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Old 03-26-2012, 02:38 PM   #21
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My DD who's 12 months most likely will be getting orthotics. Her PT recommended that and some suit thingy. She's got a genetic disorder with hypotonia.
What's her disorder? I'm wondering if mine does. He will be seeing a nurologist in a month or so but i can't wait...I'm looking in to everything...especially since we are ttc I want to find out if its possibly a genetic thing.

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Old 03-26-2012, 06:13 PM   #22
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Re: orthotics, low muscle tone, gross motor delay

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I'm wondering if mine does. He will be seeing a nurologist in a month or so but i can't wait...I'm looking in to everything...especially since we are ttc I want to find out if its possibly a genetic thing.
If he has problems with multiple systems a genetic issue is a possibility or if a doctor has ever commented on dysmorphic features. Call your ped and ask if they think your child should be tested for a genetic syndrome and that you are currently trying for another baby. If they answer yes then go ahead and make an appointment. You will waste even more time waiting for a neurology consult before you line up a genetic appointment. Separate specialists can and have run multiple tests on the same symptoms to figure things out.
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Old 03-26-2012, 07:29 PM   #23
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If he has problems with multiple systems a genetic issue is a possibility or if a doctor has ever commented on dysmorphic features. Call your ped and ask if they think your child should be tested for a genetic syndrome and that you are currently trying for another baby. If they answer yes then go ahead and make an appointment. You will waste even more time waiting for a neurology consult before you line up a genetic appointment. Separate specialists can and have run multiple tests on the same symptoms to figure things out.
Well before we had Gino we got genetic testing and the dr said we were good. I'm wondering now if those doctors didn't test for certain things but Gino doesn't have anything else wrong ...that we know of other than he's a bit small for his age. He's bright and no heart or internal stuff going on...just the low muscle tone...oh and he's been sick 3,times already and he's only 18 months old!!!
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Old 03-26-2012, 08:52 PM   #24
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Re: orthotics, low muscle tone, gross motor delay

There is over a million things that can go wrong with genetics. One test is not going to rule out everything that could go wrong with something as complex as the human genome.

My son has two genetic syndromes. He has obvious medical problems and dysmorphic features. The evidence was strong and there was no doubt in any of his doctors' minds he had a genetic syndrome but his first karyotype came back completely normal. It wasn't until further testing they discovered his diagnosis.

In your case it doesn't sound genetic unless we are talking gene mutations or microduplications/microdeletions where the effects can be smaller and harder to test for. If there was a genetic syndrome there should be medical findings (hypotonia is a common finding) and dysmorphic features. Examples of dysmorphic features are eye lashes abnormally long, nipples set further apart then normal etc.... Sometimes the dysmorphic features are very subtle and sometimes they are noticeable even to an untrained eye. Ever pass a special needs person and you can just tell by their features something is a bit off on them and it makes you take a second look? If so probably a dysmorphic feature of their syndrome caught your eye.

In the special needs world being sick 3 times in 18 months is very healthy so I wouldn't worry about that. I think I would stick with just the neurologist for now. If you are truly worried about a genetic syndrome then talk to your ped and see if they have noticed anything that might be an indicator.

Hypotonia though is always a sign of an underlying condition. Children don't just have low tone, something caused it so I do agree seeing the neuro is the right step to find out what is going on.

Last edited by mekat; 03-26-2012 at 08:55 PM. Reason: clarification
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Old 03-26-2012, 09:01 PM   #25
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Re: orthotics, low muscle tone, gross motor delay

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In the special needs world being sick 3 times in 18 months is very healthy so I wouldn't worry about that.
I am laughing as I read this. DFS was in the hospital 14 times in the first 2 years of his life. It made me chuckle. Of the group of friends we made at the children's hospital, he is the healthiest. When you are there enough, you run into the same families and, through Facebook, we have become a good support system.
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Old 03-27-2012, 12:07 PM   #26
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I am laughing as I read this. DFS was in the hospital 14 times in the first 2 years of his life. It made me chuckle. Of the group of friends we made at the children's hospital, he is the healthiest. When you are there enough, you run into the same families and, through Facebook, we have become a good support system.
REALLy???? Omg! I thought the baby was sickly because my first child only got sick once in the first 7 years of his life....one cold...that's it. He's 13 and had the stomach flu twice and one cold. Maybe HE'S not the norm and the baby is?
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Old 03-27-2012, 12:12 PM   #27
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I just can't wait to find out what IS causing his gross motor delay so i can stop worrying so much and know what we are up against. It's sort of like hearing something in your house in the middle of the night....you just don't know if its a dangerous armed criminal....or the cat until you flip on the light. I'm in the dark right now...scared as hell. I hope its just the cat!
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Old 03-31-2012, 10:18 AM   #28
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Here are Ginos new orthotics...he has the beach print.

Attachment 99865



Attachment 99866



Attachment 99867

Last edited by Maddalena; 04-26-2012 at 03:38 PM.
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Old 06-03-2012, 06:52 PM   #29
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Re: orthotics, low muscle tone, gross motor delay

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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 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.


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 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.
I know I am very late to this tread. I am having the same issues with my son trying to decide what to do. I am wonder if your sons orthotics have improved his arches over time?
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Old 06-04-2012, 06:24 AM   #30
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I know I am very late to this tread. I am having the same issues with my son trying to decide what to do. I am wonder if your sons orthotics have improved his arches over time?
So far mama...idk. His arches aren't really the problem BUT he's been using his for about 4 months now and they help him stand steadier and walk holding on to things better. His feet DO look more like feet now lol, they're finally growing a little, and his ankles are thinning out a little.
I say " when in doubt try it out"
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