Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 In a message dated 3/2/02 9:59:27 AM Pacific Standard Time, writes: > I read this in the Medical Issues in Down Syndrome book just the other day. > My guy is little so I haven't noticed it yet, but according to the author > deep tongue grooves are common. > > An online friend of mine, who's on another Down's list, recently had her daughter's tongue shrunk, if you can believe that one! It involves seeing an ENT doctor and they inject something into the tongue while the child is under anesthesia. I think she went back a few wks. later and they redid it....takes two times, if I'm not mistaken. The difference is tremendous! The girl is eating and speaking better and even attempting to eat foods that she couldn't handle before, because her tongue was too large to accomodate chewing. My son's tongue is big too, although I don't think ALL kids with DS' tongues are big......I've read that because of low muscle tone in the face, the tongue may APPEAR to be large.....and yes, the grooves are more pronounced too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 I'm glad they've found a better way to do it. They used to just cut off part of it, at the front I think. A doctor wanted to do that to when he was having tooth problems. No way, !!! Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 Hmm... this sounds like the somnoplasty I'm having done for obstructive sleep apnea. It isn't really an injection of a substance, but sound waves " burn " an area. As it heals up the tissue shrinks & becomes firmer. If this improves eating & speaking for kids with DS I better ask my Doc about it for Heidi. Is there info on any website about this? B GOD BLESS AMERICA ! An online friend of mine, who's on another Down's list, recently had her daughter's tongue shrunk, if you can believe that one! It involves seeing an ENT doctor and they inject something into the tongue while the child is under anesthesia. I think she went back a few wks. later and they redid it....takes two times, if I'm not mistaken. The difference is tremendous! The girl is eating and speaking better and even attempting to eat foods that she couldn't handle before, because her tongue was too large to accomodate chewing. My son's tongue is big too, although I don't think ALL kids with DS' tongues are big......I've read that because of low muscle tone in the face, the tongue may APPEAR to be large.....and yes, the grooves are more pronounced too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 In a message dated 3/3/02 5:37:35 AM Pacific Standard Time, writes: > It isn't really an injection of a substance, but sound waves " burn " an area. > As it heals up the tissue shrinks & becomes firmer. If this improves eating > & speaking for kids with DS I better ask my Doc about it for Heidi. Is > there info on any website about this? > , I believe if you type in " somnoplasty " you'll get a million websites......what I did, since I'm in TX, is put down " Texas Somnoplasty " , or " find a doc " under " somnoplasty " and I got a few doc's in my area that were listed under this, however, I don't know if ALL of them are familiar with the tongue shrinkage procedure. I'm getting on the horn tomorrow and start calling them, one by one, to see who does it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 In a message dated 3/3/02 12:16:40 PM Pacific Standard Time, jcburg@... writes: > Thanks, I have found the somnoplasty site, but I was wondering if there is > info specifically related to DS and somnoplasty. I'll do a search. thanks > again. :-) > You know, I don't think so, as my friend who had it done to her daughter just contacted someone in somnoplasty, and they knew how to do it. Guess we'll just have to call around at all the ENT's in our area and see what they do! I'm thinking this may help with his sleeping too! He snores like a bear, and constantly thrashes around in his bed...sometimes, he ends up the opposite way, or on the floor! Surely, this unrestful sleeping reeks havoc during the day with his ADHD behaviors. I have heard that if you cure the sleep apnea, the behaviors will decrease, as they have a more restful sleep. Adults tend to fall asleep during the day to compensate. Young children, act out by being overtired and cranky! This could only be a good thing, as it will not only help the speech/eating part, but maybe cure the apnea too! What do ya think?? God bless all of us, Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Thanks, I have found the somnoplasty site, but I was wondering if there is info specifically related to DS and somnoplasty. I'll do a search. thanks again. :-) B GOD BLESS AMERICA ! Re: Tongue In a message dated 3/3/02 5:37:35 AM Pacific Standard Time, writes: > It isn't really an injection of a substance, but sound waves " burn " an area. > As it heals up the tissue shrinks & becomes firmer. If this improves eating > & speaking for kids with DS I better ask my Doc about it for Heidi. Is > there info on any website about this? > , I believe if you type in " somnoplasty " you'll get a million websites......what I did, since I'm in TX, is put down " Texas Somnoplasty " , or " find a doc " under " somnoplasty " and I got a few doc's in my area that were listed under this, however, I don't know if ALL of them are familiar with the tongue shrinkage procedure. I'm getting on the horn tomorrow and start calling them, one by one, to see who does it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 In a message dated 3/3/02 4:18:49 PM Central Standard Time, Ltb3105@... writes: > > I have heard that if you cure the sleep apnea, the behaviors will decrease, > > as they have a more restful sleep. Adults tend to fall asleep during the > day > to compensate. Young children, act out by being overtired and cranky! > > This could only be a good thing, as it will not only help the speech/eating > > part, but maybe cure the apnea too! What do ya think?? > > God bless all of us, > Take care, > > > I know nothing about somnoplasty but I would be wonder how much changing > the size of the tongue is actually going to change speech and eating. I > know for my son his biggest problem is the difficulty he has in controlling > his tongue. In other words it doesn't just move food around like most > people's do without having to think about it. > Im tired so my explanation is a bit vague but the idea is that muscle > control and motor planning play a major part in speech and eating so change > in those areas would seem important in making a major change. > Just my 2 cents. > > Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 Is there anything you can do like PT to help strengthen the tongue muscles & help w/ better control of the tongue? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 In a message dated 3/3/02 7:22:23 PM Pacific Standard Time, KVanRyzin writes: > I would be wonder how much changing the size of the tongue is actually going > to change speech and eating. I know for my son his biggest problem is the > difficulty he has in controlling his tongue. In other words it doesn't just > move food around like most people's do without having to think about it. > Im tired so my explanation is a bit vague but the idea is that muscle > control and motor planning play a major part in speech and eating so change > in those areas would seem important in making a major change. > I can understand your hesitation, but believe me, an online friend of mine had it done to her little girl, and the results are unbelievable! The child's mouth is now closed at all times, and her speech is improving daily.....even the grandmother commented on how legibly she speaks over the phone. The eating has improved dramatically too, and the girl is now eating foods she wouldn't have attempted before, because the tongue was too big to allow proper chewing. I'm going for it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 In a message dated 3/4/02 6:21:59 AM Pacific Standard Time, writes: > Is there anything you can do like PT to help strengthen the tongue > muscles & help w/ better control of the tongue? > > > > Nope, because the tongue is so enlarged, it would be an impossible task! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 In a message dated 3/4/02 2:34:31 AM Central Standard Time, rhsikes@... writes: > Is there anything you can do like PT to help strengthen the tongue > muscles & help w/ better control of the tongue? > > When was a year or so old I was told to put a spoonful of peanut > butter on the roof of his mouth and let him work it around. He immediately > took it out and handed it to me, so I didn't think he needed that too > badly, but it might be a good thing for some kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 In a message dated 3/4/02 2:34:51 AM Central Standard Time, rhsikes@... writes: > > Is there anything you can do like PT to help strengthen the tongue > muscles & help w/ better control of the tongue? > > > There are oral motor activities that you can do to help with coordination of the tongue and toning the muscles of the cheeks. We never used it for my son with ds but my non-ds baby had oral motor issues and the exercises really helped. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 You need to visit with a speech path. about this topic. Kaitlyn's speech path has had her working on several things to help her with control of her tongue. It's like exercises for the tongue. Her speech is coming right along. There are also exercises that you can do to increase muscle strength for the facial muscles that are used in speech as well. Darcy Re: Tongue >In a message dated 3/4/02 6:21:59 AM Pacific Standard Time, > writes: > > >> Is there anything you can do like PT to help strengthen the tongue >> muscles & help w/ better control of the tongue? >> >> >> >> Nope, because the tongue is so enlarged, it would be an impossible task! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 There are lots of tongue exercises that can be done to help. There are also facial exercises. Re: Tongue > In a message dated 3/4/02 6:21:59 AM Pacific Standard Time, > writes: > > > > Is there anything you can do like PT to help strengthen the tongue > > muscles & help w/ better control of the tongue? > > > > > > > > Nope, because the tongue is so enlarged, it would be an impossible task! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 In a message dated 3/4/02 10:19:21 AM Pacific Standard Time, melissa.ames@... writes: > There are lots of tongue exercises that can be done to help. There are also > facial exercises. > > > This won't help right now...he is too immature to do anything like that. Why wait when we can help him along the road now? We can shrink the size now, and strengthen the muscles when he's older! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 On Mon, 4 Mar 2002 09:24:29 EST Ltb3105@... writes: > In a message dated 3/4/02 6:21:59 AM Pacific Standard Time, > writes: > > > > Is there anything you can do like PT to help strengthen the tongue > > > muscles & help w/ better control of the tongue? > > Check out Sara Rosenfeld-'s website on oral motor skills http://shop.azstarnet.com/cgi-bin/iti.storefront. She gives lots of stuff you can do. Norma mom to 12 mo. ds and vsd repair 7/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 In a message dated 3/5/02 7:14:52 PM Eastern Standard Time, pbaugher@... writes: << Check out Sara Rosenfeld-'s website on oral motor skills http://shop.azstarnet.com/cgi-bin/iti.storefront. She gives lots of stuff you can do. >> Norma, Thanks so much for sharing this website. I checked it out and found it so interesting. I've already e-mailed it to our speech therapist to get her input. I think we'll take a shot at trying the horns. Have you had any experience with them or know of anyone that has tried them? Thanks again.... Traci Waltz Great Aunt to Gavin (three in April!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 I couldn't open Sara's site, but I also found these exercises: http://www.suite101.com/article.cfm/speech_language_disorders/41710 B GOD BLESS AMERICA ! Check out Sara Rosenfeld-'s website on oral motor skills http://shop.azstarnet.com/cgi-bin/iti.storefront. She gives lots of stuff you can do. Norma mom to 12 mo. ds and vsd repair 7/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 I just found this too. Thanks! I'd never heard of Sara Rosenfeld-. There's a lot of great stuff here to look at: http://www.specialchild.com/archives/ia-051.html I think I'll be reading for a while now! B GOD BLESS AMERICA ! Check out Sara Rosenfeld-'s website on oral motor skills http://shop.azstarnet.com/cgi-bin/iti.storefront. She gives lots of stuff you can do. Norma mom to 12 mo. ds and vsd repair 7/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 What is the best way to teach a kid to drink from a regular cup??? We have really been struggling with this--Mac is getting better, but it can still be messy!! He uses a sippy cup most all of the time--except at the dinner table when I try to get him to drink from a regular cup (a small, 6 oz., clear plastic cup). Sometimes he'll do well, sometimes terrible and sometimes he'll just refuse. Any hint, ideas, suggestions?? He easily drinks from a straw and has been doing that for almost 2 years now. Jill Mom to Mac (almost 4, Ds) and Kit (6 mths., Ds) > > > Sara never used what stores call sippee cups (Tater-tots addicted to them now > :/ ) when she was still on the bottle she would creep up to the coffee table > and snatch hubby's Big Gulp cups (convenience store drinks lol) with Sara it > was drink or drown lol even when a straw was in daddy's drink she would tip > the cup to drink. > > As far as the straw, I learned a little trick that has worked with all of the > kids I keep (baby-sit) I would gently blow in their face with the straw in > their mouth and they would automatically suck in...then wallah they learned > to suck in. Also with Sara I let her play in the bathtub with a cup......no > mess > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 On Tue, 5 Mar 2002 22:35:53 EST GavinsAunt1@... writes: > In a message dated 3/5/02 7:14:52 PM Eastern Standard Time, > pbaugher@... > writes: > > << Check out Sara Rosenfeld-'s website on oral motor skills > > http://shop.azstarnet.com/cgi-bin/iti.storefront. She gives lots of > stuff > you can do. >> > > > Norma, Thanks so much for sharing this website. I checked it out and > found it > so interesting. I've already e-mailed it to our speech therapist to > get her > input. I think we'll take a shot at trying the horns. Have you had > any > experience with them or know of anyone that has tried them? Thanks > again.... > > Traci Waltz Great Aunt to Gavin (three in April!!) Glad you are enjoying it. only turned a year old last week so he isn't into straws and horns much yet. I did get a straw to put into his bottle. That isn't from SRJ tho rather I got it from www.InventiveParent.com. SRJ bottle method worked fine sitting up but my little guy likes to lie down. I think his tongue stays in pretty good till I go to take a picture! And it's no sippy cups for him. A number of mothers on another list are using them. I believe they use them along with a regular speech therapist. The tongue has 8 muscles to develop and why won't they be low tone if the rest of the body is. One lady went to one of her conferences and shared that they showed a video of a little girl that the therapist had told them to push her tongue in when she sticks it out. Which they did 50 to 100 times per day. Well it got so big that at 10 months it didn't fit into her month anymore and she couldn't eat. After being on Sara's straw program for 6 months she was eating normally again. It is also used with lots of different people stroke, cp, ds, etc and of all ages young and old. Someone mentioned they had a problem getting into the site try www.oromotorsp.com or www.talktoolstm.com Glad to be able to help someone Norma mom to ds and his 8 siblings Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 In a message dated 3/6/02 1:07:32 AM Canada Central Standard Time, pbaugher@... writes: > Glad you are enjoying it. > only turned a year old last week so he isn't into straws and > horns much yet. I did get a straw to put into his bottle. That isn't from > SRJ tho rather I got it from www.InventiveParent.com. SRJ bottle method > worked fine sitting up but my little guy likes to lie down. I think his > tongue stays in pretty good till I go to take a picture! And it's no > sippy cups for him. > Hi, (12) went from a bottle to a no spill cup that I bought from a kids catalog, called The Tumbler or something like that (and a few months later was available at toys r us). this used a straw and was completely spill proof ....unless shaken very very hard. (saved lots of cleaning cause she had learned to dump, lol) she used this for 2 or 3 years, but she did also drink out of a reg. glass at times to. that was much more difficult for her then the straw. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 In a message dated 3/6/02 7:14:12 AM Central Standard Time, mom2bridget@... writes: > > > Traci, > > > Discovery Toys had a horn with the same idea (noise > with inhaling or exhaling) when Bridget was about 3. > SHe loved it. She loved making noise. Too bad they > discontinued it. I even told a discovery toys sales > consultant to talk to thme about it, but they said > they rotate off toys from time to time. Glad there is > a place to get one now. This really helped with > blowing. > > > mom to Bridget, 8 ds > > I didn't see the horn you are talking about but we got a set of whistles/horns from an OT catalog a couple years ago and they had an alligator that came out when you blew and went back in when you inhaled. Lots of neat toys out there. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 In a message dated 3/6/2002 7:03:17 AM Central Standard Time, JTesmer799@... writes: > Hi, > (12) went from a bottle to a no spill cup that I bought from a kids > catalog, called The Tumbler or something like that (and a few months later > was available at toys r us). this used a straw and was completely spill > proof ....unless shaken very very hard. (saved lots of cleaning cause she > had learned to dump, lol) she used this for 2 or 3 years, but she did also > drink out of a reg. glass at times to. that was much more difficult for > her > then the straw. > > Joy HI Sara never used what stores call sippee cups (Tater-tots addicted to them now :/ ) when she was still on the bottle she would creep up to the coffee table and snatch hubby's Big Gulp cups (convenience store drinks lol) with Sara it was drink or drown lol even when a straw was in daddy's drink she would tip the cup to drink. As far as the straw, I learned a little trick that has worked with all of the kids I keep (baby-sit) I would gently blow in their face with the straw in their mouth and they would automatically suck in...then wallah they learned to suck in. Also with Sara I let her play in the bathtub with a cup......no mess I was very fortunate when Sara was a tot, I baby-sat an EI teacher's child......I got free advice and services heehee Kathy mom to Sara 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 --- gavinsaunt1@... wrote: > In a message dated 3/5/02 7:14:52 PM Eastern > Standard Time, pbaugher@... > writes: > > I think we'll take a shot at trying the > horns. Have you had any > experience with them or know of anyone that has > tried them? Thanks again.... > > Traci Waltz Great Aunt to Gavin (three in > April!!) > Traci, Discovery Toys had a horn with the same idea (noise with inhaling or exhaling) when Bridget was about 3. SHe loved it. She loved making noise. Too bad they discontinued it. I even told a discovery toys sales consultant to talk to thme about it, but they said they rotate off toys from time to time. Glad there is a place to get one now. This really helped with blowing. mom to Bridget, 8 ds __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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