As I was closing up some things at work on Friday, I started going through some old emails. I came across an old email that I had sent out to the Williams Syndrome list back in February asking about scoliosis and bracing Daven. A fellow WS mom emailed me back cautioning me about bracing Daven. Strongly suggesting that we NEVER put him in a brace.
Apparently her son also had the same issues and luckily they came across a doctor that had dealt with scoliosis and Williams syndrome. She said all it does is fix one problem, but creates an even bigger problem. Studies are starting to show some complications with “muscle atrophy” in kids with WS who have used braces. Meaning that yes, the brace might straiten out his back, but once we take the brace off…he won’t have the muscle tone to hold himself up. This in return means that in the end Daven would have to have back surgery anyway.
I wouldn’t really think much about this email, except that the nice woman knew exactly what the doctors were going to tell us. (Keeping in mind this was sent to me back in February, long before we got the final diagnosis) “The doctors” she said, “will want Daven to be in a brace for 23 hours a day, until he stops growing.”
As I was reading these emails I could feel my heart racing and my blood pressure rising. I started to think, yes the doctors are probably doing the right thing for Scoliosis, but are they doing the right thing for scoliosis in a Williams Syndrome child? And the FREAK OUT had started. I didn’t know what to do next, but to cry. I just want there to be one simple answer for once! I want to know 100% without a doubt that I am doing the right thing for my child, and he will be bigger and stronger because of it.
As soon as I picked Daven up that day, I stripped that brace off and just held him and cried. Not knowing what is best for your child is crushing. I called all the family, friends, PT’s, OT’s and doctors that I knew to call to ask their opinion. The consensus that Logan and I came up with was to keep Daven in the brace during the night, but keep it OFF during the daytime when he will actually be using those muscles. At least until we get further instructions from the doctors.
Other than that, our weekend was great. I have said enough for one day…so I won’t bore you with the weekend details until tomorrow. But I do have this AMAZING picture to share with you. Here is Daven pushing up to the sitting position. I am elated to see this accomplishment. Also, here is Daven talking up a storm with Cousin Luke! So precious those boys are.
Thanks for letting me vent it out yet again!
LOVE LOVE LOVE
Apparently her son also had the same issues and luckily they came across a doctor that had dealt with scoliosis and Williams syndrome. She said all it does is fix one problem, but creates an even bigger problem. Studies are starting to show some complications with “muscle atrophy” in kids with WS who have used braces. Meaning that yes, the brace might straiten out his back, but once we take the brace off…he won’t have the muscle tone to hold himself up. This in return means that in the end Daven would have to have back surgery anyway.
I wouldn’t really think much about this email, except that the nice woman knew exactly what the doctors were going to tell us. (Keeping in mind this was sent to me back in February, long before we got the final diagnosis) “The doctors” she said, “will want Daven to be in a brace for 23 hours a day, until he stops growing.”
As I was reading these emails I could feel my heart racing and my blood pressure rising. I started to think, yes the doctors are probably doing the right thing for Scoliosis, but are they doing the right thing for scoliosis in a Williams Syndrome child? And the FREAK OUT had started. I didn’t know what to do next, but to cry. I just want there to be one simple answer for once! I want to know 100% without a doubt that I am doing the right thing for my child, and he will be bigger and stronger because of it.
As soon as I picked Daven up that day, I stripped that brace off and just held him and cried. Not knowing what is best for your child is crushing. I called all the family, friends, PT’s, OT’s and doctors that I knew to call to ask their opinion. The consensus that Logan and I came up with was to keep Daven in the brace during the night, but keep it OFF during the daytime when he will actually be using those muscles. At least until we get further instructions from the doctors.
Other than that, our weekend was great. I have said enough for one day…so I won’t bore you with the weekend details until tomorrow. But I do have this AMAZING picture to share with you. Here is Daven pushing up to the sitting position. I am elated to see this accomplishment. Also, here is Daven talking up a storm with Cousin Luke! So precious those boys are.
Thanks for letting me vent it out yet again!LOVE LOVE LOVE
8 Responses to “Ahhhh, FREAK OUT!”
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About me
- I'm Aspen
- From Clovis, New Mexico, United States
- Happily married to Logan for 5 years. We have a precious son Daven Tate who was diagnosed with Williams Syndrome (a genetic disorder)at 11 months old. What a joy it will be to watch him grow. Daven just turned TWO!
- My profile
Oh Aspen the pictures are so cute like always...
Have you emailed the lady from Feb again to ask more questions? Maybe look for a second opinion or a specialist. Call the WS Clinic at CHOP maybe they'll know something I used to go there when I was little because of back problems that i eventually grew out of. You are traveling to a different area of the US next week and if you want to talk to a Dr up here or get another opinion I can take off to drive you where ever you need to go. Even Philly if you want.
You are doing a great job that boy is so cute.
Love Ya
Aspen,
I meant to email you this sooner but it slipped my mind until I read your blog. Our geneticist at Mayo Clinic told us the same thing about the back brace. She said she does NOT recommend using it in Williams kids for the "muscle atrophy" thing as well. Also in church on Sunday I was telling our friends about Jaxson's visit to Mayo and about how this was the first time I had heard anything about him having scolosis. Her son has spinal muscular atrophy and he is in a back brace and I said "I was surprised they didn't want to put Jaxson in a back brace" and she said "oh..you never want to put a young child with weakened muscles in a back brace...they didn't put Vincent in one until he was 9 years old and it was absolutely necessary or else he would fall over" She said the same thing about how it straightens the back but weakens the muscles. I am always second guessing what my pediatrician will tell me for he has never seen a Williams kid before...Just some thoughts.
Have a great Monday!
susan
I will be praying that you find the right doctor/answer so you can do the best for Daven.
what an angel! God will give you the answers you are searching for. ASK. SEEK. KNOCK. It is amazing how quickly things happen when we do this... I love you and am proud of the way you take things thrown at you and run with them.
How fabulous that there is this world of help out there. You ARE doing the right thing for your child but always checking the answers. It's exhausting, I know, but you are doing the right thing.
And on a side note, what an ADORABLE pic of Daven! He looks so cute sitting up like that!
Always listen to your intuition as a mom and you will figure out the best thing to do, my dear Aspen.
I am playing catch up on your blog -you've been very prolific lately! That's awesome about Daven pushing up to a sitting position. He will be rocking on all fours before you know it! Then watch out!
Here are some links that I believe will be interested