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.
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!
Medical marijuana works wonders.
I would put him your bed so you can at least catch them all right now
It’s not ever gonna be easy, but you have to do it for your son, so they know how to fix him
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
I second the ketogenic diet !
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.
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.
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. 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
My sister has epilepsy. She has the big grand mal seizures occassionally and the little one that you can’t see are pretty much constantly happening. They did a test at one point where she stayed in the hospital hooked to monitors for a few days so they could try to pinpoint when and where the seizures where coming from. A few years ago they put an implant in to help, but she still has them.
I would check for lyme disease first.
If he’s on medications check they haven’t changed it recently. I.e from brand to generic (it does make a difference).
Have them order a 48 hour video eeg
Might be the medication itself and who the maker is. The fillers may cause a problem. Phenobarbital is harmful to the brain for children and you shouldn’t drink milk with it.
What do his absence seizures look like??? My son has them, they are pretty quick staring spells it’s like he just spaces out for a few seconds send then he’s back to reality he knows when he has them, his tonic clonic seizures are very different from that, those, are pretty much the only types I know much about. How Chinese your doctor thinks he’s having night seizures??? And if that is what he thinks why haven’t they called for am over night EEG??
Im the one who asked the question. I finally told the rest of the family. Sorry. Hes no longer having absent seizures. They are bow atypical absent seizures which cause him to go limp. He wasnt like that before. He had another one this morning in the bath. And i made the choice to take him out of the tub. His dr wants that last 1% before we go to a specialist. As weve already done eegs and they came back with no brain damage and the neurologist let us go. They have been gone for 3 yrs. And all of a sudden they are back. Dr is pretty sure hes having diffent types of seizures at this point but really wants me to catch his ones during the day. This is scary since ive always dealt woth absent seizures never has my baby went limp until yesterday. And then his 3 yr old sister wants to help him. Im doing my best. I never saw my self as one to panic when my child needs me. But this is not what im used to and im just lost. I am also just trying to find a neurologist to see of we can just get him in incase i cant catch them.
Can you set a nanny cam next to his bed?
Record the damn seizures. You shouldn’t be grabbing at someone who is having a seizure anyway. Get a camera for his room, and possibly another one for whichever room you use the most at home as a family.
As for the panicky part, maybe work on doing a first aid course? Knowing how to react in an emergency situation can help quite a bit with controlling your fears.
My brother used to have them all the time but he would stay on his medication and every year he would do tests to make sure they wouldn’t come back .
Stay calm if he sees you panicked he will panick be strong mama and be there for him I have absent seizures from time to time mostly when I’m getting over whelmed I’ll stop what ever I’m doing and stare blankly at what ever I’m facing and forgot what I’m doing I don’t think I don’t move I freeze and my eyes start blinking like crazy only last about 30 seconds then I’m back to what ever I’m doing like nothing happened it’s rare it happens it’s only when I’m super stressed I don’t respond well to stress it’s not that bad just breath record what you see get a baby monitor with a screen and pencil and paper ready
Ouuuu I feel you. We just went through all of this with my daughter who is 2. They wanted me to take videos as well but all I could ever do was run to her and hold her until she came out of it… I never once thought to pull out my phone and record her “suffering” … I wish I had some advice for you on how to just get it done … but unfortunately, I don’t. It was actually my daughters daycare who finally managed to capture videos of my daughter seizing for the doctors to see. Good luck, I’m sure you’ll figure out a solution. The videos really are SO helpful for all the doctors… it’s just such a struggle to get them or to even think of taking one over rushing to hold and console your little one
What about medical marijuana just a thought
Wow that’s fukd keep him in hospital till they see it with there own eyes That’s not good enough at all
I wrote a paper on medical marijuana for a child development class I took and there is strong evidence supporting medical benefits from marijuana to cease, prevent, and lower the chances and severity of seizures. There are different strains that will help with different types of seizures, I know the white widow strain is exceptionally good for epileptic seizures. There’s hundreds of ways to take it too, there are topical ointments you can rub on a child’s chest or neck and candies and all sorts of ways to ingest it in SMALL doses and without smoking it.
Get a second opinion, and I would also recommend CBD oil as well. Breathe… I was told to record it as well. Which I did. I found it helped me keep track of the time and what was going on… I felt soo useless that I couldn’t help my daughter. So I felt that recording it was like me helping her. And I would talk to while recording. It is okay I’m here your okay I’m here. I love you. It be over soon your okay… etc. Recording also helps the doctors on what is going like what the body is doing what ways the eyes are going to help determine what side of the brain is causing it. Always have your phone ready to record and as your recording remove everything that is a danger. My daughter had four back to back. That was the most scariest time of my life. Your helping your son when you record and helping the doctors as well it not the fact oh your on the phone. It is documenting everything while it is happening. Good luck i hope you get answers. And most doctors will ask you to record it is okay to panic while your recording… I have done it but you can hear it in my voice. Sometimes the phone was shaking because I couldn’t keep it still. Look at this way your helping your son even though there is nothing you can do. Look at it like your protecting your son and helping him. I would always close my eyes breathe clear my head clam myself down and go through the steps of what I needed to do then do it.
Definitely a new doctor. My son has seizures and it’s a parents worst nightmare watching your child have a seizure. Prayers for you and your son.
A new doctor ,one that understands bedside manner’s. I started with them as a youngster seemed to stay at bay for almost 15 years and they have come back . I had all kinds tests done as a peanut ,new doctor would be were I would be going.
They are very scary! Because you can tell by the way you feel and some people have oraues that lights you sometime have in your brain that only you can see,And know matter what it’s coming you can’t it! Tell him to let you know if he colors in his eyes from the inside of his head . Just lay him down on the floor and tell him you will set with him and hold his hand and tell him your right there and will be there when it’s all over holding his hand and letting him know that he’s not alone!Don’t act worry! !!!If he sees you scared he will get scared. Just get him a pillow for his head .You can do this with your son because your his Super Mom, His Super hero that will kept him safe throughout all that Yuki stuff , he might have a headache afterwards. Keep pain reliefer on hand but if it’s a full on attack watch his color if you think he looks blue lay him on his side check his mouth for vomit, Do not put your fingers in his mouth, BECAUSE HE CAN BITE THEM OFF!
You need to speak to your dr again and explain.
They can do night trials in hospital aswell which would no doubt be useful