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Old 04-17-2013, 07:58 AM   #31
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That is the same age my ds started having his seizures. Since he has already had 1 eeg ask them if they can do a 24 hour eeg. He never had a seizure while they were monitoring him but he did have several burst that they said could cause a seizure at any moment. If you have any questions I will try my best to help answer them. Also, our neurologist wanted to do an eeg every 6 months to monitor any changes and to make sure his medicine was still working like it should.

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Old 04-17-2013, 08:39 AM   #32
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Re: So my son just has a seizure......... :'(

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That is the same age my ds started having his seizures. Since he has already had 1 eeg ask them if they can do a 24 hour eeg. He never had a seizure while they were monitoring him but he did have several burst that they said could cause a seizure at any moment. If you have any questions I will try my best to help answer them. Also, our neurologist wanted to do an eeg every 6 months to monitor any changes and to make sure his medicine was still working like it should.
That is helpful.thank you. He had one 8 months ago. But I'm going to push for another since it started up again. How many times a month would you say your son was having episodes? Also how do they classify it as a seizure? Before they were labeling it as "choking episodes/spasms" because he stops breathing when it happens
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Old 04-17-2013, 09:07 AM   #33
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That is helpful.thank you. He had one 8 months ago. But I'm going to push for another since it started up again. How many times a month would you say your son was having episodes? Also how do they classify it as a seizure? Before they were labeling it as "choking episodes/spasms" because he stops breathing when it happens
He only had maybe one a month until they started his medicine. I meant a 24 hour one if the 1 hour didn't show anything. The way they described the activity was that it was a burst that if had happened just a little longer it would have caused a seizure. He also stops breathing when he has his. He also had one in January at my grandmas because of some essential oils that she had out.
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Old 04-17-2013, 09:18 AM   #34
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Re: So my son just has a seizure......... :'(

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He only had maybe one a month until they started his medicine. I meant a 24 hour one if the 1 hour didn't show anything. The way they described the activity was that it was a burst that if had happened just a little longer it would have caused a seizure. He also stops breathing when he has his. He also had one in January at my grandmas because of some essential oils that she had out.
Sounds very similar to my son!! What did the 24 hour consist of and how did he do? My son was very young when he had the 1 hour. Idk how well he would be hooked all up at this age and the e.r. visit didn't go well. He was very afraid of anyone touching him except for me. And when did they start meds? How long has he been being seen for this? Sorry for all the questions but I feel like left in the dark lately since no one knows what's going on.
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Old 04-17-2013, 09:36 AM   #35
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Sounds very similar to my son!! What did the 24 hour consist of and how did he do? My son was very young when he had the 1 hour. Idk how well he would be hooked all up at this age and the e.r. visit didn't go well. He was very afraid of anyone touching him except for me. And when did they start meds? How long has he been being seen for this? Sorry for all the questions but I feel like left in the dark lately since no one knows what's going on.
It is exactly like the 1 hour one except it was an overnight stay in the hospital. He did great they brought him in several toys to keep him occupied. They started in June and we started the medicine in July. It has been almost 2 years since they started. We still have no cause for them other than his brain processes faster than his body can keep up with. That being said he is a very high strung child and very hyper active.
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Old 04-19-2013, 12:57 PM   #36
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Re: So my son just has a seizure......... :'(

So we were at the hospital today for what seemed like forever. No real answers of course but ENT has cleared him and referred him to Neurology. They did the scope up his nose and down to check his breathing tubes, vocal chords and what not -which seemed to be ok... we had to do this twice though. And then the barium swallow as well. He is not a happy camper and now he keeps choking since I'm guessing having that tube up his nose and down his throat made it feel itchy she said and he won't let me go to even pee. Big snuggles for the rest of the day to get him comfortable again and hopefully we can get some answers soon with the neurologist.
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Old 04-19-2013, 02:55 PM   #37
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Poor baby and poor mama! I hope you find answers soon.
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Old 05-25-2013, 06:56 AM   #38
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Re: So my son just has a seizure......... :'(

After weeks of having to be monkey in the middle between the Children's Hospital and the pediatrician center they FINALLY sent over all the info/paperwork/tests to his pediatrician to look over to give him a referral to a neurologist. So ridiculous, I sign a paper for them to send over ANY info automatically within 24 hours and it doesn't get there, then I call and "I cannot authorize it to be sent over, the pediatrician center has to" so then I wait 3 days for that to happen. Finally it has been reviewed and referred!

EKG in 2 weeks and then neurologist appt 2 weeks from then!
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Old 05-25-2013, 07:17 AM   #39
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Re: So my son just has a seizure......... :'(

Hopefully you will finally get some answers!
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Old 05-25-2013, 07:20 AM   #40
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Re: So my son just has a seizure......... :'(

So glad things are moving forward. It is so frustrating to wait.
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