Vol 19 Issue 2, July, 2010
Oral Myofunctional Disorders (OMD's), are differences in the position or function of the muscles of the face and/or mouth, including the lips and tongue. These differences in dental, skeletal, and muscular structures may interfere with appropriate swallowing, speech, and/or oral rest postures.
Resting postures of the tongue, the jaw, and the lips are very important in
normal oral growth and condition. If the tongue rests against the upper front
teeth, the upper teeth may begin to protrude too far forward. When the lips are
not in a closed resting position most of the time (when not talking, signing,
eating, etc.) the growth and development of the mouth can be adversely affected
by the tongue pressures.
A treatment approach known as oral myofunctional therapy has been shown to be
effective in correcting oral myofunctional disorders such as tongue thrust
swallow, improper tongue and mouth resting posture, improper use of muscles of
the mouth, tongue, and lips for chewing and swallowing, and late thumb/finger
sucking habits.
Reduced oral muscle tone or poor orofacial muscle postures appear to impact negatively on the growing mouth and facial structures. Upper airway infections and obstructions (enlarge tonsils and adenoids) are frequently identified as causes of oral myofunctional disorders, especially when these problems cause the mouth to rest open most of the time.
Regardless of the causation, once inappropriate oral behavioral patterns are established, they tend to continue until some external stimulus, therapy, or treatment alters enough of the patterns so that new behaviors can be learned.
Oral Myofunctional Therapy is a structured, individualized therapy for retraining and restoring normal oral functioning. It seeks to inhibit incorrect muscle movements, and to develop normal, easy functions of oral rest posture, oral stage of swallowing, and speech articulation. Therapy may include any or all of the following:
 | Elimination of damaging oral habits (digit sucking, nail biting, etc.). |
| Reduction of unnecessary tension and pressure in the muscles of the face and mouth. |
| Strengthening of muscles that do not adequately support normal functioning. |
| Development of normal resting postures of the tongue, jaw, and facial muscles. |
| Establishment of normal biting, chewing, and swallowing patterns. |
The length and timing of therapy varies according to the severity and nature of the oral myofunctional disorder. In most cases therapy is a short term process with the active stage lasting about three months. Follow up visits may be required with decreasing frequency over 6-12 months
Talk Tools® therapy tools are used to teach articulator awareness, placement and muscle memory. Talk Tools offers a series of products that you can use at home—feeding tools, sensory tools, oral placement tools, books and more. Instructions are included with each product.
Sources:
http://www.mnvoiceandspeech.com/myofunctionaltherapy.html
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A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort. ~Herm Albright |
It’s been 16 months since I first contacted you about my son’s behavioral problems. I am happy to say that he is doing much better this year. We put him on Zoloft (Sertraline) and it has made a tremendous difference. His mood is much happier and consistent. He rarely has a meltdown and no more biting himself.
Previously, we tried Risperdone and that did not work for him at all. His appetite was out of control and he immediately had problems with constipation. He was fixated on eating and yet miserable with bowel strain. Parents looking for help might want to ask about Zoloft.
I wanted to share our progress with you in the event it might help another family. Our son Ben is now 18 years old, completely non-verbal and still in diapers. But he does communicate with PECS and hand gestures. He loves music and Blues Clues videos. He has quite a sense of humor and knows how to push all of our buttons. Each day requires our all, but his heartfelt smiles make it all worthwhile.
Thanks for your ongoing support.
Patty Vogel, Oklahoma, USA
Ian, Age 25
We’ve had a challenging few months due to an injury that Ian had last fall. On September 23rd, Ian stubbed his toe getting out of his bathtub and startled. He hit the grab bar “head on” and suffered a “catastrophic eye injury”. Bob and I had left the day before for Boston. We immediately returned home on Thursday, September 24, and drove directly to Stanford Hospital where Ian had been taken y ambulance (his sister rode with him from Santa Cruz, about 40 miles). Ian had surgery that morning, and I stayed overnight with him in the hospital.
Unfortunately, the eye did not respond to the surgery, and two weeks later, On October 8, Ian’s left eye was removed. In November, he had another procedure (in-office) by the eye surgeon and will have another in-office procedure in late summer. After numerous visits for fittings, he now has a prosthetic eye. He also now has a bathroom transfer system that negates his having to stand up to transfer, and he wears goggles in the shower.
Through all of this, Ian has remained his sweet, good-natured self. He does not look back with regret or anger. He lives in the present and looks forward to the future...all qualities that I would like to emulate. We hope that 2010 will be a “dull” year for Ian and for us.
Judith Fried and Bob Scowcroft, California, USA
Oral Stimulation Discussion
My daughter who recently turned 2 continues to put everything in her mouth. Our speech therapist believes that she is sensory seeking and has suggested using a powered tooth brush to over stimulate her mouth. The toothbrush isn't making it any better. I wanted to know if other parents of CLS kids had this issue and what you found worked if anything or will it just take time for her to stop.
Thanks!
Amy Nolan
Lennard (just became 5) does the same; he's experiencing with his mouth
instead of hands / eyes. It's also a bit of sensation seeking we believe; he's
able to find rest when he sometimes feel something in his mouth (makes him calm
and sometimes give him the possibility to loose tension. For Lennard it became a
bit less between age 2 and 5, but it didn't stop.
Leon Vrijland, The Netherlands
I remember my Jacob would chew on his jacket collar and ruin it -- it seemed to pass with time, but we tried a bandana around his neck, that helped to catch the saliva involved also. I think it was soothing to him, maybe the anti-anxiety drugs he takes now for the SIDEs may help?? They gave us some kind of tubing for him to chew on - we knotted it on his wrist like a bracelet, but he never liked that.
Lissa Walter, Minnesota, USA
My daughter, Mercedes, had sensory issues and still does. I found her occupational therapist is wonderful with coming up with ways to deal with them. The speech therapist she had when she wasn't school age said the same thing as yours, but it didn't work for her. With Mercedes it is a lot of trial and error, because everyone is different. Don't get discouraged just keep trying.
Rhonda Strang, New York, USA
Boy, I almost forgot that about Jeremy who is now 13 and has long since passed that chewing-on-shirt stage. He did like the power toothbrush (he just uses regular one now) and we also got some food grade tubing for him to chew on at that time. Gum would have been good except that he always swallowed it. You can get food-grade tubing from make-your-own-wine places. If you make a kind of necklace out of it, or have it available where he would normally chew on something else, it can really help. Make sure it's food-grade plastic though.
Diane Englestad, Ontario, Canada
What a great idea. When Davis was little, he would bite the collar of his shirt and then pull on it and snap the fabric through his teeth. He did that until he was at least 4. At the time, I didn't know about the early loss of primary teeth and I thought he was doing it so much that he was actually causing his teeth to fall out. He stopped when he ran out of front teeth. :-)
I suspect there may also be some self-consolation going on as anxiety levels tend to be high in these kids and they may be soothing themselves by chewing on things.
Mary Hoffman, Washington, USA
My son Neil (5) started chewing on his collars about a year ago and we were told that it was a "stage". We lucked out (in my opinion) and we found a speech therapist that has also been trained through TalkTools. Neil has been identified as having weak mandibular muscles therefore when he eats, talks, etc. rather than his jaw going up and down it goes in a circular motion, therefore, he is not getting the same sensory "satisfaction" as we would while eating etc. For the past three weeks we have been doing some really fun exercises with him while eating (his favourite thing to do) and he is really striving for more and more oral stimulation, so he has been sucking his thumb and gagging himself with his fingers which I thought was a set back but she said that he is beginning to feel sensations through his mouth and is experimenting his limits and this shall pass. One interesting thing that we have been doing is introducing foods with a lot of taste, sweet, sour, spicy etc. and he has really been enjoying these new sensations.
One other thing is "crunchy" food, like veggie sticks or pretzel sticks we place them at his first molar, hold his chin and have him chew, he is very satisfied with his bite and he can also hear the crunch which lets him know that he has also done a great job!! Eventually, the goal is that Neil will learn that he can receive the oral stimulation he requires through foods rather than his fingers, clothes, tags, etc. We are very early in this process but already seeing some great gains, and his speech has grown, just the other day he told me he was playing with his dinosaurs, a tyrannosauros rex.....he has only been speaking two/three word sentences since last July. TalkTools also has toys specifically for chewing which were just introduced in our third session.
Kim Louden, Ontario, Canada
Wow, I sure wish I'd learned about TalkTools when my son Jeremy was young. He has spent way too much time in unproductive speech therapy at school over the years ( I was occasionally reprimanded because Jeremy was "uncooperative" in a session!). Still struggling with the same speech issues at 14, no doubt due to "weak mandibular muscles." I'm checking to see if TalkTools might still be able to help us now.
Diane Engelstad, Ontario, Canada
Is this the organization? http://www.talktools.net/ If so, they have a wealth of information here. They have some whistles and other "blow" toys that come in sets of increasing difficulty which are cool.
Mary Hoffman, Washington, USA
Yes this is the organization. When Neil(5) was using the horns, blow tubes and bubbles it was interesting to see that he uses all of his muscles from his shoulders up and leans into the apparatus rather than using his stomach muscles. So, when we had him sit with his hands in his lap and the therapist held his jaw with her hand and asked him to blow, just that resistance of her holding his jaw forced the air from his diaphragm, mind you he had great difficulty blowing the pom pom out from the blow tube, but he did manage to blow his first bubble from the wand! I found many of the toys/straws at Party Packagers which was easier/quicker for us then to order them through the mail. The toys are colourful, some whistles you can find in different shapes (trains, hearts, cars) which engage your child in doing something fun...but it’s therapy!!! Neil is loving this therapy, it is abit unconventional, but he looks forward to his speech therapy sessions and that in itself makes it worthful for all of us.
Kim Louden, Ontario, Canada
Bone Issues Discussion
We have been seeing an endocrinologist for my son Jake. He has broken the 3rd metacarpal on each hand - assuming this is happening due to falls - it's the bone that goes from the big knuckle in your hand down to the wrist. he has broken each hand at least twice, and when we saw the doctor, they did a bone age X-ray of his hand. We are trying to determine his age for puberty. Anyway, the nurse called me up saying his bone was broken again!! When I explained his situation, she had someone look at it again, called me back & said it's an old break. Makes me wonder if it's healing right? It's hard to tell when his hands are swollen as they have that look all the time, I compare the two hands side by side & look for bruising to tell. Has anyone else had this happen? Any advice? Thanks!
Lissa Walter, Minnestora, USA
When BJ could walk and had drop falls he was always breaking bones. He broke
his hand several times and his toes. His big toe on his right is deformed due to
breaking it so many times. He would always fall on it. There was never any
bruising and minimal swelling, so when he broke it the last time, I did not
realize until 3 days later. I took him to the doctors and they said the middle
bone in his hand was fractured. BJ told me his hand hurt and he could move it,
but now I don’t take any chances. If I even suspect that there is a possibility
of a break, I take him to the ER. It has always turned out to be a break.
Katherine Myers, Pennsylvania, USA
We did not have issues with broken hands, but David broke his nose repeatedly. He had surgery done on it and broke it again after the surgery to reset everything. He is a wheelchair user now due to a spinal cord injury, so he hasn't fallen as much. Only a few times when he undid his seat belt and tried to reach something.
I guess it depends on what hits first when they fall. David never put his hands out to break his fall. He always hit face first, so his nose and eyebrows took all the abuse. He used a softball face mask for a while, because helmets didn't do anything to protect the face, and that's what kept getting injured. I know what you mean about the swelling though. David's nasal bridge is really wide, and even more so now from the repeated injuries. It's hard to tell now if there is swelling going on, and he rarely complains about pain.
Mary Painter, Georgia, USA
Davis has broken his nose when he went down 3 steps in his wheelchair and ended up on his face. He also broke his big toe in a fall, right at the base of the nail which initially became completely deformed, fell off, and now 3+ years later is finally starting to grow back normally. The worst one was his spinal compression injury in his neck. Although not a broken bone per se, it did have a profound impact on the quality of his life. Had we known and treated it right away, he might have recovered more function.
If your child says something hurts, take it seriously. They tend to have a high pain threshold and may be hurt worse than it seems.
Mary Hoffman, Washington, USA
Repetitive Speech Discussion
My son Jeremy (14) seems to be getting more and more repetitive in his conversation (which has always been enthusiastic but limited). His favourite question is "What are you doing?", repeated over and over again. He doesn't really want the answer, just the continuation of the conversation. It's like a short circuit in his brain that bypasses any planning; it just comes out. Jeremy has always had autistic tendencies but with puberty it seems to be getting worse. Do others experience this? Do you have strategies to get the "button unstuck"?
He is taking a low dose of Risperidone for compulsiveness and I've wondered if I should increase the dose. Does anyone have experience specifically with medication around some of this? It strikes me that some of it is coming from anxiety.
I'd appreciate hearing your experiences and insights!
Diane Engelstad, Ontario, Canada
Our Son used to do this a lot. He still asks repetitive questions sometimes, but not as often as he used to. I can't really point to any changes in meds that made much difference. I frequently answer him back with a question. Something like, "what do you think?" Sometimes I change the subject and ask him something like, "so did you eat all your lunch today?" Going over his schedule for the day/week helps too, first we do this, then this, then this. That helps him know the order of events and he asks me fewer when questions.
Mary Painter, Georgia, USA
Tom (19) has always done the repetition speech. I think that this mainly comes from him trying to start up and hold a conversation with you. In the last 5 years his step-father has really pushed him to have "conversations". When he picks him up from day care they cover the topic everyday of "what did you have for lunch today?" This gives them a daily, routine conversation that last about 5-10 minutes. This has really helped to stimulate him in having a conversation with people instead of just asking a question and getting an answer and then turning around and asking the same question. Don't get me wrong, he still does that, especially when he wants to have a conversation and he's not getting one.
Tom is mostly obsessed with knowing where people are that should be where he is. He always looks to me to confirm his answer or to actually answer for him (which I try hard not to do). And I constantly have to remind him to "look" at the person that his is talking with at the time.
I'm interested in finding out about the medications that you guys are giving
to assist with this. 10 years ago I tried Tom on a couple different drugs,
including Ritalin, but they altered Tom's personality to the worse. Ritalin made
Tom mean or angry. After the third try we gave up and decided we liked him
better the way he was. I know in 10 yrs time, new meds have been discovered. I
would be interested in knowing what meds people are giving their kids and for
what!!
Dianna Garvin (Tom's Mom), Indiana, USA
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If you don't think every day is a good day, just try missing one. ~Cavett Robert |
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Rik |
Rik, Age 8
(Translated from Dutch - badly, I’m afraid. Online translation tools
can only do so much—MCH) His development appeared slowed down. At 3 months, he did not want to lift his head. The pediatrician has sent on us to Nijmegen then. Here a clinical geneticist has been called in then also at the same time, but it took un until age 7 to get a diagnosis. His DNA was sent to France for investigation. From this is appeared that it a deviation on the gene that causes CLS but again differently than with other persons. Rik walked at age 2.5. That was very formal and woodenly. For real long distances, he sit in a wheelchair. Rik fell as small child frequently and had then often bruises on his forehead, but not in that measures as it now lifted. In the fall of 2007 came the real robust valpartijen rise. Rik falls always on his head and then especially at the right side. He has also a time had that he always on its right elbow fell, as often that this totally purse, blue and broken was. This is defense gone over. In the spring of 2008 are the fall walked back but disappeared not whole. In the fall 2008 took she again to. We have also the impression that the falling more awful becomes with hardly again. In the winter of 2008/2009, he is will develop also a typical courses; he set his right bone forward and move hisleft bone then by, with race this sometimes just disappears. We thought first that this a learnt course pattern was from his fear to fall, but now read we on an American site that this run by more children for comes. If Rik walks with someone holding his hand, his walking pattern appears more normal. Rik weras a helmet to protect him. Rik Wears semi-orthopaedic shoes for his flat feet. From various EEG exams it appears that Rik does not have epilepsy, but does have the so-called drop episodes. We now look for medicines for the falling. He is on Depakine. The falling is still present, but Rik does not fall so hard on his forehead. Rik has difficulty with fine motor system, since a few months can he well a puzzle make of 4 and 6 stiff. Rik has a bicycle and a stair tractor to ride. Since last year we have a tandem bicycle for him. Rik is a cheerful boy and is very social. He eagerly makes contact with whomever is on his path. Knowledge good what he well and not will. This is sometimes difficult once in a while. Then he can become angry. Communication is a weak point for Rik. He has oral and verbal dyspraxia. We understand him the best and also his fixed surroundings well, but he speaks flowed absolutely no Dutch. Can hit vague particular senses also very repeat. It appears as if he seeks then town affirmation with someone else. Rik needs complete accompaniment/ help with his daily care. What can must be steered well self only totally. He can feed himself. He goes weekdays to the elementary school with us in the town till the end of this school year. Here he has sat then 4.5 year. This has confesses become Rik then especially the target round other children to let with and its limitations. That they know who he is, what he can and cannot do, and that this not mad, odd or narrow. Rik tires more easily than other children. Rik goes swimming once a week, outside the school. He gets therapies at his school. Rik has one brother Tom, age 7, and a sister Mieke, age 3. The falling is the biggest problem that hinders him. He can through that be not who he want to be. Very boring. Greetings Marco, Mieke, Rik, Tom and Meike van Deursen, Netherlands
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 Rik, Tom and Mieke |
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Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. ~Hubert Humphrey |
The following families and individuals have recently made generous donations to the Coffin-Lowry Syndrome Foundation:
Ron and Maureen Guy, Michigan, USA
R. B. McCord, Missouri, USA
Judith Fried and Robert Scowcroft, California, USA
Tina Duff, Washington, USA
Send your donations to:
Coffin-Lowry Syndrome Foundation
c/o Mary Hoffman
675 Kalmia Pl NW
Issaquah, WA 98027
(U.S. Funds, please)
Donations are tax deductible. EIN 20-3377465
