January and February used to be slow, boring months! Not any more! I can hardly catch my breath.
Current medical fun…Neurology
AnnaKate presented a few seizure like symptoms so we decided to have an EEG a few weeks ago. Those sure are fun! The whole sleep deprivation part was daunting but we made it through as we always do. The results of the EEG did not show any seizure activity that day but did show signs of possible agenesis corpus callosum. We had a brain MRI last week to confirm those results. So…AnnaKate does have a thin corpus callosum but everything else in her brain looked good. ACC (agenesis corpus callosum) does not seem to run hand in hand with RTS but pretty common in special needs kids. It can cause developmental and learning issues but in some cases presents no problems. Do any other RTS families know about ACC?
AnnaKate has had a cold, I am getting it and sleep is becoming tricky again but spring is just around the corner! I can’t wait…
Billy and I married in 1998 after dating for 6 years. In 2006 we adopted AnnaKate. We were lucky enough to meet her birth mother and take her home from the hospital. At about 4 months old, AnnaKate was diagnosed with Rubinstein-Taybi Syndrome. Through all of AnnaKate's struggles and delays she surprises and delights us daily! Thanks for marking this spot and coming back often to check in on us.
5 comments:
Whoo hoo for no seizures! That's great news! Re: corpus callosum, I've only heard of some RTS kids not having any corpus callosum...not familiar with ACC.
So glad that she doesn't have any seizure activity! I'm going to have to go look all the other stuff up to try to understand!
not sure if the doctor used ACC as a diagnosis for Jesus but i do know that Jesus has an under-developed corpus callosum. not sure if thats the same thing...
so glad no seizures Yay!!!
Hello, I am Vanesa it sucks of a child with Rubinstein Taybi's syndrome as your daughter, my son is two years old and we are from Seville, Spain, Europe, much likes to read your blog, alone so to say this to you.
A greeting.
V_gpp@msn.com
Hello, I am Vanesa it sucks of a child with Rubinstein Taybi's syndrome as your daughter, my son is two years old and we are from Seville, Spain, Europe, much likes to read your blog, alone so to say this to you.
A greeting.
V_gpp@msn.com
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