Need Help from Low Tone Mommas! — The Bump
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Need Help from Low Tone Mommas!

Last month my son (3.5 months) had a PT evaluation through EI (he has Down syndrome).  At the evaluation all of his skills were age appropriate and he's been meeting his milestones on time so far, even though he does have mild/moderate low tone in his trunk.  The PT said he didn't need services because he's been on track so far.

 Well fast forward to yesterday, we had our first meeting with my son's geneticist.  She was doing his physical exam and asked when we'd be getting our eval from EI.  I told her the PT said he didn't need servies and the geneticist was like, "Um, he definitely should have qualified for services because of his low tone, regardless of whether he is age-appropriate or not."  Now I feel awful that my son has missed out on therapy that he should be receiving because I was too naive to question the PT!  (I'm just starting to realize that what doctors tell me isn't always "accurate")

So here's my problem - we are moving in 2 weeks out of state, where I will definitely be having Ty re-evaluated and hopefully will start PT there.  In the meantime, does anyone have any exercises or good websites to recommend with exercies that I can be doing with my son (besides basic tummy time) to work on the tone in his trunk?  I do the best I can with him, but I can't help but feel that I'm not doing nearly enough!  Thanks so much!

Re: Need Help from Low Tone Mommas!

  • WOW....reading your post was like a flashback in my own life.  Riley (8.5 months) also has Down syndrome.  He has really low tone in  his trunk, and up until about 6 month was on target.  He is starting to lag behind now that he is older.  We are in CT (not sure where you are or where you are going to) and our first EI eval (at 3 weeks old) had the same outcome as you.  Yeah, he qualified for services, but they said there was nothing they could do b/c he was too young.  So I had to make a stink, and they actually did something, and by 2 months old he was getting services and now gets OT, PT and visits by his teacher/service coordinator/developmental therapist several times a month. answer your question...the BEST books I've seen (that match 100% with Riley's therapies are:  Fine Motor Skills for Children with Down Syndrome, Gross Motor Skills for Children with Down Syndrome, and Early Communication Skills for Children With Down Syndrome. 

    They are pretty inexpensive. I have all 3 and refer to them as Riley progresses in his skills.   They are really great.  They explain what is going on in your child's life, and break down exercises you can do to help them move from one stage to the next. 

    I know what you mean by "I can't help but feel that I'm not doing nearly enough!"  I feel the same way.....I've found that I just need to keep life in perspective.  I have a 2 year old son as well that needs a lot of attention, so I just have to do my best to give both of my boys what they need.  In the end, they are happy, loved, and healthy, so that makes me happy.

    Take care and good luck!

  • Thank JP. I'm going to check those books out tomorrow. 
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  • I have googled looking for good websites on low tone and have had not great results but I will tell you what we are doing in PT.

    First, I wish I would have bought one of these 4 months ago;

    It is a mirror by Lamaze and IMO worth every single penney. We just got one a few weeks ago. What is great about it (the picture does not show very well) is that the triangle wedge behind the mirror can fold out and be used as a tummy prop with the mirror part being on the floor. The belly goes up one side of the triangle and the arms go down the other to reach towards the mirror part. You can also prop up the mirror so it is more angled and your LO can look at himself. Nate has done much better at his head lifting since we were loaned this from our vision teacher. The mirror detaches and can be hung in the car and you can use the wedge for other tummy activities. We have also started working on sitting and I turn the mirror in the portrait orientation, let it stand up about 20 inches away and Nate will "talk" to the other little fellow sitting across from him.

    O.k. Other stuff...

    1. You can start with arm stretches while on his back or changing table from the open "T" and then cross them in at the midline alternating what arm is on top. This opens up the chest and gets the shoulders loosened up. You can also do "so big" type stretches and alternate what arm goes up above the head.

    2. Nate likes to stand and I got a 12-15" bouncy ball from Target for about 2.97. (You could also use an exercise ball) I stand him up with the ball in between us and have him sort of drape over the top of the ball with his arms on the ball, I put my thumbs under his arm pits and hands on his back to steady him and roll the ball and him toward me a few times and back down to the floor. I will also roll him up and then side to side to see if he tries to "right" himeself or counteract the movement by shifting his legs. It is sort of an alternate to TT and helps with the neck control.

    3. We also do a lot of reaching exercises with his favorite toys. While he lays on his back I will dangle a toy and get him to reach for it sort of above his head and we also work on rolling from side to side going for a toy.

    4. Both of Nate's PT's say that Tummy Time is the gold standard and everything sort of grows out of that. Going through the motions to roll over into tummy time forces LO to use their upper body strength to get their arm out from underneath them. So don't just put him into the tummy position, help him get there from his back with first twisting the leg over the other, helping the hips to roll over and then the upper body should follow. If he gets stuck on his arm you can sort of help him by making sure his hips are square to the floor and sort of add some pressure down towards the leg that is opposite of the arm that is stuck. This gentle pull diagonal to the stuck arm will help him to pull the arm out from underneath him.


    ETA: I am not sure if your little on is rolling over yet, but we are still working on this skill so this is what we are doing.

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  • like pp, i also recommend gross motor skills for kids with Down syndrome. it's a great book that i reference even now when he gets pt.  my son was the same way so he didn't start pt until around 8 months.  before then, we'd get a pt- from the home program he was in-a couple times just to offer suggestions.  

    for suggestions, when you hold him, try to place your arm under him bum.  this way you're not supporting his back too much and he HAS to use his tummy muscles.  get a big exercise ball (if you don't have one, it's a good investment as you will constantly use it) and at this age place him on the ball on his tummy and move the ball so that he has to raise his head and can work on those muscles(later when he is bigger you can place him on his back on the ball to do sit ups with..both regular and from the side).  if he's able to hold his head up a bit, you can sit him on your knees and just bounce him so that he has to use those tummy muscles.

    since he has low tone, try to give him massages(deep pressure) to waken up his body before exercises.   

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  • Awesome awesome suggestions...thank you!  I'm writing all of this down :-)  I've actually seen the gross/fine motor books in the library, but never checked them out.  I'll definitely just go ahead and buy them since they seem to be valuable!  I really appreciate it!

    *The image of my son laying on the big exercise ball made me laugh...he would SO love it though!  We do have one, so it'll be put to use!

  • I am an OT in Oregon and work in EI.  I can tell you that qualifying for services varies from state to state.  In OR you have to have a score of -2.33 standard deviations below the mean in one area or -1.8 (I think) in two areas.  There is the option of "professional judgment" but is used very rarely and least in our state.  Unfortunately, a lot of physicians know very little about EI services and will make it sound like parents are missing out when really they don't know about eligibility.  Do you have private insurance?  Getting services privately might help to prevent delays or bridge the gap until he is eligible.  I know that sounds ridiculous since you want to prevent a delay to begin with but if EI services didn't have eligibility requirements every kids with a possible predisposition for a delay would be seen...which would be great but there is absolutely no money for...most of the time there is no money for the services for kids that have a documented delay.
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