my 8 year old son in hospital now.

[Sangye]

I didn't know that they were required to specialize in pediatrics, too. It must be awful not being able to take your son to a Wegs doc.

[pberggren1]

That sounds ridiculous to me!

[jola57]

Because of their developing bodies children are different from adults and so we have pediatiritians to treat our kids. Same goes for other disciplines in medicine. However your ped rheumy can alway talk to a wegs specialist to coordinate his treatment. Talk it over with the rheumy, tell him that just because it is such a rare disease and has such dire consequences you would like him/her to cordinate with a wgs specialist.

[elephant]

I agree with Jolanta, I think you should cordinate with a WG specialist. I was 12 years old ( now 44) when I started to have symtoms of WG....misdiagnosed, I was diagnosed 2008! So I have alot of damage.

[JanW]

I'm not surprised that they are required to have a pediatric specialty as well. Children aren't little adults and because so much of rheumatology deals with drug therapy and autoimmune issues you could imagine that the doc would have to be very familiar with pediatric physiology.

[talentx7]

This disease has me so confussed!!! It varies so much from person to person, now throw in a child and what happens?? I wonder if there is more children out there that are misdiagnoised? I should be very thankful that Carter is diagnoised, hopefully without to much damage.

[JanW]

Probably so. Because my condition is so rare in the African-American population (and I am black) I think I could have been misdiagnosed if my nose hadn't collasped (because there are very few medical conditions where that happens but WG is one).

[talentx7]

Hi jan, What is this Saddle Nose i am reading about. I never seen any info on it? Is it common? Can you prevent it?

[JanW]

It's when the bridge of your nose starts collasping. Mine starting with just a nump on the nose (the cartilage started receding) and then collasped over a period of a few months. No pain, and nothing that I could do about it stopping it or preventing it because it doesn't really track the severity of the disease (I'm not so sick otherwise, but do have a deformed nose). It's not horrible, but I'm as vain as the next person and have always been considered good looking, so it does bother me a little.

[katarzena]

I've been diagnosed almost half a year ago and have been put on chemotherapy too. I am going to school regulary (I'm 17), have been out for few months but everything is okay mow, If you try hard there should be no big problem with school. If you're worried about chemotherapy ( I get IV every 4 weeks so I speak from my own experience) there's no reason too, most people don't have major side effects (we get a much lower dose of chemo then cancer patients) so don't worry about that too. I have a minor hair loss but nothing to worry about. No other side effects
Speaking of steroids, he will get some side effects such as; moon face, big belly, maybe hot flashes, leg cramps.. I highly recommend you to watch his diet, less salt intake. People on steroids have a huge apetite (I had it too on higher doses) and some gain a lot of weight. I gained none. The side effects decrease when tapering down..
I live a compeltely normal life, except that I'm in hospital every month for (currently) chemo and blood works. I got used to it.
Good luck with your son! I wish him all the best