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New to all of this...
Wed, 01/03/2007 - 11:53Topic: New to Epilepsy.com
My 7 month old daughter is currently undergoing tests to determine why she is having myoclonic seizures. She's had 2 eegs and has been started on Zonegran (last night in fact). We're learning as we go but the neurologist seems hopefull that she does not have infantile spasms. I'm looking for anyone else who has dealt with infants with this and reassurance right now. We're so overwhelmed and the medicine is already altering her behaviors.
Thanks
Jenn
Comments
Re: New to all of this...
Submitted by mama bear on Wed, 2007-01-03 - 14:46
Hi Jenn,
Was it you who I spoke to that had also had a problem with reflux with your daughter? Last night I spoke to a woman "Eklairsmom" I think was her name, and she had the same beginning symptoms in her baby.
you may want to check out her blog, as her daughter has been having seizures since birth. Again I am sorry, but I am glad that the testing went well. Just so you know my son is on 2 meds right now Lamictal and Keppra, and the Keppra is effecting his behavior. At first he was really woozy and almost acting like he was drunk, he had trouble walking straight. Over two days he seemed to become more used to it and is more himself. At first it is really scary to see them act different, but their bodies do adjust faster to the meds that adults do.
I hope things settle down.
Hugs...and best wishes for your little one.
Tresa (mama bear)
tresagibson@hotmail.com
www.tresagibson.ca
Re: Re: New to all of this...
Submitted by Lydiasmama on Thu, 2007-01-04 - 10:23
Thanks for the help. We have an mri and another eeg scheduled for week after next and they are considering a video eeg. We still haven't been given a full diagnosis, but we're staying positive and hope that the meds help stop the seizures. We are seeing that as she sleeps more because of the meds she has fewer seizures. We've always been concerned because of how little she sleeps and hope that we can get something figured out soon.
Thanks again
Jenn
Re: New to all of this...
Submitted by Patk on Wed, 2007-01-03 - 11:59
Jenn, I am sorry you all have to go thru this. I know it is difficult for my daughter to watch me, I cannot even imagine what it is like to watch your infant, toddler - child. I do not know where you live, but have you contacted Johns Hopkins hospital in Baltimore maryland? They developed the Kyrogenic diet for kids and though your daughter maynot eat real food yet, they may have alternatives for you. Good Luck pat