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Old 02-08-2012, 08:21 PM   #1
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orthotics, low muscle tone, gross motor delay

So my 16 month old has the above. Today he got fitted for his orthotics. They will look like this..only a boy print on them

Attachment 94674

Anyway. Anyone else's kids walk late and need assistance?

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Old 02-09-2012, 10:52 AM   #2
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Lucky to catch it early, at that age my oldest with the same issues was bein denied EI since gross motor was the only delay they found. We moved states and got him in, he got his first orthotics around 21 months and they were inserts after he grew out of them we got him AFOs so a little shorter as those look like KAFOs. They helped great along with weekly visits to a wondeful PT and also OT. I still have shots of his leg from the back showing the help with and without them on if you want to see. Now at 8 we have gone back to just shoe inserts to promote independence and also to allow those muscles to hopefully strengthen up on their own rather than being held immoble. Gl
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Old 02-09-2012, 11:48 AM   #3
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Originally Posted by BeedieWeedieB
Lucky to catch it early, at that age my oldest with the same issues was bein denied EI since gross motor was the only delay they found. We moved states and got him in, he got his first orthotics around 21 months and they were inserts after he grew out of them we got him AFOs so a little shorter as those look like KAFOs. They helped great along with weekly visits to a wondeful PT and also OT. I still have shots of his leg from the back showing the help with and without them on if you want to see. Now at 8 we have gone back to just shoe inserts to promote independence and also to allow those muscles to hopefully strengthen up on their own rather than being held immoble. Gl
I would love to see any pictures you have and maybe how his ankles look now w and without orthotics?
My Giovanni doesn't have any other delay either so I'm glad we were lucky enough to get him the help he needed! I can't believe your guy is in the orthotics still at 8! Not that there is something wrong w his progress ...its just I didn't know that my guy might be in them for a while! See they never said anything about how long he would be in them so I was thinking like 6 months or something but knowing your guy is in them still at 8 I'm thinking I should prepare myself for him being in them for longer term too!
So before he got the orthotics was he walking at all? Mine isn't. He just started moving from one end of the couch to the other a few days ago so like 16&1/2 months old. He can't crawl at all but does the funniest butt scooch lol!
After hour son got the orthotics did he start walking right away?
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Old 02-09-2012, 12:05 PM   #4
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I would love to see any pictures you have and maybe how his ankles look now w and without orthotics?
My Giovanni doesn't have any other delay either so I'm glad we were lucky enough to get him the help he needed! I can't believe your guy is in the orthotics still at 8! Not that there is something wrong w his progress ...its just I didn't know that my guy might be in them for a while! See they never said anything about how long he would be in them so I was thinking like 6 months or something but knowing your guy is in them still at 8 I'm thinking I should prepare myself for him being in them for longer term too!
So before he got the orthotics was he walking at all? Mine isn't. He just started moving from one end of the couch to the other a few days ago so like 16&1/2 months old. He can't crawl at all but does the funniest butt scooch lol!
After hour son got the orthotics did he start walking right away?
Oh yeah when you put the orthotics on him for the first time did he freak out? Mine flipped the heck out when he had those casts done so I'm worried he's not going to like wear them at all.
Did your guy have to wear them all day? Do they get to take them off to sleep?
Sounds like your guy either doesn't have it too bad or hrs come a long way. Those little ankle ones don't look like too much and I bet they hardly show if at all. I'm hoping my guy will be in the ankle ones by the time he's in school. His orthotics are the ankle ones with the taller part over them so they can take the tall part off for physical therapy and trying to learn to crawl?
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Old 02-09-2012, 09:03 PM   #5
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Re: orthotics, low muscle tone, gross motor delay

OK, trying to remember all questions, if I leave something out feel free to ask again, end of the day and my mind wanders.
OK Thomas always had low muscle tone, he was my first so it didnt raise too many alarm bells for a bit, when I did bring it up with peds I got a wait a see approach since everything else including fine motor was fine. I was told that you dont usually have a delay in one only,hah. Anyways his stats without digging out a baby book which I only partially filled were rolling over around 9-10 months, he could do an army crawl about 13 or 14 months I think but he dragged his right side (although an MRI at age 2 showed no stroke evidence, its still his weaker side although he is right handed), at 15 months he could pull himself up to sit. he could sit kinda hunched into himself at about 6-8 months if we put him in that position but it was just him collapsing on himself and his rolls. He took his first un aided steps at 19 months and really started to explore around 20 months.
OK as for his feet, he always had wide feet, he wore double wides for the longest time and now still wears wide, although is last pair we just got were XW. The width is a lot due to just the relaxed muscles of the feet. He also has pronation, the big toes looked like they were turned on their sides away from the other toes if that makes sense and the foot kinda rolled under that way, it crazy what it does to the form of how he stood.
Thomas first started in something called a Patti Bob see here. His PT ordered them due to his pronation. They were no problem for him to adjust to, only a few hours on day one and then progress up until full day. He got these right before he turned 2. When he out grew them we went to an actual orthotics office and got fitted for the AFO's reasoning being they hold the muscles into the position we wanted and made it easier for him, he could walk more sure and particpate in therapies better and we didnt want to have him damage his hips or knees as a result of the weak muscles and pronation.
Here is a pic of him from the back with one on and one off, look at the difference inteh angle of the foot/ankle/leg. He is about 3 1/2 here

here is without from front and back


You can see, well I can on the front image that his toe rotation has gotten a lot better after the year and half of the patti bobs.
When he outgrew these, again about 18 months later as he grew slow, we went back to just inserts for a few reasons. OT was really working with him on independence and wanted him to work on donning his shoes himself. Plus my DH who is a physical medicine and rehabilitation doc had been doing a lot of research and working with shriners and the jury is split on them for long term in more functional children. They help hold the muscles inplace to make walking and training to walk easier but once they have that then they are holding those muscle imobile and not allowing it to build strength. Thomas was also starting pre-K which wasnt a big deal but at some point in school others would notice more. SO since then we have just cast for custom orthotics to support his arch and correct the pronation which is still there some.
I will post a pic of his current inserts we got last month in the next post, tomorrow I will have to get a pic of him now for comparison.
As for the casting, the Pattie Bobs, easier we just measured like for regular shoes. For the AFOs, we had a brand called sure step and yes it was the wet casting, he wiggled so they had to do it two times and didnt want to sit still at all but he was older. All the rest have been done by them pushing his foot into a foam mold so quick and easy even when you do need to redo
Adjustment to the AFOs wasnt bad for him as he likes compression so having them on felt nice, he every now and then says he wants them back for that reason I am guessing. He did wear them all day when we got up to that or they wanted him too but hey at home he was barefoot close to 50% of the time. They want a nice shoe to support them, I know that places like Hangar orthotics sells shoes that "work" with AFOs, we never had any trouble over the years with stride right brand or saucany brand which we would get at stride rite or a local kids shoe store we had when we lived in KY. wides would usually work depending on style or XW. We used to be able to remove the insole in the store as they werent glued down tight so we could put them back if needed but now they glue down so we try for length and width at the store and know the top of the shoe will get looser when we buy it and I rip the insoles out. Also for summer I could do a stride rite sandal this one They preferred more tennis shoes but they were supportive enough and his feet did not over heat. I did not rip the insole out of them.
Oh and no they dont sleep in them. Hopefully once you son gets mobile and more proficient at walking he will graduate to just inserts as well. We know for thomas his pronation is caused from his hips. His weak muscles there cause an out-turn that goes all the way down. So we used to joke when we had 2 stories we needed to make him do stair workouts to build up his glutes but in truth that would have helped. He never will have a "proper gait" he just has little to no trunk rotation when he walks or runs but it works for him and he is a workable if not slower speed than peers. He was out of formal PT at age 5 when we moved but starting in first grade when we moved again they have started him in the school in PT every other week and that is great, but with being an Aspie as well it is jsut a small thing to help work on in light of many others.

Hope this has helped some. I will get a few more pics up, not sure what size those old ones show as, I hope its not too big. Feel free to ask anything else, we also did elastic band hip training with him when he was walking better.
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Old 02-09-2012, 09:06 PM   #6
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Current inserts
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Old 02-10-2012, 06:57 PM   #7
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Thank you so much! You've been a great help its funny cause my oldest is an aspie!!! He walked on time but has hyper flexable joints but no pt needed. This one needs pt but no signs of autism at all so far.
Anyway thank you again for all the info! I'll have to take pics...my guys ankles really turn in.
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Old 02-11-2012, 05:43 PM   #8
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Re: orthotics, low muscle tone, gross motor delay

My ODD took her first steps at 18months. She had customs when she was first standing that weren't quite as high as those. Now she just has custom inserts and we buy new shoes every 3 months because she has broken down the sides by then. EI only paid for 1-2 pairs of inserts. Our insurance paid for the 1st ones 100% because I thought to get them while she was hospitalized, so it was included in the hospital bill vs DME.

It really depends on what the cause of low tone/pronation, etc on how long a person needs them. My daughter will likely always need them as she has low tone from a genetic disorder and the tone varies with how well she is. It is very common with Down's Syndrome and other disorders. No matter how much PT she had it wouldn't make much of a difference. PT was actually the first service she was discharged from, she still gets SLP and OT and she is 10.
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Old 02-13-2012, 07:24 AM   #9
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Re: orthotics, low muscle tone, gross motor delay

My daughter has SureStep orthotics for pronation. She got them around 26 months. She took her first steps around 18 months, but fell a lot, so that's why she got these. She is now 33 months and still wears them, but does much better without now. We are actually having a PT eval this afternoon and they will tell us if she still needs to wear them or not.


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Old 02-13-2012, 08:00 AM   #10
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Yay, Thomas had the bug sure steps as well. To get him to put them on we called them his bug protecters
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