I have a great list of symptoms that can occur with Behcet's if you would like me to email it to you? It helps a great deal to take it to doctor's offices. Yes, it will always be a constant battle with physicians of all types. Keep fighting them, getting secocnd opinions and listen to your gut. One of the biggest battles for me has always been finding doctors who will help me and try to learn about the disease....to this very day.

I hate to hear someone so young has to go through this. It breaks my heart. My prayers go out to you Sherrypie!

Sherry I should have asked.. what kind of vision problems does he have and how did he finally get his diagnosis of BD?

Sherrypie
I am saddened to hear when a young child has Behcets and even more outraged when the treatment they need can be so difficult to obtain. It is a battle for us adults to get the proper treatment and for a cild it is even harder, as there are certain medicines they should not take.
Deb K (Yahoo Behcets chat site has 2 sons with BD and lives overseas, she has found some real good answers)
Most of all, the medicines used for RA are pretty much used for Behcets. I would like to know it progresses with time. MTX (medicine for RA) can mimick Behcets at times, esp. in a young child.
I want you to know I support you 100%, plus you and your family will be in my prayers.
The Behcets Center is always an option if things get worse and I want you to know I will answer any questions or just listen if you ever want to share or ask anything.
May you be blessed in 2011.

Hi Sherrypie, I am new to this site, but I myself was having problems with BD when I was your sons age, however the doctor's did not give it a name until I was 17. And still, I do not know all that I should know about the disease. Would you mind sharing what you find out? Please know that you and your son are in my prayers. =)

If you don't mind my asking, how old was he when he had his first symptoms and what were his symptoms at first? I was diagnosed with BD in 2008 but I had it when I was pregnant with both kids of mine and my son has been getting mouth sores a lot lately. He's 5 and when I researched it, what I had found said that they could have something like that but the rest of the disease wont really pop up til around the average age of 11. It worries me since I also read it is genetic and boys are more likely to have it than girls.

I'm so sorry that you have to go through this with your son. Right now I'm just worried as to IF my son may have it. I can't imagine how devistated I would be if I found out he actually did. My thoughts are with you and your family

I think it is a good idea to go to the behcet's center at nyu's hosp for joint disease. You can get a lot of your questions answered there.
Good luck to you and your children. This is a tough disease to battle.