new member w/13 yo wg daughter

[Sangye]

I've never known a kid to drop 20 lbs in 2 months just because of puberty. Kids should continue to gain weight at a reasonable pace while growing. If anything, the increased testosterone would cause increased muscle mass and he would gain weight.

Can you describe his pred taper? How much was he on and how did they do the taper?

[Jack]

I tend to agree with Sangye - I associate puberty with growth and perhaps becoming taller and thinner, but not with weight loss. Beware of doctor's throw away diagnosese given out when they should be saying "I don't know". For some reason most of them hate to admit to not knowing the answeres.

[talentx7]

I agree with Sangye and Jack, my drs. were very concerned with my sons weight loss and he only lost 8lbs. Although he was only 80 lbs. But that was 10% of his weight. My oldest son is 12 ( not WG) and going through puberty. He has grown taller, but also but hasn't lost an ounce, if anything put on a few. I would ask more questions.

[JanW]

I would agree with taller and thinner as Jack says. I don't think the docs ever like to see the weight of a child going down unless they are really overweight -- they tend to even want the overweight ones to grow into their weights.

I suspect this doctor may not know if he should be concerned, thinking it's just symptomatic of WG and there's nothing that he can do -- but I think that he should be concerned.

[elephant]

I agree with the above statements, even my doctor was wondering why I was losing weight and wanted to do a bunch of labs.

[jeriorleans]

I'm worried too. He was overweight though... 185 before he got diagnosed, lost about 20 in a couple of months, then the steriods took him up to 205. He is now at 185 again, which is the weight he was at before he got sick. His predisone taper was 60/55 (60 one day, 55 the next)for a week then 60/50 till we got to 60/0 then the 60 was dropped by 5 a week every other day

[Sangye]

What does your gut tell you?

[JanW]

What is his height and how much does he eat? Seeing that he's on the larger side, the 20 lbs may not be quite as alarming...I am envisioning a scenario where food doesn't taste a good (taste perversion) and he doesn't eat as much (I had some of that and know that many others here have as well) and he is growing in height but not in muscle because he isn't active because he has been ill...so maybe he had a lot more fat than the average 13 year old boy but very little muscle. So hard to tell based on a post, though.

I would absolutely say like Sangye that a mom has to go with her gut. I can't even imagine one of my kids having this disease. Stay strong.

[curly]

Talentx7 I am in So Cal and my daughter is being treated at Loma Linda Children's Hospital. We will be attending the VF symposium in Long Beach.

[Theresa]

Curly,
I'm so sorry about your daughter. My 14 year old son was diagnosed on April 1. He is having trouble with subglottic stenosis also. I was wondering how your daughter is doing. Justin has had a balloon dialation on 6/17. He was still doing great a week ago but we were at the ER today and they are doing another one tomorrow. His ENT is going to consult with Dr. Lebovic also. He is thinking that he will have to do the dialation periodically for a while.

Blessings,
Theresa