Daughter Got Diagnoised W. Low Muscle Tone

Updated on October 21, 2009
J.F. asks from Gilroy, CA
10 answers

My daughter was diagnosed w. low muscle tone at 13mon. and she started her PT and OT when she was 15mon. so far the therapist has come to our home 3 times (1 time/wk). so i cannot tell how much the therapy can help b/c she just came for 3 times by now.

right now my daughter can sit up by her own from her back if I put a pillow behind her. sometimes w/o the pillow if she tried so hard. she still cannot stand or pulls herself up to stand. she starts to crawl but very short distance. the way she crawls looks like the way ppl swim.

she is almost 16mon. i want to train her to eat by herself. but she likes to play with plates, spoons ... she likes to throw / wipe everything off her table to the floor. does every baby / toddler do the same thing when they learn to eat?

she is my only child. i feel it's so hard to raise her.

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So What Happened?

Thanks for everyone's reply and warming comments!!! I am so lucky that I found this community.

I want to add two comments to my original post:
I found my daughters' feet are so skinny and narrow. they are much smaller comparing to those who can walk at the same age. does anyone have similar situation?
please share your experience about how long it took you to finally get your kid walking independently. I am a working mom. and the grandparents from both sides are taking turns to take care of my daughter during the day. I am not going to choose daycare if I have the choice. Because I don't think daycare will help the kid doing the extra exercise she needs.

Thanks!!!

hi, All,
At 22 month my daughter finally started walking by her own.
Cheers~~~@~@!!!!!!!
Thanks everyone for helping me during my darkest period!

Featured Answers

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N.A.

answers from San Francisco on

Hi J.,

Have you tried magnetic therapy? That will help her also. It is great.

Let me know if you want to learn more.

N. Marie

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T.H.

answers from Sacramento on

Hi J.,

I have a child that is the same way and I have dealt with this since she was an infant. She is almost 20 now so I have definitely been through it all. I am assuming that they are calling it hypotonia. If not, ask them about it. It is easier to look it up online when you have a label. Also ask about mild Cerebral Palsy. Meghan began getting pt and ot when she was 18 mos and we had the same situation. They came out a couple of times a week. When you see the therapist, ask them what they are doing and if you can do it yourself when they arent there. You might want to get a therapy ball. It is one of those really big balls that you can do pilates on. They are really helpful for ot and they can show you exercises that you can do with her on it. Be as interactive as you can when the therapist is there and take notes or better yet, video it so you can review it to see how they are doing it. If you want, you can e-mail me at ____@____.com (don't sell avon anymore LOL) and I can give you more tips. YOU CAN DO THIS!!! Don't get overwelmed, just take it day by day and do as much as your daughter will do. A lot of the ot and pt looks like play so keep it that way with her.

T.

1 mom found this helpful
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C.S.

answers from Sacramento on

J.,
My baby was diagnosed with low tone too. He's had PT and OT for over a year now. They told me he needed braces on his feet, etc.
I took him to a muscle therapist in Sacramento who told me that it was not low tone causing his problems. She said that he didn't need braces but that he needed the muscle issue fixed. And that is exactly what she did. In one visit she straightened out his feet and legs and now he can crawl and can walk with a walker.
We've taken him back a few times. The nice thing is that we won't have to keep going back. She's actually making a difference.
The funny thing is that all of our therapists have gone with us to see her because they were shocked at the change.
I'm sure she would be able to make a difference.
Her clinic number is ###-###-####
Ask for Judy. There are a number of therapists but she is the one that everyone stands in line for.
Blessings,
C.

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W.B.

answers from San Francisco on

J.,

My daughter was diagnosed with low muscle tone as an infant due to her prematurity. She started OT/PT when she was about 6 months old and has had it off and on for the past 6 years. It is a slow process and the goals will change over time. My daughter is now 6 and still has some tone issues, but most people would not recognize it unless they are trained professionals. She looks just like any other six year old. Having your daughter in PT/OT now is the best thing you can do for your daughter - you're doing everything you can!

As for the self feeding issues, it sounds like typical 16 month old behavior. As long as she is eating and gaining appropriately, I would not worry. It is normal for 16 month olds to explore and play with their food.

Wishing you all the best!

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J.C.

answers from San Francisco on

Hi! Raising a child is hard and full of heartache. Take one day at a time and find funny things to laugh at with your child. Have you looked into food allergies/sensitivities? They caused sensory issues for my son, and I have a friend whose son's muscle tone improved after the allergic foods were identified and removed from the diet.

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K.N.

answers from San Francisco on

Dear J.,

I'm sorry you're going through such a tough time. Having a child with low muscle tone can be challenging but very rewarding as well. You can connect with other parents in similar situations for support through "Parents Helping Parents." I am a pediatric physical therapist that provides treatment to children with varying tone levels and support for their families. I know Early Start tends to be overwhelmed with the current economic times and if you would like to seek additional therapy for your daughter you may call my office ###-###-####. We do accept several different insurance plans which helps families keep their costs down. Whatever you decide, please know there are others out there to help you. I wish you the best.

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J.K.

answers from Sacramento on

Both my children "wipe everything off the table to the floor". Self feeding always started with some 'play'. I would just put 3 pieces of what ever and I keep a drop cloth on the floor.

I did find a few suction cup bowls that worked for a bit but then my daughter would pull and pull till it came off and not eat.

I do also allow my son to eat some things off the drop cloth right after I let him out.

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R.S.

answers from San Francisco on

Hi J.,
First let me say that I am sorry that you are going through this, it must be very difficult. My daughter is now going to be 15 has CP ( cerebral palsy). She had a stroke at birth. She was never able to crawl because she could not use her right hand so she could not put pressure on it. She has been in PT for many years now. The difficult thing is that your child is only recieving PT once a week. I am not sure if they will allow for more weekly but its worth asking. The other thing is that after the therapist is gone, you have to enforce the exercises. You have to continue to work with your child at home daily. It is very hard because as I am sure you know, children get fustrated and don't want to. Thats the biggest issue I found with my daughter, she did not want to work on it if she was not with the therapist. It becomes overwhelming. As far as the food issue, my son who is 4 still palys with his food at times. In my opinion, every child is different and adapts differently. Keep trying different things to engage her into eating, maybe let her pick out her own silverware or plates. I hope this helps some. Take care and good luck.
R.

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D.S.

answers from San Francisco on

Hello J., My dear I was going to pass this question because I didn't have any experiance-- until I read the last sentence.
As the mother of a disabled child, one that was not expected to live past his 1st birthday- and he is now 23, I want to give you some encouragement.
I have 5 children, 2 that have disabilities and the rest were inventors of the termADD becasue they were so full of adventure. Got to plant a tree inthe hole that the boys dug in their quest for seeing China!
This will never be easy, relaxing, free from stress, and a time to appreciate all that you will learn and get an education that money will never buy. You will get stares from people and you will learn to say, now that I have your attention I need help! Things will get tough but YOU will get TOUGHER! I know that you will need to learn to ask for help, and not feel bad because the dishes didn't get done, becasue you needed to rest. I promise that the dishes won't run away, the dust will still be there & I learned to write notes to my family in it when I got in over my head.
Let your family, neighbors, church, and medical and school staff help you.
I am here 24 hours a day and 7 days a week. I will be your cheerleader and other moms from mama source will feel the same way. Never give in or give up. My children are my greatest treasures, the life lessons I know have blessed many lives. When my husband became an amputee, my son knew what to do to help him and he was only 10 y/o. The total heartbreak is real, it is there-- but so is the joy, the miracles that you will see and be apart of over the years.
Take Care of Yourself, Nana Glenda

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C.Y.

answers from San Francisco on

Hi J.,
Yes, I think all babies feel the need to clear their tray, throw their food and toss their dishes when they first experience independent eating. I had 5 kids and they all had to see how many times I would pick up what they threw before reaching my limit. It didn't last long... but it seemed like forever! If you have a dog, keep him close to the high chair and you won't have to feed him for a few months. A baby dish with a suction cup on the bottom can help. I think the easiest thing to do though is to eliminate the dishes and utensils all together for the time and just "hand" your toddler one bite at a time of easy to hold finger foods.

As for the issue of eating complications due to low muscle tone - I'm no expert what-so-ever on LMT, but keep in mind that most little ones with low muscle tone do have eating issues. After all, the tongue is one big muscle. If it's slow to respond, it makes the issue of moving food around the inside of your mouth difficult to coordinate with the jaw's chewing action. Also, we use some major jaw muscles to chew. So, she's not just dealing with muscle responce time, your daughter is also trying to get her tongue to move effectively with her jaw. You and I never even think about it - but it's actually a lot to focus on if we had to!

You didn't mention whether or not you know the cause of her LMT yet. If you can find that out - it seems to me you could get a better handle on how to best help your little one to compensate.

Best of luck to you!
C.

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