Full diagnosis.

[Hannah86]

My 10 year old daughter got the full diagnosis of BD a couple of weeks ago after 7 years of testing. She started with symtoms at the young age of 4 and has been in and out of manchester hospital since. I have been able to control her symptoms to an extent with a diet that excludes wheat, dairy and gluten. This has had a massive effect on her quality of life. She is on an anti reflux medication too as while undergoing a biopsy to eliminate celiac and chrons, they found another rare disease with no link to BD! I have been fighting for two years against her being on full time steroids and when she got her diagnosis they suggested Colchicine which she has started taking. Has anyone had any experience with this medication? She has been refered to clinical psychiatry for support to deal with all this. She is about to start high school and hit puberty. I want the easiest and least effected method of controling this messud up disease i can for her.

[billi]

Hi and sorry for your pain when a child is ill. Two things, Colchicine is one of the most common meds for BD. I took it for 6 years during which time I had no BD symptoms, then I had a small stomach bleed so we stopped it but I have been able to cope much better since taking Colchicine all that time ago. All the meds we take have side effects some worse than others but if your daughter is ok with Colchicine then she shouldn't need the steroids. Did you know there is a Centre of Excellence for Behcets diseasein Liverpool? You should push your GO to send her there where she will see all the necessary consultants in one day. Then you can ask all the questions you need to know if each doctor has complete knowledge of BD. If you press home at the top of this page you will find all the information about the Behcets Society and all the centres of execellence which are only for BD. I do hope this helps and please let me know how you get on.

Billi

[billi in reply to billi]

I meant push your GP

[Hannah86 in reply to billi]

Is the Liverppol centre different from the childrens manchester hospital. I have brought it up with her consultant but they were quick to dismiss it as they said they knew everything that liverpool knew. Do they work with children. The problem we have encountered is the unknown. Nobody seems that clued up with BD and children, especially so young! They seem to be affraid to touch her.

[billi]

Yes. These Centres are only for Behcets. It means in one visit you can see many consultants if needs be. They specialise in Behcets so I am surprised that the Manchester hospital said this. They see anybody who has Behcets and you are assured that they have all your medical notes, know which are the best meds to give and any other treatments your daughter may need and they can give a definitive diagnosis to ensure you are being checked regularly. Just give them a call and they will answer your questions and tell them what the other hospital said. Sadly with a disease so rare we often have to fight our own corner but I don't see why there should be any problem for a child.

Billi

[Hidden]

Hi Hannah,

I would access the most expert treatment you can for your daughter.

The Liverpool C of E runs a paediatric clinic monthly with Dr Clare Pain who is a paediatric Rheumatologist. Vasculitis UK ( who I am involved with ) have given them a research grant to look at the incidence of paediatric Behcets.

Your other option is Prof Paul Brogan at Great Ormand St in London. He is the UK's top paediatric Vasculitis Dr ( Behcets is a Vasculitis variant ) and collaborates in clinical trials worldwide. He also wrote the paediatric Behcets fact sheet for the BSS.

I understand your reluctance to subject your daughter to the likes of prednisolone, much depends on the symptoms she has and which organs are affected. I would be very clear about the risk V benefit of treatment and no treatment.

[Hidden in reply to Hidden]

gosh.nhs.uk/medical-informa...

[Hidden in reply to Hidden]

rcpch.ac.uk/bpsu-incidence-...

[Shahzady in reply to Hidden]

Dear keyes

My son is 17 and dr recomend him prednesolne 15 gm and cholchocine 1 bd .now i don' t know at morning time whenever i check him he had cold sweating during sleeping .i am very anxious and crying about his quality of life which is being effected but now these sweatings and pimples on body which daily one is appeared and this make dread ful from all myself .plz tell me about it .i went two three times in Homerton hospital to get anything but ward drs are not giving me time

[Hidden in reply to Shahzady]

Hi Shazady,

I would ask for your son to be referred to the Behcets Centre of Excellence in London at Barts. The lead clinician there is Prof Farida Fortune. His GP should be able to do it as its nationally funded and the referrals are free.

If you feel that no one is listening to you then you really need to get him to expert care.

[Shahzady in reply to Hidden]

Dear keyes

I will try with GP but cold sweting is life long or until medicine finish and could he do what type of jobs .he daily wants to go his college but his college is far in Westminster and i do nt let him go .

[Jaxxi in reply to Shahzady]

Hi Shazady. It is natural for you to feel anxious about your son. If he goes to the Centre of Excellence he will be given the best available treatment and advice from experts who know the disease well.

Meanwhile, he has a life to live. If he feels up to going to college, why not let him? Behçets is a lifelong thing, but you don't have to let it take over your life completely. Many of us have had good jobs, relationships and adventures, despite having night sweats, pimples and worse!

There are loads of things he can do, but he will need to have more courage and strength than most guys his age. And loving support is crucial, which he will get from you. When he comes home feeling exhausted from normal life, having someone who understands his need for rest and recuperation will help him no end.

There are online groups for young sufferers, maybe someone else on here will point you to them. Joining something like that might help him feel less alone, and he could pick up tips on coping with things like education and career plans.

Good luck to you both.

[Michja]

Hi Hannah,

I can fully understand your worries and the fight for the right treatment of your daughter. I have had a huge battle at times as my daughter started with symptoms age 5. At 11yrs old she had a full body melt down ending up in a wheel chair for 3 months. I was so scared and so unsure of my discussion making and thought the Dr's were King. Truth is, this is a rare disease and you are lucky to be close enough to the best Specialists in the world. I would listen to the above recommendations UK is the best.

I'd also recommend the up coming BD conference in Manchester, it has been posted on the sight a few weeks ago. I'm in Australia and unfortunately just can't afford the cost of the flights this year. I went a few years ago in Paris and learnt so much. I went home feeling empowered by knowledge and also a little scared. I realized my daughter was on almost all the medications for BD and at the time still so unwell. Soon after the conference my son was also diagnosed as having BD but his mainly affects the lining of his lungs and ulcers. We are all on colchicine (I too have BD) and my daughter is on a great deal more. Over the last 6 months life has been pleasantly normal, only took 9 years to achieve it but we are all loving it.

All the Best for you, your daughter and family,

Michelle

[Hannah86 in reply to Michja]

Thanks, your email was inspirational. Can I just ask did u take ur child to the conference? I have booked for me and her to go. She will be 11.

[CeeJay12]

Hi. The Centre of Excellences are great. I have a 15yr old day daughter with Behcets, diagnosed 18mths ago. Not only do you see a range of consultants who specialise in Behcets, you also get to meet other parents in the same boat. We visit the Birmingham centre and it's been great for our daughter and for us. You're there all morning seeing a range of consultants . I'd definitely ask to be referred. Our daughter also has had a stroke, she has Colitis, 2 liver diseases, and migraines, all related to Behcets x

[UKADMIN Partner Behcet's Syndrome Society]

Hi Hannah86 You are more than welcome to bring your daughter to the Manchester Conference, although it is geared adults and no specific activities for young people, but she should be fine if she brings along a book or game to play. I think you have also booked for the Behcet's Family weekend in Cumbria, which is great and you will get chance to talk to others face to face about concerns etc.

Looking forward to seeing you later this year. Contact me if you need the Centre of Excellence details [e-mail]

[Michja]

Dear Hannah, I went on my own as my daughter was still in the Royal Children's Hospital in Melbourne, Australia. I needed to soak up all the information on my own and I asked 1 main question (which I think almost drove most there insane,HA) to all the specialists that spoke to us. I wanted to know if stem cell therapy was being used to help patients. Thankfully an eye specialist was having a breakthrough and had restored a ladies eye sight who had become blind due to BD. It gave me hope as my daughter was having a great deal of eye problems at the time. majority of my daughters symptoms have calmed down thanks to her different medications and 4 weekly infliximab IV. xx

[seabird100]

Hi

We are new to this, my daughter only recently receiving a 'probable' Behcets diagnosis. We were fortunate to be referred to the Liverpool centre of excellence. The treatment & care she received was truly excellent. Lots of support for the family too.

[Jaynep]

Yes I've used colchicine for 3 years it's good stuff. Hope she feels better soon xx