Hi from worried Dad. U.K.

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Merc

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Hi All.

I'm a single parent to my beautiful 12 year old daughter. Katie has Ohtahara syndrome. She is unable to talk, walk or even sit up and is 100% dependant.
Recently Katies seizures have become much more severe and more frequent. I've had all the usual banging my head against a brick wall with the dr's etc.

Katie has full on tonic/clonic and after 4 minutes i administer buccal midazolam. Since Katies seizures have become more severe i am wondering if anyone who experiences these would be willing to tell me what she may be feeling during her seizure? I just want to understand as well as possible what she is having to endure. As i've said Katie can't talk so it's impossible for me to understand what she's just experienced.

After the seizure Katie sleeps and wakes occasionally in a lot of pain. It breaks my heart to see her like this and as her Dad i should be able to protect her from anything.

Thank You in advance.

Mark.
 
Hi Mark, welcome.

I often think that tonic-clonic seizure must be harder to witness than it is to endure. Of course I can't speak for your daughter, but from my own I experience, I can share that because of the loss of consciousness, I feel absolutely no pain or distress during a seizure. None! Not even a feeling of fear, or the memory of a nightmare.

Emerging from a seizure is a slow, disjunctive process, with parts of the brain and body awaking sooner than others. I may walk around or have a conversation before I am fully present and aware that I am doing so. If I have strained my back, or bitten my tongue, or dislocated my shoulder, then eventually of course I do feel pain or discomfort, in addition to the general fatigue and "hangover" that settle in post-seizure. While it is disappointing to have a seizure, it is not otherwise mentally discombobulating -- I've had enough that they are almost "ordinary."

When your daughter awakes expressing pain, do you know if she is physically injured? If you aren't sure, you might consider having an X-ray or CT done, just to make sure she is okay. Other than that, I'm sure your presence alone makes a huge difference to her, and is a source of comfort and stability.

Best,
Nakamova
 
As with Nakamova when I have a seizure I am unconscious. I don't even know that I've had it unless there is someone to see me actually have it I don't know that I did. I don't feel anything I just blank out.

Sometimes I will be awake during one but even then I don't know I'm having it. I think everything around me is normal, even myself. I understand what people are saying to me. I'll talk back and think that I'm saying the right words but what I say doesn't make any sense. Also with these I don't know that I've had it unless there is someone there to see it happen.

I've had a few grand mals and there was only one that I was aware of what was going on around me and really didn't know I was having it. The only thing with that one is that I knew I couldn't move my body on my own. Even with all of those I didn't feel any pain.

After a seizure I usually have a very bad headache and I'm very tired. I'll usually even sleep the day after the seizure too.
 
Part of the aftermath of a T/C for me is memory loss. I don't remember a thing after, and usually for 4-6 hours before. There's no pain if you can't recall it.

Jay
 
Hiya there Merc, let me start off by saying welcome to the forum. You will find a lot of support here from the forum, everyone here is great

For me, i remember nothing, nothing about having it and nothing after it.

The one thing I would say is the fact my whole body usually feels sore the next day so maybe that is something you could consider. i wouldnt worry about how she feels during it as she probably doesnt remember it. I would say to check her tongue after as I bite my tongue during it, and I'm hearing this is normal and it does make it blooming sore the days after, sucking an ice cube or an ice pop tends to help me with that.

Please don't start beating yourself up over this, you are really doing an amazing job, and I can't imagine what you are going through.
 
Thank You all for taking the time to answer. It has been a big help and allows me to understand a little bit better.

Katie was at her Mums on Sunday and came home with a swollen ankle. I think she may have had a seizure whilst in her her wheelchair that her Mum didn't notice. I took Katie for an xray and was told she may have a small fracture in the bottom of her leg. They have put a cast on and we have to go to the fracture clinic tomorrow. Bless her, she's such a little trooper and not much gets her down. It's tough to see her going through this.

Thank You All again.

Mark.
 
Hi there merc, feel free to ask away, even if its just something small, everyone is willing to help you through this tough time.
I understand it's tough for you, sometimes i worry its harder on my bf than it is on me. hes ALWAYS worrying, and i dont remember what happens during the seizures but its stuck in his head.
please take all the support you need from here and keep going as you are, you are being there and right now that is all you can do, so PLEASE dont worry that you are not doing enough.
stay strong
regards and hugs
sarah.
 
Welcome Merc, from another mom. I live in the Netherlands so out here on CWE we are like neighbours. My 12-year old special needs son has Lennox Gastaut syndrome caused by braindamage. He can't talk, can't talk or walk, he needs a 100% care just like your daughter. I do know several Dutch parents and their children with Othahara syndrome. I know what your are dealing with.
 
Hi Dutch Mom.

I am familiar with Lennox Gastaut syndrome. Katies condition could have progressed to West syndrome or Lennox Gastaut syndrome.

Very nice to hear from you.

Mark.
 
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