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Old 05-29-2013, 11:28 AM   #41
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Re: So my son just has a seizure......... :'(

I don't feel good about this with his EKG he has to have only 0-4 hours of sleep and I know he is GOING to go crazy and scream. I was also told by someone who had their daughter go through this (though she is 13) that they will inject to put asleep if needed. I am almost sure this will happen. He comes to me when he feels scared and I know he will be very frightened by this and will stick to me like glue. I almost feel like this is such a hassle and he hasn't had another "seizure". The more and more I describe it people I tell- nurses, family friend nurses, family and friends think it sounds like he could of been choking or having trouble breathing.

I'm in a hard place. I feel like it's not fair for me to decide what I think it is and not do the EKG and that it would be good to conclude it's not something neurological. But then I feel like it's going to be absolutely nothing exactly like last time where we went through months and months of testings and procedures to try to figure out...nothing. I'm so... lost

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Old 05-29-2013, 12:32 PM   #42
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Re: So my son just has a seizure......... :'(

Honestly if it were me I would want the EEG. He has had these episodes before and that is concerning. I know testing with a child isn't fun and sounds scary but EEG's are not nearly as invasive as many types of tests. We did the sleep deprivation EEG when Kearnan was 2.5. It sounded difficult, we had to keep him up most of the night and then drive over an hour without letting him fall asleep in the car. He had to be awake for the first portion of the EEG and he fought getting the leads put on (we had to swaddle him). The nurses at a children's hospital are usually very understanding. They allowed me to lay on the bed with him and he did wind up falling asleep long enough for the test. We did not find anything but we didn't really expect to either. He had an MRI later that day and he managed to sleep through it as well. I refused sedation for the MRI as they would not let me accompany him if he was under general and I wouldn't let him go alone but he slept through the entire thing as well as the ABR and the blood draw. He has had another MRI since and a growth hormone stim test which was long and invasive. We would like to do a swallow study and I am going to push for one.

If there is even a chance that these episodes are neurological I would push for the EEG. Chances are he will fall asleep and they can give him a sedative if he won't. If they see nothing I would push for further evaluations with an ENT for breathing issues and probably a sleep study. If you still find nothing I would continue to push for a 24hour EEG.
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Old 05-30-2013, 10:47 PM   #43
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I am so sorry for what you are going through. Be strong for him and don't show you are scared about a procedure or he'll be more scared. On this one where he needs to slerp, I'd bring sleeptime books, warm milk/your boobs/formula, pjs, stuffed friend, etc and cuddle. Maybe that'll help?

If these are seizures, I will give you a clue what he might want or need...I am epileptic. During the seizure, talk to him constantly. Assume he can always hear you. 2 seconds of silence is an eternity of blackness and very scary. Stay calm and tell him to be calm and breathe. Sometimes I would stop breathing and pass out so I needed to be reminded and praised that I was breathing well and that it would be over soon. Knowing you aren't alone is vety helpful. Make sure he feels physically safe. Once I got my foot caught in open bed springs. I'd often fall from the bed. I'd worry that I was injured. He might be too young to process all that though.

Afterwards I am exhausted. I'd just been flexing every single muscle in my entire body for a few minutes, obviously I'd be tired. So expect him to be groggy, offer oj or a pick me up. Sometimes I didnt even remember after the seizure, i was so tired and went to sleep. And let him get a lot of rest for 2 days.

I am sure this is all really scary for you. I wish you all the luck that all is figured out soon.
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Old 05-30-2013, 10:58 PM   #44
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Please get the EEG, and push for an appt for a MRI ASAP. My daughter had a seizure in October of 2011, and was diagnosed with a malignant brain tumor in December. Although childhood cancers are rare, it needs to be rules out ASAP. The EEG really isn't too bad, not compared to many of the other invasive tests they can do. My dd always has a hard time with sleeping and had none with this test. I would recommend getting it some through a children's hospital if possible. I have no idea why they are making you see an ENT? You need to push and advocate for the tests you need to rule put the worst. If he has another seizure I would DEMAND hospitalization to do an immediate EEG or at least a CT scan. Please keeus posted. Y'all will be on my thoughts.
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Old 05-31-2013, 06:01 AM   #45
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Re: So my son just has a seizure......... :'(

Thank you all for the great advice and kind words
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Old 05-31-2013, 06:01 AM   #46
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Re: So my son just has a seizure......... :'(

Quote:
Originally Posted by themaelane View Post
I am so sorry for what you are going through. Be strong for him and don't show you are scared about a procedure or he'll be more scared. On this one where he needs to slerp, I'd bring sleeptime books, warm milk/your boobs/formula, pjs, stuffed friend, etc and cuddle. Maybe that'll help?

If these are seizures, I will give you a clue what he might want or need...I am epileptic. During the seizure, talk to him constantly. Assume he can always hear you. 2 seconds of silence is an eternity of blackness and very scary. Stay calm and tell him to be calm and breathe. Sometimes I would stop breathing and pass out so I needed to be reminded and praised that I was breathing well and that it would be over soon. Knowing you aren't alone is vety helpful. Make sure he feels physically safe. Once I got my foot caught in open bed springs. I'd often fall from the bed. I'd worry that I was injured. He might be too young to process all that though.

Afterwards I am exhausted. I'd just been flexing every single muscle in my entire body for a few minutes, obviously I'd be tired. So expect him to be groggy, offer oj or a pick me up. Sometimes I didnt even remember after the seizure, i was so tired and went to sleep. And let him get a lot of rest for 2 days.

I am sure this is all really scary for you. I wish you all the luck that all is figured out soon.

What wonderful advice. Thanks for sharing what it is like and how someone can help.
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