Down Syndrome: A Day to Day Guide: Low Muscle Tone: What to Do

Jett's tone was addressed early on, so he didn't have major issues with it.

What is it?
Also called hypotonia, low muscle tone involves "floppy" limbs that appear "noodle like" with loose looking joints. If left untreated, it may cause your child delays in crawling, creeping and walking. Fortunately, there is a lot that you can do to fix it.

What causes it?

Low muscle tone is caused by a weak signal from the brain to the body and vice versa. Muscle tone is different from muscle strength. Tone involves the ability of the brain and body to send messages to each other, not the ability of the muscle to push, pull or pick something up. The best way to fix tone is by fixing the brain-body connection.
With low muscle tone, the brain sends the message, but the message is weak so the body doesn't get the message.
People can also have high muscle tone (or even mixed or different types of tone in different parts of the body). Those who have cerebral palsy may have high muscle tone. In this case, the brain sends a signal to the body and the body gets the signal, but the body's message to the brain is weak. For instance, the brain tells the hand to "hold on," but, the body can't send a message to the brain that says "I got it," so the hand just keeps holding it and never gets the message to let go or to do something with it.
Strengthening the nervous system to improve the brain-body connection is the way to fix muscle tone issues.

What causes low muscle tone in people with DS?

Problem: Simply speaking, the over/under expressed genes seen in those w/DS can cause brain issues. The brain is part of the nervous system, which also includes nerves that connects each part of the body to the brain. If those nerves are impaired, then they will have a harder time communicating with the brain and rest of the body.

Solution: It would make sense, then, that strengthening the nerves and nerve function would increase the communication between the brain and body thus increasing muscle tone. I know of several children w/DS who were not walking at four years old, but once they took supplements that supported nerve function, they started walking. B12 is your best supplemental path to nerve support. See my post on the ins and outs of B12 supplementation: Why B12 and folinic acid for those with DS?

Another cause is GABA overactivity, a common problem with people with DS. Too much GABA causes many problems, one of which is low muscle tone. Ginkgo biloba helps regulate too much GABA. See Gingko Biloba. (It works for most kids w/DS, a few don't respond to it.)

Poorly integrated reflexes effect muscle tone. As I explain below, Rhythm Motion Therapy and the QRI Laser Home Program help address this issue. My child with CP had mixed muscle tone and the QRI Program helped tremendously. At almost three years old, he was able to walk for the first time after four days (about 4 hours) of lasering. To learn more about how the laser is helping kids with tone issues, you can join the QRI Cold Laser Facebook group.

What activities can you do?

I learned from Jett's neurodevelopmentalist, Kay Ness, of SENC, that there's plenty of therapy you can do at home to strengthen the communication between the brain and the body.

Massage

First, I recommend massaging your baby everyday with an oil that is edible such as organic olive oil or coconut oil. Touch is such a simple act, but it is does amazing things for babies. It stimulates growth hormone release, feel-good hormones, bonding hormones and promotes sensory awareness. I massaged Jett daily from birth. See How to Massage Your Baby for details. The act of massage stimulates the nervous system, gently sending signals throughout the body.

Rhythm Motion Therapy

RMT is a great way to strengthen the brain body connection. It's easy and fun. You can learn how by contacting Kay Ness or looking for a local practitioner in your area. There are some youtube videos as well. I like https://www.youtube.com/watch?v=YCOvuGiwnTA. I highly recommend this activity! Here's a video about the benefits and it briefly shows you what it is like: https://www.youtube.com/watch?v=vRsOwqPoOJ0.

QRI Cold Laser Home Program

This therapy that uses a safe, hand-held cold laser along with an easy to follow step-by-step instruction booklet is what has helped my son with cerebral palsy the most with his muscle tone (and much, much more). Jett's muscle tone was not bad. But this cold laser program helped him as well (and in many other areas). You can learn more about this extremely helpful device and program by joining the QRI Cold Laser Facebook group.

Kay Ness' Tactile Sequence

These hands-on activities really helped Jett with his muscle tone by stimulating the nervous system in different ways.

At birth, all babies -- typical or those with DS -- have less ability to feel. Their mouths are more sensitive than their fingers. That's why you see them put everything in their mouths. Also, if your baby can't feel his fingers and toes, it's more difficult for him to know where they are in order to move them.

Kay's Tactile Sequence addresses the three major tactility sensors of deep, light and temperature.

With these exercises, you are stimulating all the types of tactility sensors:

the deep sensors next to the bone
the skin surface with light touch, tickle and light pressure
hot and cold sensors

Start all tactile stimulation at the finger tips or toes and move up to the top of the limb. So, work from fingers to shoulder, from toes to hips.

Deep pressure

The deep sensors next to the bone are responsible for pain response, muscle tone and mobility.

Starting at the tip of a finger, squeeze with the flat of your fingers to the point of response (slight pulling away, eyes opening, etc.)

Feel the bone when you gently squeeze down. Slowly squeeze up that finger bone to the wrist

Grasp and then release

Move up a little higher. Do all the fingers and then with both hands, squeeze all the way to the bone on the wrist

Grasp, then release

Move up to the next point on the bone and do the same. Slowly work your way up the entire arm.

It should take between 1 and ½ minutes to 2 and ½ minutes to work your way up each limb. Go slowly. You should be able to notice a response in your child. For Jett, it was a flicker of his eyes. You do not need to press so hard that your child cries or vocalizes in pain.

Move to the next hand/arm. Then do foot/leg, other foot/leg. Now you are done.

One time use your hands. The next time use a massager that "rattles the bones," again moving very slowly up the limb. The change in stimulation helps the sensory system normalize more quickly.

Skin Sensors

The skin sensors are responsible for touch, ticklish sensation, feeling of textures and fine motor abilities.

Wear mildly scratchy "bath gloves" that you can get from the Dollar Store. Starting at the tip of the fingers, pat the hand/arm all the way up to the top of the arm. Now go back and tickle the arm all the way to the top. Do the same to the feet and legs. Now put on the tactile gloves and rub very lightly from tips of fingers to top of arm -- "irritating" all the skin of the arms -- do all of the hands/arms/feet/legs this way. Repeat the cycle until the timer goes off. – 3 minutes.

Cold/hot sequence

There are also the hot and cold sensors in the skin. You may be shocked when you do this exercise and realize how little your baby senses hot and cold. It was remarkable to me that after a while of this therapy, Jett learned a normal response to temperature. In his swim class, for instance, he'd be almost blue with cold and never protested! Now, he has to have his bath water "just so" -- well, don't you? When I first did the cold therapy, his eyes barely flickered. But toward the end of his temperature therapy, he would just see the cold wand and go, "wooooooo" in anticipation and move his hand away pretty quickly -- just like you would if someone put an ice cube on your arm! For cold, I used a bright orange plastic stick that was filled with water. For heat, I used an aromatic stuffed dog that you could microwave. It's a neck wrap with a removable insert for either hot or cold. He loves all his therapy and I have to hide everything or else he'll play with it on his own. Taking it out only for therapy gets you baby really excited about the session.

Starting at the tips of the fingers, put the cold material on the skin and hold it there long enough to actually affect the skin temperature. Slowly move it around and up the limb until you are at the top. Do hands/arms/feet/legs. Do cold first. – 2 minutes

Here are some extra ideas for "cold play": http://amomwithalessonplan.com/ice-play/

Are slings okay? What about using a stroller?

A simple way to promote a sense of awareness in space as well as to build your baby's core muscles, is to carry your baby in your arms or in a sling, wrap or baby carrier instead of a stroller. A good sling is the Moby Wrap. My friend actually made me a purple one and my husband a black one and they work great. (Just email me and I can get her info to you.) Jett loves being in the wrap and actually hates strollers. It's funny because when I go walking with friends who have strollers, their babies see Jett and make their moms take them out and carry them! So, now they just wear them and don't even bring the stroller! Also important to note: Jett has really great core muscle strength -- I think mostly due to the wrap use over the stroller. Carrying your baby works just like sitting on one of those big pilates balls -- it forces them to constantly have to shift their muscles to compensate for your movements. In a stroller, they are just sitting or laying without getting that sense of walking that a held baby can get.

Do exercise balls help with muscle tone? What about sliding, etc.?

An exercise ball is not for muscle tone per say... It's more for muscle strength, but if you give your child the opportunity to make those connections, it could eventually, very, very slowly make some sort of difference. So when your PT says to use the exercise ball for hypotonia, you can just smile and nod. It's not bad for your child, just not a cure for muscle tone issues. Same with sliding. Great exercise, but not specifically for improving muscle tone.

Are walkers okay? Are Bumbo seats okay?

Follow your baby's cues. Good muscle tone is necessary to keep your baby from overtaxing his joints and causing functional and structural problems when he starts to move and put pressure on his joints.

It is important that the proper developmental steps are followed and at the appropriate time.

It is often tempting to have your baby sit up before your baby is able to put himself in and out of that position. Until your baby is able to do so, he is not developmentally ready to sit. He has not developed the muscle tone or strength necessary for properly supporting his spine. So, no bumbo seats, etc.

Putting your baby in a standing position prematurely can cause hyperextension of the knees and other structural concerns. So, no walkers… Both activities, done prematurely, will limit the appropriate developmental activities your baby should be doing, such as developing a cross pattern crawl and creeping down on the floor. Also, don't leave your baby sitting unattended, not only may he fall, but he may try to gain motion by scooting on his bottom, which makes crawling much harder to achieve.

Once your child can crawl, pull to stand and is cruising, look into a Kay Walker to support his next steps toward independent strides.

Is Hip Helpers good?

No. When a child who is wearing one of these is x-rayed, you can see that the hip helpers actually places the joint out of the socket. Not recommended.

Is Kinesio tape good?

I never used it, but it seems to me that it wouldn't have lasting results... It would just temporarily make the child able to do something physical by relying on the tape for support. Since tone is the brain-body connection, not the strength of the muscle, the best way to fix tone is by fixing the brain-body connection. RMT, QRI, B12 and other nervous system nourishing supplements fix the underlying problem.