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Prognosis
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Prognosis

My granddaughter is 19 mos.old.  She has been diagnosed with Megalencephaly and Cortical Dysplasia.  She also has seizures.
She has been on phenobarbitol and dilantin, however, they changed her recently to topomax (topamax) and phenobarbitol since her seizures had not stopped.  She is unable to hold her head up or sit up and refuses to put weight on her feet or legs.  
All of her genetic testing came back normal and her doctors at Nemours in Jacksonville, Fla., have told us they can't explain why this has happened.   She was 5 weeks early, and was breech.
My daughter was 8 cm when she got to the hospital and her physician tried to let her deliver breech but ended up doing a c-section.  The baby did not start breathing on her own and was given oxygen and remained under oxygen for 24 hours.  Her pediatrician said she never reached a critical level.  During the
delivery, my son-n-law said it took the ob doctor 3 tries to remove my granddaughter as her head was lodged due to it's size.
No one can seem to tell us what the chances are of this happening again if my daughter wants to have another child.  Her husband is scared to try again.  This couple is wonderful with this little girl and she has a beautiful personality.  Can you tell me what you think could have caused this or the chances of it happening again?  Also can you tell me who to contact about a bed with railings all around since she is getting too large for a crib?
Thank You
Teri
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Dear Terri:

Sorry to hear about your granddaughter.  There are several genetic forms of cortical dysplasia such as tuberous sclerosis but your physicians should have easily recognized the harmatomous in her brain, surge-weber syndrome that has skin lesions that are easily seen.  However, a great many of the cases we see, we do not know why such events happen.  Most of the time these happen very early in development and the insult is unknown.  It is very, very unlikely that the dysplasia had anything to do with the birth process.  Since this happened once, the chances of it happening again are increased.  However, the probability remains very low overall, probably less than a few percentage points.  The cortical dysplasia, unless the dysplasias are focal and can be surgically removed, are difficult to control with medications.  I really hope that your pediatric epileptologist finds the combination to make your granddaughter seizure-free.  There are several child catalogues that have railings (ask your pediatrician) and there is a group called "exceptional children" who put out a magazine where you will find places to buy railings.  Your pediatric neurologist would be aware of places in your area also.

Sincerely,

CCF Neuro MD
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