Tongue Question

[boneill1027]

Hi everyone, my 2 month old was just diagnosed with BWS yesterday. The presence of hemihypertrophy on his right side (arm & leg) and visible stork bites on his forehead and back of his neck led to the genetic testing and diagnosis. My question is regarding his tongue, specifically, the lack of visible macroglossia to this point. He feeds just fine and when resting, his tongue is not visibly protruding from his mouth. I've browsed many of the questions and comments on the forum and read about very scary episodes of respiratory problems caused by enlarged tongue. I realize each case of BWS is different, but are there any red flags or warnings I should be looking for in regard to his tongue? Is this symptom typically present from birth or can it unexpectedly/rapidly grow with age? Thank you for your time and for making this forum available to concerned parents, it's extremely helpful.

[daisyduck BWS Support]

Hi. Very pleased you have found us. Its nice to be able to share stories and information with other parents. My daughter is now 4 and doing very well after a difficult start.

If he is not showing signs of macroglossia at the moment then that is positive. Although it does affect many children, it certainly doesn't affect them all so you may find that it does not develop. However, if you have any concerns about his tongue then make sure they follow it up. You could request a sleep study to ensure that it is not affecting him when he is asleep. Keep an eye out for the signs - snoring, sweating, fidgeting when asleep (although they do become more obvious when they are older)

Where are you based? We are fairly near to London so all our treatment is at GOSH which is very good.

[boneill1027 in reply to daisyduck]

Hi, thank you for the insight and advice. I'm glad to hear that your daughter is doing very well. Like I said, he was only diagnosed yesterday so it's been quite a whirlwind of emotions in the last 24 hours.

We're in the US, NYC specifically, and our local doctors to this point have been helpful even if they haven't seen too many cases of this in their careers. I just want to make sure I keep an eye out for any worsening symptoms, maintain his blood/ultrasound screening schedule, and get whatever other additional testing or medical support I need sooner than later. Again, thank you for the quick reply and providing those helpful details.

[Hidden]

Hello, I was just wondering if your son was premature or a little early. My daughter was 5weeks early and it wasn't until her due date that her tongue started to poke out. That's what lead us to seek a diagnosis. My daughter have been very lucky and although at around 6months her tongue was pretty large she has almost grown back into it. She is now 2 and most people wouldn't realise she has a large tongue form looking at her.

[mayoljosh in reply to Hidden]

do you have photos of her during her infancy? my daughter with BWS who is 7 weeks has a large tongue too. i'm really worried and all.

[boneill1027]

Hi, thanks for your reply and insight. He was only a week early. To this point, I have not noticed any issues with his tongue but obviously will continue to monitor and try to stay ahead of any possible respiratory problems. Hemihypotrophy of his arm is what led us to testing and diagnosis in our case. I hope your daughter is well. Thanks again for your reply.

[beckwith]

hi there with regards to the tongue the macroglossia would be present at birth as with the other markers but sometimes nature decides different as al beckwith babies/children r all individuals.........my daughter had it severe and her tongue was growing at the same rate as the rest of her body ....we was told it grows at a slower rate so that as she grew it would gradually fit into her mouth ....age 11 months she had a tongue reduction due to the severe breathing problems her tongue was causing , her sats was at 82 percent...as for the hemi my daughter had no sign of it untill she was 6 weeks old it just seemed to suddenly happen.....her face is unaffected but from her neck/shoulder to her feet was.but look positive as bws children do grow out of it sometimes with the help of a few operations x

[Bond]

Hi there, glad you found the group. Our daughter (Helene) is 19 months and has had an enlarged tongue since birth. At the moment, we're in the early stages of considering whether or not she should have tongue reduction surgery. No problems, thus far, with her speech development - in fact, quite the opposite (she's ahead of the game when it come to "chatting" despite the fact that she is having to contend with both Norwegian and English). She does however, tend to walk around with her tongue hanging out, which, besides making her look retarded (and therefore a potential target for bullies when she starts "big school.") could be quite dangerous should she take a tumble and bite down on it. As for breathing difficulties, the only problems we have thus far encountered are during sleep. We are not sure what's going on (whether or not the tongue is slipping towards the back of her throat) but she will wake almost every night in a coughing and/or (mild) choking fit. This, of course, is very worrying for mum and me, but Helene always seems to sort out the problem for herself. Instinctively, we always wake up when the coughing starts, but have now learned to passively observe what's going on from a distance. Helene seems to be far less distressed than mum or I as this is; after all, just normal everyday living for her. During the daytime, we are able to gently remind her with the words, "tongue in" and (when she was much younger) gently popping it back in her mouth for her whenever it protudes too much and she almost always pops it back into her mouth. These days, we don't need to manually assist her as she now knows what "tongue in" means. Not so sure whether she'll still want to do what mum and dad ask her to do when she hits "the terrible two's" - we'll just have to wait and see.

For us, the key to "dealing" with this aspect of BWS is to treat it as part of our child's normal development (insofar as one is able to view this condition as "normal") and not to panic. Helene would pick up on this if we did and we believe that this would only compound the proiblem. We try not to make an issue of it.

Verbally encouraging our child to keep her tongue in her mouth during the daytime also helps us - and allows Helene to develope the skills necessary in mastering language in spite of this impediment.

Whilst she's sleeping of course, the tongue will just fall into whatever position feels most comfortable to the child - nothing to be done about that.

All we are able to do, is keep an ear open for the coughing fits - and tend only to "interfere" if Helene begins to sound more distressed than usual. She has developed her own techniques for overcoming these (almost) nightly interuptions and we believe this is the best way forward for the time being. Of course, the younger your child is, the more worrying this can be for mum and dad. Please note, what is written here, is the technique that best works for us. Obviously, all babies/children are different and you need to do whatever feels best for you and your child. But I feel the over-riding key to dealing with this is to stay calm and to treat it as just a normal part of your child's daily routine.

Best regards,

Anthony

[mayoljosh in reply to Bond]

hi! thanks for sharing your story. my 2-month old baby has macroglossia too; i think my baby has almost the same case with that of yours. i just wanna ask: how is helene now? did she had tongue reduction or has she managed to grow into her tongue?.. thanks.