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My son's life story... and Im so confused!

Mon, 09/03/2007 - 10:25
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: My son's life story... and Im so confused!

Submitted by bradysmom07 on Mon, 2007-09-03 - 22:46
I'm sorry to hear about your son. This is a great website for info and support. My son, he's 2, has had seizures since 6 months. Have they determined yet if these episodes are seizures or breath holding spells? I know the latter is not serious and children do grow out of them by age 6. If he had an abnormal EEG which showed epileptic waves then you would definitely want to get him in to see an epilepsy specialist. After our second visit to the ER for seizures they did do an MRI and CAT scan to rule out structural abnormalities. If the doctors don't think these episodes are serious then I guess they wouldn't require other testing, but they can be wrong too. Mom, go with what your gut feels and be strong. I will pray for u and your family. Rachael

As many people have just one

Submitted by solis on Tue, 2007-09-04 - 01:28
As many people have just one seizure in their lives epilepsy is never diagnosed until at least two seizures have occurrred. http://www.epilepsy.com/101/ep101_seizure.html best wishes to you and your son, ~sol

Re: My son's life story... and Im so confused!

Submitted by Baby Sam on Tue, 2007-09-04 - 14:17
I just finished the book "Seizures and Epilepsy in Childhood A Guide" The book discusses breathholding spells. I found the book very informative and helpful. The worst is not knowing, I hope that your neuro is able to answer your questions. You should trust your instinct and if there is a test that you feel you need, you should get it. I spent one month telling our neuro that we should have another EEG, FINALLY we had one last week. Needless to say, the EEG showed constant activity and we are going for a 24 hr EEG tomorrow..... God bless and best wishes to you and your family.

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