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New to this site
Tue, 04/10/2007 - 10:33Topic: Parents & Caregivers
Hi my name is Kerri and my 10 month old daughter was diagnosed with complex partial seizures in the front right lobe when she was just 6 months old.
I am just wondering if anyone else has a baby this young with epilepsy. I have 2 older children that do not have this, so i am very new to it and I am still learning. She is not controlled yet and is on Phenobarbital and Trileptal. She also rarely sleeps. not sure what else is next for her but it would be nice to talk to someone else who either has a child or had a child who is now older.
Anyway thank you for listening.
Comments
Re: Re: New to this site
Submitted by tink01223 on Tue, 2007-04-10 - 16:39
Thank you so much for writing back. My daughter has had the seizures since she was born also. Her MRI was normal and her EEG was abnormal. We weren't sure what was wrong with her as she never had the classic seizure. She just screamed non-stop for the 1st 6 months of her life. I will pray for your daughter and I hope all is ok for her with the results. My daughter is making her milestones and all seems to be ok except she still has breakthrough seizures ever once and a while. Please let me know what the results of your daughters MRI. Her seizures seem to affect her behavior, anger and sleep.
Kerri Drake, mom of Ava-Marie, 10 months.
Re: Re: Re: New to this site
Submitted by krissy parra on Tue, 2007-04-10 - 17:52
hi again- yeah we also didn't know what was going on at first since complex partial seizures are not the classic seizure you think of. because of this I cant leave my baby with anyone but my husband or mom because others just dont understand I had her in daycare for about a month and a half where I work and I went to go check on her and she had been in a seizure for about half an hour (based on how they said she was acting)but they just thought she was tired after that I took her out of daycare and rearranged my sched. to be home more alternating with my husband. when Rose has a seizure she stares alot and her breathing and heart rate become rapid its like shes awake but the lights aren't on I can get her attention but only for a few seconds they use to last for hours (up to 12) before she was diagnosed now after 5 min we give her diastat to bring her out of it. I am glad to hear Ava-marie is meeting all her milestones. my dad has epilepsy and he still does everything a "healthy" person can do when I was younger his seizures where really bad for years but now he has been seizure free for over 16 years so even though I wonder if Rose's seizures will ever stop I know its possible the docs have told me about 70 % of babys will "grow" out of them I try to stay hopeful only time (a long time:-( )will tell. how old are your other kids my other daughter Lilly will be 5 next month and will be starting kindergarden this fall this whole event makes me worry about when it comes time for Rose to start school. you and your family will be in my thoughts and I will update you with Rose's MRI results though we probably wont hear anything until next week sometime.
Re: New to this site
Submitted by krissy parra on Tue, 2007-04-10 - 11:55
hi my 12 month old has complex partial seizures they started when she was 4 weeks old but where not diagnosed until she was 5 months old her eegs and lab work where all normal but then the mri showed that she had a brain tumor they removed most of it in november but not all due to the location she goes in this friday for another mri to see if it has grown back or not. she is on topamax and keppra but she still has seizures about 1 - 2 times a month. I have an older child who is healthy no problems. but I thankful rose is devoloping normally meeting all her milestone. I still worry what the future holds but I try to just enjoy each day and not dwell on the fact that she is diffrent and will have more to overcome.