Friday, June 11, 2010

Can someone enlighten me about orthotics?


Seems like orthotics are the hot thing in toddlers with Ds. I'm torn. How do I know if Finn needs orthotics? Keep in mind that he does NOT have a physical therapist, nor am I interested in getting one at this point. However, is it only a PT who makes the recommendation for orthotics? I wish I would have asked about this at the Ds clinic a couple months back - it just didn't occur to me at that point. Do all kids with Ds need orthotics? Finn has always had pretty good muscle tone and apparently reasonably firm ligaments and joints - he's never been much more floppy or bendy than my typical babies were. I do think he's flat-footed, but aren't all babies and toddlers flat-footed until they get older? Finn has been pulling to stand for several months, and cruises very proficiently along walls and furniture, but I'm starting to wonder if orthotics is the one thing that's holding him back from actually walking. He has an appointment for his 2-year well baby check next month, so I suppose I could ask our pediatrician about it, but I'm not super confident that he's going to know much more than I do about this issue.

Would appreciate some input from you knowledgeable, experienced parents out there!

14 comments:

Erin said...

Lucas is not real low toned but has very flat feet and loose ligaments. The orthotics give his ankle bone that lift to give him more stability. Not all children with Ds have flat feet and not all need orthotics. I don't know yet whether the orthotics are helping because he uses them for standing and stepping therapy only. I am sure your pediatrician could refer you to an orthopedist and give you a script for them if Finn needs them.

Kristin said...

Funny - I just asked Max's PT about this yesterday... (he's 14 1/2 months old).
When he stands (with help), you can see his ankles are very 'bowed' from the low muscle tone. I had just seen someone's blog post about the boot type orthotics. Our PT doesn't recommend them for Max right now, since he doesn't walk or even stand on his own. She says it's a waste of money because his feet will be growing so much in the next while, he'd grow out of them before they were used much. She also doesn't recommend the boot type because they aren't covered by insurance like the molded footbed type. What she did recommend is that when I buy shoes for Max, just make sure they have a really good arch support in them. But since it's summer now and he probably won't wear shoes much, she said not to worry about it.
So ???
I'm guessing orthotics will be in our future...
Can't wait to see what other readers have to say :)

Mel said...

Luke doesn't have orthotics and I don't think he needs them. He is a little weak in the ankles, and the physio recommended he have shoes with good support- nice and sturdy. I got him some great sandals for summer, and lots of the kids we know go for an ankle boot for the same reason in winter. Some kids find it easier to start walking with the support but Luke found it an impediment and so he ended up barefoot anyway! And she also said to look for bargains, as they grow so quickly and will be quite hard on shoes initially, so no point in spending a small fortune. Luke was ready to walk in my opinion ages before he was ready in his own mind-lol! He was so speedy with the spiderman crawl, he couldn't see the point ;)He's been walking for about 10 weeks now, and is able to kick a ball, climb, and nearly run, so it has all happened quickly all of a sudden. Now if he would only stay in his bed all night...

The Hapa Girl said...

Well, Lillian has great muscle tone too and was an early walker. With that said, she just recently got her first pair of orthotics...the surestep.

Her PT was concern because Lillian locks her knees a lot and walks on the inside of her feet. So, with the orthotics, it helps correct her walk, so she isn't just using the inside of her feet but her whole foot.

I do believe the PT has to order them....and we just got the insurance paper in the mail. Lillian will not be getting a second pair of she looses them, way too much money for some plastic!

Laurie said...

Hiya Lisa!

So, Dylan got orthotics (SMOs) a couple of months ago. His PT did recommend them, but we saw an orthopedist before seeing the orthotist. The orthopedist did recommend them bc D is pretty floppy and has always had low tone. His ankles are quite weak as well...

So, we have the SMOs, but to be honest, they aren't doing much at this point bc D isnt standing, walking, cruising etc. In fact, we went back to the orthotist last week so that he could check the fit of the SMOs and at one point said, "Now, Mr. Dylan. These aren't going to do a thing until you are willing to walk.".

Sooo...yeah. That's where we are.

Maybe you could schedule an appt. with an orthopedist and get their opinion?

xoxox

Crittle said...

We don't use any, but I have very similar questions to what you've posted here. We've asked multiple specialists and they keep saying that they're not needed...yet.

We did make sure to invest in Stride Rite shoes once she started walking because we were told that they offered the type of support that she needed. But aside from that? I got nothin'.

Dina said...

Ozzie's PT recommended SureSteps. We needed to get the pediatrician to send a script to an orthotist that specifically said SureStep on it. PT talked about pronation. And though many kids grow ou of it, our kids have a tendency not to. This will supposedly help Ozzie get his ankles in the right position while he learns the motor pattern to walk so hopefully he won't have problems with alignment (and hip and knee pain) in the future.
Our PT equated Ozzie's walking to walking on ice, how the ankles etc. have to adjust in all directions. Versus when we walk, it's just a front to back motion.
Even if you don't want a PT, could you ask for a PT evaluation from your early intervention case worker saying you are concerned about pronation? Or find a PT and get a one time evaluation and see what they say about that. Just a suggestion. Good luck.

Lisa said...

Lisa, I wrote about this exact thing here and explained why we made the personal decision to get orthotics http://geneticenhancement.blogspot.com/2010/04/ifsp-suresteps-and-birthday-planning-oh.html

We have found that with as much as Sheridan is cruising and walking with push toys (read: anything not bolted to the floor), it provides him just a little extra somethin' for stability, correct position, and we find he's a bit more confident with independent standing when he wears them (which is all the time, quite honestly). Anyway, you've got lots of great advice here, just thought I would add our reasoning to the mix (by the way, you can just get a prescription from your pediatrician and they will know what orthotist to send you to - you don't have to have a PT, and some insurance requires a script anyway).

Lisa said...

Bridget had the PollyWogs for arch support from this manufacturer: http://cascadeshop.com/

They are now being recommended for Alina, who has very flat feet with mild pronation.

We also purchase Stride Rite shoes, or something with good arch and ankle support. Bummer...the cute summer sandals and novelty shoes are out :(.

Bridget did not mind the inserts...they are not obtrusive and she got used to them quickly. And I do think they helped her arches and the development of healthy position while walking.

Just my 2 cents :).

The Sanchez Family said...

So funny! I think you'll find different advice all over the map. Out PT recommended them not because Joaquin needed them but to use them as a prevention for problems that can come from over pronation and improper foot position. To be honest I rarely if ever put them on, I don't know why. I just don't really like them plus it's summer time and bare feet are just what we love here. I also thought I would buy a pair of good stride rite sandals for when we do where shoes and I showed them to our PT and she said don't waste our money, take them back and that she too preferred bare feet to shoes whenever we don't use the orthotics...confused yet?!?! I am....Joaquin has learned to walk regardless and we will use the orthotics intermittently to make sure he doesn't get any bad habits with his feet :)

onlywhoiam said...

I noticed with E (who is now 18 months) that when he stands up, his ankles - particularly his left one - lean inward very severely. His left ankle is so bad that it nearly hits the floor when he walks. I asked our OT about it - what I really wanted to know was when? how? what should we be looking for? and she didn't know for sure, but she knew a really good orthotist who could answer my questions, and invited him to one of our OT sessions. He told me about SureSteps and showed me how they would help E with his very wobbly standing and cruising. He recommended them over a pair based on a custom mold since they are specifically designed for kids with low tone and they are quite 'tweakable' from an orthotist's standpoint.

And wow, did they ever help! As soon as he got them his standing and cruising became so much more stable and his confidence and proficiency increased.

We did outgrow one pair already because his feet increased in size rather drastically - a combination of normal growth plus an increase in muscle bulk! Luckily - and I can't believe I'm saying this about such a high deductible! - we met our deductible for E for the year already so his new pair won't cost us anything.

Kristin said...

I was just taking care of a boys Finn's age with DS today and he was being fitted for DAFO's (orthotics) today also. His tone is way low and the PT thought that he would be walking for sure if he had them earlier. Don't thing that all children with DS need them. I bet that your primary pediatrition could do a referral if you did need to get Finn some.

jonas said...

Archer had orthotics for about a year (he's now just over 2 1/2), mostly to keep him from locking his knees --though he had some mild pronation at the ankles as well -- which he did for stability as he was learning to stand and cruise. We started with the full mid-calf Suresteps and then got them cut down to ankle after a while.

But now that he's walking, we're not using them at all, as they don't allow him to bend his ankles when he wants to crouch down and pick things up and then stand back upright without sitting down.

He's currently just wearing little boots for extra ankle support, and we're investing in shoes with good arch support for the summer.

starrlife said...

Kayli uses heel cups, since about age 5ish. Have you ever been to Therextra website- it's all about PT issues, lots of great posts -Barbara is excellent. If not , check it out is my recommendation. link: http://www.therextras.com/therextras/2009/09/progression-to-bipedal-locomotion.html