BWS for 26 years...adult life?

[beck_m]

I was born with BWS and am 26yr old now. I have severe IBS and wondering if anyone has any stomach issues like that? I also want to know if there are any other defects that can affect female adults with BWS?

[beckwith]

hi my daughter now age 17 1/2 yrs had a tr at ormand street age 11 months. she had an 1" wedge cut off but tongue was still very very thick , the cranio and maxlio team have now agreed to do another tr to try and reduce the thickness and also take a little off her chin at the same time , if the tr is not done she would not be able to have the final operation of re alining her jaw as they cannot do this without the tr if they did there would not b enough room in her mouth to acommoate her tongue...don't let them fob u off x

[momandjeff in reply to beckwith]

My son went through the exact same thing. He had a tr at 3months old. The doctor wanted to take more of the thickness but could'nt due to a large blood vessel under the tongue. When my son reached 21 he had another tr to remove as much of the thickness that he could. He made a Y incision &swashbuckling able to remove ALOT of muscle thickness. It really made a difference. Two months later he had jaw reconstruction. They actually had his jaw apart & pushed the lower jaw back & the upper jaw forward (he had quite an underbite that would've caused jaw bone issues & also headaches &tooth problems). His jaw was wired shut for 6weeks. Lots of eating liquids through straws. After 6 weeks some of the wires were cut then we could feed him soft pasta, mushy Mac & cheese. Just lots of spaghetti jello & soup along with nutrition drinks. He had lost 35 pounds. When he went into surgery he weighed 235 lbs. These two surgeries really made a big difference in his life. He did go through a depression stage. It was due to the steroid medications he was taking to keep swelling down. He had all this done during spring break from college. His college buddies were really supportive as was his family. After the jaw reconstruction, he looked so different. His lower jaw lined up beautifully. It made a difference in how he felt about himself. His doctors to me were his angels.

[Songbird63 Administrator BWS Support]

We are aware that some children have some gastro problems particularly constipation due to to lax abdominal muscles, but this often improves as they get older. IBS is a very common condition so may not be due to your BWS.

We don't have that much info on BSW problems in adulthood although their has been some mention of kidney problems such as medullary sponge kidney but often the individuals have had this problem in childhood too. Most problems with BWS are usually resolved in childhood. Some people with severe hemihypertrophy do continue to have orthopaedic problems sometimes and those who have exomphalos as a baby will also sometimes have issues as a result of this going into adulthood.