Several answers....botox, splints, Angelman's

[Guest guest]

Hi!

I dont have time to make individual posts today, so I'll tell what I

know in one.....

As far as Botox goes, gets it from his Physiatrist, she is a Dr

of physical medicine. Many orthopedic surgeons also do it. I have

never heard of a regular pediatrician doing it. We have in done in the

sedation unit at CHOP under anesthesia.

For the question about splints.... used to be fisted all the time

as a baby. We got Bennix splints for day wear, these are made of

neoprene which is a soft wet-suit like material. He also had resting

hand splints for night wear which were a hard plastic with foam and

velco overlay. We never used the resting splints as it interfered with

his sleep. The fisting stopped entirely after his first Botox

injection in the space between the thumb and index finger. He's never

been injected again, but continues to this day to have open hands

unless he is holding something.

's geneticist was so sure that had Angelman's syndrome that

she tested him twice. Blonde hair, happy demeanor, sleep issues and

seizures are all indicators of Angelman's and had them all except

the seizures. We had every genetic and metabolic test she could think

of, it wasn't until we saw Dr Dobyns that we got a cause for 's

PMG. Turned out to be a CMV infection in utero, unlikely because CMV

is only dangerous to an unborn child if the mother has never been

exposed/infected. I am a nurse and had been for over 10 years when

was born and I had a school-age child, the likelihood that I had

never been exposed to CMV was so minute, but for whatever reason it

happened, and here we are today trudging through....

Well you know what they say....that which doesn't kill us.....

Hope that helps.

Sue

Mom to Meghan(12) and (6) BFPP, mod spastic quad CP