2 weeks ago my son was evaluated by a P.T. because he's not walking yet. She determined that he had low muscle tone in his legs and was especially weak in his ankles. Today they determined that he also has muscle issues in his upper body and will need the help of an O.T. as well. They have recommended that in the mean time we go see a neurologist to determine if there is a neurological reason for his difficulties. He seems to be functioning fairly normally. Had it not been for the fact that he hasn't tried to walk we would never have known about this. He is standing while holding on to something, but only because he's locking his knees (which are hyperextending)- he cannot support himself otherwise. He stands on the insides of his feet, which, in turn, cause them to turn outward.
Has anyone had experience with "low muscle tone" and know what we might expect to hear from a neurologist. What questions should we be asking?
Right now the plan is to do therapy (pt and ot) weekly and, based on what the neurologist says, be fitted with some sort or orthodics for support.
They might suggest a mild form of cerebral palsy. It can affect the muscles only and the person can be mentally fine. There are several different types of CP. Some the muscles are spastic, or lack tone, or ataxic. This is a good site explaining CP: http://www.kidshealth.org/kid/health_problems/brain/cereb...
A.,
My daughter is about to turn 2 and we were told about her low muscle tone at around 9 months. They sent us all over the place for genetic testing, eeg's, and nuerology. She is still undiagnosed with anything but low tone. However, the physical and occupational therapy have helped immensly. She did the same thing with locking her knees and standing on the sides of her feet. Her physical therapist got her AFO braces and those have helped her stabilize better, although she doesn't wear them all the time. She's not walking yet, but she is making clear and consistent progress. My best advice to you is not to sweat the milestones, he'll get there in his own time, and keep up with the therapies. Because of the low tone in his "core" or upper body, as my daughter has, it will take him longer to do things that require fine motor skills, such as feeding himself or coloring. So independance will be a bit farther off than normal. But if he's anything like Cloe, the challenges will simply give him a higher tolerance for frustration and more patience in day to day things. Don't let the doctors freak you out too much, they just need to cover all the bases. In the end, your son will get there in his time and be exactly who he is supposed to be. It sounds like he has a supportive family and good for you for being so patient and rolling with the punches.
If you have any questions feel free to message me.
-K.
I have a friend whose daughter is also 15 months old and not walking. They've done a few CT scans and she has hydrocephalus. However, if your son had that I'm sure you would have noticed before now. Anyway, in her case, she just has to do PT, and it seems to be helping a lot. Her physical therapist seems to think she'll be walking by the time she's 17 months old.
A., not sure where you are, but every state has an early intervention system for children under 3 whose development needs support. They can help you learn more and assist you in supporting your son's development. Finding out what might be causing the low muscle tone will be useful in knowing how to help him.
When I received my son through Foster Care he was only 4 months old and had very low muscle tone. I switched doctors, the first said he wouldn't be able to do anything and my new doctor said we would help him be the best he could and immediately set us up with OT and PT through First Steps in Indiana. He will soon be 5 and is in a Special Education Preschool, however, they expect him to be ready to go into regular Kind. next year. He runs, he jumps, he is playing soccer and no longer takes OT, PT or needs the orthodics. The things that most helped him was a positive attitude, a great doctor and wonderful therapists. They recommended toys for me to buy that would help him the most throughout the week, they taught me little things we could do that would strengthen his muscles and we praise even the small things over and over again. I was amazed at how much I learned in the sessions that I thought I was doing that would help him or was cute that was really making things harder. So I learned to be open and not take offense to anything they suggested since we all was working toward the same goal. Good luck and I hope you outcome was as great as ours.
Your story is almost exactly like mine. At 12months my son wasn't crawling or saying "dada". We had him screened and began working with an agency known as Easter Seals by the time he was 15 months. Byt 16 months he began crawling on his own and saying words like "dada". Now he is two years old...about 28 months. He can now walk with a walker, only he needs help turning. He says a few words like, "more" and "door" and "hi". Progress has been slow, but I see him getting stronger each day. He has global delays because his muscles are weak from his mouth to his feet. We had feeding therapy as well as OT and PT. Now his jaw muscles are stong enough that we are working more on speech. So he has Speech, DT, PT and OT. All once a week, except DT (Developmental Therapy) which is twice a month. I have been told by his doctors that the best thing is therapy and to keep working with him. We don't have any diagnosis as of yet. Although we are looking for answers. So, I just want you to know you are not alone. Keep working with the therapists. Do what they do at home each night. It gets old after a while, but keep at it. I have seen results in only one years time.
There is a Center for Hypotonia out in Baltimore, through John Hopkin's. Their website has a lot of information on it. We are thinking of taking our son there in the near future, especially if we don't get any answers from the genetic tests.
God bless, and keep the faith. There is an answer somewhere.
A.,
This is not unusual. I would not panic but I would be concerned. My daughter did not walk until 2.5 years. She always had low muscle tone. There are many different reasons for it. Your right about seeing a Neurologist. Not sure of facts about birth, etc. It could be something he may struggle with or he may have a mild disability, possible Cerebal Palsy or something like that. Maybe he will just be delayed in motor skills. Physical therapy and Occupational therapy is the right way to go. It can only help. Just be very patient-sometimes you don't find out answers for a long time, sometimes never. He probably will be sent for a CAT scan or an MRI just to make sure there isn't something else causing the problem.
My daughter was always small (14 lbs @ 1) 15.5 lbs @ 2) (17 lbs at 3). Took her 4 years to reach 20 lbs. But she is developmentally delayed in everything.Now that she is almost 8, she is finally up to 35 lbs. and RUNNING!!! We never thought she would walk.
Good luck!
hi there,
we didn't see a neurologist b/c my son has a metabolic disorder that causes low muscle tone...stretching is very important everyday..my son has had therapy since about 6months of age....he is 5 now...he has afos on his feet to help with support...that comes up to his knees...he has been walking a while now..but still walks on tip toes...
let me know if you have anymore questions..
Hey A., my daughter who is 2 1/2 now was diganosed with low muscle tone when she was younger. I don't have much advice but I did experience the same thing you're talking about with your son. I still don't really understand what low muscle tone is. She is very small, she only weighs 22 lbs. We think she has a high metabolism anyway, right when she started walking at 15 months that was when she was referred to the Childrens Developemental Service Agency. She does have play therpay once a week and she goes to speech once a week as well. She has grown so much since starting this program. She never saw a neurologist because her low tone wasn't serious I guess. She did OT one time and we quit that. She didn't need it at all like we thought. She wouldn't chew her food at first, that's why we did OT and after that one time, she started chewing on her own. Like I said, I don't have much advice but I thought you'd like to know that someone knows about OT and PT and stuff like that. I hope all goes well and I hope knowing that there are kids out there like yours helps you in some ways. Take care. J. A.
HI
I have had two friends go through this with late-walker babies. One took her son to PT and he started walking around 16 months of age, but he never saw a neurologist, b/c they figured they would just give the PT a try first. Her second child also walked late (17 months!) but the same doc never said a thing about her dtr having low muscle tone like her son did. They never took her to PT or anything and she started walking when she was ready.
My other friend had a dtr that walked late and they were running all kinds of neuro eval's on her, but nothing turned up. (She also didn't talk much by 16 months), but now she is almost 5 and completely healthy. You can't tell the late walkers from the early walkers by the time they are two years old!
My hubby is a PT, and doesn't specialize in Pediatric therapy, but he has friends that do. They all said sometimes docs will send overly concerned parents (like most of us tend to be!) to PT or a neuro doc to reassure them or make them feel like they are "doing something", when really, 99% of the time, the child will just walk or talk when they are developmentally ready to do so. He doesn't think they do it as a "racket" - most of them don't benefit financially from sending you to a specialist - but the pediatricians and family docs simply don't want the same parents calling 10 times a week about the same issue, so they give them something to do about it.
This is in no way a judgement about you or any other overprotectors out there. I was the same way with my first born - and it seems the only times I ever took him to the ER or urgent care was whenever my hubby was gone and couldn't be reached. He keeps me grounded when the HyperMommy in me wants to panic! :) My first child visited the doc for every runny nose or rash he got for the first two years. I relaxed a little more with my second son, and kids #2 and #3 have been to the ER a combined total of half what my #1 child has been! That is just our instinct - to protect our kids and if there is something wrong, get it fixed!
Try to relax around your baby and not push him to walk. My first walked at a year ("normal"), my second walked before he was 9 months! I was not ready for that! But my dtr, who was born 2 months early, didn't walk until she would have been (corrected age) almost 15 months. Some babies just have lower muscle tone, but as far as brain function goes, they are perfectly healthy! Try not to worry until 18 months. If it will make you feel better to see the neurologist, go see him/her. But if his other milestones are developing normally, I would cancel that app't for a couple of months and then see where you are!
Pray and let nature take its course - you will know when your mommy instinct REALLY tells you to go see the doc!
Let us know how things turn out!
All the best,
A.
There is a wide range of normal muscle tone...from low normal to high normal. You should ask if his tone is low or low normal. There is a difference. A neurologist will be able to give you some peace of mind. Many children have low normal tone and it doesn't mean that there is anything wrong.
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A., my husband's sister's grandchild was 9 months old and couldn't sit up or hold his head up yet. They took him to the children's hospital for tests and they said he had low muscle tone. It didn't have anything to do with a neurological problem but for some reason they put him in a little body cast for a while and I am not sure why but I will ask for you and try and see what I can find out and get back with you.
Poor thing. Bless his heart.
