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Anyone with a newborn baby with Epilepsy
Thu, 02/23/2006 - 09:53Topic: Parents & Caregivers
My son is almost 3 months old and he has epilepsy.He has Absense ,Grandmal and Seizures where he quits Breatheing.When he was born he was perfectly fine until the next day he would quit breathing on me. They did some tests and said he had a stroke while i was in labor. I dont understand how that could happen I mean what could i have done to cause that? So he had bleeding in his right frontal lobe and which caused the seizures which caused brain damage.They recently changed his medicene from Phenobarb to Depacoat.So basically my question is has anyone had this kind of situation happen to them and their children grew out of it or atleast it got alot better?
Comments
Re: Re: Anyone with a newborn baby with Epilepsy
Submitted by Jayden05 on Fri, 2006-02-24 - 08:30
Well thank you that is something good to hear.Im sorry to hear about your little boy.I hope his surgery goes well in may.They are telling me with my son they really want to wait and see how he develops as he grows to decide what they want to do.THis just really scared me with this being my first baby.I dont think i want to have another one cause i dont want to take the chance of this happening again, i dont want that one to have to go threw all the pain my little boy is going threw. Well keep in touch and let me know how you little boy progress's.
Mallori
Re: Re: Re: Anyone with a newborn baby with Epilepsy
Submitted by KarMac on Sun, 2006-03-19 - 11:05
My son is 9 months old and is currently on Phenobarbital and Trileptal (as well as Reglan and Prevacid for reflux). He had swelling of the brain when he was born and the MRI showed pockets of damage throughout. They think it was due to lack of oxygen during labor.
We've also been told that all we can do right now is to wait and see how he develops. It's so horribly frustrating. His seizures were only neural till he started physical therapy and now they're starting to show themselves physically. All they're doing in increasing the Trileptal.
Best wishes for the surgery
Re: Anyone with a newborn baby with Epilepsy
Submitted by justinsmom on Fri, 2006-02-24 - 00:02
hello. sorry to hear about your son. My son was born with some brain malformations....they say it happened when the brain was forming.. it didn't grow right in some places.He is now on Depakote and Keppra. He's tried about 5 different meds. --one thing I wanted to say about your situation....when Justin was being evaluated for surgery, our doc said that "if he had had a stroke, then a limited resective surgery would be almost 100% successful" because when you have a stroke, they can pin point the exact area and take out the damaged tissue that is causing the seizures. Justins' kind of damage is more widespread though so he needs a hemispherectomy which is alot more extensive. Anyway, I remember hiM TELLING US THAT THINGS WOULD HAVE BEEN ALOT BETTER IF JUSTIN WOULD HAVE HAD A STROKE--SOMETHING THEY COULD PIN POINT AND TAKE OUT. DON'T KNOW IF THIS HELPS YOU AT ALL. We're on this crazy road too. I'm so sorry your little guy is going through this. All we can do is love them and trust for God's best for them. --God bless you -justinsmom mom of justin dob:11/21/01 Partial seizures started at 6 mo. Failed resective surgery in '03. Hemispherectomy scheduled for 5/06 Justin is the joy of our heart!! Praying for his healing!