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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: New with many questions...

Submitted by janellesmom on Mon, 2007-08-06 - 22:49
i don't have answer for meds my daughter is 3 months and i administer hers through a tube from her noise straight into her stomach if its liquid form i know some pharmacys can add flavor? all i can say to you is i read your post and feel really bad for your family i hope docs can find answers don;t give up the hope and keep pushing for another e.g.g may godbless you i will keep you in my prayers

Re: New with many questions...

Submitted by LJ on Tue, 2007-08-07 - 07:37
Hi Jessica, I hope the docs find answers to help your little one. My son has partial complex and it is hard to deal with as a parent. My son takes depakote sprinkles. I put the medicine on strawberry yogurt which he loves and am able to admister the meds that way. Have you tried her favorite food or would ice cream work? Also, you may want to ask the pharmacist, somtimes they have ideas. I wish you luck and good health to your daughter. Best wishes, LJ

Re: New with many questions...

Submitted by Baby Sam on Tue, 2007-08-07 - 08:58
Hi Jessica, Our stories sound VERY similar. I have a 10 months old baby boy named Sam. Our ped. put Sam on reflux med when he was 4 months old b/c he was so stiff after he ate his food and his face often got red. The stiffness was more apparent than anything. Needless to say, when he was almost 6 months, I began to notice little "jolts". It appeared that he was being startled and I mentioned it to my ped several times. He said that all babies get startled. I too was wondering if it could be something with his eyes and we took him to a ped opthamologist. He would stare into space and I thought that maybe he was tired or just not interested. After insisting that there was something not right, we finally convinced our ped and we were at the neuroligist the next day. She said that Sam was having myoclonic seizures. Other than the EEG's, all the other tests ie. MRI, bloodwork etc have come back normal. Sam is also develop delayed. But the other similarity is the throwing himself backward. He has been on meds for the seizures for apprx 4 months. They were working great until about one month ago. We are in the process of increasing the meds or trying something new. As hard as it will be to do a 24 hour EEG, you will receive a great deal of information because there will be so many dr's looking at your daughter and asking you questions. If I can help you or answer any questions, please let me know. A few months ago, we went through what you are currently going through. The hardest part is not knowing. We still do not know what is causing Sam to have seizures and if he is delayed b/c of the seizure disorder. It is hard but you have to have faith and push on. Good luck and best wishes to you and your family. Allison

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