Friday, February 6, 2009

Low Tone Woes

I may have mentioned a few (cough *thousand* cough) times, that like many babies with Down syndrome, Dylan has hypotonia, or low muscle tone. We were told this fact shortly after his birth while he was in the NICU. Honestly, at the time it didn't mean much to me as I was trying to digest Down syndrome and an AV canal defect as well. Also, I didn't fully understand the impact that hypotonia would have on Dylan. Now that he is 7 months old, I feel as though I am beginning to understand the challenges it brings.

Dylan is wobbly. So so wobbly. I am concerned that he is quite far off from sitting and I am not able to help him. Each time I try to hold him in a sitting position, he arches his back and gets totally rigid. His OT told me that this is his way of trying to stabilize himself. He feels out of control in a sitting position, thus he tightens himself up. This is understandable, but, how can I get him to get used to sitting if he isn't able to practice the skill?

We try working on tummy time, as I understand it is extremely important in strengthening muscles, but since Mr. Dylan has learned how to roll from tummy to back, tummy time now lasts about .2 seconds.

I am running out of ideas on how to best work with my little guy. I am also running out of places to put Dylan during the day so that he is still working on holding himself together. I understand the bouncy seat as well as the swing are not ideal places for strength building.

I would love to hear some ideas from you if you have them. Any positioners or seats out there that I should invest in?

As always, thank you so much for reading!

18 comments:

Adrienne said...

Laurie, I'm thinking you've tried this but if not I've seen lots of kids in Bumbo seats- supposedly those help. Have you tried that? I know I'm not in your position right now but I'm just trying to learn from others as I'm sure I will be there some day.

Derek, Kenzee and Gage! said...

Hey Laurie! From our experience, we found the bumbo and the jumperoo to work awesome for Gage. Once he could somewhat hold his head up, we plopped him right into the jumperoo and it was fun so it encouraged him to hold himself up a bit but he still had the support. And bumbo sitting happened slowly. At first he didn't want to use it for very long, but it slowly got longer and longer. Our PT also told us to encourage him to play with his feet and put them in his mouth, since that helps strengthen tummy muscles. Gage was the same way with tummy time for a long time, and he would so much rather sit then lay down now that he knows he can. Lets see... I'm trying to think of more ideas... I always tried to play with Gage on the ground with his back supported by my tummy, if that makes sense, so he was in the correct position but knew I was right there so he wouldn't straighten up and go straight back. Oh yeah, I forgot to tell you, Gage sometimes does the same thing as Dylan how you said he straightens up, but now that he has gotten more comfortable, he knows those aren't the muscles he needs to use to sit, so Dylan really will get it, and I bet it won't be much longer!! If I remember anything else we did I will be sure to let you know!

Bethany said...

Hi Laurie ... does Dylan get PT? I know you mentioned OT, but what about PT? My bio daughter's muscle tone was mildly low, but my adopted daughter's tone is low. She is a loose little thing. Here are some ideas off the top of my head:

1) Do baby sit ups with him. Lay him on your lap facing you. Holding his hands, pull him up slowly toward you. The purpose of slowly is so that hopefully he will try to help get himself upright by pulling on your finger, thus strengthening his gait.

2) We put our bio daughter in an exersaucer very early, even when she was still wobbly. We would pack her in with blankets to sort of hold her in place, slowly taking the blankets out over time. Even from the beginning, you want him to wobble a bit in there because he will constantly be trying to keep himself steady, which will strengthen his gait. Don't worry about what they say about exersaucers or anything that separates the legs not being good for our kids. The gait strength is more important and anyway, once he bears weight, the exersaucer isn't going to force his legs apart because the fabric isn't that rigid.

3) Speaking of the legs, have you been told to always carry him with his legs together? We always made sure to do that.

4) We used a bumbo as well. Good for gait strength, but in my opinion it doesn't do as much for them as the exersaucer idea I mentioned above.

5) Fly like superman. LOL. Every time I walked upstairs with our bio daughter, I would hold her out in front of me to fly like superman. It helps them with a sense of their place in gravity, and it helps strengthen those muscles. You will probably need to mostly support him now, but eventually you can move your hands further down his body so he is having to support himself in the air. Make sense?

I'm trying to think of what else we did ... I'll let you know if I think of anything else.

Oh, we always put a boppy around her hips when she was learning to sit on the floor. It sort of supports them and if they flail backwards, they don't get hurt.

:)

Karly said...

We did most of the things Bethany mentioned with Kailey. Doctors have always commented on her having decent tone, but I would say she is probably moderately low. We used the Bumbo, especially with the tray on it when she was older. She could stay in it longer and sat up better while playing with toys. We also used the excersaucer. We hid it from our therapist, as she is one of the people who believes this enforces too much leg extension. Our Ds specialist used it with his kid and Kailey always loved it. She never had her legs locked all the time with it, so it probably just depends on the kid.

And like Bethany mentioned, we always did "sit ups" with Kailey~a couple at each diaper change. I think this really helped with trunk strength. We also did a lot of work with her sitting on top of an exercise ball. I am sure your therapist does this, but you can sit them on top and roll/bounce them in different directions. It helps build balance and core strength. You can also get a smaller ball and stand him up against it. Just standing (with support) and stabilizing with the ball helps and Kailey always thought it was "fun."

Good luck!

Lis said...

A Bumbo?

Bethany said...

Are you asking what a Bumbo is?

Tricia said...

We did a lot of tummy time on top of us with Georgia since she would roll over. (i.e. lying on our chest, or across one of our legs so it's sort of tummy/kneeling time) Georgia didn't sit until 9 months and it was at least 3-4 months before we felt safe enough to remove the pillows from around her so she wouldn't bang her head when she inevitably toppled over. One thing that helped was teaching her to use her legs as a prop for her hands. Kids with DS tend to have shorter arms so they cannot prop up on the floor like some other kids can/do. Is that an issue with Dylan? We used the bumbo too. And if she would have tolerated it, we would have carried her in a sling more just to keep her all aligned (sort of) to the center...but she hated that thing. Oh! And a peanut shaped exercise ball helped with kneeling and trunk support. We also propped her in the couch corners. Hmmm...tring to think what else....

Kleidy said...

Everything that was already mentioned above worked for my niece.

Also, massages are “Key” for her muscle tone and to help her calm down when she gets stressed. Massaging her whole body during her tummy time helped her stay in that position longer. Lots of massages when she wakes up, during her bath time, when getting dressed, in the afternoons and before going to sleep (massages in her mouth are also helping her with her ST). Keep in mind, that every kid is unique with its own clock, my niece started sitting w/out assistant just recently. Don’t panic, stay calm and positive, soon Dylan will be able to do it too :).

Jocelyn said...

Hey Laurie, So we are super fortunate to have Pat Winders as our PT. She wrote the book, "Gross Motor Skills for Children with Down Syndrome." If you don't already have a copy I would highly recommend it. It is very step by step with pictures and shows lots of little things to do as precursors to sitting, standing, etc. Myles is far from sitting alone, but we are focusing on supported sitting by giving lots of trunk support. Pat prefers using our hands as support rather than the bumbo because the bumbo does not give very great support to the lower back and therefore kids, like Myles, will just hunch his lower back over because it is more comfortable. We do use the bumbo for short periods of time so he can have some upright play, but not for teaching him how to sit. Like others said, encouraging hand to mouth play to strengthen his trunk and tummy muscles and pull to sit by holding his hands and helping him sit up when he cues by tucking his chin and moving forward. We do this with towels under his head for support so he doesn't have to travel so far. His play gym works great for foot play because he likes to kick the hanging things with his feet. We also do supported kneeling (it's in the book) and tummy time. You're probably already doing a lot of this even if you don't realize it! He'll get there, it's just tough to be patient.

Jocelyn said...

Oops, I meant hand to foot play, not hand to mouth. :)

Bethany said...

Oh yeah, the exercise ball is another great thing that I forgot to mention. We also saw Pat Winders when she was in Baltimore...luckily Payton was walking before she left us. The one thing I noticed with her was repetition. Pat taught us repetition of movements and Payton always figured it out right away after she was literally SHOWN the movements. That has rung true for everything we have done with her.

Angela said...

Laurie,

I don't have any additional recommendations b/c you've already gotten some great ideas. I just wanted to commiserate with you. LOW TONE SUCKS!!!! UGH!!!!!!
My nine-month old is like a three-month old!!!!!!!!!!!! I know, I know, he WILL sit. He WILL crawl. He WILL be able to held on my hip without needing to be held with two hands b/c he'll throw himself back. He WILL be able to sit in his high chair without a towel around him b/c he doesn't have the trunk strength to pick himself back up after he's slid down too far to one side. But good GRIEF I am getting sick of it!!!!!!

He has good head support and strong legs. And I realize that OHS and intestinal surgery plays a huge role in setting him back further, but UGH..................

It is by far my least favorite part of DS so far. I would do OHS twice if I could get rid of the low tone. LOL Not kidding.

Shelli said...

I agree with the comments you have gotten. I have a 14 month old and reading your blog I do and have had some of the feelings you are having. It's been at times hard for me to believe that my daughter actually has DS! And even jealousy at times when my good friend has a 13 month old that can stand and climb on things and my daughter can't I just know in time that she will it's just waiting. I have learned that DS consists of waiting which I am not good at but with God's help I am learning to wait and lean on Him.

Jen said...

I totally have a Bumbo seat you can HAVE if you want it. I'll mail it to you. It worked great with Evan. He used it for months.

Send me your address if you want it...I'll box it up. It's just gathering dust around here.

Amy said...

I am no help but I hope you find something that works for you and Dylan.

j*e*n said...

Laurie,
What worked well for us was lining the Bumbo with blankets to help her stabilize. We also lined the high-chair with towels to help fill the space 'til she found her balance. Another suggestion that worked wonders was to use the cabinet-liner stuff that keeps things from slipping. They sell rolls of it at W-mart for a few bucks, then you just trim it to the size you need. It works well to keep them from sliding around on slick surfaces in high-chairs and Bumbos. It's washable if need be, and cheap enough to dispose of if you don't want to mess with cleanup. Hope that helps!

theresad said...

Hi Laurie!
Dylan sounds the same as Fiona. She just learned to roll over and hasn't sit up by herself yet. He is sooo cute. Yay for the good hearing results!

angelasustala said...

Hi, Laurie - I just wanted to tell you I've walked the road you are now on ... and I just want to let you know it gets easier. I have an 8 year old daughter with DS. She was also born with an AV canal defect (complete) - and had it repaired at 3 months.
We use the National Association of Child Development (www.nacd.org) for intervention, which has been amazing!! you can see pix on my blog (which I've completely neglected since my 4th was born ... and interestingly enough, I was doing some research online about low tone when I found your blog!)
Best wishes to you and Dylan.