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

Im so sorry Trudi I hate when kids suffer with anything but when they have to go through so much as Ruthie its double bad. Shes a very brave little girl and Im sure she will go on to have a happy life with two such careing parents. Lots of love to her and hope you manage to have a nice Christmas.
Kevin

Trudi
I am sorry to hear that Ruthie's tests came back negative. But on the other hand it sounds as if you have an understanding doctor, and at least you now have a diagnosis and the doctors ability to treat her. It sounds like your doctor is taking your concerns to heart and moving forward slowly with the meds and trying some lifestyle changes first.

I do hope that working with your doctor and the changes suggested do improve Ruthie's life with epilepsy. I will continue to keep you all in my thoughts.

What a wee fighter! And what tough news.... I'm so pleased that you've found a doctor who is actually listening to you and your concerns, and that you feel comfortable working with. Wishing you and your family the relaxed Christmas that it sounds like you need.

Wow, that's a lot for Ruthie and her family. It is good she finally has a doctor that pays attention. Have a Merry and Low Key Christmas.

Trudi

So sorry to hear little Ruthie has so much to contend with.
I hope the doctor is right and the medication will get it under control and give her chance to mend.

I hope you and your family manage to have a quiet relaxing Christmas and the New Year brings better health for your little girl.

Thanks EVERYONE for your kind words *wipes a tear from a quickly filling eye*

It's something with such a stigma and silly myths around it.

When I told my very good friend, who's daughter is Ruthie's best friend (we don't get together but occasionally) She told me she is really concerned. Not so much for Ruth, but for HER daughter who wants to have sleep-overs with Ruthie and get together more often.

She's afraid that her daughter may witness a seizure and be damaged by it. (i can understand this fear, but since I've babysat several medically needy children in my life, it doesn't really make sense..) Her little girl was 'distraught' when she witnessed Ruth getting her growth hormone shot in the beginning. (sadly, she was distraught from jealousy; because everyone told Ruth how brave she was and she was being ignored).

I told her that it would only help to grow her daughter, esp if things are explained beforehand. It is so 'odd' to consider how she wants to shelter her daughter from my daughter's medical conditions... but she is always telling me that I am sheltering my kids by homeschooling!!

So.. I have that whole thing to deal with now too.
To help friends not look at her with judgment or not invite her because of fear.

That to me, is the biggest challenge we have ahead. Even Ruth is concerned to go to the mall or anywhere because she has epilepsy. Hopefully, she'll understand. Right now she's afraid of having another tonic-clonic (grand mal).

Ah well, a new journey is ahead!

So today I crashed horribly. I didn't think I was that stressed! I could barely function to talk or move. I hate those kind of days!

Tons of hugs to Ruthie. What a tough kid.
And hugs to mom too.

Trudi, hopefully you will be able to find out what will set Ruthie's seizures off. My son J seizures are set off by so many things. He was telling me lately that he was having more frequent seizures. He just found out he is diabetic. He blames me for his health issues :o(. - Unfortunately he has his mother's genes.

The seizures started when he had bacteria menigitis with septecemia at 21 months of age. I guess I had a life time of getting use to him tweaking out. He is now 30 years old. I home schooled him for a year to get him caught up in school. I found socialization helped him. His friends were protective of J and never made fun of him. I didn't find there to be a stigma, as there was of others with epilepsy (in past - before epilepsy was made more public). But he didn't have grand mal seizures either. He just had many and frequent petite mal. Heat, cold, allergies, illness, stress, diet - all these things will set his seizures off.

They tried to change his medication, and sent him into a grand mal seizure. We were quick to have his medication changed back to the med he was on. He has never had another grand mal seizure.

Hopefully Ruthie, will be over her seizures by the time she turns 18. Many people seem to grow out of them by then. J's seizures stopped from age of 3 to 12, when they started up and become more frequent. He was never the lucky one. He thought surgery would help. As there are two places in his brain affected, surgery was never to be an option.

Hugs, and much love going out to you Trudi, Ruthie, and to the rest of your family.

Gerri

Trudy, I can't keep the tears away. She has to be a tremendously brave little girl which I am sure she learned from her Mom.
Many Hugs and Blessings.
I will be praying for you and yours.

Possi

Oh Trudi, I can only try to imagine. That list is far too long for anyone, let alone an 8 year old. Ruthie certainly has been through a lot, but if she's as much like her Mama as I think she is, nothing will keep her down. I'm so glad she has you and hubby to fight for her until she's old enough to fight for herself in this.

Warm hugs,