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My daughter just starting having seizures

Sat, 01/20/2007 - 11:33
My daughter will be 2 1/2 next month and has had two seizures-that we know of. She had her first one in sept and they did a EEG and it was normal. We were told there was a good chance she would'nt have anothone but she did on christmas Eve. She had a EEG and MRI and they both were normal. We don't see the neurologist untill feb 12th so I'm still not sure If she has epilepsy. They started her on Topomax but she had horriabe side effects with that and now she is on Triliptal and she seems fine. She has had two weird episodes where it looks like she is seeing something and has become frightened. She told me to look up the otherday and was staring st the ceiling. I was told it could be a aura but does that mean that her brain is still producing seizure activity? When she had both seizures she called out to me in a paniced voice and seemed out of it and then would fall into me and her eyes would shake back and fourt and roll a little and her head would bob. Does this sound like a simple partial seizure? This is all so new and I am tying to understand all I can to help my daughter.

Comments

Re: My daughter just starting having seizures

Submitted by warren on Sat, 2007-01-20 - 12:54
My son has just started topamax, what were her side effects. My son had was seeing things before he was put on topamx and that is why they think he is having seizures .. very worried about side effects of this drug.

Re: Re: My daughter just starting having seizures

Submitted by lilliansmom on Sat, 2007-01-20 - 13:05
Lillian was only on it for two weeks and we saw effects by the third day or so. Lillian doesnt cry often at all and all she did was fall apart. She would several tims a day lay on the floor,grab her head and complain about eye pain. They stopped it imed and we had her eyes checked and they are fine but I guess Topomax can cause eye problems. We are on the second week of triliptal and she seems to be doing fine but I think she feels sleepy this week since we have increased her dosage. How old is your son?

Re: My daughter just starting having seizures

Submitted by mama bear on Sat, 2007-01-20 - 15:03
Hi there, I am so sorry to hear about your daughter. I wanted to let you know that I am also a mother of a child that started having seizures at 2 1/2 (see blog). I am sure this is a terrifying time for you, try to hang in the best you can, IT WILL GET BETTER! Just so you know, sometimes the "cry out" that you hear before they have the tonic clonic is their body stiffening causing their lungs to expel air, so she may not be aware or scared as she appears to be. Another thing I want to tell you about is to investigate putting her on a pyridoxine 2 week trail. Pyridoxine is actually vitamin B6, and there are VERY FEW people out there that are born with a pyridoxine dependency and deficiency causing them to suddenly have seizures. A new epileptologist that saw my son after his last cluster started him on 100 mg of B6 a day and he has not had a seizure since! It is very important of course to keep your child on her other meds. This is a very long shot, and most doctors do not put children on the trial as there is not yet enough testing evidence to substantiate that it stops the seizures. I have met one mother in Calgary (where we live) that has had complete success with her son and the B6 completely stopping his seizures. I am trying to let every parent know about this because even if it is not the answer for my son, I can't help but think I found out about it for a reason, maybe for your daughter! I am so sorry this is happening. I do know how scared you feel, and how you have to watch her every second now. I hope that it gives you some comfort to know that my son had a tonic clonic that lasted over 20 minutes and he is still his sharp self learning new words and talking in longer sentences every day. There are a lot of scary stories out there and I swear I have read them all. It is great to be informed, but listen to your instincts. You know your daughter better than anyone else, and when things don't seem "right" pay attention to those feelings. I am sure she is in great hands, and we will say a little prayer for her at this end in the hopes that things get better soon. Good luck, and please let me know how she is doing. Tresa (mama bear)

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