Saturday, January 10, 2009

Spasmodic Dysphonia

It appears that we are one step closer to having a name for Kody's voice issues, "Spasmodic Dysphonia"
Currently Kody's voice sounds like a cell phone that keeps breaking up. :0(

We saw Dr. Barr {Kody's Neurologist} on Thursday and true to his word he had done some pretty intense research for us. Although, Kody still has to be brought to the hospital {Arnold Palmer in Orlando} and officially diagnosed, the Google search I did on this disease explains absolutely everything, down the the eye tics that Bear has been going through.
Here's a great write up about it, it explains so much more then I ever could.

Spasmodic Dysphonia


Needless to say, we are pretty bummed as there is no cure for Spasmodic Dysphonia, however, there are temporary fixes that he would have to keep going back every three or so months for.
That "fix" would be to inject Botox through his neck and into his larynx.
If that doesn't work, the second "fix" would be surgery to cut one of the nerves in his larynx.
Hmmmmmmmm...I hate that idea, alot.
However, I'm thinking if there was any leftover Botox, maybe they could spare a few drops for my own pretty darn tired eyes. *wink*

In all seriousness though, if Kody does, in fact, have this disease, ultimately he could lose completely the ability to talk.
I talked to Mrs. Jones {our favorite teacher in the whole world} and told her everything. She will be helping us find sign language classes, not only for Kody, but for all of us...in the event he may someday need it.

My mind is just going everywhere, there is so much to think and worry about. Right now, we are thinking positive and we have "Hope". It's all we can do besides, live for the day and not dwell on the future {not too much anyway}.
In the meantime, with every ounce of strength and love we have for that boy...we are committed to guarding him, watching over him and protecting him for the rest of our lives.

I'll post some pictures a little later on today. I still have to take the pic's of Kody's cake off the camera. Better late then never, I guess. :0)

Have a beautiful day everyone!!!!!

Love, Kim

9 comments:

Anonymous said...

Hi. My name is Matt. my family and I have been checking up on Kody scents you guys where on careingbridge also. My son Ian is 14 and has health problems also. We read the update on Kody today and are thoughts and prayers are with you guys every day. are e-mail is shawfamily2004@yahoo.com if you guys want to keep in touch. God Bless, Matt and Della and Ian. The Shaw Family

Anonymous said...

Hi, Kim,

While spasmodic dysphonia in a kid your son's age is rare, it is not unheard of. Just wanted to let you know that treatment can be very successful and there's absolutely no reason to think he will lose his voice completely. Much to the contrary! Learn as much as you can about the disorder. There is a huge patient conference coming up in Charlotte, North Carolina on April 3-5. If you are interested in attending, need more information or support, please feel free to contact the NSDA (National Spasmodic Dysphonia Association) at nsda@dysphonia.org

We also have some program for the younger generation with spasmodic dysphonia, although this can include teenagers and those in their 20's, 30's, 40's, etc. If you get in touch with the NSDA, they can put you in touch with me personally as I'm not crazy about posting my e-mail on a blog!

But keep the faith! Your son won't lose his voice completely. Once his diagnosis is confirmed and you guys have a chance to digest it all, you might realize that there is excellent treatment (often Botox, though he is young so that could make it tricky -- though it can restore some people's voices to nearly 100%) and support out there.

Don't jump into anything permanent (like surgery) before you learn all about the condition.

Sign language can be a lot of fun to learn (I learned it when I was 23) but there's no reason to think you'll have to rely on it!!!

Good luck and keep the faith.

k68 said...

Kim, Robert F. Kennedy Jr. has this same disorder- you might pull some you tubes and compare his voice patterns to those of Kody.

And you might see if he has endorsed any resources for this disorder since he is affected by it.

Anonymous said...

Hey, Kim. I figured by the title of your post it must be a scientific nane/update. I'll go check that link a little later, but just wanted to let you know I'd been by.

I can certainly understand as parents how afraid you must be. I do think, however, (actually, make that KNOW) that if anyone can persevere it's your family. I think that learning sign language now makes sense; your teacher sounds like a great lady. Not that you are planning on it happening, but it's actually a very neat thing to learn. Our daughter just registered to take more sign language lessons. She has a blind cousin and, because of him, realizes that even though he can't see her replies reading his sign is important AND think about how helpful she could be if someone in a social setting needed to have someone read their signs. I've often thought about what I would rather lose "more": my sight or hearing and have always said my hearing because you can still see the world, and take in all it's beauty. I have never, however, thought about losing the ability to speak. My heart goes out to all of you. Again, I do KNOW that you will all persevere, no matter what. :o)

I can't wait to see pics of the cake. Our "cake" ended up being brownies. My son grabbed the first "brown" item box he saw in the cupboard. They were still good, though. :o)

I hope you're all having a good weekend. Feel the (((HUGS))) from New York.

Love,
Shiela

Anonymous said...

Dear K. Family,
Congratulations on 7 years of kicking cancer's butt! :) I am so proud of you Kody. You and your family are such an inspiration. I am sorry to hear about the latest medical issues but I know you'll get through this, too. I applaud your pro-active approach as far as looking into sign language. I hope you never need to use it but I have always said in my own experiences being legally blind that it is better to have accommodatoins available and not need them rather than need them and not have them. Either way, I'm sure everything will work out just fine. Please know that your family continues to be in my thoughts and prayers.
Love, blessings, and tons of hugs,
Tanya

Laura ~Peach~ said...

i have a blog buddy who has SD... shes wonderful... her site is...http://righteousbuzz.blogspot.com/ she has had the botox shots and would be a wonderful help to inform you guys...
her name is Kelly Jean
hugs and prayers
Laura

Anonymous said...

hi kim! Not sure if you read on this...just want to make sure all areas are looked at! http://www.voiceproblem.org/disorders/spasmodicdysphonia/diagnosis.asp

Anonymous said...

hi kim! Not sure if you read on this...just want to make sure all areas are looked at! http://www.voiceproblem.org/disorders/spasmodicdysphonia/diagnosis.asp

Rob said...

Hello Kim: A year ago I was told I have spasmodic dysphonia and have had three Botox injections.It is a process getting the correct dosage(depends on the individual). Am planning to go to the conference in Charlotte N.C. I have been a singer since I was a young man and am suprised by the depression I have experienced since being diagnoised.Will update after the conference.

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