Benign Rolandic Epilepsy and Breath holding

Amanda - posted on 07/31/2009 ( 3 moms have responded )

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Does anyone else's child have this? My son was a breath holder since birth, and at about nine months old he started holding his breath to the point of passing out. Then about a year he passed out and had a seizure due to it. 4 peds later and 2 EEGs, 1 ECG an overnight stay in the hospital.... he was diagnosed with Benign Rolandic Epilepsy, in which they are supposed to grow out of by puberty. However all the info I have recieved on its, states that they have seizures at night that feel like pins and needles. My son is almost 4 and has been "seizure free" and breath holding free since just over 2, but I'm not sure if this is "normal" since he was diagnosed with Epilepsy, but we've really only seen a few seizures caused by the epilepsy not by the breath holding. Not that I want to be the wisher of gloom. We thank God every day that our son is now past the brunt of it, but a part of me worries that either he was mis diagnosed (is that possible) or he will end up getting them again. Just wondering if anyone elses child has this diagnosis.... oh and he never needed medication. We were looking into getting it, but he was so young so were debating, and then the seizures stopped.

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Amanda - posted on 08/22/2009

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The problem is that I dont' have a neuro anymore, because the breath holding seizures stopped. But just the other day he had another breath holding spell, which I know is different then the Epileptic seizures. I have made another appt to be re refferred to his ped just with school starting etc. I'm beginning to really worry.

Ashley, the tests are hard to watch your child go through, but knowing what they have is a lot better than not knowing, at least that's what I found. And go with your gut! It took me 3 peds to find the one that I could finally trust. Thankfully my fam doctor was amazing, and very supportive.

Do either of your children sleep very restlessly. Because children have bad dreams etc. I'm finding that I'm questioning whether or not he is having a seizure or just a night mare. But he has always been a restless sleeper going into sleep and coming out of it.

Ashley - posted on 08/21/2009

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my daughter hasn't been diagnosed but I just wanted to say "thank you" this post describes my little girl to the T. I have been wondering if I am just over-reacting to these seizures. I constantly live in fear that I will get a call at work saying she has had a seizure. They aren't constant but they are often enough to worry me. Also I have seen her shake in her sleep. I will now make another appt. with her Dr. and go on with the tests that I have been avoiding because I don't want my daughter to feel like a lab rat!
THANK YOU

Miranda - posted on 08/11/2009

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My daughter was 3 when she was dx with Benign Rolandic Epilepsy and after 3 seizures she was seizure free until she was 51/2. We did not start meds util she was having problems with school. She is taking Keppra and Lamictal now. She also has absence seizures. From what our neuro told us is that this type of epilepsy you don't always have seizures. He also said that the seizure activity gets worse between the ages of 7-10. Hope things are going well. Just go with what your neuro says and what he finds on the EEG.

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