Does anyone have a child with a very large tongue?(25 Posts)
Ds2 is 2.7. He was born with a very large tongue. It stuck out for most of his first two years. He is able to put his tongue into his mouth now and I have become so used to it that I don't really notice how much it sticks out any more. He always sleeps with it stuck out. He has been checked over by a paediatrician who reported that he has no other abnormally large organs and I have no concerns in this regard. He is a normal, happy little boy.
But he still has a very large tongue and this does cause him some problems.
He has speech delay, I think because he struggles with pronunciation. We have had Hannan classes and he is progressing but its very slow. He tries very hard to talk we just struggle to understand him.
He gets a lot of colds and always seems to have a cough. I know that it is normal for toddlers to catch every bug going and its not really a huge problem but he gets ulcers and sores all over his tongue when he has a bug and these are obviously causing him discomfort. His tongue does not swell up or become red in general (accept for the little sores).
I think that this is quite an unusual condition and I have no one with experience of it to talk to about this. If you have a similar child did they grow into their tongue (so to speak). Most people just reassure me that he will grow into it but they don't actually know because they have never seen another similar child.
Hiya, i saw the little boy on embarrassing bodies with a similar problem.
Have no idea why it was embarrassing
They referred him to GOSH as the local hospitals had no idea how to help.
Hope the link helps
I saw that episode too but its not the same as my DS, his tongue isn't swollen or infected, its just large. He does have sores on it but they are more like multiple little mouths ulcers than the boy on the show who seemed to have a generally swollen and red tongue.
The Other problem my DS has is dribble - his chin is always sore because of it and its really red and chapped at the moment.
Has your child had a chromosome check and blood tests to rule out genetic disorders and thyroid difficulties? If not then I'd be insisting these were done and also be asking for a referral to GOSH for an assessment to see if a surgical reduction would be beneficial.
No we haven't had any chromosome or blood checks. I'm sure that he does not have Downs or any other syndrome, I'm aware that thyroid problems can cause a large tongue but he really has no other signs or symptoms. What does GOSH stand for?
I'm not really interested in surgical reductions for him at this age, its such a delicate and important organ for him, he can make choices like that when he is old enough.
I know its odd but it really is that he just has a large tongue and I was hoping that there is someone else with experience of this?
My cousin has one, though he has Downs Syndrome. GOSH is Great Ormond Street Hospital, it's a specialist children's hospital. They are very helpful and may have some idea of what to do.
If you don't want an op, I would stick with speech therapy and also I would take him to the docs over the ulscers, they are so painful and do make it hard to eat/drink.
Thanks, I'm not good with initials.
I think your right I should take him to the Doc with the ulcers, though they don't stop him eating and drinking, but I have taken him there so often for various things, including mouth ulcers, and their only suggestion is more amoxycillin
Please understand that I'm not overly concerned by DS, he is normal in nearly everyway. I was just hoping to have someone else to talk to about it. And perhaps a little reassurance that he will grow out of it/into it
Presumably he gets mouth ulcers becuase he is continually biting it? No experience, but why don't you want a surgical reduction - seems it might be best all round?
The only other thing I can think of it a retainer - it would cover his molar teeth so biting wouldn't be so hard on the tongue, and his tongue would naturally 'fiddle' with it which would improve the tongue muscle.
I think he get the ulcers because he sticks it out a lot.
The tongue has millions of nerve endings and taste buds that are essential for taste and feel. I cannot see how a reduction could be performed without damaging this delicate structure.
I have uploaded some photos of him, I'm afraid that I often don't save the ones where his tongue is very stuck out
He does bite his tongue but not as often as you might think
That makes sense. I would tell your GP you want to push this and find out how to prevent ulcers rather than just treat them with amoxicillin. It is annoying how much we have to push docs to look into things. You're right the ulcers could be to do with it drying out as it's stuck out. Also a doc might be able to give you more info, or hand you over to someone who has experience. It doesn't sound like you've been given much info on either the condition or the op or alternative treatment.
I understand you're not overly worried but as you say learning more about it might reassure you PS. I understand about the abbreviations stuff lol I only know GOSH because my sister, best friend and primary school friend all had unusual/serious health conditions and were treated there.
A large tongue (macroglossia) is often seen as a marker for chromosome abnormalities and would have expected a referral to a paed at least and a full chromosome check. It can't be pleasant for your ds to have sores and ulcers and chapped skin and I'd be concerned that it would draw unpleasant attention from his peers once school age.
As insanityscratching says, an oversized tongue is a "marker" for chromosome abnormalities (either extra bits or missing bits), and while you don't have concerns at the moment, I think it's really important that a chromosome check is done - your DS may have a subtle chromosome problem which needs treatment now, or in the future to avoid causing him problems.
The ulcers are likely to be caused by his tongue rubbing on his teeth - if you don't want to damage his tongue, the other option is to remove his teeth! This is what they often used to do to children with Down's Syndrome and other conditions - before they developed the tongue reduction operation. Your DS may NEED the operation to develop good speech, though I understand what you are saying about tastebuds etc, these are already being damaged in the area of the tongue which is constantly rubbing on his teeth anyway!
I think the tongue will grow with him, it won't become "normal size" without treatment.
If he were my DS, I would be pushing for a full chromosome and genetic screen to find out if he has an issue which need treatment or anything else we needed to be aware of, and I'd be researching the pros and cons of a reduction op in relation to his comfort and language development.
The Paed seemed to think that he is normal in every way except his tongue, I guess that the policy was just to wait and see. I think that he is normal in every way except his tongue and am inclined to wait and see too.
For as long as DS is coping and eating, drinking and breathing normally surgery is just not an option for us. The ulcers and chapping are intermittent and as far as I can see he does tuck his tongue behind his teeth more often as he gets older.
He may face some problems from his peers in school but he is an amazingly friendly, happy, gentle and gregarious child so I don't think it will be a serious problem for long.
I agree that his tongue is likely to grow with him, and have always found the general reassurance that he will "grow into it" a bit
I would still want a chromosome check and genetic screen purely for reassurance tbh. Whilst you may feel reassured that ds is normal without a check you cannot be certain that he doesn't have an underlying disorder that could have potentially serious consequences for ds and any other children you may choose to have at a later date. It would initially be a vial of blood, nothing too invasive and I would think worth it for peace of mind don't you?
i agree, and would also be chasing up a chromosomal check.
there is no way you could know 100% that it is just a large tongue, and it would be worth having the testing simply to rule anything else out wouldn't it?
Dd1 was born with a v large tongue. she was born in Germany and they whisked her away immediately to check her because of the size of it. It was a bit surreal. She also had a sacral dimple, and they took her off again later to check that out as well.
She's 12 now, and whilst her tongue is still noticeably bigger than everyone else's, she can keep it in her mouth (I suspect her orthodontic work helps with this lol) and it really hasn't been an issue for years. She is entirely nt in every way, on the gifted programme, and a competitive dancer. Sometimes a large tongue is just a large tongue. if you didn't know, and she didn't poke it out at you, you would not guess.
OK, perhaps you are right. I will talk it over with DH later.
Thanks for all the advice
Ds's isn't exactly large, but it is long. He can stick it right up his nose.
Agree with madwoman - sometimes kids just have a large tongue!! DS has a large tongue and the only way it affects him is that he drinks funny - sort of tucks it outside and under the cup and certain speech sounds/words have been difficult for him to pronounce. That and his party trick of putting it up his nostrils!! I've never heard of it being a marker for anything but I guess it depends on how large it is.
survivingspring my DS drinks like that too and he can stick it up his nose and he looks really funny when he chases food around his face with his tongue! he's too young for party tricks yet though
Madmum thanks for giving me your story it is a huge relief to here from someone with experience of it. DS has a sacral dimple but then so does DH so I took that without comment. I'm fairly convinced that he just has a big tongue DH is too so we think we will wait and see.
If we do have any reason for more serious concerns we will seek a chromosomal test.
My DS is speech delayed due to a diagnosed neurological issue, so it is not the same as your DS. However he sees 2 different speech therapists twice a week and has done for almost a year. He is 2 years and 4 months and about 6 months delayed in his speech (but he's progressing, which is great news and we are hoping he will catch up).
Anyway, his tongue seems a little large, but not abnormally so. I've been told it seems this way because he has low muscle tone. He has a mid-line dribble. The dribble isn't actually too bad and doesn't make him sore, fortunately, but we are told that it is due to low-muscle tone which can be very common in all children (not just those with neurological issues) and with exercise it can get better. Exercises we've been given:
1. Getting him to blow bubbles
2. Blowing cotton wool balls
3. Kissing a stick
4. Nuk brush massage
5. Electric toothbrush on the inside and outside of his mouth to stimulate the nerves
6. Massage along the jaw-line from the ear to the chin and from chin up to mouth (probably best to google to make sure you have the technique correct).
7. Only allow drinks through a straw.
My son also has loads of colds as well. We've just been referred to an ENT as recurrent colds and a speech delay could be a signal of a problem with his adenoids. Apparently a quick check with the ENT Dr can rule that out.
Hope this is helpful.
Dd1 dribbled a lot as a toddler and we were told she had a large tongue, she was an early talker but had a lisp a bit like Jamie Oliver. Whilst as her parents we notice her tongue was large it wasn't noticeable to other people so I suspect hers isn't as large as your Ds's. She is 12 now, her speech is fine, she doesn't talk like Jamie Oliver any more and although she dribbled for a long time it wasn't an issue by the time she started school.
Ds has an overlarge tongue and low muscle tone. He is seeing a geneticist tomorrow.
It might be an idea to pursue some chromosomal testing, your ds may be on the very mild end, but it would be important for him to know.
Upsidewide, I hope you don't mind, I have messaged you about the exercises you have put in your post - I feel ds needs a lot more input from his SALT than he is getting, and had some questions for you.
My daughter was born with large tongue too. She is healthy and very clever. She is 3y old now. But her tongue is large still now. What news have you now? What did you do with child's tongue?
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