Needing advice on how to handle my sons seizures?

My son has been diagnosed with absent seizures since he was about two weeks. He’s now five, and we were seizure-free for 3 yrs. Well, now, not sure. Right after Christmas, he complained of headaches and fever. Then all of a sudden, his legs hurt. We though growing pains. Expect my five years old screamed when you tried to make him walk or stand. I did take him in. But now his dr is pretty sure his seizures are back. But also nocturnal seizures. He’s pretty sure he is convulsing in his sleep along with rage seizures from what I understand pretty much a violent partial seizure. We are trying to buy a camera for his room as soon as we can. But I’m also supposed to record some of these absent seizures. For the dr, so he can see how he reacts to coming out. But as of this morning, I realized I’m a panicked mom. My son had one of his absents, and it was unlike the rest that I have seen — no, I’ve been told not to go in unless I catch him in a convulsion. How do I not panic?? How do I choose not to grab my son and grab a stupid phone? To me, my son is more important than a recording even though the dr wants it. I just want to make sure he’s ok. I want him good. This is the first I’ve dealt this it like this. Any advice would be appreciated.

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You’re right, it’s not easy to grab a phone when this is happening. Your voice will reach your son. The videos that you can share with the doctor will be very helpful in figuring out what types of seizures your son is having. So, you really are doing more than just videotaping the seizures. If you can use your voice while doing this, you’ll be soothing your son and helping him and the doctor by recording it.
Sending prayers for answers for you both!

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Medical marijuana works wonders.

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I would put him your bed so you can at least catch them all right now

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It’s not ever gonna be easy, but you have to do it for your son, so they know how to fix him

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Have they suggested a 24 or 48 hour EEG? My daughter went from have 100s of seizures a day to a handful with a medical ketogenic diet. As far as the recording, try your best to get what he needs. As long as he’s in a safe spot and stable breathing. Keep talking him through it. I’m sorry :pensive:

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I second the ketogenic diet !

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He needs to be on a medication or some sort of medical intervention. Seizures hurt the brain and if hes constantly having them then he needs something

Your doctor wants you to record the event so they can witness what is happening. They use this to know what kind of seizure he is having so they can form the best treatment plan. While I understand it seems absolutely silly to grab a phone while he is having a seizure, this is the best thing to do. Our 2 year old has seizures as well, his physician asks us to record the events, it’s helpful to them to know what is occurring. I’m really sorry, everyone that is suggesting diet changes… diet does not change the electrical system in the brain. It will NOT treat a diagnosed seizure disorder. This has to be treated by a medical doctor with medications. :roll_eyes:

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Hang in there and be clam for him. I’m sure he’s probably scared too. Do what the doctor says so they know how to treat him.

Ketogenic diet helped my great niece also.

In the uk you can request a seizure pad which is connected to power point if a seizure occurs a alarm will sound

Take him to a neurologist have an eeg brain scan done.

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Set your phone on record and leave it in his room.

If he is stressed out in kind of why he can have one my ex had seizures since he was a kid ask the the dr to try him on dyletium

And make sure he not stress out

You need to record it so the doctors can understand it. That’s most important for your son than your guilt of recording.

My son is 6 he will be 7 in March and had his first one when he was three years old. September was the FIRST EEG test that came by that he wasn’t having any. They want you to record so they know how bad they are and if he is having them in his sleep. Trust me I understand it is scary and it still freaks me out, it took awhile for Good EEG come back and I believe they had to find the right medicine and he is on 2 different kinds. Don’t give him to much sweets and write down every time he has one.

Prayers for your Babie though. :sob::sob: hopefully they find answers and get him on medicine that HELPS!

My 8 yr old has absent seizures started in kindergarten when school started. I credit the teacher and school nurse for noticing. She too was having them in her sleep I bought a cheap off brand fit bit that tracked and measured her sleep. She takes ethosuximide medicine twice a day.
When she had an EEG they could tell when and how many seizures she had