Not sure where to put this, so I guess it can fall under here. My son is 10 (almost 11) and has always had his tongue hang out of his mouth since he was really little. In fact, we stayed in the hospital after birth an extra day because he couldn't suck right, I now think it was his tongue. Anyway, I have a friend whose son is around the same age, DMD and apparently his tongue has lost most muscle tone and swallowing has become increasingly difficult and is facing a feeding tube sooner than expected. My question is this, my son also has this protruding tongue and I never thought of it getting worse as to soon he will not be able to use it to help swallow food. I don't know why, but this never occurred to me. Should I be worried, is this common? Articulation is an issue with his speech, ST has tried to strenghten it by doing excercises, but we have given up, no improvements....anyway, I would be interested in knowing if others are dealing with this...

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Kristi,
I know this can be an issue for some boys with DMD and when I asked Dr. Wong about it she told me yes this can happen. I have personally seen some older DMD boys with very large protruding tongues. It scares me as well. My son does not have a large tongue that protrudes but he chews with his mouth open all the time, something he didn't do a couple years ago. He says he can't help it and I have to wonder if it's from losing muscle in his tongue & jaws.
Hi Kristi,
When at conference this summer 3 of the older 'boys' (20 y/o or more) were comparing their tongues! They were all talking about the duchenne tongue! I had never heard of it, but it is a real thing! I don't know if it is for every boy...but I know that these 3 had it!
Lori
Welll thanks all. I'll go through my photo's tonight and see if i can find one so you get a " visual" of this tongue thing. But really, it scares me since this other little friend ours is having soo much trouble.
My son doesnt have a large tongue, but I know boys who do. Its part of the whole dmd for some kids. Justin eats more with his mouth open now and i think its because of his jaw muscles. Justin has large temple muscles on his head and thats because of the deterioration of those muscles. Its not a common thing either!

--Samantha
I have never heard of this. Great question and hopefully someone will have some answers. The only problem with my son's tongue and his articulation is he uses it like a sword in his verbal arguments and judging of everyone else's behavior! Honey if careers were calling he would be up there with a black robe on and a gavel!
My son, age 7, has the large tongue that hangs out a bit. He had significant speech problems at 2-3yrs old. Speech therapists noted that he could not lick pudding off the corners of his mouth due to lack of tongue strength/coordination . He also was a drooler from infancy-3. Prednisone (and now delazacort) helped significantly with both his tongue and mouth tone and articulation. The speech therapist commented on dramatic increased mouth/tongue tone and articulation within first two months of steroid treatment (without knowing that we started on any drugs, at age 3.5.). He also stopped drooling. Hos speech is great now ( a few little articulation issues, but he is a motor mouth). I spoke with a mother of an older boy (now in high school) and she said that she was able to get her son to keep his tongue from hanging out of his mouth by constant reminding, ultimatley creating a habit of remembering. I dont know how bad his tongue was or nor have i met him, though i understand that he is quite independent now (in a powerchair, but no feeding tube or anything like that..has a girlfriend). I dont know if all boys with the tongue problem have more significant feeding issues down the line, but I have worried about it too. I do know that the DMD dogs have great tongue involvement in the the disease and that the affects on swallowing in that species are significant.
Carrie
Hello Kristi, It is true that many of the boys let their tongue hang out. It is important to remind them to keep their tongue inside their mouth. The tongue is a muscle and can become very enlarged, interfering with speech and breathing. This is common on our boys and needs to be addressed early on.
I have additional information about this on my office computer. I'll post it tomorrow.
Warm regards,
Pat
Elizabeth Vroom, (orthodontist, mother of a youngman with dmd) said -I do have the article mentioned in the ppt's about dental development in dmd. In an australian article (Dental characteristics of patients with Duchenne Muscular Dystrophy Symons A.L., Townsend G.C., Hughes T.E. Journal of dentistry for Children 2002
they suggest (and I am sure this is correct) that mouth breathing make things worse. I myself believe you should start at a young age to train them to hold there tongue more retruded. One of the tricks is to let them click (like you do when you are horseback riding) with their tongue as soon as you see them with their tongue hanging out. Both is NOT evidence based! No "trials" so far.
Ryan will post Elizabeth's ppt. in the next day or so.
Warm regards,
Pat
Thanks Pat! I have done the " clicking" thing with him a few years ago. His ST started this with him, he has gotten out of habit and to be honest, we had just accepted that his tongue would hang out...well, that is til our little friend is having some major issues and I can see it as our problem later....I will begin the regimen again of making him " click"

Pat Furlong said:
Elizabeth Vroom, (orthodontist, mother of a youngman with dmd) said -I do have the article mentioned in the ppt's about dental development in dmd. In an australian article (Dental characteristics of patients with Duchenne Muscular Dystrophy Symons A.L., Townsend G.C., Hughes T.E. Journal of dentistry for Children 2002
they suggest (and I am sure this is correct) that mouth breathing make things worse. I myself believe you should start at a young age to train them to hold there tongue more retruded. One of the tricks is to let them click (like you do when you are horseback riding) with their tongue as soon as you see them with their tongue hanging out. Both is NOT evidence based! No "trials" so far.
Ryan will post Elizabeth's ppt. in the next day or so.
Warm regards,
Pat

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