As many of you know, Gavin is dealing with something quite profound. No one has been able to explain it outside of saying it’s some type of degenerative neurological disorder.
He has been losing muscle control. Since January, he has lost his reflexes. Within the past month it was discovered that Gavin can’t move his tongue in an upward direction. This it to blame for part of the speech regression. It has been recommended that he has a swallow study done to make sure he is having issues swallowing.
However, recently, Gavin’s grade are starting to fall, quite significantly. This is getting to become a much more serious problem. Our next step is to see a very special doctor at Akron Children’s Hospital.
If you have ever watched the show House, this is pretty much what he does. He is top in the world in metabolic, neurological and mitochondrial issues. We are in the process of gather all records and getting them into his possession. After they have been reviewed, we will get an appointment.
I’m really starting to worry because up till now, Gavin’s grades haven’t been affected. End of last year he basically had straight “A’s”. We have to figure out what the heck is going on.
We have been on this quest to figure out what’s going on with him for many, many years. Our travels have taken us to the Cleveland Clinic as well as Akron Children’s Hospital. However, to date, no one has been able to figure these things out.
As I’m typing this from my phone, I can hear Gavin snoring. It’s not constant, but when it kicks in it’s pretty loud. This is newer as well.
We need answers ans no one has them.
– Lost and Tired
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The new onset of snoring is probably from the lack of muscle control. If he does not have good control over his tongue when awake it is probably worse when sleeping.
That is my concern as well. Thanks
Hmm, that does sound like it's mitochondrial. I hope you get definite answers soon and hope that it can be fixed.
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