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New with many questions...

Sat, 08/04/2007 - 02:15
My 22 month old daughter had two grand-mal seizures in April. She had very low blood sugar when we arrived at the ER, following her first, and had the second in the ER. We were admitted into the hospital for three days. Due to the low blood sugar we were seen by a endocrinologist and released when things stabilized. (Her blood levels had been what they referred to as "acidy". She was able to stabilize her blood sugars by the next morning following the seizures.) When we did follow up a few weeks later things looked great after re-testing all the blood work. It was thought that "maybe" the flue she had had three days before the seizures had something to do with the cause. In July for a two week period she started having odd random behavior that just didn't sit right with me. Such as while sitting in a child sized chair she suddenly jerked her head backwards and ended up knocking the chair and herself over with it. She did this again while playing happily in the tub hitting her head on the bathtub. She started walking into things, had episodes where she would push against me, always with a backward movement, her body locked up and just scream. Following she would grab at her head and say it hurt and fall asleep. Walking holding her hand, happily again, her body locked up and she started screaming. Following she fell right to sleep and didn't seem back to herself for a bit. Her pediatrician at that point referred us to a neurologist. She has since had an EEG. The results are unclear. The neurologist said it wasn't a very good EEG and that either there is an area of slow brain activity or one of the leads wasn't staying on properly. She will be having an MRI and an EKG in a few weeks. There is also a possibility of her doing an 48-72 hour EEG depending on how things go. Once the neurologist and I talked a bit she felt that it is very likely that she is having partial seizures. As an infant, a few hours after she was born I thought something was off about her. But I couldn't say exactly what seemed off to me. At a couple months old she was sitting in a bouncy seat and I questioned if something was off about her eye sight. I was standing in front of her, but she wouldn't look at me, even when I waved my hand in front of her, but of course came around from it. She was also treated for what we thought was sever reflux. The medicine seemed to work great some days, but then over times I noticed that her taking the acid reflux medicine did no good. Even after she developed upper body control you always had to worry about her randomly throwing herself backwards. To the point that one family member holding her had to throw the cup they were holding to catch her. She had good days and bad...and she slept ALL the time. She was on the verge of being behind on the charts all the time, if not behind, up until she hit the 10-11 month mark. It was like a light bulb came on. She started trying to do so much in a very short amount of time and a REAL personality came out. (And she caught up on the charts shortly there after.) After talking with the neurologist she thinks what we thought was reflux, her stiffening and screaming making lots of swallowing sounds were quite possibly seizures. That also would explain why she slept so much. So far there is no solid proof of seizures, other than the two that we thought had only to do with low blood sugar. But she has been started on Zonegran 50mg per day. My daughter HATES the taste of it even when mixed up with favorite foods and will not eat it. How do you get your little ones to take the meds without torturing them twice a day? I am struggling with this especially not knowing for sure that she really is having seizures. I know something is off, but what if we don't have it right yet? It seems that if it is seizures, I would be shocked if they weren't, she doesn't have them on regular basis. When they do happen it seems to be in "groups". Any advice on giving her the medication or thoughts would be greatly appreciated. I apologize for the length of this post. Thanks and best of luck to all of you. Jessica

Comments

Re: Re: New with many questions...

Submitted by Hope2007 on Wed, 2007-08-08 - 02:06
Thank you, for the responses, I really appreciacte it. The medication was not settling with Hailey, so it has been stopped for now. Things have been explained to me a bit further and the slowing they picked up on the EEG suggests that she has had a recent seizure that her brain was "recovering" from or that something structoraly is wrong. If the MRI is normal I would really like to see her get a 24 hour EEG, but that didn't sound like it would be happening. I will wait and talk with the neuro. further after the testing next week. Not knowing is very hard and realizing that if the slowing is from a recent seizure she is having some that are not being noticed. Which makes me wonder how often she is really having them. Thanks again and best of luck to all of you and your families. Jessica

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