Does anyone have a BWS child that has successfully learned to communicate after tongue reduction surgery?

[nancyc]

My son Myles will be 3 next month. He has BWS and had tongue reduction surgery when he was 20 months old. He has always been a bit behind his peers, but he was premature and a big boy. We live in Texas and he has had Early Childhood Intervention since he was 6 months old. They do not think he has anything else that would cause delays like being on the autism spectrum. I am wondering if there are any parents out there with young children (4-6 yrs.) that have BWS. Did they go through tongue reduction surgery? How long did it take them to talk? My little one still struggles to say Ma-Ma and Da-Da. He is smart...totally knows what you are talking about, but has difficulty communicating back to us.

[Songbird63 Administrator BWS Support]

My son has BWS and had TRS at 20 months at GOSH in UK. He was babbling before the op but his speech developed rapidly after the op, within a few months he was using individual words quite distinctly and within about 6 months he was starting to talk in sentences.

Have you had any input from a SALT specialist with your early years intervention? If not I would ask for a referral. There may be nothing wrong but early intervention is best if he does have any other issues that are affecting his speech.

[andrew95]

Hi, i don't have any Child i Was the BWS child and i had tongue reduction surgery at four,so i learnt to speak before the surgery, i couldnt speak very Good so my parents took me to a logopeda ( i am spanish you can translate the Word in Google) a psicologist That teach how to pronunciate, and now i speak well ( i am 19) and i am studying medicine at the university without any problem

Good luck with your child,

Andrés

[daisyduck BWS Support]

My daughters tongue was very big. She has had 3 tongue reductions. First one at 6 months, then 23 months, the 47 months. She is now almost 6 and does not stop talking! Most of the time, you would not know she ever had a problem. Her tongue is still quite thick and she will need jaw surgery but her speech is great. We have seen a speech therapist since she was born and the improvement is amazing! Hang in there, there is hope! Do you see a speech therapist?

[AlunHughes]

Hi, I have BWS and had tongue reduction surgery when I was about 9yrs old. It took a while for the swelling to reduce about 3months and then a period of about 1yr of monthly speech therapy & practice. my speech is normal, same as anyone else. Best Wishes Alun Hughes

[khmotalab]

dear all

any measures that I can do to know weather I need to travel to US or UK with my child who was diagnosed as BWS and his tongue is large? all doctors here are not giving me answer on this and they are asking me to wait after he will be 6 months. that is too much for me to know

[nancyc]

Thank you everyone for your support. Just an update. Myles started PPCD in May. We also put him in a daycare. Although he is well loved by all of his teachers (they say he is the sweetest kid at school) he is still struggling with speech. He wants to talk and communicate, but cannot put the sounds together to make the words. He is making gradual process though, so I am very hopeful.