Help with Orthotics

Updated on February 22, 2009
M.S. asks from Lincoln, NE
7 answers

Our son, now 27 months, was born two months prematurely and diagnosed with Down syndrome at birth. Needless to say, he has severe hypotonia (abnormally low muscle tone), more so than a “typical” child with Down syndrome.

I’m wondering if there are any other mothers out there that are experts with the SureStep brand of Orthotics. Our son has severe pronation when standing and cannot stand, even when assisted, for more than a few seconds. We were recently fitted for SureSteps and are trying to put them to good use, but our son HATES them. I thought that it was bad before, but all he does now is cry when we work with him wearing the braces. They were professionally fit, as were his new shoes to wear on top, so it is my assumption that he’s not in any pain while wearing either of these “new” things.

I so want him to attempt to at pull to a stand, and eventually stand and try to walk. We also have a 15-month old son who is literally running circles around our 27-month old. Of course, I praise our “typical” son for his accomplishments, but it is bitter sweet. I see the sadness in our other boys’ eyes when he witnesses his brother’s feats.

I was told to use the SureSteps for two-hour intervals, then taking them off for two hours. We have never even gotten past a one-hour mark without an abundance of tears and screaming. Does anyone have any tips for me?

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W.M.

answers from Minneapolis on

hi M.,

It sounds like you are a great advocate for your son. I am not sure who fitted the orthotics for you, so I don't know if they do follow-up. If you have not seen a pediatric physical therapist, you might want to consider it. Pediatric PTs work with children with varying abilities and could definitely give you good input about how to help make this adjustment easier. My experience says that 2 hours at a time is something to work up to, not a place to start. it sounds like the information was not cleasrly communicated to you. A perdiatric PT could be a good advocate and benefit to you and your son. Something to think about...Good luck!

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C.M.

answers from Lincoln on

As a nurse, i work with different types of orthotics, and one of the things we always watch for is signs of discomfort and any reddened areas when we take them off. When we have either signs of pain or red areas with the use of orthotics, we generally have our patients and the orthotics re-evaluated, as sometimes the first fitting isn't enuf to ensure the best fit. When you got the orthotics fitted, they should have given you contact info, so you should be able to get ahold of the person that worked with you, or at least the company, to report the problems that you are having, and request an appt to have them evaluated to be sure they are fitting right. Anyway, as a nurse that's what i would recommend to any of my patients. Hope that something works out for you!! Best of luck!
C.

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S.F.

answers from Green Bay on

Being a mother of a special needs child can be frustrating when dealing with with all the "accesories" that go with. My son is two and on his fourth pair of braces. What worked for us is a brace called Dafo. My son finally prefers having his braces on and is doing way better in PT. You also may want to get a second opinion from someone who makes orthotics, I did and now we finally got what works.

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L.G.

answers from Des Moines on

Have you tried chiropractic for him? His nervous system could probably use a check-up and an adjustment could possibly help the condition he has. It's my strongest suggestion and could prevent him from having any future health conditions as well. The same goes for your other son. If you need a good chiropractor, Dr. Heather Yost at Yost Family Chiropractic specializes in caring for young children as well as pregnant women. She is very intelligent and can help with many problems for everyone in the family. Also, she can refer you to many good doctors if needed. You can find out more at www.YostFamilyChiropractic.com or call her office - ###-###-####.

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L.S.

answers from Duluth on

Hi, I don't have any experience with Downs, but I have just started to wear orthotics myself for over pronation. They were made by a podiatrist specially for me(he molded my foot) so you would assume that it wouldn't be painful. There are times when they are. For your son, I would try putting them on him at ten to fifteen minute intervals without the expectation of him standing or you 'working with him' just use it as an adjustment period. Up until now, his foot has been free to do what it wants, however it may be. When you put it in a brace such as this, its a strange and uncomfortable feeling that a child at this age has a very difficult time understanding. Just talk with him, and have him sit there while you put them on and maybe make a game out of it-they could be rocket boots, to make him fly, or moon boots so when he's walking on the moon, he dosen't float off into space. Make it fun for him, so that maybe he can look forward to wearing it. When he starts to cry or fuss, try not to get upset(which I can imagine is difficult) but just be proud for the little while that he does wear them without fussing. I commend you for you patience and looking to find information to best help your child. It may take some time, but keep up the great work, and I hope this helps.

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K.S.

answers from Minneapolis on

Hi M.,
My son also has Down syndrome. Email me at [email protected]____.com and we can talk if you want.

We did orthotics for Joe, too, but just foot ones. Your son probably doesn't like them because they feel different. Make sure they fit right and are not hurting him. His body is so used to one position that it can be very uncomfortable to put him in a new position until his body learns it. Sometimes we have to use our best judgement and follow our instincts. I wouldn't push him for the 2 hours or he'll really start to fight you on it and then you'll have more issues. Maybe start him with 15 minutes and work up from there. The thing you have to remember is these kids are "plodders". They WILL walk, read, etc., but everything is done in a slow progression. Have patience - you'll get there. Everything in it's own time.

As for your other kids sadness, really try not to dwell on what he isn't doing, but what he is. Reassure him that he will learn these things, it just takes him longer to learn. And make just as big a deal (even though inside you are flipping cartwheels!) when he makes each step along the way. Get your other kids involved in helping him to learn and celebrate each milestone with them.

When you are ready, I own a store with products for kids with special needs. I have a great product call Walking Wings that may be worth looking at.

Feel free to email me anytime. If you're not involved in a support group, I go to the Maple Grove one and have found invaluable information and support there! I'd love to invite you to join us at our next meeting. I'm almost positive that I've seen these orthotics on some other kids in our group. I can definitely put you in touch with those parents.

Keep your chin up!
K. at [email protected]____.com

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P.W.

answers from Minneapolis on

M. - Do you belong to a yahoo online support group? I belong to one that focuses on chromosome 22 (www.c22c.net). I have found it extremely imformative and supportive. You can go to yahoo groups and search for "down syndrome." Just a thought.

As far as orthotics, my oldest briefly had AFOs, but we couldn't keep them on him and finally gave up. He has flat feet (the arch is still flexible). As I understand it, we really don't have to worry until they inflexible.

Good luck.

Pam

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