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Behçet's UK
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My daughter was diagnosed at 10 years old she is now 14, need advice please

Hello everyone I am looking for some advice. My daughter was diagnosed with bechets disease at 10 years old she has a variety of symptoms that we've tried to treat with many medications. 2 years ago she ended up with the flu and a 13 years old she was 63 lb, she had lost 15% of her body weight in 9 days are stomach it already been bad but with the flu it created complications. These complications let us to stop a lot of her medications realizing that caused ulcers in her stomach and she had lost a liter and a half of blood. The two medications that we continue to take although half doses for colchicine and trental. She had been okay managing her flares until now. Now she is struggling with neurological symptoms we haven't seen in about 2 years. We were thinking of trying otezla, but her stomach is still pretty bad anyone have any suggestions? Also she stopped Plaquenil probably about 9 months ago and I'm wondering if her neurological symptoms are as a result of the Plaquenil being fully out of her system? I don't know I'm just trying to figure out what the change was that is causing her neurological symptoms to get so bad again. She's been out of school since she was in 4th grade and she has decided to go to high school this year we have modified days and modified workload but I do know it's extremely stressful on her she usually only makes it in school about 2 or 3 days, sometimes week missing weeks and making up the work could also be what's stressing her out into these flares. I just don't know what to do

3 Replies

Hi, I'm so sorry to hear of the very stressful and painful time you are all going through,

I'm in Australia and my daughter has had a terrible run with BD since age 6. She is on a lot of different medication but the only one that changed her life for the better was Infliximab. She's on maximum dose for her weight and having it every 4 weeks. The BD hits in waves, good for a few weeks bad for a few week. The specialist has doubled her Azathioprin at the end of November 2017, that has settled BD down again.

I'm not sure what to add just that going to school will be a great option to help your daughter feel more in charge of her life. Not to mention the re introduction of friendship groups is so important for their mental health. It may not always be smooth sailing but that can happen to teenagers without BD. My daughter is 15 and going in to year 10. She's on a modified program to help her concentrate on the subjects she needs to do rather than the subjects the school system thinks they need. Eg. Science, Maths, English that she needs as she wants to go to Science at Uni. Not geography, arts ect. At my daughters school she has a carer who she goes to when she misses a week or more of school. To make sure she receives all the missed information in class. My daughter also has friends in the classes who take pictures of the board and sends them to her laptop. Or she will email the teachers and they send on the missed information. Technology has dramatically reduced the stress of missing school. I do hope that your daughter feels the same.

At the Royal Children's Hospital in Melbourne, they now supply a qualified teacher for the patients receiving daily IV treatment. We take full advantage of this and when my daughter feels she's a little behind she will ask for help. Due to missing so much school my daughter tends to place a great deal of pressure on herself to get assignments done as soon as she receives them. Her thinking is, that she will get sick and if it's done she doesn't have to stress about it. A positive outlook but I do worry it also makes her ill. But it is her life and I'm their to hold her hand and give her support whenever I can.

Good luck, It's not easy as we'd rather it be ourselves instead of our babies. Please take time for yourself, to chat to special family or friends. I also found pilaties or yoga to help with my stress level but it also helped with my sleep. xx

PS, if your daughter goes on Otezla please let us know how it goes. We looked in to it last year but the specialist said it wasn't for children but looked like an amazing medication. x


You said her stomach is bad? How? Diarrhea or nausea? Vomiting? How soon after eating? What is she eating?


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