My son is 25 mos old and he has episodes (that we were told were breath holding spells) with and without a preceding trigger. His episodes progress like this: stops breathing, goes stiff, entire body arches to a point it seems he could break in half, one arm bends up and curls into his body, while the other is stiff and straight down his side, his body seizes and his eyes roll to the back of his head and then he goes limp. After each episode (he has 3-4 a day) he is very worn out, he tends to sleep for an hour or so. We've had 2 EEG's (one 40 min & one 90 min, they were sleep deprived so he slept through the tests), EKG, Echo, 24hr holter monitoring. Everything came back normal. The 40 min EEG, and heart monitorings were after his first severe episode(14 mos old). At this time we were getting breaks from episodes, we don't anymore. The doctors seem so pleased with the results of these tests, but I feel like this can't be normal. The neurologist we just saw during Brayden's evaluation told me that they wanted to do a 24hr EEG, combined with heart monitoring and video recording to capture the whole thing. Instead they did a 90 minute EEG, told me the results were normal and to follow up with the pediatrician and another hospital if I had any questions or concerns. This doctor was my second opinion. Now I am lost, frustrated, and just tired of my son being disregarded by the medical profession so far. I feel I have valid reasons for being concerned because there have not been any episodes during a test to confirm if there was anything abnormal going on. I understand that an epileptic person has abnormal activity in the brain even when they aren't having a seizure, I also have read of confirmed cases of seizure disorders where EEG's come back normal. Can you please help me? You can read more of Brayden's story at BraydensBreathHolding.blogspot.com.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I cannot tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
I’m sorry to hear about the difficulties that your son is experiencing. Although it is not clear whether your son is experiencing breath-holding spells, they can be frightening experiences for family members to experience. If your son has not had his typical episode captured under EEG monitoring, it would be worthwhile to have him evaluated in an epilepsy-monitoring unit where he can stay for 1 or more days. This will help clarify your son’s diagnosis, and provide peace of mind if the EEG pattern is favorable.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
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