Son had seizure out of the blue

Jessie - posted on 08/26/2009 ( 12 moms have responded )

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driving home from a friends house and it sounded like he was coughing and then choking looked in the mirror his eyes are rolled back in his head, foaming at the mouth, fitting. no answers anywhere got told lets just hope it doesn't happen again
what do I do with that

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Trina - posted on 08/28/2009

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My son had his first seizure at 14(2006). Was sitting on the couch playing a video game and had it with no warning either. He had EEG, CAT Scans and sleep studies done for the next month with inconclusive results. They just said it was the result of him playing the video game and not getting enough rest. Nine months later, he had another seizure and this time he was not playing a video game. He was asleep. He was hospitalized and diagnosed with epilepsy and put on anti-seizure meds. The EEG showed an abnormalty in the lower left lobe of his brain. He still has frequent seizures and takes 800mg dilantin a day. I agree with the mom who states that you go to another dr and also suggest that you are referred to a neurologist, they are trained in matters of the brain. Also if your son is of age to play video games, check the warnings on the games. Some games may trigger seizures. Children don't just wake up one day and have a seizure if there is nothing wrong. Get multiple dr opinions and I hope you find out what is going on with your son.

Danielle - posted on 08/26/2009

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I would go to another doctor... My daughter was diagnosed with something called 'incomplete lissecephaly' or 'pachygyria' when she was about 4 months old. I first noticed that she did strange things with her eyes- rolling them DOWN until nothing but white was visible. Then came these small spasms. I went to a few different pediatricians before one of them actually listened to my concerns and referred my to a pediatric ophthamologist. He then ordered a CT scan, that came back abnormal so from there we went to our neurologist who did an MRI and finally diagnosed her. I hate to sound paranoid when it comes to stuff like this, and I'm not saying that your son probably has a neurological disorder, but if I hadn't have listened to my gut and kept at it, who knows how long it would have taken for her to be diagnosed. We started early intervention therapy as soon as we found out and she's come a long way! So do what you FEEL is right- don't let anyone just brush aside your concerns about your child! You know him better than anyone! :)

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Leslie - posted on 10/10/2010

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insist on seeing a neurologist... then ask for eegs, and other more extensive testing.... I hope this helps. i hknow how scary this is. I can't imagine being you the day this happened!

Lisa - posted on 10/07/2010

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We are going through something similar. My dd had a seizure out of the blue about 19 months ago at 5. We went 5 months with nothing and then she had another one. Since then she has had several more. We have two conflicting diagnosis - one for NCS (neurocardiogenic syncopy) and one for complex partial epilepsy/ictal bradycardia syndrome. Nothing has showed up on the testing but her doctor did witness two back to back episodes and one was caught while she was wearing a heart monitor. We know her bp bottoms out and her hr drops as low as 10 to 20 beats a minute and then she seizes. So the question for us is is it the seizures causing the heart symptoms or is it the heart causing the seizures? So I have set up an appointment with an epilepsy specialist as Boston Children's Hospital and hope to get more answers. The stress is just awful - always on edge waiting for a call from the school or always checking on her.

Good luck with your answers and hopefully your son will not have any more episodes!!!

Stacey - posted on 10/06/2010

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My son has had 2 grand mals out of the blue 18 months apart. We've done all the EEGs and MRI. MRI was clear, EEGs show seizure activity in his brain, He was almost 3 when he had the second GM and at a critical place in developing language so I, along with his epileptologist, decided to take a wait and see approach instead of medicating. (The first ped neurologist he saw prescribed Keppra right away, but I was not comfortable with the possible side effects, nor his insistance on medicating so I found a new specialist).

Sandra - posted on 09/04/2009

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I have a son that did the same thing. I was at work (which was across the street) and my mother was watching my son. He was down for bed well he woke up and wanted out of bed so she took him out and went to her room. He acted perfectly fine and all of a sudden she said he was shacking and his eyes rolling behind his head. I ended up leaving work in a hurry and got to my mothers truck and seen for myself that he was shacking, unresponsive, turning blue and eyes behind his head. We get to the hospital and he's still having the seizures so they transport him over to Riley Hospital. Finally they stopped. We ended up finding out that he had a Grandma Seizure he was considered Epileptic. (Let me inform you that he's only 11 months old.) They were not for sure what caused it and I still don't know. He had 2 more episodes and all of a sudden he stopped having them. He is now finally off of Kepra and is seizure free as far as what we have been told. He is now 3 years old. I just have feeling that he will end up having them again, so we make sure that when he gets sick that his fever doesn't get to high so that we don't have to go through all of it again.

Mindy - posted on 09/03/2009

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I had a friend whose son had done the same thing. He was diagnosed with Migraines. He was on seizure meds for 6 months and they took him off of them slowly. He's been fine for over 3 years now. The doctor told them to get him either to the ER or an Urgent Care Clinic if he showed ANY sign of having more than just a regular headache again such as sensativity to lights, sounds or smells. My daughter has seizures as well. She hasn't had one in 3 years now thank God. She too got them out of the blue at the age of 13. They said she has a problem processing sodium properly. She takes 800 mg of Carbatrol ER daily. One in the morning and 1 in the evening. It's an older drug but it really seems to work wonder with her. She's 20 years old now and her Neurologist told us that she'll be able to live a relitively normal life including having her own kids. She will have to be on her meds for the rest of her life but she has Very mild side effects of being tired only. No developmental problems atall. She graduated from high school in 2008. Keep bugging you doctors until they give you an answer. I had second AND third opinions until we found out. Never give up.

Jessie - posted on 09/03/2009

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Thanks Danielle, just knowing Im not the only mother who checks on their child during the helps and a good tip with the video monitor I was using his baby monitor lately

Lisa - posted on 08/30/2009

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My 5 yo dd also had a generalized seizure out of the blue in March and then was symptom free for 5 months. The doctor said the same thing to us. Then in the past month, she's had 6 more "episodes" (I say episodes because it's unclear if it's seizure or syncope). Did your son have a full heart workup? It's really important to eliminate all possibilities. Many people get misdiagnosed with a seizure disorder when there is an underlying cause.

Currently my dd is under the care of a cardiologist, neurologist, her pcp and an ER doctor.

If you feel like your doctor is not giving you answers, then go to another one. At first, I also felt "lost" with no answers. I called our ped and asked her to get involved. I thought she could review the test results and give us her opinion and advice. We've been blessed with wonderful doctors who call me on a regular basis to let me know what's going on and they actually talk to one another and it feels like we're getting close to a diagnosis and plan of attack.

Currently we are narrowing down the possibilities to temporal lobe seizures versus vasovagal attacks. She doesn't really fit neatly into either group which is what is making diagnosis difficult. We're all hoping it's just an overactive vasovagal nerve.

Good luck finding answers!

Danielle - posted on 08/26/2009

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I know how that is! I bought a video monitor to use with my daughter because I was getting up so much in the night to check her breathing and stuff- great investment! How old is your son? I'm glad to hear that he's been doing well for the past 6 weeks! Let me know if there's anything I could ever do for you! I know that waiting for answers is hard and a lot of doctors just think moms are paranoid...

Jessie - posted on 08/26/2009

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thanks for that! We had EEG's done too and a CAT scan but nothing showed up. he's been fine for 6 weeks now but I'm so on edge. hes 7 and Im watching him in the bath again. I check him during the night. I will go to another paediatrician. Thank you

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