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My fiancee's grandson has been diagnosed with Bardet-Biedl Syndrome. Apparently, this is a very rare disease and I was wondering if anyone has heard of it or knows anything about it. Obesity is one of the characteristics of it and the doctors have told the parents that if they don't get his weight down, he will pass away, but have offered no suggestions about an appropriate diet, where to go for information or any help with this problem. He will be 3 years old in Jan. He is such a sweet little guy and we are really terribly concerned, but can't seem to get much help with this. Anyone know what can be done?
Hi, my son was diagnosed with BBS at 10 months old. He will be 2 in April this year.
I would suggest you have your fiancees grandson seen by a dietician if you are worried about his weight, my son is on the larger side but lately his weight has steadied. I was told he was obese when he was only 6 months old! I laughed at the doctor because I thought it was quite normal for babies to be chubby. I try to get him to eat as healthy as possible but it doesn't always seem to work.
If you want any more information, just reply as I am more than happy to tell you my son's story. I also found it hard to deal with the diagnosis, because as you said it's a very rare condition and there isn't a great deal of information out there.
A long time ago a doctor told my husband one to loose weight remember this..Lean, Green, Boiled or broiled! He lost a lot of weight following that.
But they need to see a dietician if they are confused as to what to feed him, the doctor should have set up and appointment with one or at least asked if they wanted to see one.
My suggestion is to limit carb intake, if I eat a lot of carbs one day, the next day I stay hungry all day. NO deep fried food, no processed foods, lots of fruits, vegetables, beans. Start reading lables, even on juices.. (juice has lots of sugar.)
Limit red meat, healthier snacks (fruits instead of junk food). Just start reading lables and counting sugar, carbs and fat.
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