Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Confirmed Epilepsy

We expected it but had a small hope we were wrong. Ruthie's EEG today showed she has epilepsy. She had a LOT of partial seizures during the hour test. Normally they don't give that dx until after 2 tonic-clonic (grand mal) seizures.

THANKFULLY, she is not affected by flashing lights/video games, etc. But hyperventilating & lack of sleep do cause them.

The doc is not going to push the meds but suggested that we try for a short time (2 years if the meds work) to give her brain a rest so potentially her brain can learn to re-route messages past her left frontal lobe and maybe the seizures will become ignored. She also said if the meds worked, it would allow her the chance to learn. That got me because homeschooling is like 2 steps forward, 3 steps back. Very frustrating for me and her. She REALLY wants to read. And it is difficult to work with her when she is 'blank' so often.

I am at peace with trying the one medication mostly because I feel I can trust this doctor. I (surprisingly) opened my heart about how many times I've brought my concerns about her to so many different doctors and was always ignored. She seemed to 'get it' and clicked her tongue when I gave her instances of this kind of treatment. Her trembling and staring off as a baby was ignored, her mis-formed legs, short stature, etc were classic Turner's syndrome visuals and were ignored. I was shocked that she knew about that and agreed that so many things should have been caught so much earlier.

So anyway... hubby's trying to cope, not very well though, as we sit and reflect tonight.

As a novice I was able to figure out that she was having a lot of petite seizures during the test by looking at the brain scan. It was alarming to me, but made sense.

The doc highly cautioned us to have a low-key Christmas and work to keep her not sleep-deprived. By all inferrences it seems she was hinting that we're waiting for another big one to happen.


The doc did mention that she's seen a higher incidence of epilepsy with people with hashimotos! Strange! What was even strange to her was that 3 of us have it (it is not a genetically passed issue). She is swayed enough to think that maybe a lot of things are related to the military vaccinations/guinea pig things that are talked about tongue-in-cheek. At least she doesn't think I'm a nut for having those kind of thoughts!



So, this little 8 year old hx:

~ one kidney removed before age 2
~ HSP (an odd Vascular infection put her in the hospital)
~ Nephrotic Syndrome (lotsa hospital stays, biopsy & chemotherapy)
~ Heavy Metal poisoning (side effect from chemo)
~ Hashimoto's thyroiditis
~ Turner's Syndrome (missing X causes low growth & female hormones + other things)
~ One leg is nearly 3/4" short (possible scoliosis in her future)
~ High clef pallette, thankfully is changeable with mouth braces
~ Learning disabilities
~ Epilepsy


*sigh*

We are at peace with the possibility of her being a dependent her whole life.

Thankfully, God has given our baby girl a HUGE heart filled with joy. We pray others will see it and not be afraid of possible unknowns and be able to love her anyway.

Well, my unloading is over. Thanks for letting me share!

Poor little sweetie. Trudi - your post made me want to reach out and give you a giant hug. What a brave little girl she must be, coping with all that and staying joyful. I hope the meds work and the epilepsy becomes less serious.

Thanks, Wendy! We must always remember that things could be much, MUCH worse. But, some days it is hard to see beyond the hill right in front of you. I think that is part of the 'acceptance' process.

I am very sorry to hear of your daughter's diagnosis. At least it seems you have found a capable and understanding doctor.

Craig

What a star Ruthie is, but Oh, Trudi, I was so upset for you all to read of Ruthie's difficulties. But more power to you all and TG for a wonderful doctor. The relief of not having to fight the medical profession, to *know that they are working *with one...blessed relief.

Can't help you and Ruthie in any way but know that my thoughts and love wing their way over. Bless you and your husband for the wonderful parents that you are, and your lovely children for their loving hearts and happiness. (((HUGS))) me dear -

Molly C

Oh Tru, sometimes it seems like when it rains it pours doesn't it. I am so sorry that she now has this along with everything else BUT...she is a sweet, brave and I imagine strong little girl with a zest for life and she has the best Momma she could have and I LOVE the fact that you are homeschooling so that she can stay with you. That is one of the reasons I pulled Ethan out of public school after 5th grade is because of his ADD and SID (sensory Integration Disorder) hopefully her brothers and sisters will form a bond around her not because you want her to feel sickly and woe is me but to make her feel strong and that if I have a safe haven with my family I can do anything.
Let us know if there is anything we can do to help. What about anykind of therapy or different toys or learning things to help her?
Im here if you need an ear. Hugs, Lisa

that's a lot to cope with, especially for such a little person, but kids seem so much more resilient. sorry to hear that she has epilepsy but glad that it was finally diagnosed. my aunt has lived with it since she was a teen and i had a roommate with it. with the right medications, it can be very effectively treated (and as you said, your daughter may be able to go off the drugs), and both my aunt and roommate lived very full active lives.

Not much for me to say except that your little Ruthie is my HERO. Let her know she's got a fan club of 5 on the East Coast. You are one strong mama.

Prayers and best wishes to you and that tiny angel.

My prayers go out to you, hubby and Ruthie. My best friends daughter HAD epilepsy. She underwent surgery that removed the "defective" part of her brain. They can only do it in certain places of the brain but it's very effective. From what I understand, every seizure kills a little piece of the brain and her daughters seizures were uncontrollable so she would have eventually lost that portion of brain function anyway. Her short term memory is where the problems on for her now. But it's much easier to deal with.

I can get you the name of the doctor, if you'd like it?

Let me know, all the best,
Jewelz

So glad you got a definitive diagnosis and have a very understanding doctor that you trust. I hope things go well for all of you. Hang in there! You will make it.

Having had a son with many medical/developmental issues, I know that their good attitudes and natural joy are a gift from God. It's hard to look back and see that my son had so many things that caused him pain and having to work harder than most did to gain skills, but he was the happiest kid I ever met. Sounds like your daughter has been through a lot, but the love of her family is making huge positive effects on her.