Beckwith weidemann syndrome

[jools1234]

Hi i have 2 grown men in there late twenties with BWS who have had various health problems in there liftime and to this day my youngest who is 28 still has health issues. I will try and answer any question you new parents have. Its been a struggle for us as a family to get answers. Untill we were asked to go to Southampton geneticS 3 year ago to where we eventually got the answers.

[rahalove]

Hi Dear. Thank you for your post. Did your sons have any tongue surgery? Did they have their health issues from the first or they began after a while?

My nine month old baby is healthy now and the only problem at the moment is a bit bigger tongue that we are considering for tongue reduction surgery but we are not sure!

Please help me based on your experience.

Thanks.

[jools123 in reply to rahalove]

They both had tongue reduction one at 5 and the other at 3 Years of age They were fine after surgery. Id say the only thing is they have abit of a lisp still. Also the youngests tongue when looked into after surgery had no taste buds on the bit they removed. There health problems have been since birth And for the youngest still ongoing.

[rahalove in reply to jools123]

Thank you so much for your reply. I hope your sons will have the healthy and happy days from now with their family.

Wish the best☺

[--PO-- in reply to jools123]

jools123, what type of health issues are they still having?

[JareBear in reply to rahalove]

My son is 17 we never had the tongue reduction surgery because I felt it was too invasive and the healing time seemed so painful and long. I did not even know he had BWS until he was 13 but he had an enormous tongue and I had the option of reducing it. His only problems have been initial breastfeeding difficulty, his front baby teeth never came but his adult teeth are fine and speech was difficult. He did speech therapy and talks very well. He was still shy about talking so at 15 he decided to join cheerleading which was quite funny to see a 6 ft 10 cheerleader but it helped him become confident and comfortable with talking

[jools123]

My youngest has had and still needs operations on his left foot which is the smallest side of his body as he has hemi. The last op was to fuse the bones together to prevent arthritis setting in any earlier. My eldest is currently have scans on kidneys for stones or cysts as he has always had urine infections from early years. They both have problems with bones to constant clicking and aching Back problems because of height.They are both over 6ft 10 and we were told would cause arthritis. They dont let things phase them but as there mam its a constant worry.