Low Muscle Tone

Hi-
She will walk and run! Believe me it can be done and you are doing all the right things to see PT and orthopedist. My son is 2 1/2 and just started walking two months ago. He has low muscle tone and has been going to PT, OT and Speech regularly now since he was 6 months old. He has an underlying genetic disorder for which the low muscle tone is a characteristic. He wears SMO orthotics (braces) on his feet that cover the ankle and mid foot. They do work and help with balance and foot alignment. It is very hard and emotional to go through this stuff, but with a lot of hard work it can be done- my little guy is living proof! Best of luck!
K.

Work hard on those exercises with her. She can't lift herself if she isn't strong enough. Hopefully that's all it is. I knew a little boy that needed leg braces for 5 years of his life so don't wait too long. Remember that children adjust to change very quickly if you don't make a big deal about it to them or in front of them. Good luck mommy.

My daughter was also a very late walker, 19 months. I had some of the same worries, she was not standing by herself or even trying to walk and when she did put weight on her feet they turned in. We took her to an orthopedic doctor and he did xrays. He told us her bones were fine but her muscles were small because she was not walking. We just kept working with her and when she finally decided to take her first step she toddled around for almost 30 min. We were relieved, but her feet still stayed turned in. The doctor said as her muscles grow stronger they should straighten out, well now she is 2 1/2 and her feet still turn in but we finally found out a little while ago, it is because she has flat feet. Shoes with a little arch support help with her balance more.

All I can tell you is just keep working with your daughter she should get there soon! Good Luck.

Hello
My daughter is 19 months now, but at 15 months was not walking and I had her also evaluated by the Early Intervention program. She was standing with holding on, but would NOT let go and would not walk. She also stands on the inside of her feet. She does not have low muscle tone, but they are going to re evaluate her in a few months to check if she also needs her inserts or braces. She did start walking, but I don't think PT we had for her for about 7- 8 weeks really helped. She did it when she was ready at 18 months (to the day). She just got up from her nap one day, I changed her diaper and she stood up and started walking . We were thrilled, but I think she finally was ready. She's that kind of baby, does things her way and believe it or not is VERY independent at such a young age. Doens't like help with much. Anyway, if you need a orthopaedic dr. I saw Dr. Kevin Walsh out of Edward Hospital in Naperville. He saw both my daughters for Hip Dysplasia as infants. He's wonderful. Don't worry, I also thought my daughter would never walk, and finally she did- it just took a lot longer than my other children.
take care.

My son has low muscle tone. When he was small it was diagnosed and at first he little lifts in his shoes why we waited for the orthadics. We called them magic boots they were specially made for him.
from the day he got them he was walking. He still struggles with ankle weakness.

Hi,
My son is 15 m old and not walking but close. We have had him in therapy since 5m for torticolis and then low muscle tone, postural concerns. We attend KIDS CAN DO THERAPY in Mokena, IL. I HIGHLY RECOMMEND the therapists and would encourage PT! He also has OT and now we are working on preventative strategies. Your concern is warrented but PT can do so much. Connor has come such a long way and he is most likely graduating from therapy as soon as he walks-they predict Sept/Oct. So from a mom who has had a son 'slowly' start out with a few different methods of moving (he wasn't using his left leg at all until about 2 months ago!) and didn't really have stability, I can say the OT and PT therapists have been a lifesaver for him! I am extremely happy with his care, we go 2x per week for an hour each session and it has been worth the time and energy!
Good luck!!!! She will improve greatly with intervention!
J.

My son had low tone as well. Our PT was able to fit him for shoe orthotics. I do know that toddlers feet are flat and aren't like ours until they are much older, MAYBE that is why she recommended to wait. I would continue with the exercises and see the orthopedic. If in a few months you don't feel things have improved see another PT. Just so you know my guy is now 27 months and you would never know. I still get him shoe orthotics but beyond that we don't go to PT anymore.

Hi C.,
Our daughter was diagnosed with low tone at 10 months because she was not rolling, sitting well, or crawling. She has had PT since January and I am excited to say that all of our hard work has paid off! She started crawling at 12 months and walking 10 days ago at 16.5 months.
I'm glad you decided to get your daughter evaluated; make sure you practice the exercises as often as possible. My daughter is proof that PT can be helpful!
Not sure where you live, but we see a fantastic PT privately at Arlington Pediatric Therapy in Arlington Heights...we also have a terrific PT through early intervention.

Hi C. -
My daughter too had low muscle tone and did not walk until 20 months. She has flat feet (like her dad) and was also evaluated. She received PT once a week through Early Intervention. At first we were told she may need braces on her legs but eventually as the PT worked with her we were able to get orthotics for her shoes. The orthotics are quite costly, so it was a good thing we went through the state for them.

She is now 27 months and walking around very well. She's not running or jumping yet; but is climbing stairs (and everything else) and getting into all kinds of "toddler trouble". She is also on the autism spectrum and we learned that a lot of her pronation in her feet could be sensory. The orthotics give her the input she needs. Work with your Physical therapist and see if Early Intervention (Child and Family Connections) can do a total eval on her. It doesn't cost anything and will give you piece of mind.

B. A.

hi C., our daughter is almost 48 years old now but did not walk until she was 16 months old. she was 1 month premature but healthy and tiny. doctor said she would walk when she was ready. we walked her alot holding on to her hands and when she took off on her own and became a great track star when she was in high school we knew she was fine. try not to worry as i feel your daughter will be o.k. L. v.

I would check to see if your daughter doesn't have a sensory issue. My daughter is 18 months old and was diagnosed with low muscle tone at a year old. She also has issues with her feet. She also had issues with her hands. She wouldn't bring anything to her mouth. We tried sensitivity exercises. We use early intervention therapists too and they are wonderful. We worked on putting her feet and hands into beans, rice etc. Now she puts everything in her mouth and stands a little better. She was standing on the outsides of her feet. It has worked very well. She still curls her toes on the carpet. Our therapist also suggested a good shoe to take away the sensitivity. Just a thought.

We just got a benik vest today to help support her trunk muscles so she will learn to crawl and walk. Right now she rolls to get around.

i used to work at helping hand in countryside, IL and they have an EI program with PT's etc so i've seen many, many kids come through the program with low tone. the great news is that many many kids "catch up" within 6 months or less. these kinds of things are more common than you think. it's great that you took her for a pt eval, bcs most parents are sort of in denial when their kids have issues like that. i'm sure she'll catch up using the exercises the pt recommends. best of luck!

I am a pediatric PT. Low muscle tone is a common diagnosis these days. Most kids with low tone tend to do well with therapy. The theory is that we cannot change their tone(you are born with that) but you can compensate for it by strengthening the muscle groups. Is your daughter pulling to stand or cruising yet? In terms of the orthotics they will put her feet in the correct position to help her be able to then walk etc. Some kids/people always need to wear some type of orthotic while others only wear them short term. If decreased muscle tone is her only issue chances are by the time she is a preschooler you won't see much difference between her and other kids. She may not be the fastest or most athletic but she'll hopefully be able to keep up with her peers. I of course, have never met your daughter but am just giving you information based on experience. Feel free to send me a message if you have any other questions!

Does your daughter have a walker? Our son did not walk till 16 months but he had a walker that built up his muscles. We also did up and down exercises. Sitting to a stand up position by just holding our fingers. We know a lot was with the muscles in his arms but once he got up he had to hold him self up. We also started in the water before he could walk. Water is very good for building up leg muscles. Just get on of those floaters she would sit in and have her kick to you.

Our son just turned 18 (today) and has legs are like tree trunks now. He played football and wrested in high school and played soccer plus karate before that. His doctor says it is hard to believe this is the same guy who once did not want to walk and had poor gross motor movement. So keep working with your daughter. Do some research on your own. Doctors don't always have all the answers, we sometimes have to find them ourselves.

S.

Yep, been through it, in it now. Our son was cruising but didn't even attempt to walk. Low tone, ligament laxity, and flat feet. The PT started core strengthening at 14 months (adjusted - 8 weeks premature) and he finally started walking at 18 months adjusted. We waited to see if his leg muscles would strengthen to decrease the pronation (falling inward) but he needs more stability, so we're getting the orthotics on Monday and he'll be wearing them for the next 9 months to a year.

I was also worried about how much he was missing out on, but I find it helps to take the long view: She won't be like this in kindergarten! My son got a lot of confidence once he started walking and now it's hard to picture a time when he didn't, even if he's still on the wobbly side.

My son was diagnoised with low muscle tone when he was about 6 months old. The only reason we found out so quick was he had torticollis so he had to wear a helmet for 3 months to help reshape his head when i took him in to get his torticollis checked out by a PT they figured out he had low muscle tone. He has been in PT for over a year now he will be 2 this month and is walking and running with the other kids. Your baby will be able to do this stuff it just may take her a little longer and i looked at it this way my son just got to be a "baby" a little longer. He also has the smo's(braces) in two months after he got them he started taking steps so those do help if they decide she has to have them.

Dear C.

I am going through the EXACT same thing! My husband and I have 3 kids; boy/girl 13 month old twins, and a 3 year old girl. Our boy twin has low muscle tone; also known as Hypotonia. He isn't yet sitting up unsupported, or crawling, or rolling over yet, but we have been given special excersizes to help him. We could be facing foot braces too, although we have no real ideas as to what is really going on. He's got an MRI scan booked in Sept; hopefully nothing will show up, but so far, there doesn't seem to be any reason for his low muscle tone, apart from him (and his sister) being born 6 weeks early. I am about your age too; it's a hard thing to face, but there is hope. Our boy was "diagnosed" just 2 weeks ago; still all very new to this, as you are. Would love to hear more from you; can definately empathise.

C. (from New Zealand)

C.,
I would go a head and see an orthopedist sooner then later. There is a really good one in Lake Forest, IL Dr Andrea Kramer. If she does need help then she may correct quicker being younger. I have a child with low muscle tone and he has had to be in specialized plastic braces. We found because we started early we were able to correct the problem at a shorter length of time. The braces became large ankles hugging inserts and now we are at small heel hugging inserts. As far as therapy goes, did you get in touch with Early Intervention of lake County or your county? The therapy is free and they have some wonderful therapists.
Take care and I'll say some prayers for your daughter and your family.

My son has low muscle tone and we are in the same situation. He has been in PT for a year now and is almost 15 months old. He will cruise on furniture or someone's legs while they are walking but will not take those first steps himself. If he doesn't start walking in the next three weeks our PT will be recommending inserts also. My nephew and neice wore these and they are no big deal. The plastic they are made out of is very flexible like a milk carton. You can get fun pictures put on them. If you check out www.midwestorthotics.com they have a picture of them under products and services, pediatics then sure step. I've been told that most kids will walk within weeks after having them. They usually wear them for 1 or 2 shoe sizes.

I was always under the impression that low muscle tone would be fixed when the muscle was developed. This is not the case. Once a child has low muscle tone they always have low muscle tone. It is the resting state of their muscles. It doesn't mean your child will have any different life than another just that it will take their muscle a bit more work to accomplish what a "normal" child will. My PT said that jumping might take a bit longer to learn than regular and things like that but once they learn they will be able to run and play like any other child.

Please don't put your child in a walker. Low mucle tone children need to use their muscle! Being in a walker does the work for them. They have to learn to develop their core strength to have balance to walk.

Hi C.,
My son has other kinds of issues, but I think that you could definately benefit from reading the 'special needs' thread on the hipmomma meetup messageboard. Its just a group of us mom's that have kids with special needs. We chat and share our experience, strength and hope. Send me your email address and I'll send you an invite. It's helped me alot, and I just started reading it a few weeks ago. I look forward to hearing from you.
blessings,
J.
____@____.com dot com

My son is 21 months and still not walking by himself , he crawls so fast, stands, cruises, but not walking. He was diagnosed low muscle tone a month ago, my pediatrician suggest to contact early intervention program, that's right they came to my house, now my son is receiving physical therapy , he just started a week ago, he also will need to use SMO. Mis I regret that I decided to start this process to late, I think the sooner the better, but doctors always say to wait until 18 months, but I think that is babies don't walk around 12 months you can start checking on that.
My concern is that he has a very bad temper so therapy is going to be tuff :(

OMG our stories sound so similiar.
At age 14 months my daughter hadn't even crawled yet let alone walk or stand on her own. To get around she learned to scoot around on her butt which was really cute at first, but as she got older we thought she should be crawling or walking by then. My pediatrician recommended an evaluation. At first I hesitated to make the call at first because I thought to myself "there's nothing wrong" with my daughter. Well I made the call to Child and Family Connections (an Early Intervention program) an evaluation was set up with a Physical Therapist and a Developmental Therapist. Both therapists did the evaluation right in our own home which was nice. In order to qualify for this program, my daughter had to have a 30% or more delay. Turns out she did and was diagnosed with low muscle tone and mild pronation at her feet bilaterally. Since my daughther qualified for this State of Illinois program, all physical theraphy was paid for thru the state. All we paid was a family fee of $20 per month. The best part was the physical therapists came right to our home to work with my daughter. She also ended up wearing SMO's (braces around her ankles and foot that fit right into a pair of gym shoes). These allowed for proper alignment of her feet. With low muscle tone, sometimes speech can be effected so we did also have a speech evaluation which there was no need for speech therapy. My daughter had physcial therapy 1x a week/1 hour at a time for 8 months along with the braces for her feet and was walking in no time. Upon graduation, her therapist recommended getting her involved in activities to continue her gross motor skills.
Today, at 5 years old she runs, boy does she run, she does karate, swim lessons, ride a bike - you would never know she had an issue.
So try not worrying.....your doing the right thing with the physical therapy and I would seriously think about the braces. I think the combination of both did wonders for my daughter.
Good Luck!
K.