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Please pray for DD -- she had 3 bad seizures yesterday

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unsinkable

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She is still in the hospital now. DH is with her while I came home to shower & see the boys.

 

She might be able to come home later this afternoon if she doesn't have a seizure or have anything else happen.

 

She hasn't been this bad since she was diagnosed 10 years ago. She had a big one at home and one in the hospital. They released her a few hours after the one at the hospital and she had the biggest one in the car as I was driving her home.

 

I was so terrified that she was going to stop breathing and die in my arms in the gas station I had pulled into when it started. I was around a mile from the hospital but I couldn't drive back because she was nearly in my seat with me. So I sat there, waiting for the seizure to stop and I was begging God, just begging Him to let me get her safely back to the hospital. It lasted about 3 minutes and when she stopped seizing, she was unconscious.

 

I drove back with her leaning on me, she was completely out. I put my hazards on and honked my horn because I was hoping a police car would see me and help escort me or something. I got back to the ER and ran in to get help. They came out with a gurney and took her to a trauma room.

 

(this security guard was so nice. He parked my car for me and then brought me my keys.)

 

It was just surreal. One of the attendings was trying to convince a nurse that I did indeed mean that DD was discharged at 9 PM today and not 9 AM. And the nurse kept saying but that was just a little while ago!

 

By this time she was conscious but completely not herself. She kept yelling "leave me alone" over and over and "mommy make them stop." She hadn't acted that way ever in her whole life after a seizure. They finally gave her ativan in the hopes it might break the cycle of what was keeping her so hysterical.

 

CT was normal. Everything else was normal. Neurology thinks it's just time for a meds dose increase. I hope that is it.

 

Please pray for my sweet girl. And for the rest of us. I was at the end of my rope a while ago.

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Denisemomof4

Denisemomof4

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I'm SO sorry! How absolutely TERRIFYING!!!!! I pray the neurologists get to the bottom of it!!!!!!!!

 

Have you ever researched neuro/biofeedback for her seizures? There's a man in NH who got his daughter further along than her neurologist ever could with conventional treatment. She lives a normal life now and will always have to take medication. Before neurofeedback, he said he was completely losing his daughter. :grouphug:

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*~Tina~*

*~Tina~*

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I'm so sorry for what your family is going through. My dd has a refractory seizure disorder and we've been there, done that - many more times than I care to remember.

 

Definitely get some diastat to keep on hand. I'll be praying for ya'll!

 

Blessings,

¸.·´ .·´¨¨))

((¸¸.·´ .·´ -:¦:-Tina ~

-:¦:- ((¸¸.·´*

http://seasonsoflearning.blogspot.com/

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unsinkable

unsinkable

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UPDATE:

Thanks so much everyone!

 

She's home and resting.

 

I wish I had the energy to type it all out about what happened and how it all progressed...it was all so bizarre and atypical of her seizure pattern. I think she was getting auras that scared her and then she was cycling thru some long absense seizures until she had the big tonic-clonic seizures.

 

And now that I am typing it, I realize that the big seizures were about 3.5 hours apart. Just so strange.

 

I am so glad she is feeling better.

 

We got a new script for the diastat...I just can't imagine using it on a teenager?

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Ali in OR

Ali in OR

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I hope your daughter stabilizes soon. We live with seizures here and I guess the frequency of them makes them a little less scary. We have several each month. Dd almost always comes out of them on her own, but they can go on for 5 minutes. She does not get blue lips or have other signs of breathing problems. Our protocol is that we don't pull out the diastat until we hit the 5 minute mark (actually more commonly we use the diastat when she has cluster seizures--one after another). I would not hesitate to give diastat to a teenager who is seizing--it's the fastest way to get the potentially life-saving medicine in them. Using it is scary the first time, but when you know how your child reacts to the medicine it isn't bad.

 

We don't always know why dd is having seizures, but two very obvious triggers are coming down with an illness or lack of sleep. If dd is getting sick, a seizure is the first sign we have of it--before fever or coughing or anything else. If we keep dd up too late or if she has trouble sleeping, seizures the next day are likely. Not sure how old your dd is, but seizure patterns can change during puberty. Good luck getting everything back under control.

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Carpe Diem

Carpe Diem

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I am so sorry to read about your daughter's seizures. I saw a woman have a seizure and it was very alarming. I can't imagine watching my child suffer through a seizure. I am glad you are home and that she has had an adjustment to her medication. I pray that this will be the answer she needs.

 

:grouphug:

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Melissa in Australia

Melissa in Australia

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:grouphug:

seizures are awful :grouphug:

I use to think seizures = epilepsy or brain tumor, until my sister started getting them, she has some form of Multiple Sclerosis in her brain, not spine. which gives her seizures, apparently that form of MS isn't as debilitating. She has had to be put on life support twice for three days at a time, because they just couldn't stop the seizures.

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sheryl

sheryl

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:grouphug::grouphug::grouphug:

 

The Lord has brought you and your dd to mind quite often. So many in the last few months have posted about dc's seizures and I kept a list of names and now I can't find it....to pray specifically. But, I'll continue to pray for your precious dd and look for the list.

 

We pm'd and I explained that my dd has controlled epilepsy as well. She has NOT started her cycle yet, but hope that she continues to do well.

 

I just am at a loss for words. However, when I read this it indicates that perhaps a 2nd opinion is in order. I don't recall what you mentioned in our pm about that, IF I mentioned it. It seems like a little thing, but I do belive it would be beneficial. My dd's first neurol. took too long to "stabilize" her. We switched and this 2nd neurol of 2 years has been a blessing. I know that you're dd was stabilized for quite a long time if I remember correctly.

 

And, yes, a change in the med itself and/or doseage seems reasonable.

 

I really do think if you could swing another opinion, that would give "new and/or additional" insight/confirmation.....maybe even new ideas.

 

Will pray. Please feel free to pm me anytime. Sheryl <><

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