Friday, August 10, 2007

The Test

Earlier this summer, we started the process of having genetic testing done on Gus, as requested by the pediatric developmentalist who finally diagnosed him with Asperger's. The first stage of testing was more of an interview with the geneticist for information such as family tree, histories of illnesses, but mostly the routine background on my pregnancy and Gus's early development. The second stage of testing required me to bring Gus to the geneticist for a pretty standard examination. We learned 2 things at this appointment:

- Asperger's seems to be more prevalent among children with Jewish backgrounds; my father-in-law is Russian-Jewish.

- Hyperextensiveness in the joints (commonly known as double-jointedness, which I and Gus are both blessed/cursed with) has some odd relationship to heart murmurs. Go figure.

Then came the most fun part of the test: the blood work. We needed to have blood work done for 2 different doctors, which translated to about 12 vials of blood being drawn from my poor boy's arm. can you imagine what it's like to take a child who is a) hyperactive and b) scared out of his withs and c) doesn't always fully understand what someone is saying to him, and to hold that child still while 12 vials of blood are seeping out of his arm as he looks on (because he refuses to look away)? I must say, I was very proud of him - he held up amazingly well.

We go back in 5 weeks for the results.

Thursday, August 9, 2007

Enzyme Therapy and the Feingold approach

The more I look into enzyme therapy, the more it seems like it could be a viable option. It was hard to come to this conclusion because everything I'd read to this point has been full of technical terms that gave me a headache. But I think I finally get the concept.

There is a theory of autism that says individuals on the spectrum have trouble digesting certain proteins, usually gluten and casein. When they are inadequately digested, certain compounds enter the bloodstream and these can have some 'opioid' effects on the brain (think of morphine). Therapies like casein and gluten free diets strive to remove the problematic substances from the diet. But, these diets cam be expensive and impractical unless the child is living in a bubble.

Enzyme therapy, on the other hand, helps the body tolerate these substances and digest them more completely. The specialized diets may help as well, especially if the child has gastric issues and needs to heal the gut. From what I've read, some people have seen positive effects from enzyme therapy in as little as 3-4 weeks.

One other approach of note is the Feingold approach, which basically advocates the removal of preservatives and artificial substances in foods. At its core it seems to be the equivalent of going organic and all-natural.

I've tossed around that notion for a while now, just because it must be a healthier way to eat, but I always hesitated because of the cost. But I tried something this week. When I did my grocery shopping, I took the time to buy all certified organic and all-natural foods. And I discovered something interesting. I only spent about $10 more than I normally do. How'd that happen? I ended up without all the junk that usually finds its way into the cart! No soda (only for the adults, but not a necessity by any means), no chips, no pre-packaged convenience snacks...So what gets spent in higher costs per item, is easily offset by letting go of stuff that probably shouldn't be eaten anyway.

So I've finally decided where to start my little experiment. First we'll start with getting the gunk out of our bodies, just because it can't hurt, and after I meet with the nutritionist on Monday, we might go the enzyme route for a few weeks. then I'll cross my fingers and hope for the best.

A couple of sites to check out for more information:

And a good read:
Enzymes for Autism and other Neurological Conditions: A Practical Guide by Karen DeFelice.

Wednesday, August 8, 2007

Dinnertime humor

Gus, as I said before, is partial to jokes, especially knock knock jokes. Here's his latest:

Gus: Knock knock
Me: Who's there?
Gus: Anita
Me: Anita who?
Gus: Anita glass of water

Gus: Knock knock
MM: Who's there?
Gus: Phyllis
MM:Phyllis who?
Gus: Phyllis another glass of water, please.

And MM's favorite:
MM: Knock knock
Gus: Who's there?
MM: Interrupting cow
Gus: Interrupting cow --

A bit of humor always helps to round out the day.

Dietary interventions

In the past two weeks, I've come across people who have suggested to me that I should try different dietary methods of helping my son. One person, a dietitian, is a strong advocate of the gluten-free/casein-free diet. She also tried to convince me to try enzyme therapy. The other person was a mom with a child who has ADHD. She was advocating enzymes, supplements and an all-organic diet. I had heard about these therapies in the past, but quite frankly, they're very hard to maintain, and when I had first heard of them, our pediatrician couldn't give me the information I was looking for. So I thought that maybe it's time to consider one or all...and there's the problem. Which therapy is right?

Gluten is a protein found in certain grains: wheat, rye, barley, and because of contamination issues in processing, sometimes oat. When gluten is removed from the diet, the small intestine can repair itself. The gluten-free diet is recommended for those individuals who suffer from intolerance to gluten that can cause all manner of gastric disturbances (i.e. diarrhea, bloating, gasiness). The success stories sound very hopeful, so what do we have to lose?

The thing is, Gus has never had any gastric problems outside of the occasional virus. So would this diet, which is recommended for 3-6 months, be of any use to him? A good nutritionist may be able to evaluate the situation, but they can be a little pricey. One place I was referred to in Kingston, NY charges about $120 for an initial consultation. I was fortunate enough to be given a referral card, so I may be able to be seen for much less. We'll see how that works out.

On the plus side, it makes perfect sense to me that spectrum kids digest food a little differently than the typical child. I've said for years (to pretty much myself because no one around us likes to listen to me) that Gus can't handle chocolate in even the smallest of doses. A bit of chocolate would usually send him into hyperdrive for at least 48 hours. "But that's crazy...there's not that much sugar in chocolate...the amount of caffeine in chocolate is minuscule..." I don't know what it is in chocolate that has always made him nutty, but the only evidence I need is that when he has it, he's worse, and when he doesn't have it, he's better. So the argument for eliminating gluten from the diet feels right to me. And I'm certainly willing to try it if I can.

Which brings us to the down side. Although many more supermarket chains are starting to carry gluten-free products (locally for us, A&P and Hannaford's) in addition to the Mrs. Green's and health food stores, the fact still remains that these foods are much more expensive. If we were better off financially, hell if we even had 2 full incomes, it might not be such an issue. But when you're consistently having trouble staying out of the red every month, it's a very real issue.

Once we get past the cost, then there's the fact that gluten can be found in almost everything! And what about when we eat away from home? Gus's school doesn't follow a gluten-free program, and he's in a school for special needs children. Our families would certainly have a problem with adapting to a new diet. I've got an Italian mother-in-law who lives to feed her grandchildren pasta and bread, and those things are my kids' favorites. Yes, we can find gluten-free pasta (it's actually pretty good), but if I suggested that MIL try something different, that would be akin to asking her to throw a spitball at the pope.

Snacks are another issue. I tried a few things that I thought my son might like - he didn't. So I am still searching and trying to adapt before going full force into this diet. I'll report my progress.

Casein is a protein found in dairy products. This wouldn't be too difficult to incorporate into our diets (if I could get my in-laws to stop obsessing over feeding my children ice-cream - they've gotten better about it). There are enough ways to get calcium into a diet without dairy, and my daughter already won't drink milk. Even though Gus does drink milk and eats yogurt, no one else in this household does. Soy milk hasn't gone over too well. I attempted rice milk, and I don't think he liked that too much either, but I'll need to try it again before I can say for sure. And even if the kids can't have ice-cream, they can still have ice-pops made with fruit, which they love just as much. Of course, Gus isn't one of those kids with any major food aversions, so it may be easier for me to make this particular transition than some others.

I'm still researching the enzyme therapy route and going all-organic, so that will be a post for another day.

Tuesday, August 7, 2007

Introducing Gus

This is my first post and I'm hoping it doesn't end up being novel length. Gus is actually the name of a character in novel I'm working on self-publishing. He is based loosely on my real life son, and so I will refer to my son by that name here.

Gus is 6 and has Asperger's Syndrome. He's fairly high functioning - he has loads of language and his cognitive skills are great. However, he has some trouble using all the language he's acquired appropriately. Trying to have a conversation with him is the epitome of randomness, and it's usually pretty one-sided. Most of the time, he's not particularly interested in what others have to say; he's mostly just vocalizing all the many thoughts that are racing around his very busy brain. But he has good days, and on those days we can have something close to a chat.

An average day (like today) will involve him running through the house like a hot rod - back and forth, complete with zooming noises. I'll have to repeat anything I say to him a minimum of 4 times, although he will listen much more attentively to his younger sister, four-year-old Mama Mama (let's call her MM). Ironically, for all his lacking social skills, he and his sister are extremely close and play beautifully together. They're playing now, probably Teen Titans or some such other super-hero themed game. When the time comes to clean up the bedrooms for bed time, I will be afraid to see the destruction that's been wrought upon the upper level of our home. But at least they've having fun and interacting. They both need that.

Gus loves to swim, but hates to have wet clothes or to be touched with anything wet. And he hates soap bubbles. He loves music, but if we sing near him, he will tell us to shut up. His sister's singing often makes him cry (which honestly, I can't blame his condition for). He tells knock-knock jokes, but often messes up the punchlines, but they're funny anyway. He's a trip, that kid.

So in the days that follow, I'll be writing about some of the therapies we're trying out, how they're working, pros/cons, things like that. And when all else fails, I'll just blather on about my boy.