We started out just updating files and Hope took C off to start the testing. Then they took B. While the boys were gone, Dr. Worth came in and talked with us and we just gave him a verbal update on C. We told him about the panic attacks, and when we'd noticed them starting (November). We discussed his bowel issues and how he's on a laxative for 6 months to 'clean him out'...which I explained bothered me some cuz of the unnaturalness of it. (His suggestion was to use powdered Vitamin C...cuz really the only negative effect of too much V-C is diarrhea. So when we reach that point, back off a little. Nice! :)) We talked about how he has lost weight...5 pounds since October. That's just TOO much on a little scrawny thing like Clayton.
Dr. Worth explained that what happens neurologically when you have a panic attack is that it creates havoc and causes the digestive system to shut down. So whether it is the bowels, the stomach, the esophagus, ...it doesn't matter. It makes that part of the body begin to shut down as a preservation. It has to do with that 'fight or flight' issue. So, all these pains in C's chest and constipation issues that he's been fighting for so long are pretty much explained.
We also discussed the night terrors...and the fact that they have decreased in frequency since this started happening in November. He still has them occasionally, but basically they are fewer and farther between. So, I asked Dr. Worth if the night terrors are basically manifesting themselves into the daytime through the panic attacks...and he agreed.
When he went over the testing results with us, it showed that C is even worse in several of the areas than last year. It was one of those tests where the lower the score, the better you are and on C's results his score was already high from last year, but was almost 2 times last years' score. So he's definitely seeing an increase in intensity of the issues at hand, as well as new stuff in the form of the panic attacks and outbursts.
It seems too, that his sensitivity to sound and touch are worsening as well. He seems to have a harder time focusing and 'blocking out' the noises and will even in church hold my hands over his ears during the singing, saying it's too loud and bothers him. And touch: sometimes just the lightest touch on his skin seems to send him down the path of severe irritation..while at other times he's seeking touch in another way.
We're seeing more of (due to the panic attacks) him retreating within himself. It's almost as if he shrivels away and goes into a fetal position and sometimes will cover his head with a blanket. He never wants to be too far away, but he wants to be by himself. And sometimes (when he doesn't have those other things to cover himself with) you can see just this blank look go over him and it's like he's just 'gone away' mentally.
As we were talking, I brought up to Dr. Worth what I had talked with Hope about and our suspicions of C having Asperger's. I told him that I had done some research on it and while he doesn't fit the diagnosis criteria completely he does fit it about 90%. Dr. Worth agreed that C has strong tendencies of having Asperger's or PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). However, one thing he didn't want to do was to officially write the diagnosis in C's chart due to the long-term effects that that labeling can have. He described how he has seen people with ASD (Autism Spectrum Disorder) get an official diagnosis, so that the parents can have insurance 'help' and what happens is that the premiums double due to the added cost of care for the child. And then later in life (adulthood) the child (who's now an adult) has trouble getting his own insurance because of the history and also has trouble getting a job or getting into the military...simply due to a diagnosis being written down in his chart. Especially if the diagnosis is a mild form of ASD or a high-functioning ASD (which Asperger's is)...one that can allow the person great levels of living a normal life once they learn the coping skills needed. Plus, he thinks that with the therapies he's planning, C's will get quite a bit better...to the point that the average person won't think anything is amiss. And he did say that if, at that time, we still have issues and still think that we need an official diagnosis to get some additional help, he'd be more than happy doing that for us.
Well, we've decided to go ahead with the therapies that Dr. Worth has set out for us. One of them is Interactive Metronome which is a type of rhythm connecting treatment that creates pathways in the brain and does this enough that the proteins create a permanent pathway. Another is Hemi-Stem, which we don't know much about yet. With C, Doc thinks he's going to switch some things out and try a different therapy (than we had discussed last year). This one sounds really cool. It basically has a helmet or hat that he'll wear and it has sensors inside it. C will 'play a game' on a TV, but has to think the movements in order to get the computer to do what he wants. He will have to command it mentally to do things. I think it will be cool when he figures it out. But Dr. Worth thinks this one is more appropriate for him now since he's been having the panic attacks. These therapies will require 3 trips to St. Louis to Dr. Worth's office per week for 14-18 weeks and we start the first week of May.
On top of it all, these therapies are not covered by insurance...so please pray that God provides during this time!! LOL We have faith that He will, as He always has, but you know how it gets.... just a little worrisome! :-)
We have great respect for Dr. Worth and great trust as well that he knows what he's talking about. He seems very sincere and it's obvious that he cares about his patients and wants to see them get 'brain healthy' again. It's gonna be a long road, but we'll make it!
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