Diagnosis question

[Vicky982]

Hi there,

My son is 14 months old and I've always been worried his tongue is too large for his mouth. He very rarely seems to close his mouth, and dribbles almost continuously. When he concentrates, his tongue sticks out and he sleeps with his mouth open.

I think he is perhaps a little slow with his speech, but he says a few words, and mimics a lot of sounds, so I'm not worried from that aspect. I have noticed, that he makes the 'hiss' sound for a snake, his tongue seems to be quite low down, but he makes the sound ok.

He is otherwise fit and well, and shows none of the other symptoms of BWS listed.

I'm concerned because my tongue is also too large for my mouth, and gave me a lisp and some dental problems when I was a child. I also had a red forehead as a baby, however like my son, I have had none of the other symptoms listed.

I've taken my son to my GP, and they seemed to know very little (nothing) about BWS, and seemed a little dismissive of my concerns, only that I should come back in a few months if I was still concerned about my son's speech development.

Can anyone offer and advice? It would be of great help.

Vicky

[Songbird63 Administrator BWS Support]

Where do you live Vicky?

In the UK Great Ormond Street Hospital is the national centre for macroglossia in BWS. However there are three other paediatric craniofacial centres across the UK.

If you are really worried you could ask for a referral to one of these to have your son checked out. If your GP won't oblige you can always ask for a private referral. You can still have NHS treatment after this if any is required.

As you say a significantly enlarged tongue causes speech and orthodontic problems and these are improved with early treatment.

[Vicky982 in reply to Songbird63]

I live in Lancing (south east Uk) so will search for nearest centre. I'm just worried about wasting anyone's time as no one medical has ever mentioned it. I have already been seen by a speech therapist for him but she said the advice at the moment is the same for anyone with a child of his age. Until he speaks she cannot help. Thank you for your advice.

[Songbird63 Administrator BWS Support in reply to Vicky982]

For south east England GOSH or Oxford would be your centres.

I suppose it all depends how severe your sons large tongue is.

I would have thought that if it was very large the speech therapist or GP would be concerned.

Generally macroglossia is a tongue that very rarely sits fully inside the mouth, and often causes feeding problems after birth and in infancy, and in severe cases breathing problems too. It also causes effected children to look abnormal until it is reduced surgically.

The tongue can be very large or very wide and a significant percentage of the tongue is removed if surgery is necessary. My son had mild macroglossia but had over one third of his tongue removed at 20 months.

It may be that your sons tongue is just larger than normal but is not classed as macroglossia. Some of the USA BWS websites have pictures of macroglossia that may help you. But if you are still concerned I would ask to see a specialist....either a speech therapist who is familiar with macroglossia or a surgeon.

[Vicky982 in reply to Songbird63]

Thank you

[Obcb1]

Hi, I really had to push docs to get my son tested for BWS, they kept telling me there was nothing wrong with him.my gp or speech therapist had never heard of BWS. He has a large tongue, birth marks and was 10lb 6oz at birth. He wasn't diagnosed until he was 13 months old. My advise would be push for the test don't worry about wasting people's time, if you don't you will alwalys wonder.

[Vicky982 in reply to Obcb1]

Thank you

[AkRosanna]

My sons tongue was like your sons and was the main marker for us, but he also had the hernia, the earlobes, and the red marks on one of his eyes. He had what doctors told me was a mild case and he was not a candidate for tongue surgery which was fine because he eventually grew into it. He had speech therapy from age 3 until age 8, delayed speech, issues with several sounds, especially S, and K, and had to have braces because of his jaw. Now he has a beautiful smile and no discernable issues with his speech. I agree with the previous poster. Don't feel bad about asking them to look into it. I live in Alaska, and not a single health provider here knew anything about BWS until I explained it to them. Good luck!