I guess not totally surprising. I've said all along that Katie is nearly identical to Jake, so we were expecting it. It's just we had hoped that because her 2 previous EEG's were normal that maybe, just maybe, she would be ok. And when she had the febrile seizures we kinda knew it was just a matter of time, and yep, we were right.

The doc called this morning around 9. He said that the EEG was abnormal showing several spikes. He had said after the first seizure that he didn't want her on any meds, to wait and see. But now he wants to start her on Trileptal.

I said to the doc that all her seizures have been with fever and he said that the way her EEG looked, it's just a matter of time, that he feels that she will have seizures without fever.

As far as I know, she's NOT having any seizures, BUT she does have some "suspect" things. She jerks when she gets upset Jake's myoclonics gets horrible when he's upset) and she does still do the pee pee shiver (without the pee pee).

I've been so depressed all day. It's not a surprise or anything. It was expected. But still, I can feel a big fat depression coming on.

(((Hugs))) Sorry this is such a quick post, but it's almost supper time. I thought you needed a hug, though.

I meant to reply to your other post and I guess I didn't get around to it. I recognized your name, right away, even with the new change. Katie looks really good sitting there. I expected the abnormal EEG, too, although I was praying results would be otherwise. I'm so sorry.

The only I thing I wondered, are you going to continuing vaccinating Katie? Her reactions to the vaccine would make me hesitant to continue. Obviously it's your call. I can't remember what you've done with Jake. Tom has all of his toddler vaccines, but I've never done his kindergarten boosters. I'd like him to be healthier before we go there. He just seems to pick up every cold. Right now, illness seems to be his only trigger (2 from fevers and one from a bad bout of vomiting).

I need to go, but here are some (((hugs))). Wish I could prevent that big, fat depression from coming on, but I'd do the same thing myself.

((((((Micky)))))),

I'm so sorry I was hoping--truly hoping--that this wasn't gonna happen

I still feel that Katie-Bug came along to help Jake. You've got to get the researchers looking at both of them -- to see what's different -- since Jake has progressed further.

Micky, I pray for your wonderful kids. And for you and your husband too.

Allow yourself to sit and to feel the depression and the sense of loss for awhile. Then, get up and start kicking @$$ again. YOU'RE gonna be the one that's gonna bring your kids to the attention of someone that's got the skill and the knowledge to help them.

Bless you and your family, Micky. HUGS.

Barbara

Oh, Micky. I am so sorry.

I'm sending you lots of big (((((hugs))))). Can't blame you for the depression- you need the time to grieve. But then I know you'll be right on top of things. And I do think that this HAS TO give the docs some things to look at to maybe be able to help both Jake and Katie.

I know the EEG results stink, but Katie is still the same sweet, gorgeous little girl she was before that call. Hold on tight to her and always remember that.

(((hugs)))

I am so sorry. My heart is breaking for you. When are you starting the trileptal? Maybe it will keep the seizures away. How is your oldest daughter doing? I will whisper a prayer for your family. (((hugs)))
Cara mom to Christian 5 Tehya 2 (cp, seizures, gtube fed)and Donovan 1 month old

Micky

My heart aches for you... I can't imagine how tough this must be to face.

((hugs))

Thanks everyone. We'll start the trileptal tonight... I guess. I don't know. I want me and Mike to spend sometime with her and video her tonight. Just in case we "lose" her personality, like we did with Jake. I want to be able to remember her like she is now. Happy and smiling, and..... normal looking. Maybe I sound stupid. But after Jake started on meds he was a zombie, mouth open and drooling, never smiled, very irratable and cried all the time. We never really got him back.

((((((Micky)))))),



I know, sugar -- I know.

You've got to believe and trust that G-d and Katie are working together to help Jake.

BELIEVE that you're gonna find the answers that you need.

BIG HUGS (and love).

Barb

Oh and you asked how Megan was doing......


BTW- in the pic you can't see the lovely metal rod through her eyebrow or the metal dog chain hanging from her pocket, or the beautiful black eye makeup.

She lives with her grandma.

Big Hugs Micky....