We just got back from our appointment with the neurologist. Froggy LOVED her. She kept walking up to her and saying, "doctor, doctor, doctor." The doc was charmed of course.
So here's what we know. The doc said she's pretty sure they're seizures. And we don't think it's related to Cystic Fibrosis. Sometimes a severe pulmonary problem (ya know, like a lung transplant, or major lack of oxygen to the brain) can cause seizures, but that's not Froggy. Nope, we're just sooooo lucky, that little Froggy has CF and epilepsy! Woo hoo. You'll have to excuse my sarcasm. Froggydadda and I are going on no sleep and super stress, so it's a wonder I'm making any sense at all.
The doc wants to schedule an EEG and an MRI as soon as possible. But getting a prior authorization through our lovely insurance company could take a week or two. Hopefully we'll get the EEG next week. She'll have to be sedated for the EEG, but the MRI requires a general antisthetic - which really scares me. She's so little. But we need to find out what is actually causing the seizures, (epilepsy is just a generic term for anyone who has had over 3 seizures). Because the seizures are affecting her right side (eyes and arms), it could be something with the temporal lobe. The doc said they also need the MRI to rule out developmental cortical dsyplasia (which involves the outer rim of the brain,) where sometimes there is abnormal growth. I guess this accounts for about 20% of epileptic seizures.
The good news is that the seizures are very short and are not causing damage to her little brain. The doc said that 50% of the time, kids outgrow seizures. And the meds for controlling them are excellent.
The big thing obviously is ruling out growths/tumors or a malformation of her cortical development. The doc doesn't see any signs of behavior or congnitive development, so that's a good sign.
Now, we wait, we call and make appointments, we deal with our evil insurance company. The next couple weeks won't be fun, but hopefully we'll get some answers. In the mean time, this sassy girl will continue showing us how she is absolutely worth every moment. Please keep Froggy in your thoughts and prayers.
11 comments:
Fingers crossed that they are able to rule out the most serious things quickly, and find a drug regimen.
I know life looks rather sh***y right now, but the fact that the seizures are mild is GREAT news. Hopefully they get even milder, and are only temporary. ...my fingers are crossed so hard for you, they're gonna turn blue!
Froggy sounded true to form, true to her inimitable self!!
I wish you much luck and fortitude in dealing with your insurance company.
This reminds me of when I had cancer. My husband conjured up Bilbo Baggins, and the analogy stuck, at least for me. The Hobbit really didn't want to go out on an adventure, and find himself in perilous situations, but there he was. And in the end, he realized that he was stronger than he ever thought possible.
Good luck!
Yes, she's quite a trooper. Thank you everyone for your love. And Monika, I absolutely adore The Hobbit. It's so true. The best little heroes have no idea they're heroes until they save the world! That sounds like Froggy just charming everyone into happiness, just by being herself!
anything I can do for you?? All my love..
Hugs hugs hugs and more hugs. I hope answers come quickly and are the best of all best possible outcomes.
You know I'm praying hard and thinking all good things for you and that wonder babe of yours.
thinking of you all the time froggy mama. hugs to you and froggy. fingers crossed for getting results quickly. jcn
Wow, I was just about to call you for the news but figured I'd check here first. Good thing I did cuz I hope you are resting. You must have been so worried and we are all sending you tons and tons of strength, vitality, and good wishes. You have to take good care of yourselves as well. Please give Froggy a MASSIVE smooch from The Bub...I think you can tell that he is quite taken with her.
Praying for your little family and sending good energy Froggy's way... and here are wishes for some good sound sleep for her parents!
Hang in there and keep us posted!
This is so not fair. Why isn't life fair? I am sending you tons of good thoughts and positive energy and hoping for all the best. Hang in there. I know how this time will seem to creep by until you have answers.
Peace.
Ditto what everyone has said--I am thinking of you all and sending good thoughts for the best possible news. Kiss the froggy for me.
I just wanted to let you know that I am still thinking of you. Big hugs.
Hi Elise,
I'm so sorry that this is happening to froggygirl and that you are having to deal with even more doctors appts, waiting, not knowing! I am thinking of you all, sending addie TONS of healthy thoughts and please, if there is anything i can do...even if you just need to call someone and scream or something, you can always call me!! love you guys, tina
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