I haven’t updated you on Gavin in a few days and so now is a good time to do so. I’m heartbroken to have to share with you that Gavin is now facing yet another challenge.
Gavin will be getting leg braces or maybe ankle braces.
He is walking on the outside of his and sorta rolling his foot from heel to toe. I would think the braces would basically immobilize his foot and ankle, essentially forcing him to walk correctly. I could be wrong in my interpretation but not think that makes sense.
I don’t known how well he’ll tolerate this. It could go just fine, or it could be a very unpleasant experience for everyone.
We should have more information very soon and when I do, I’ll be sure to update you all.
On the seizure front, he seems to be having seizures despite the meds. I think that they will need to be played with but the other concern is that he has had a pretty significant shift in personality.
We don’t know if there depakote is part of the problem because the shift has been a work in progress for a little while now. However, the significance and timing of the current direction is a bit suspicious. Either way, we are going to have to revisit his IEP and likely add a 504 as well.
We’re pretty close the end of the school year and by the time we get an actual diagnosis. Right now we are waiting on the dysautonomia evaluation in about 2 weeks.
I’m pretty sure that the school will need official documentation in order to adjust his IEP and add the 504.
**Thanks for reading**
-Lost and Tired
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Just out of curiosity… do your kids have hypermobility issues at all? I saw that your wife has fibro and chronic health problems. Also that your son may be dealing with dysautonomia. I just have two boys on the spectrum . I am suspected to have Ehlers Danlos type three and have autonomic nervous system problems ( as well as mouth sores that look like your sons?) Strange similarities…
I hope he's able to tolerate the braces. Maybe they'll help him keep balance better? Btw, what's a 504?