Hi, does anyone have any experience of young children with Behcet's?

[J3nny]

[stormie]

Hi

I was 3 when my mouth ulcers started. I survived on bonjela - well actually it is rubbish!

When I was about 11 they prescribed Betnesol - very good mouth wash that helped control them.

Stormie x

[J3nny in reply to stormie]

Hi, thank you for replying. My son is nearly 6, he had his first "attack" when he was a week and a half old, 40' fevers covered in a rash. He has been seeing consultants and having tests since then. Behcet's was mentioned at his last consultant meeting and now we're waiting for Great Ormond St appointments. Having read up, it doesn't seem typical of Behcets to start so young? Just grasping at straws I guess as I'm hoping it's not Behcets. Sorry to hear about your ulcers but glad to hear you now have something that helps. Jen. x

[pinkclara]

Hi, my daughter was diagnosed with Behcets last year. Although she us now 15, we have seen random symptoms since she was age 3 - joint swelling/pain.; Drs always insisted she must have injured herself even though she always insisted she hadn't. When she was 8 she wa was unable to weight bear through her left ankle for 6 months and gave up dancing because of this (again Drs insisted it was a sports injury). At 10 she developed high fevers and random ulcerations almost every month, with Drs telling us she had repeated viral illnesses! She was finally diagnosed last year as her genital and skin ulcerations were so severeshe was admitted to hospital, needing iv fluids and a catheter as she was in urinary retention. It's been a long and exhausting journey to her diagnosis and she has been in a constant flare for six months now, but we have a fantastic team of Drs within our nearest teaching hospital and without their constant support I don't know what we would have done. If I can be of any help to you in answering any questions, please feel free, I hope you get the support you need with your little one

Clara xxxx

[J3nny in reply to pinkclara]

Hi, thank you for your reply. I'm sorry to hear about your daughter, I really hope her latest flare settles down soon. My son has had recurrent fever with rashes since he was a couple of weeks old, up until recently he never had any joint pain. A couple of months ago he got 3 very sore patches on his scrotum that took weeks to heal and even now haven't gone completely. We also had a trip to the zoo where after 15mins of walking he was in so much pain with his feet he couldn't stand and we had to hire a wheelchair for the rest of the day,he didn't feel at all ill then,just pain. He also gets ulcers in his throat with the fevers now. It's not his ankles but the soles and tops of his feet that hurt. Does this sound like it could be Behcet's to you? Sorry for putting you on the spot with a question like that but it's hard when you read up on symptoms to know whether they fit the pattern or not. It didn't didn't seem that people start getting symptoms as young as my son did with Behcets. Maybe i should stop tying myself in knots and just wait for all the tests to be done! Thanks again. Jen.xx

[Michja]

Hi J3nny, my daughter started with symptoms as a 5 year old, now 10 she is on a bag of medicines, 2 different eye drops, mixtures to help her poo & latest, Infliximab. All I can say is good luck & remember a wonderful specialist is like a guardian angle. Xx