Saturday, October 24, 2009

Focus (response to friend's question)

A good friend who also has a younger child on the spectrum asked if Adam takes anything for focusing.

First I'll say that we considered, but ultimately rejected any idea of putting him on any ADHD medicine like Ritalin and friends. Too many side effects, and it seemed like there was an awful lot of other things we could try first before doing the Western Medicine thing and shove a product of big pharma into him. His speech therapist said she wouldn't bark up that tree because she was able to find ways to work with him, and in comparison to her other special needs/autistic clients, he wasn't really that bad with respect to ADHD (although in comparison to a normal kid, yeah, he was bad). Even Adam's behavioral medicine specialist who Dx'd him as PDD-NOS also wasn't really suggesting it, but was willing to write the prescription when we inquired about its applicability and maybe trying it just to see. Ultimately, we didn't fill the prescription she wrote as there (thankfully, in retrospect) no stock at the first 2 pharamacies we went to. Later, our pediatrician (grrrr.... this guy and others in his practice almost seem to be the enemy in this autism battle sometimes), started actively pushing it, while simultaneously telling us we were wasting our time with the DAN! practitioner, diet, supplements, and being almost entirely dismissive of the results we were seeing. Of course, our DAN! doctor (former ER phsyician) would look at Adam now, look at the rest of his practice of ASD kids, along with Adam's specific results and say that Ritalin would be an insane first thing to to try.

Now, that all said, Adam doesn't take anything aimed specifically to help him focus, but there are several things he is doing/getting that have definitely helped a ton in this regard. He is a lot more focused these days at 8 than he was at 7 when his gut was all distended, he was constipated, and he was carb craving and eating every croissant, apple, and banana he could stuff in his mouth, and would only eat Costco chicken nuggets for every meal. They went through a box a week for about 2 years before we got on board and started getting into the diet, supplementation, and seeing a DAN! doc up north.

The first aspect of the focus improvement seemed to be the diet. We started this in earnest late in 2008. After we started the gluten-free, cassein-free (avoiding all milk proteins), and soy-free diet was the first time that we could ever get him to sit down long enough to read an entire children's book to him. His special ed teacher also affirmed the improvements saying "I think the diet is really helping. He is much more willing to work and participates more in groups" (1/30/2009). This matched with our observations at home, but is without the result-bias that we'd obviously have.

The science behind these dietary improvements has to do with the leaky gut theory of intestinal inflamation where the inflamed cells in the walls of the intestine inflame, and the sulfate bonds of the mucousa that normally exert tight control on what gets into the bloodstream get weaker than they otherwise would be in a healthy gut, and consequently are more permeable to letting crap into to the bloodstream that shouldn't be there. So, for instance, instead of digesting individual amino acids like yer supposed to, the ASD kids are taking in entire proteins instead. Gluten gets into the bloodstream without being fully broken down in the ASD kids, and the theory is that these substances that aren't fully broken contain peptides (sections of protein) that have a structure similar to opiates like morphine and heroin. The theory goes on that these structures may attach themselves to opiate receptors in the brain and acting as false neuotransmitters...and.... get this shit... it's possible the reason our ASD kids seem to crave carbs and gluten and crap is that if they don't, they may be experiencing withdrawal symptoms from these substances that are behaving like morphine or heroin in their system. For more info on this, check out "Changing the Course of Autism: A scientific approach for parents and physicians" by Bryan Jepson, MD.

Second step that seemed to contribute to better focus was supplementation, and following the program laid out for us by our DAN! doc. The cod liver oil portion of his supplement regimen (he was eased up to a dose of 1tsp morning and 1tsp afternoon each day, starting with 1/4tsp) is aimed at focus somewhat. This didn't give us a huge noticeable improvement, but it was part of a lot of other supplements that were setting the stage for him to get the methyl B12 injections, where the DAN! doc reports tend to be among the biggest improvements that they see. Sure enough, the methyl B12 injections we give him now twice a week (0.5mL once every 3 days) seem to have a dramatic impact. In fact the very day after we gave him his first methyl B12 injection, I innocently asked the teacher if she'd noticed any improvement in Adam, and noted that we had a really tough time giving him the first injection. The teacher's response: "I might have kept the [much improved] work sample for data. Today he made a transportation book. He told me most of the sentences and wrote everything by himself. (Ok I made one B for him.) He only sang 773 [202 beep beep beep beep LUNA] and I said no. He stopped immediately. He had to make his book in a group of 3. The other 2 students needed help as well. He worked the fastest and finished before them. Bring on the B12. I'll even give it to him." (5/18/2009)

With those pieces, he is a lot more focused these days than he was when his gut was all distended, he was constipated, and he was carb craving and allowed to eat every croissant, apple, and banana he could stuff in his mouth, and allowed to eat Costco chicken nuggets for every meal. They went through a box a week for about 2 years before we got on board and started the diet.

Right now, we're finding that in Occupational and Speech therapies that when his methyl B12 shot is on the wane (i.e. day 3, as he gets them every 3 days), he's a lot less effective at therapy, and becomes a lot more impulsive and unfocused. This seems to be very consistent, so we're awfully convinced that methyl B12 injections are doing something good for his focus and calmness.

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