More seizures for Kaite

[J&K Mom]

Well, the neuro was right. Short recap- Katie's had 3 febrile seizures since spring. She had 2 EEG's one before seizure #1 and one after, both relatively normal. After the 3rd seizure, we had another EEG. Between May and August, something happened to her brain and the EEG was horrible. The neuro prescribed Trileptal and when I didn't want her on it yet because all she had had was febrile, he said ok, but then called back and really pressed/encouraged me to start it. He said that her EEG was so bad that he strongly felt it was just a matter of time before they were no longer "just" febrile.

Well, he was right. I woke up this morning to her having a seizure. She does not have a fever. Though we are all sick or on the mend from the most henious stomach virus we've ever had. I vomited all night Thursday night (every 30 minutes) and slept all day Friday and got up Saturday and had diarrhea. Saturday night Mike got it. Sunday night Katie got it. Last night was Jake's turn. He vomited on Katie!

So Jake slept in the livingroom (where Katie usually sleeps) and Mike stayed with him. I brought Katie into my bed and I slept in the floor beside her. She woke up 3 or 4 times as usual to be nursed. I stayed in bed with her around 6 and fell asleep with her nursing. I woke up at 7 to my breast being clawed. She wasn't nursing.Not unusual, she does that. I often wake up to her pinching my boob! YIKES!

But it just felt different, and it didn't stop. I moved her hand and looked down at her. She will usually look back up at me and give the most beautiful grin. But this time her eyes were rolled. So I jumped up and over her to the lamp and then saw that her lips were tinged blue and she didn't respond. She was coming out of it though, and that's when she starts twitching. I wasn't sure she was actually having a seizure until she started twitching. I doubted myself and thought, well, maybe the light was bad and she wasn't blue and maybe she just wasn't ready to wake up and not looking at me.

I layed back down with her and she slept about 3 hours.

It's scarey to think I can be cuddling with her. Holding her. And not know she's having a seizure. Not know she's not breathing! I have no idea how long she was like that. It makes me wonder if she could be having them at night and we not know. I think I'm going to set up the cam corder in night vision and "throw" it to the tv in the bedroom. (a handy little device called leapfrog)

Called the neuro and he upped the Trileptal to 3ml 2x day.

[taft]

Im sorry to hear that. hopefully the trileptal helps. Im still on the newer end fo seizures what kind of seizures is she having that would cause her to stop breathing? that has to have been terrifying.

Steph

[Tylersmom]

Im so sorry to hear that Katie is having siezures. I hope the med helps her. How scary for you.((HUGS))

[RathyKay]

(((Hugs))) Seizures suck. I would like to say, that even though it wasn't a febrile seizure, I would still tie it to illness. Of the last three seizures Tom has had, two have been febrile. The third was when he had a lovely stomach bug that resulted in lots of vomitting. I personally feel the loss of fluids and electrolytes and whatever else is a good thing to blame seizures on, and our neuro didn't argue.

That being said, it sounds like increasing Trileptal is probably a wise move. I'm so sorry her EEG isn't "pretty."

[just laurie]

Sorry to hear that...

Laurie

[GinaMarie]

{{{{{{{{{{{{{{{Micky}}}}}}}}}}}}}}}}

Micky I would talk to the neuro about using monitors at night to help you know how she is doing at night. Then you might know when she is seizing without staying up at night watching her on a monitor. If she is turning blue then her heart rate is dropping or stopping so the monitor would go off and give you warning. I would hate to see you lose MORE sleep than you already are worrying about watching the monitor to see if she is seizing.

I read another post about thier child seizing in her husbands arms during the night without him even knowing.

Talk to the doctor about a heart or apnea monitor for her a night or when she is sleeping to watch for seizures.
HUGS
GM

[Mom2Ava]

Oh boy. Sorry tohear this. Ava just had a BAD seizure this past weekend. She was in DH's arms and he did not even know. She was fully into Status.

Ava's lips and nose sometimes turns blue. When this happens, it is NOT a good sign.
Do you have diastat on hand? Do not hesitate on calling 911 if you are not sure if she is fully out of it.
Status, even nonconvulsive status is very serious. This last episode it took 2 doses of diastat, 2 dose of ativan and finally fosphenytoin to stop it. We were preparing to be life flighted to Boston.

We have a video monitor, but it is uselss if we have no warning signs ... no convulsion, no noise as with this last episode. She was just completely paralized... could not move or speak. Super scary.
She has all kinds of symptoms and each episode is a little different. We will be purachisng a higher quality video monitor. One where I can see the details of her face. We are also in the process of getting a pulse oximeter with an alarm that will tell us if her o2 sats are too low. We will also be getting o2 to have on hand in the event her sats do drop.

Please do not doubt yourself ... do not ever worry about over reacting. If you have the slightest feeling something is wrong, pay attn to that mommy gut.

Good luck and I hope there are no more seizures.

One last thing, are they monitoring her sodium levels on the trileptal?

[J&K Mom]

Steph- you can stop breathing with tonic/clonic seizures.
I may ask about the monito.
We do have diastat, but she was already coming out of it by the time I found her. No we haven't had her blood done, but we go back in a week or so and he'll probably do it then, if not I'll ask.

[I-Luv-TnK]

Sorry to hear that about Katie. I hope its only related to the illness. Hugs to you all.

[wheeliebird]

{{{{Micky}}}} Poor "Katie Bug" I'm sorry shes having so many seizures!!! {{{{HUGS}}}} for your "Mommy Heart" too!!! Wish I had some answers or a magical wand to take the seizures away!

[Fayelle]

Major ick!

Wow how frightening!!!!!

Xander stops breathing during his tonic clonic seizures, it terrifies me to no end.....Well he doesn't actually stop breathing he just can't seem to get air he gasps, like his airway is closed off probably from the tonic part....

In my opinion Xander failed trileptal in fact he had that severe seizure cluster when they started trileptal.....If you have not already its important to try to video the seizures so the doc can get a clearer picture.....I had really hoped Katie was not going to develop a seizure disorder....How rough this must be....

Once we sent the video feed to the neuro he knew exactly what he was looking at and was able to get Xander on the right meds.....

I also wonder after a clear EEG if she is not having night time SZ's which is cutting off her air supply and remapping her brain patterns.....

I do hope the doc gets them under control soon!

Hugs

Fay