This morning was Jake's appointment at Dr. Causo's office of Neurodevelopmental and Behavioral Pediatrics. Dr Causo was very gentle and nice, and I liked him a lot. That didn't mean it wasn't a nightmare of a visit.
First of all, Jake decided that he wasn't going to cooperate at all. Dr. Causo did all of his own preliminary stuff, height, weight, blood pressure etc, and Jake decided then and there that he didn't want to be there. Initially laying on the floor, and finally breaking down into hysterics by the time the Dr. tried to test his ear drums with a device that was nothing more than gentle ear plugs on a probe. The rest of the examination was done in an exam room and was the most thorough that Jake has ever experienced. It included reflex tests, a blacklight to check for skin abnormal ties, lots of what looked like muscle resistance and joint tests (we didn't talm much over the screaming). The entire time Jake kicked, screamed, cried and scratched. Manny was with me as well, and wanted me to hold him and nurse and was upset by his brother's antics, so the little guy hung onto my leg and tried to climb me while looking into my face in utter confusion and cried in just the most terrible way. This ordeal lasted for an hour or so.
Jake finally came around when we were finished with the physical exam. He played a bit with Dr. Causo with blocks, and was overjoyed when the Dr. got out a set of rubber stamps and put green smiley face and compass stamps all over Jake's arms. Both kids were eventually satisfied with crackers and drinks while we went through the question and answer session, and I filled out the CHAT questionnaire. Then it was time for the Dr. to tell me what he thought.
This is where he says "blah blah blah, high functioning autistic... blah blah blah...here's your diagnosis... blah blah blah enjoy your occupational therapy and speech therapy, he'll be fine."
Oh no wait, thats not what he said at all.
What he did say: "I think that Jake has something going on neurologically that is creating autistic like symptoms. All of the tests will show that he is autistic, but I am not comfortable with just that diagnosis. I don't think that he is autistic, he does not act like an autistic child. He does have some of the symptoms, but he just doesn't fit the autistic or PDD-NOS profile."
Huh?
He went on to say that because Jake has always had and still has very low muscle tone, we're possibly looking at a brain injury/brain damage sort of situation, or possibly a metabolic or genetic disorder. Of course he could be wrong, and Jake is just a kid who, by some coincidence has congenital hypotonia AND autistic like symptoms, but again, he doesn't feel comfortable just letting it go at that.
Not what I was expecting at all. Somewhere in the middle of him telling me this I had the sudden need to move my bowels. After a quick trip to the restroom, we resumed.
I have on my desk a note from Dr. Causo's prescription pad. The first thing it says is "static encepholopathy." Static encephalopathy is "a disease of the brain which doesn't get any better or any worse." From what I can figure out from a quick google search, this is often used to describe children with Cerebral Palsy, FAS or brain injuries. Then the prescription asks for "Brain MRI with and without contrast, EEG, EKG, [something] lab, amino acid and organic acid, chromosome analysis, FISH and autistic panel and fragile X" It also calls for physical therapy and orthotics for his feet. The Dr. feels that his feet turn and need to be corrected.
After that I'm not sure what he said except that he will send this report to Dr. Micheals and that he will be interested to see what the test results show from the school system (I took him a list).
So, from what I can gather, and I may or may not be wrong (because my mind is reeling a bit) is that the worst that can happen is Jake could have a neurological or genetic problem that is degenerative. Then besides that there's the possibility of a metabolic issue where dietary changes are in order, the possibility that Jake has mild Cerebral Palsy or another brain injury that happened in the womb or at birth and nothing will really be changed as far as therapies and treatments go. Or, maybe he's just a kid with autistic tendencies and having the shit scared out of me (literally) right now was just "precautionary". The doctor just felt that we should rule everything out.
Not what I expected at all.
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