Tonic Clonic Seizure in Doose Syndrome

My 4 year old son having a mild tonic clonic seizure. He's gone from around 1500 seizures a month to about 600 thanks to the ketogenic diet! He is on a spctrum between lennox gastaut syndrom and doose syndrome.

Read about Ethan's journey here:
one-two-six.blogspot.com
And help make Ethan's wish come true here:
feetinthesand.org

Category:

People & Blogs

Tags:

• seizure
• seizing
• tonic clonic
• grand mal
• doose
• MAE
• LGS
• lennox gastaut syndrome
• myoclonic aestatic epilepsy

[tarynharrell]

Yes, probably unusual, but he has had tonic-clonics last upward of 20 minutes. He had a 6 minute one yesterday that only stopped after diastat was given. He's only 4 so he doesn't understand what a seizure is, but from talking to him he doesn't seem to remember anything. He was video chatting with his aunt before the one yesterday, and he doesn't even remember talking to her at all today.

[wareaglegirl96]

I cant stand this...God bless hi and you...I pray that God gives you a miracle as he did my oldest daughter....She has been seizure free for 12 years now....How is he doing now?...believe and pray....

[mrweprank]

I dont want to sound awful but I really don't think I could live with that happening so many times a month

[AtomRage]

600 sounds bad enough but 1500? wow, how the hell do you cope with that. you have a beautiful boy and you are a beautiful parent. Hugs xx

[SmittyTuck]

You handled it well mom! As a Paramedic and a father of 2 (6 and 4) it is always hard to see this in kids and brings a tear to my eye every time! Hope he recovers well from this

[Penelope416]

I'm not sure, but I think I've been having seizures with my sleep paralysis. The other day I woke up and was paralyzed and found myself--- my head jerking back and forth uncontrollably. I remember my eyes rolling back as well.

I'm sorry for you son, and I hope there's a better treatment out there for him. It's so sad to see people suffer from this especially children.

[dreamichelle]

Thank you for this video. I will soon be the caregiver to a 4 yr old with Doose Syndrome so this was very helpful in understanding what his seizures may be like.

[dusting96]

I feel bad for him:(

[LuminolBlue]

@pagodnastring11 Interesting. Thanks!

[pagodnastring11]

@LuminolBlue its normal to have a seizure within 3-5 minutes but if the seizure is over 30 mins or so, it might be a status epilepticus which is an emergency. people who experience seizure have no idea what is happening during and before the seizure, that is why they have to be oriented after.

[asherzephyr]

@tarynharrell I'm in medical school and we just had a lecture on seizures. I didn't realize there were so many types and different presentations. Thanks for sharing.