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Anyone else with Hypotonia/Gross Motor Delays?


Forum: Children with Developmental Delays and Disorders

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  #1  
January 17th, 2008, 11:59 AM
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Just wondering if there are any others out there with LOs who have hypotonia (low muscle tone) and/or gross motor development delays.

My DS was diagnosed with hypotonia around his 1st birthday, with the cause being low levels of carnitine. I knew something was up from just a few months old, but my family doctor played it off as just being that his head was so big compared to the rest of him (little did we know that carnitine is also essential to the citric acid cycle which processes fats, so he quickly dropped from 60th to 5th or less percentile by 4 months old, and he has a huge noggin!). Just after his 1st birthday he started Carnitor as well as physical therapy once a week. He has progressed well, and now after just 7 months is back up to the 70th percentile, and is doing everything but pulling up to a stand/crusing/walking. He can pull up to his knees and even cruise on his knees. We have upped his carnitor dosage (due to his weight gain) and he now has therapy twice a week (due to his recent interest in getting more mobile).

He has now been fitted for SMO orthotics and we pick them up in 2 weeks. His ankles remain VERY weak, and we hope these will be the key element in getting him walking.

Anyone else have a child with similar issues, or anyone with experience with SMOs or even AFOs (which he could benefit from, but Easter Seals doesn't like to cover them, and the rehab doc doesn't think he would benefit from them for more than a few weeks anyway)?
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  #2  
January 17th, 2008, 12:42 PM
fiefer87's Avatar Mega Super Mommy
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Hello, I am Jennifer and my dd had some severe gross motor delays, and some minor hypotonia issues, though not to the extent that your son does. Alexis is VI, so her delays stemmed from the fact that she had no interest in exploring. She didn't crawl until about 16 months, and never walked until she was almost 2. Her hypotonia stemmed from growth hormone deficiencies and hers was more in the trunk than any other areas. I know there are other moms who have used the SMOs and AFOs, so hopefully they will be able to give you some better advice.
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  #3  
January 17th, 2008, 04:15 PM
Kyra656's Avatar Super Mommy
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My DD has low muscle tone and wears the special shoes (has butterflies on them!). She gets PT one time a week and is beginning to cruise along furniture. She crawls, pulls to knees and up to a stand sometimes. We are not sure the cause of her hypotonia...although she was 6 weeks premature.
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  #4  
January 20th, 2008, 06:46 PM
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Jennifer, Logan didn't have a lot of interest in getting around for a long time either. He is very much a thinker, and would rather sit and take it all in and then BOOM he suddenly will start doing this or that.

Kyra, Logan like the butterfly pattern... how funny! His will just be blue swirled though...
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  #6  
January 24th, 2008, 07:35 AM
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Thanks for the tip on the AFOs. We had agree before the appointment that if he needed AFOs, we were more than willing to pay for them, and willing to be out insurance would help out at least a little bit. But the doctor thought he would only benefit for such a short time that they weren't worth it.

We don't pick up the SMOs for another week, but now this week Logan started getting to a leaning stand on toys/tables. Of course he does it "wrong" but it is a start. He also won't stand upright and stays hunched over the toy or table and can't get down on his own either. He does it by getting on his knees at the toy and then he just straightens his legs and takes tiny little steps to get his feet up under him. They want him to step up to a stand, using his leg muscles instead of his back/trunk muscles.

I can't wait to get the SMOs and see how they help him. He is SO close to doing so many of these things already.
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  #7  
February 17th, 2008, 04:20 AM
mamalamb's Avatar Platinum Supermommy
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Hi there, I have a 15 month old daughter with low tone and gross motor delays. I am really curious about what you said about the Carnitine? I have never heard this mentioned as being part of the problem, and I am interested. How was it diagnosed? Ella just started PT because she is not walking yet. She also has a very large head and has been extremely low/off the growth charts up until this point.
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  #8  
April 1st, 2008, 08:57 AM
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Hi Ianthe,

My 15 month old Rishi also has hypotonia, gross developmental delay. Along with all this he is visually impaired too. he has a huge head. Off the charts. Off the charts in height too. Somehow feel your child sems to have similar problems. Did you find any cause.
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  #9  
April 15th, 2008, 04:42 PM
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Hi-
My 2.5yo son was recently diagnosed by a PT with hypotonia leading to severe flat feet which results in his bone resting on the floor. He now has knock knees and his hips look inverted. His PT gave him orthotic inserts (AFOs called the Jumpstart by Cascade Orthotics) which help position his feet correctly. I do recommend them to others and believe they are more than temporary help as they keep the foot from stretching and will hopefully train the foot and brain to align the foot correctly. The AFOs and the PT were supplied by Regional Center.

He has had developmental, motor, and speech, communication delays which led to a provisional autism diagnosis. Early on, around 2 mo old he had laryngomalicia and severe reflux, a port colored rash on his cheek that looked like a birth mark but eventually faded. I'm now just beginning to connect the dots between all his symptoms. He has been getting OT, ABA, speech, and floortime.

I have been researching the hypotonia but haven't found much on it beyond very basic descriptions though it appears to be a symptom of a variety of diseases and conditions. My research on some of his other symptoms is convincing me that much of these problems may actually be related to malnourishment or vitamin deficiencies. Though I haven't been able to locate any reports or anecdotes about recovery from hypotonia except in rickets, I really suspect that it can be reversed in toddlers with proper nutrition and other therapy . I would be very interested to hear more about the carnetine and what the dose is that you administer per body weight.

My son too has been off the charts in height. His head is not out of proportion for his body, but he is very tall for his age and has been since birth. I'd like to share more info, progress, and treatments with other parents of kids with hypotonia and AFOs. Thanks!
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  #10  
April 16th, 2008, 05:35 AM
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Hi Revolution,

I am quite interested in your findings. But tell me one thing when you say proper nutrition, what exactly do you mean? I am really looking for somene to tell me what to feed my son and what not. My son is also offthe charts in height and head circumference. He is 16 months old.

Yama
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