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My son's life story... and Im so confused!
Mon, 09/03/2007 - 10:25Topic: Parents & Caregivers
My son has been having seizures since he was 12 months. He has also been a breath holder since birth. Around 9 months he started holding his breath to the point of passing out, then at 12 months he came to after passing out, but he wasn't there. His eyes were blank and his arms and legs were rigid. I thought he was dead... I had never been so scared in my life. After taking him to emergency via ambulance i saw three doctors, to which all of them said he did not have a seizure as seizures cannot be provoked. Thus starting my long journey to find out what was wrong with my son.
2 months later he had a nother passing out episode to which this time his whole body shook (It looked like he was doing sit ups) and he took much longer to come to. He had had a low grade fever, so after a million tests (ECG etc.) he was sent home saying that he was fine. Once again I was not satisfied so off to a ped who looked into and EEG. The results came back he was fine, so I was then accused of being an awful mother who took her child off formula to early and that basically he was anemic and to just give him iron and he would be fine.
My son is now 22 months. He holds his breath up to 4 times a week, sometimes all in the same day, and passes out, and 3 out of 4 times his eyes roll back he stays stiff and then comes to, and is so tired and clingy. The other day he slept for 4 hours after having one.
Since the last EEG I was referred to another ped in which they did another EEG at a hospital for children. The EEG was completed in July, I have been playing phone tag with the doctor since then. Just on Friday she calls me to tell me my son has epileptic abnormalities on the left and centre of the brain. I was shocked. She said that only because he had the one major seizure back in December to not give medication and to just keep an eye on it, as the side effects are worse.
So now I am so confused. Does this mean he has epilepsy? Do they just grow out of it? What about the breath holding? Should I be doing more tests? Like an MRI? I really don't know. If anyone could help me and my son...
Comments
Re: Re: Re: Re: Re: Re: My son's life story... and Im so confuse
Submitted by bradysmom07 on Fri, 2007-09-07 - 22:19
Hi Allison,
I'm glad things went well. I don't know what they mean by background being age appropriate. During one of Brady's EEGs they found background slowing in one hemisphere compared to the other, this was after he had a 6 minute tonic clonic seizure. His repeat EEG was normal so it's all fuzzy to me. I tried to research but was even more confused, sorry I'm of little help.
When u were talking about Sam's startles I was shocked how similar this sounds to what Brady has. It's hard to explain but he always has been sensitive to loud noises, one time when I turned on the vacuum he had a startle that looked like a small seizure, only a few seconds. Then once he did this again to the sound of the phone ringing. These episodes happen alot when Brady is sick. I asked his neuro if being startled can cause a seizure, he said the noise causes the seizure. Does Sam have these startles everyday?
When Brady was first diagnosed at 8 months they said he had a form of myoclonic epilepsy but after having a few partial/complex they changed it to partial/complex epilepsy. I've heard other parents say that they have had good luck with Zonegran. I hope it doesn't have negative side effects for Sam. I'll be praying, God Bless, Rachael
Re: Re: Re: Re: Re: My son's life story... and Im so confused!
Submitted by Baby Sam on Thu, 2007-09-06 - 20:40
Hi Rachel, We are home and things went well, Sam did so great. We brought a DVD with Baby Einstein so he watched it while they put the leads on his head. We could not believe how distracted he was! The doctor determined that approximately half of his startles are actual seizures. The other half are truly startles and not seizures. It is somewhat concerning why he startles so easily....His EEG showed that the seizures have not changed, they are still myoclonic. He did say that there is a chance that he could develop simple partial b/c they did see an occasional spike in a specific region but they never manifested themselves so it may occur or may not occur....I am hoping desperately that they do not. He did say that his background was more age appropriate. I am really confused by that. Do you have any information or ideas on his statement? All in all, the information that we received was positive. He did say that myoclonic seizures are very hard to control and that we will try to control them as much as possible. I desperately hope that the new med Zonegran will help him. I am so incredibly happy for Brady that he has been seizure free for 7 months, Hurray!!!!!! He is too young and too cute to have any more hospital visits! He needs to play outside, enjoy his family and go through those terrible two's seizure free! Thank you for the advice and for listening. Best wishes Allison