Newbie to Behcets

[CeeJay12]

I've just joined this community as my 14yr old daughter is currently being investigated for Behcet's. I have found a lot of the posts extremely interesting and all seem to fit in with my daughter. In 2012 she was diagnosed as having migraines. She has a lot of headaches but these were very different. After ruling out everything else, migraines were diagnosed and treatment given. In June, doctors thought she was having another migraine. However, this lasted 5 days and I knew this time it was different. She was admitted to hospital and they discovered a blood clot in her brain that was causing bleeding and she'd suffered a stroke. Whilst in hospital for 4 weeks, they did loads of tests to try and find the cause but were unable to find anything that would point to this happening. We were ready to accept it was just one of those things that happen for no reason. Then in October she was poorly again and I took her to hospital, where she stayed for another week. She had a high temperature, horrendous rash on her body resembling meningitis, terrible diarrhoea, in agony passing urine, mouth full of ulcers, terrible stomach pain and had problems with her vision. The hospital started treatment for an infection but all the results were coming back as negative. A scan revealed her spleen was enlarged but couldn't understand what was going on. After 2 days, her consultant decided she must have a problem with her immune system and we then visited every possible department in the hospital! It was then the consultant mentioned Behcet's and referred her to Birmingham Children's Hospital to see a Rheumatology Consultant. He was of the opinion that Behcet's is a strong possibility and we are now waiting for our appointment for her to be seen at the Behcet's Centre of Excellence in Birmingham. Looking back, she's always had a lot of mouth ulcers, lots of bowel issues (which her GP said was IBS) and headaches. She's been to the GP 8 times since she was 5yrs old with suspected urine infections, which now makes me wonder if she had ulcers instead. We are now keeping a diary of all her "issues" which she tells us about and I've been interested reading a lot of the posts as she's experiencing a lot of those too.

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Hi Ceejay,

So sorry to hear about your daughter but glad that you are approaching a definitive diagnosis now.

The paediatric Vasculitis expert in the UK is a Dr Paul Brogan who works at Great Ormand St Hospital ( GOSH ) in London. He wrote the leaflet on Paediatric Behcets Syndrome for the Behcets Syndrome Society and I know that he works with the London C of E. He is a Rheumatologist but has had training in Nephrology as well.

[Maggie2277]

That's terrible I'm so sorry shes only 14. Poor baby. I have had headaches for 3 years and after lumbar punctures , MRI , CT, cerebral angiograms , and 100 more neuro exams... I'm a neuro ICU nurse ironically... Anywsys after a million dollar work up all they came up with is that I must have cluster headaches and there were some significant white matter changes on the brain.... NOW this past September everything blew up in everyone's face when I had presentation of ALL the classic textbook symptoms of Behcets.... I'm 38 and up to 3 years ago all I had was a headache every morning at 6:00 am.... You see this disease if very unique and needs to be treated individually. The best place in United States and the only hospital that specializes in Behcets in US is in New York. NYU LANGONE.... Google it... They are amazing.... Dr. Yusuf Yaznici has studied the disease for over 35 years... Give it a try...

[Lettie999]

Good luck, Just so you know next to the Behcets clinic is an amazing Rhuematology clinic headed up by professor Caroline Gordon. They are brilliant at dealing with mystery illnesses with unusual symptoms. City hospital in general is amazing with people like us so she will be well looked after. Definitely keep the diary, I was amazed how many niggles assisted doctors in diagnosing me.

As an aside I have found hormones have affected my Behcets, I now take a progesterone only pill which hasn't cured me but as eased some of my symptoms. All the best to you all.

[CeeJay12]

Thank you for all your comments, which are an encouragement. Consultants at the Behcet's Cebtre of Excellence in Birmingham are currently reviewing her case and we can expect an appointment in February. Life at the moment consists of endless blood, urine & stool samples! On the plus side, we've had a couple of "problem free" days which is really good and she is happy

[AusBehcets]

Welcome Ceejay12. Sorry to hear how your daughter has been suffering. Sounds like you are on the right track to getting help. So much you have written resonates with me & I don't even have full diagnosis yet. I am in my 50s with grown up children.

If you want your posts to have greater privacy here you can choose "Community only" option at the bottom of the page before you post. Then your post can only be read by members. You can also go back and edit the setting of this post if you need to.

It's a good idea you have to keep a diary. Photos of rashes, sores, blisters, ulcers useful too. I wish that I had documented things better.

[AnneRyan]

Hi. Does anybody know if there is a Behcet's Syndrome group in Ireland or any backup/ advice/ specialists? Any imput greatly appreciated.