Epilepsy Foundation

Rachey's just coning off a really bad week with a nasty viral illness of some kind. She can't talk and communicating is done by me asking yes or no questions, and her eye gazing at the yes or no hand, but a lot of times she's too postictal, sick or just can't answer my questions. She hardly ever makes noise, even when she's in pain. She sometimes moans, but never cries. She can no longer walk either. I used to be optomistic she would regain this skill, I hate to sound negative, but am really thinking that's never going to happen.

I had such high hopes when she was diagnosed b/c there is medicine to normalize her neurotransmitters, but they, the drs don't know what else may possibly be missing, so noones really sure what the future holds. No reseach is being done, and there are only about 20 children world wide diagnosed. We do have a parent organization that encompasses a few other neurotransmitter disorders that works together to try and get research under way.

Each illness she has takes her so much out of her. She only started sitting up and staying awake as of Sunday, so hopefully she'll continue to get stronger and use her walker again.

Thanks in advance for listening and for sharing any of your experiences.

hugs, love and prayers to all our dear children,
babs

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I had such high hopes when she was diagnosed b/c there is medicine to normalize her neurotransmitters, but they, the drs don't know what else may possibly be missing, so noones really sure what the future holds.

I really do feel your pain. I can hear the sorrow in your text, it is very frustrating. I am so sorry that she is sick, I hope that she is feeling better soon.

I took Sam to the dr. today, he was running a fever. It was a new dr. and she asked me, does he tell you that he throat or ears hurt? My response, "well he doesn't talk to I have no idea!" Last time, we took him to the dr. and she told us " wow, he has an incredible double ear infection!" We had NO idea, b/c he cannot tell us!

Sam is not walking either. I do hope that one day he will!
I hope that your daughter feels better, it stinks when they are sick, it just adds to an already stressful situation!
Prayers to you.

allison
Babs,

I'm so sorry things are getting so bad with Rachel. I hope she can kick the illness and get to feeling better soon. It's hard to see our kids sick and even harder when they issues like this. I too can feel your pain and hear the sorrow. Hannah doesn't talk, she never has as of yet other than a sporadic word or sound but no words used properly and consistently as of yet. I do feel so bad that she may never speak and it tears me up at times. I guess we can just hope and pray and do the best we can do for our kids. (((((((((Hugs ))))))))
Kelly
Thank you Kelly and Allison,

Kelly, Do you have other on-line support groups for kids with special needs? I haven't really seen one that I connected with. If you know of a good one I'd love to know which one.

Rachel's 12 and I still have my moments. It's a lot better now that she's older. I've had years to adjust and accept, but the sadness can suddenly rear it's ugly head and be hard to bear all by myself, hence this post.

Rachel's illness is gone, thank God. Now we are trying to wean the topomax, she's also on a lot of felbatol, enough keppra and some pheno. The first nt of course was fine, second and third nt she had 2 tonic clonics. Rachel's current sz pattern is 1 tc every 4 - 8 nights. So if these break thru's discontinue it'll be o.k., if not, sigh, the topomax goes back. She's only on 25 mg and we only decreased it by 1/2. Sheesh, how much more sensitive can one be?

I hope this special needs forum stays active. I love the support and love being there for others too.

Hugs and love to all here <3
Hi Babs. I know exactly how you feel. I get so frustrated when Tyler is in pain (which is happening more and more lately), and I have no clue as to which problem is causing it (second year molars coming in, worsening scoliosis/kyphosis, left hip out of socket & right on the way, kidney stones, constant seizures, gastroporisis). It has become a guessing game. Children's Motrine has become my best friend. I ache for what he used to be able to do and know he never be able to do it again. He moans, but hasn't cried in over four years.

Monday he awoke in a great deal of pain, was moaning and writhing and jack-knifing on the couch. I just wanted to know where it hurt so I could make it better. It's hard to watch your child suffer silently and wonder what new problem tomorrow will bring. .

Much love, hugs, prayers and understanding coming your way.

Tamie
((((Tamie))))

We've known each for some time now, I feel for you too hon <3

We just started something with Rachel and she has been catching on - it's yes/no questions. Rachel's best with eye gaze so I always use an open right hand for yes and a closed left hand for no. You have to be consistent in the yes/no, I was taught that suppose someone told you shaking your head was now yes and nodding your head was now no, that would throw you off answering the question, wouldn't it? You'd be too busy trying to remember how to say yes or no. I went to a seminar for PODD's, pragmatic something or 'nother, anyway this is how I learned the yes and no. There's also a system/ book you can go from from that point on. Ex. Do you want to tell me something? Do you want to move somewhere?, etc. I don't know if your dear sweet Tyler would be able to do this or not, but they showed some very disabled children using this. My df's son who's blind has his own way of saying yes and no, and not by words, but she figured out which is his yes and no and they are becoming successfull with it too.

This has helped us a lot with Rachel, of course if she's postictal it's much harder, BUT after about an hr after the tc she can use her eye gaze and answered me! I'm so thrilled. It's only taken a couple of months for her to really catch on and I think now she likes talking to me. Before she either didn't get it or thought this isn't going to go anywhere so she pretty much ignored the questions.

Anyway, all my love, thoughts and prayers are with you and Tyler. Thanks for answering my thread! If you have any questions please add me as a friend and I'll send you more info or even call you if you want. I hold you and Tyler both dear to my heart.

God bless.
Hugs as always,
Babs

Yes, I know what you mean about tylenol, sometimes I use that and sudafed probably more than she might need it, but I want to error on the side of making her comfortable and at least those 2 meds are pretty benign.
Hi Babs. I tried to add you on as a friend, but have no clue if I was doing it right. I would like to know more about the communications ideas. It would be an answer to prayer to be able to communicate with Tyler.
I understand.....it will be 3 years for us on June 6th. It seems like an eternity. We are trying to get a eye gaze computer called a dynavox. I am praying and hoping with everything in me that it will help my princess.

Since Hannah had hip surgery to repair her left hip that was coming out of socket......I can not even get her in the stander. I wish I would not have had that done.

It just seems never ending.

Donna (mom to Hannah aka Princess of the Universe0
Bab's, tons of hugs coming your way!

You know my story, and just last week I learned that Kiera's rt hip is starting to dislocate AGAIN!
Hip surgery on both hips at the age os 5 was bad enough, I just can not even think of her going through this again.
Now i am feeling bad because I was the one that brought this to the Orthos attention.
We had a full body DEXA scan done to measure her bone density, when you have this done it is a x-ray of the full body so I can see her curve in her back and try to imaging what she would look like if she was standing alone, it would not be posible.
But as I was looking at the scan, I thought that her rt hip looked like it was coming out again, so a few weeks after the scan was done, we were at a Ortho app. so I brought it up. He said he would looked at the scan and was going to let me know what he sees.
So last week I got the appointments notes, I READ in his notes that it was starting to come out and that he was going to keep a eye on it , and would reccomend hip surgery again if necssisary. It is now 50% dislocated.
I am just sick about it.

Topa wean: i did not know that you were taking Rache off the topa, but really, what is 25mg doing anyway?
I know, and we are only going down 25mg too, but Kiera is having more sz, they are the long ones (12-14 min) and getting stronger.


About 2 weeks ago, Kiera was sick with some bug for 7 days, this is the very first time that she did not end up in the hospital, I was amazed.

For some reason, Kiera gets sad and or aggitated around 6pm most nights. We can not figgure this out, when she was younger I was able to touch her body (leg, cover her ears, touch her tummy, etc...) and as soon as I was touching the right spot, she would stop crying and place her hand on top of mine. I then would know what hurts. She does not do that anymore.
But what she does do, is when I see that she is starting to cry, I will put my arm around her and say "Oh dont cry" and then she will cry more. this to me, is her way of saying someones listening to me, and understands!

We just got her a new laptop, her old one was so old and the programs that we had on it were not always working rt.
We have a scanning game that has her familys pictures and each one of us recorded a little note to her. So what it does is the marker will move to point to one of our pictures and she will hear the word "mom" or "dad" etc..., so then if she hits her switch when she hears the name she wants, then she hears the message we did for her.

She seems to like that program, but like I said it was a hit or miss if it was going to work on her old computer. We have to set the program up on her new laptop so she can "play" again.

I am glad to hear that Rache is feeling better now.
Did you have her 3 year yet? if so, how did it go?

Shay
Babs,
Sorry I didn't make it back to this post sooner between my computer issues and then we went on a vacation my online time has been scarce. I'm still finishing the extra laundry from vacation today. Anyways, you asked about other online support groups for parents of kids with special needs. I've recently found another one but I've only posted once at it thus far, however I do lurk. So guess what I'm saying is I haven't totally made up my mind wether or not I'll stay and get active there. It seems to be a very active board in that there are a decent amount of posts in any given day. It's at mothering.com. Click on discussions and it will take you to the forums. Glad to hear that Rachael is feeling better now. I've gotten some great communication ideas from this thread.

Kellyh
Thanks Kelly! Guess who's sick again? You guessed it - Rachel! Augh, poor kid and yes, I will say it, poor me ; )
Wow, I'll agree poor you and Rachel. I hope she can kick whatever's ailing her soon so things get better for both of you. When they are sick it definitely takes it's toll on us. Hannah was sick and had a breakthrough of seizures the week before last so I can empathize with you. She's better now but showing cold symptoms so I'm on high alert for anything else that might pop up. Hugs to you and Rachel.
Kelly
Oh babs. My prayers go out to you and your child.

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