In the flurry of Bertrand this week, I forgot to mention his speech evaluation at Shriners Hospital. The evaluation was conducted by speech/language pathologist, Laura Barnett. B's doctors and all of his therapists have spoken very highly about Laura. And, after meeting her, I can see why. Not only is she delightful, she is very insightful! :)
Within minutes of working with B, she had him fully engaged. B's biggest hurdles to communication are his physical challenges. Meghan and I had him working buttons with his hands, but Laura got him using his feet (which have less involuntary movement) with greater success! Laura even gave us a switch (a $130+ device) to take home.
Between the switch, the visual flashcards and the upcoming shopping expedition at the Utah Center for Assistive Technology, we'll have plenty of fun toys to work with speech-wise. And that's enough for now. According to all the experts, B really needs to work on motor control and balance to enable his communitcation and reduce his frustration.
Laura thinks that Bertrand needs, and will start receiving, more occupational and physical therapy at Shriners. To start with, we'll only see Laura 1-2 times a month. That means, between Laura and Meghan, Bertrand will get speech therapy once a week. PT and OT are where he will get blitzed. In some scenarios, he could have therapy every weekday.
P.S. - Dr. Longo said, "An ACTH stimulation test might be a good idea. I am not sure whether he has adrenal insufficiency, resistance to ACTH or hypercortisolism. Most cases of Allgrove are in older individuals: this would be very early. I will be back next week."
P.P.S. - From my research, in medical literature many cases of Allgrove have older sibling(s) who died in childhood, undiagnosed with similar symptoms. Given how long B's doctors were sold on ataxia telangiectasia (which doesn't manifest until around age 6) we shouldn't rule this out on age. ...'Sides, with ACTH that high, B needs treatment.
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