Hello everyone, I looking to find Parents of children with Bechets Disease, my beautiful daughter SarahRuth was diagnosed at 14 months old she’s now 10 and things are getting a little bit better but doctors haven’t given us a lot of hope, just wondering what other parents are hearing, doing etc. Doctors don’t seem to have a lot of protocols for treatment, I know the condition differs from person to person and can be quite different for childhood onset vs in adults. We have found several things we can do environmentally that help her and a special shake that helps with her intestinal involvement as well as a multi vitamin that actually absorbs and helps with her general discomfort and energy. But would LOVE to talk to some other parents and make exchange information etc. TIA
Looking for Parents of Children with Childhood... - Behçet's UK
Looking for Parents of Children with Childhood onset Bechets Disease
Hi SarahRuthNMommy I am so sorry to hear about your daughter. I have Bechets but I suspect my teenage son has it too. He has frequent ulcers and all symtoms so far falls into the same category as mine at the onset, however he has not been affected by the majority of exhaustion as I have been. I hope you find the right treatment for her ASAP
SarahRuth is a beautiful name! I’m surprised she got such an early diagnosis. I believe that I had it as a child. Wasn’t diagnosed until age 40. I am now finding out that I have a genetic enzyme mutation which prevents me from digesting folic acid, MTHFR. So diet is becoming a big thing for me; nothing with folic acid added; taking Folate supplementS Which have the enzyme in it. Ask to be tested for MTHFR.
Exercise best remedy if able👍
My niece was diagnosed with neuro Behçet’s, she is only 5 years old, does anyone have experience with children? She had seizures and fever
child aged 11 
REPORT ON FIRST INFUSION OF REMICADE (100mg INFUSION). HERE IS WHAT IT WAS LIKE.
