently, I purchased a couple of packages of Road's End Organics GF "Chreese" to try. 

We have, so far, been amazed with this product!

(If I was still on Facebook, I would be talking about it there, but seeing how I'm now Facebookless, you get to hear all about it. Lucky you.)

It's incredibly hard to find here in Canada, as no one seems to want to ship it, but I recently discovered this great little boutique that carries all kinds of GF stuff that comes up from the US.  (On a side note, there's another great shop I've recently discovered that carries tons of GF stuff., Sadly, both are 2+ hours away from my house. Happily, we're "in town" often enough that we can make the trip once in awhile.)

We tried it first as a mac n' cheese sort of thing, and made baked mac n' cheese a la Nana with a tin of homemade tomatoes mixed in. It was delish.

The true test was today, when I whipped up a batch and proceeded to make Abby a grilled chreese sandwich!

She was pretty excited, and looked at me with some disbelief when I told her to go ahead and eat it (it's even orange-coloured like american-style slices!) I was surprised how well it worked (the prepared chreese has a consistency similar to Cheez Whiz). I ate one too. The rest of the package of chreese is sitting in my fridge, waiting for the next sandwich.

Yum!

Credit Where Credit is Due

With Autism, you often wonder just how much they're absorbing, retaining, and remembering as you go about your day. It sometimes feels like they're sooooo not paying attention, but then little things happen that make you realize you don't give them nearly enough credit.

At the local health-food store today, I was intently studying the gluten-free snacks, looking for goodies to fill Abby's treat box used for rewards during ABA. Rachael was at home with a sitter (Abby and I had been at a doctor's appointment), and Abby was milling around nearby, examining the boxes of gluten-free pasta. She wanders a little further, but I can still see her out of the corner of my eye.

Suddenly, she's gone. I peer over the display case, and can't see her. I start walking, looking down each individual aisle, and can't find her. I call her name. No response (no surprise). I glance at the door. No one has come and gone for several minutes, and the people here know us and wouldn't let Abby leave with a stranger.

Would they?

It's not that big of the store. Where the heck is she? My heart starts to pound as panic slowly starts seeping in.

And then I spot her.

She had gone, unassisted, and helped herself to a carton of her favourite brand of chocolate soy milk (which she has been crying for, but can no longer have). She then proceeded to the till,  and was waiting, patiently, for Mommy to come pay for it.

I think we got the we-must-pay-for-things-before-we-leave-the-store thing down pat. Now we have to work on the please-don't-wander-away-from-Mommy part.

He Is Risen!

Good Friday