Monday, May 3, 2010

Dystonia

Today at the clinic we learned 3 things.

1. Kendall has Dystonia (not Cerebral Palsy. Surprise!)

2. The muscle biopsy should be done because it may mean I need to be followed closely by a Cardiologist. And Kamden would need to know in the future as well. And there are possible vitamin regimens that could slow the progressiveness. Not everyone believes this, as we had 2 other Dr.'s tell us they don't help.

3. The Neurologist has never seen a child with Kendall's tone and movement at the age of two progress to independent sitting. (before you throw tomatoes at him, understand that I asked the question first.)

So that's it. Not the news I wanted to get. But I got it. And now we move forward. As my friend Holly said, "Kendall is still the same Kendall she was yesterday."

There was talk of starting her on medications that could potentially improve her movement disorder, but it would be complicated with the Ketogenic Diet. And being that she is so "medically fragile" we don't need to add any more medications.

I've made the calls to schedule the muscle biopsy surgery as well as her next examination under anesthesia. I feel a little apprehensive still, but am at peace with the decision.

Her AFO's will possibly be replaced with new ones with hinges. That's because hopefully this week we are going to demo a Kidwalk.

So, basically this appointment was pretty cut and dry. I wanted answers, and I left with answers.

Now we can stop getting upset with Kendall's arching and frustrating movements to the side. It isn't something we can change. She's frustrated with her inability to control it too. It's not a game. She can't help it.

We will keep doing what we're doing and meet again one year from now.

8 comments:

Mo said...

Just sending a hug...I love that sweet Kendall no matter what.

Candace said...

Well Jocalyn,
I guess you can look as a good thing since you have accurate information now. Not that new names or dx's ever feel good but it's good that things are correct now.

jennohara said...

It's always good to have the right information. Not knowing is the worst part of it all! Hugs to you guys :)

TherExtras said...

Ditto what Holly said. Same child, different day.

"independent sitting" means exactly?

The tone of your post is that of dealing with it - unless I misinterpret. Barbara

Debbie said...

Jocalyn...not sure where I have been, but just updating myself on the all the "happenings" in your world over there!

First of all Happy, Happy Belated birthday to Ms. Kendall...cute pictures!

Also glad to hear you got out to another Train Concert....I remember a past post when you did that...seems to keep your engine running...good for you!

The whole Dystonia thing is a new one for me...I have seen/heard the term. Is it a symptom of something greater or her main dx? I guess, I am a bit confused. Although, like everyone said...she is the same girl...a different label doesn't change who she is. I have learned there is such a huge spectrum in all this crud, each kiddo is unique and individual in their own, there certainly is no text-book kid, or one criteria that fits any of these illnesses...i.e her sitting when docs thought she couldn't or wouldn't! She will show them!!! ha!

BTW...has any one told you, you are super photogenic??? Well YOU ARE! Cute pics of Kendalls momma too!

Glad I got myself updated...

I had to laugh...
the pic of the boys sleeping over...
my guess...WII Rockband?

Looks like my 8 year old and his buddies! :)

Hugs from Seattle....Deb

Reagan Leigh said...

Yes...Dystonia. We've been told that's what Reagan has as well. Not surprising, she and Kendall have so much in common. Try not to let the diagnoses overwhelm you. As everyone said, Kendall is still the same kiddo. And no one, doctor or otherwise, can predict her future. The points the doctor made about mito and getting an accurrate diagnosis...all very good points...and points, I might add, that I had already made!!!

jocalyn said...

I know, Tera! I can be a bit thick headed at times :)

Anonymous said...

Can I just say....Mrs. Shay is VERY excited about the Kidwalk. Can you say PURPOSEFUL MOVEMENT!!!
woohoo, watch out world.