Moms of kids with low tone — The Bump
Special Needs

Moms of kids with low tone

As of right now, DS's low tone is unexplained. The genetic and chromosomal tests so far are all coming back normal and everything else looks good. The neurologist said it's not severe, but to watch how he reaches milestones.

So my question to you is two fold:

1. Did your child have trouble reaching physical milestones? Did they/are they eventually meeting them?

2. What kinds of things did you have to do/are you doing to help them along? PT, OT, etc?

I appreciate any and all information you can give me. I'm a special education teacher and I thought I knew a lot about services and the process but I'm realizing I know nothing. :) Thank you. ?

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Re: Moms of kids with low tone

  • My DS is like yours, his low tone is unexplained.  So far gross motor is delayed but everything else (social,verbal,fine motor etc) is right on track.

    He was late to roll & crawl and is not currently standing on his own or walking at 15mths.  He  has made TONS of progress with PT services.  At 10.5 months he wasn't doing anything, not even rolling much, and now he rolls, crawls, climbs up stairs, pulls to standing, and is cruising.  I can't say enough about the benefits of PT.  Our therapist is amazing and has really helped us. 

  • image -auntie-:

    The view's a little different from this side of the IEP table, no?

    It certainly is. I know it's early and he's young, but I have to say that I'm seeing things I didn't before. I feel I was a good and understanding teacher before but I think this can only improve the way I write goals and hold IEP meetings. There's a positive in just about everything, I guess. ?

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  • How did they find out low tone at 5 months -- what what your concerns?  I am just curious because we think my son who is 13 months has a weak trunk or core, even maybe HIP area.  He sat up unassisted a little later than average (about 7.5 months) but he did roll at an average time.  He still won't crawl, just army crawls but PT thinks being he has been doing that for so long, that this is what he knows because he can get up on all fours.  He has pulled up and is trying even more to do that but cannot stand on his own yet or is not crusing.  He only went from laying down to sitting up by himself a bit after 12 months.  My Pedi does not think a nero appt is needed but I still set one up and have it in two months because I want to rule anything out.  We did a HIP exray and that was okay.  So far, his verbal and social skills are fine and fine motor are okay but he is not pointing yet.  The PT does not feel like he has low tone but she can tell he is weak in the middle area (if that makes any sense) and he is behind on gross motor. 

    Good luck to you.
  • oops, not HIP -- meant to say his hip area. 
  • image what??:
    How did they find out low tone at 5 months -- what what your concerns? ?

    He was having "events" that looked like seizures and he happened to have one at his 4 month appointment. She referred us to the neurologist who we saw the very next day. As she was doing the physical exam she mentioned he had low tone. I had suspected that because he just didn't feel right. He doesn't feel floppy (he can hold his head up, tripod, roll belly to back occasionally, and bear weight on his legs) but he didn't feel "right", if you know what I mean. Anyway, turns out he's not having seizures (yay!) but she wanted to go ahead and test him for everything under the sun anyway. We're waiting for the rest of the results.

    Sorry for the book. :) ?

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  • Thanks for the info.  I want to rule anything out as well.  You're doing the right thing.  Hopefully, he just had low tone and with some PT he will be good to go.  He may be a late starter, but that's okay :)

  • My daughter has unexplained low tone, although I personally believe it wasn't mainly congenital, rather a result of her significant motor planning difficulties (she never knew how to push up and move, cross midline, so she didn't build strength through the usual routes). She is slow with her physical milestones - she sat at 9 months, rolled at 14 months, walked at 18 months, She did buttscoot in a straight line at about 11-12 months.

    She's been in PT for a year now, private and EI. Her dev pedi basically told me she'll never really catch up physically, she'll always be a bit weak and probably isn't destined to be an athlete, but she'll be fine.

    Michelle
    3 boys (15, 8, 6), 1 girl (4)
  • My 20 month old DD has been "diagnosed" with hypotonia on her left side. I am still not convinced she doesn't have cerebral palsy even though her MRI came back clear. We're due for genetic testing next.

     PT is really working for her. She is getting stronger every day and is even trying to climb. She walked at 17 months, so she is delayed in gross motor anyway. The PT is building up her trunk and legs, which are the weakest. We also do daily stretches at home and we use the Wii fit board for her to step on and off. We definitely make a game of any muscle activities, so she enjoys them :)

     Her fine motor is advanced, so no OT for now. 

  • Ben was diagnosed with pachygyria so he does have an explanation for his low tone.

    He does/did have trouble reaching some milestones.  His head control was later, he rolled consistently later, reached for toys later, and isn't sitting yet.  He has met all of them except he is not sitting, pulling up, or crawling which he should be doing for his age.

    We are doing PT weekly with a therapist and since I am a SAHM we do therapy sessions all day long doing the same exercises he does with the therapist.

  • My son has PWS, and we are behind by about half on all the physical milestones so far.  (ex. we were told he may be able to walk around 2)

    We started PT at about 7 months and now we have it once a week.  We have had OT since about 3 or 4 months.  We do a lot of exercises on a ball with him and try to do tummy time as much as possible.  Tummy time seems to make the biggest difference to us.  I swear it helps so much more than his core. 

    We have several books and pamphlets that have specific exercises to encourage rolling, sitting unassisted, etc.  Even with PT I think the biggest thing is you have to keep a routine yourself so that he's getting help EVERY DAY.  Its like exercising to lose weight, if you only do it once a day, you aren't going to make much progress. 

    Best wishes for your LO!! 

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  • My daughter has unexplained low tone.  She started receiving PT through EI at the age of 18 months.  At that point she still did not crawl (she scooted) and could not pull to stand.  She would not even put her feet on the floor if you held her up.  She did not walk until she was just over two.  She still is considered delayed and receives PT through the local preschool under a 504.  A 504 means that she does not have an IEP, but she does qualify for the PT.  I loved the services we have received.  The local EI center is great at helping navigate the world of PT/OT etc before and after the age of 3.  Call your local service provider and see if they can help you out.

    Smiley: April '05 Rocky: May '06 Tex: July '09
  • My son has low tone as well. He was diagnosed with Noonan Syndrome, which is the explanation for it. He could sit up if we set him that way when he was 9 months old. He doesn't put any pressure in his legs really. He is nowhere near crawling or any other kind of motion. Our nurse said that she saw him roll over this week, but no one else has seen him come close yet. He has been in PT since he was 6 months old. The worst of his tone issues, though, are in his face. His mouth is too weak to suck a bottle, so he is fed with a G-tube. 
  • My son has low tone too..he is almost 23 months old now. He has had it since birth. We had issues with breastfeeding and feeding, he would take an hour just to breastfeed, I knew there was something wrong! But no one said anything until around 4-5 months when he still wasn't holding his head well... at 6 months he wasn't even close to sitting. So at 8 months we started EI with OT, Speech (for his eating issues) and soon we'll start with PT. He now walks, kinda runs (falls a lot still tho) and climbs onto everything. He is eating SO much better now, if you didn't know he had issues, you wouldn't think anything is wrong with him now. But EI has been the best thing for us, it has changed Carter so much into a "normal" boy. His genetic testing has come back normal, and we see the Ped Neurologist in Sept to see if they want any other tests..so we'll see. My peds says the tests are good to rule out anything, but somethimes they just have low tone and there is no reason for it. GL!
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