2. Big seizure CDKL5

Рет қаралды 57,661

4 жыл бұрын

CDKL5 Deficiency Disorder. these videos are posted for us to share with specialists involved in my sons care and also to add to the collection of different seizures for parents searching for answers with their own children. we know how hard it is and you tube is widely used by the piblic and the specialists in the search for clues and answers.

Пікірлер: 26

@teenrandomgamer1785 4 жыл бұрын

That didn't even look like one seizure! It looked like he came in and out of multiple clusters! I hope he's all better now. I'm 17 and have Tourette's and epilepsy and just had a seizure in front of my new friends at lunch today... they were super supportive (which is really hard to find in people! Most just stop talking to me) so I understand that struggle. This was a while ago, but I will pray for him to stay well!! ❤️

@SimoneLeembruggen 4 жыл бұрын

Thank you. Unfortunately it is the main issue with CdKL5 deficiency disorder. He is doing as well as i can help him to do. It is my lifes focus

@teenrandomgamer1785 4 жыл бұрын

@@SimoneLeembruggen I'm sorry to hear that and hope he's staying well during this time. Fortunately I am now on a diet schedule and medication that controls my seizures so my most may be one a day and a small one at that. You are so strong and so is he! ❤❤

@binkybunnysway943 3 жыл бұрын

Oh bless him I'm so sorry. Madness how humans and animals alike suffer from these my little house bunny has them! Keep fighting little man. It must be so frightning for you I can't imagine my child going through this.

@timofeykozyrev2447 3 жыл бұрын

This is not as hard to watch as other seizure videos, but i still feel bad for him! Hope he gets better! (Why was this in my recommended videos!?)

@amandafranco4300 4 жыл бұрын

I would go get this poor sweet baby checked ASAP breaks my heart in a million pieces

@JCMDRHProductions 4 жыл бұрын

Same here

@irisheyesofbelfast 3 жыл бұрын

You're seeing ONE MINUTE of his life. This wasn't posted for advice on what to do for him from a stranger. He's clearly been seen by a doc multiple times and they record it to show his doc. Probably also posted to educate others about this particular type of seizure. Do you really think they would post this without having consulted a physician????

@claudiavillatoro3433 4 жыл бұрын

How in the world you had the courage to record that

@SimoneLeembruggen 4 жыл бұрын

Unfortunately we need to. Its how we get him help. This is what we need to show neurologists and seek help round the world. And he has so many. Up to 60 per day. But currently only up to 20. I will never stop trying to help my boy

@MyMumHasEpilepsy 4 жыл бұрын

That must have been really scary, when he first started having those. What type of seizures/epilepsy does he have?

@SimoneLeembruggen 4 жыл бұрын

Thank you. Unfortunately it isnt scary after seeing so many. Its normal life. He has a complex intractable seizure disorder due to CDKL5 deficiency disorder

@cassandraporter3068 2 жыл бұрын

Why is they holding his arms down

@kateseymour965 3 жыл бұрын

Just To Sad

@natashaangel1611 4 жыл бұрын

How is he feeling now and how old is he there and stuff

@user-xu2il7ij8w 4 жыл бұрын

あ

@SimoneLeembruggen 4 жыл бұрын

He is 5 now and as good as i can help him to be. We are still fighting and searching and trying

@LACajuninNC1 4 жыл бұрын

Not supposed to stop him from seizing by holding arms... He is in bed and safe. Turn him on his side, too... I hope he is better these days

@SimoneLeembruggen 4 жыл бұрын

We do this not to try and stop him seizing obviously, but to protect joints from extreme end range motion. What we do for my boy and what you do can be different and thats ok. This is what we do

@LACajuninNC1 4 жыл бұрын

@@SimoneLeembruggen I understand. Especially now that I see he has other inflictions that cause the need to protect joints. I'm sorry if I offended