banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums30
Topics43,800
Posts518,817
Members13,850
Most Online1,568
Jun 29th, 2016
Newest Members
Icylon, Lache, Kimberlee, Jamielyn, ClarusMoof
13,850 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Page 1 of 3 1 2 3
#369210 12/19/09 12:22 AM
Joined: Nov 2007
Posts: 1,763
trudi Offline OP
Diamond_AS_Kicker
OP Offline
Diamond_AS_Kicker
Joined: Nov 2007
Posts: 1,763
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!


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


Joined: Dec 2008
Posts: 5,231
Offline
Joined: Dec 2008
Posts: 5,231
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.

hugss hugss


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Nov 2007
Posts: 1,763
trudi Offline OP
Diamond_AS_Kicker
OP Offline
Diamond_AS_Kicker
Joined: Nov 2007
Posts: 1,763
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.


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


Joined: Aug 2007
Posts: 1,489
Silver_AS_Kicker
Offline
Silver_AS_Kicker
Joined: Aug 2007
Posts: 1,489
I am very sorry to hear of your daughter's diagnosis. At least it seems you have found a capable and understanding doctor.

Craig

Joined: Jan 2004
Posts: 9,845
Likes: 4
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,845
Likes: 4
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


MollyC1i - Riding OutAS
Joined: Nov 2003
Posts: 8,190
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
Joined: Nov 2003
Posts: 8,190
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


Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.

Joined: Jan 2008
Posts: 21,346
Likes: 1
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
Likes: 1
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.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Sep 2001
Posts: 6,237
Addicted_to_AS_Kickin
Offline
Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 6,237
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.




L-R: Julianna, Jamie, Diane and Tonimarie

stevec-they also serve who stand and wait
Joined: Jul 2009
Posts: 296
J
Third_Degree_AS_Kicker
Offline
Third_Degree_AS_Kicker
J
Joined: Jul 2009
Posts: 296
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

Joined: Jan 2009
Posts: 4,501
Likes: 1
Supreme_AS_Kicker
Offline
Supreme_AS_Kicker
Joined: Jan 2009
Posts: 4,501
Likes: 1
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.


DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
Page 1 of 3 1 2 3

Link Copied to Clipboard
Who's Online Now
1 members (1 invisible), 32 guests, and 73 robots.
Key: Admin, Global Mod, Mod
Recent Posts
Chamomile tea can reduce inflammation
by L33 - 07/26/22 11:20 PM
Best Gym Equipment to have
by L33 - 07/26/22 10:10 PM
Ankylosing Spondylitis is curable
by Sudhir - 07/24/22 07:34 AM
Let Us Know You Dropped In!
by Magician - 07/15/22 05:46 AM
Numb fingers, nerve pain
by Stevenage69 - 07/12/22 11:06 AM
Numb fingers, nerve pain
by Stevenage69 - 07/12/22 10:39 AM
Benifits of Wet cupping/ Hijma
by L33 - 03/20/22 10:53 AM
Popular Topics(Views)
3,229,423 hmmm
1,243,853 OMG!!!!
648,000 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.024s Queries: 35 (0.008s) Memory: 3.2796 MB (Peak: 3.6272 MB) Data Comp: Zlib Server Time: 2022-08-08 23:35:43 UTC
Valid HTML 5 and Valid CSS