Im new here and unsure of Bechet's diagnosis

Hello, my 13 year old son was recently very ill in hospital with pneumonia, and then he developed ulcers/blisters in his mouth and throat - his lips were all broken out with sores also. The were extremely painful and didn't respond to any treatment until eventually steroids were prescribed. He had quite a lot of abdominal pain also, which they put down to the medication he had been on. He also had a few very red, raised spots on his feet, but they eventually faded. We live in Ireland and he was eventually transferred to Dublin as his symptoms were mystifying the medics - we were honestly getting a different diagnosis every day!

The first indication that something was wrong was when his lips started swelling, and then the blisters/sores started in his mouth and throat. He had a similar incidence 5 years ago which also started with his lips swelling - this incidence was worse and his eyes were also affected - he couldn't open his eyes for a few days as they were very painful and red. At the time he also had Chicken Pox so they weren't sure if it was a reaction to that.

He has had ongoing pain in his abdomen and sickness over at least 6 years also, which results in him missing quite a lot of days at school.

The consultants in Dublin seem to think this last incidence might be Stevens Johnson Syndrome but the consultant near where we live thinks it might be Bechet's.

I am really sorry for this long message but I was wondering if these symptoms sound familiar at all or if anyone had any advice. He was in a lot of pain and discomfort in hospital and nothing helped him at all (not even oramorph) until the steroids starting working.

Many thanks!

8 Replies

oldestnewest
  • I so wish I could give you an answer but autoimmune diseases are very difficult to diagnose, especially Behcets. The many symptoms overlap and cause confusion as it is very important that you get the correct diagnosis and therefore the best treatment. I have suffered with BD for over 30 years and it was over 12 years before I got a diagnosis. This said it is getting better with more research, knowledge and treatments.

    My advice to you is...immediately start a daily diary. Write down your child's symptoms, feelings, and moods, and any meds. Also if they worked or not next, take photos of any blisters, ulcers, rashes wherever they appear, size, colour and duration, finally go to behcetsociety.co.uk. Where you will find lots of useful information and advice. Take all the info with you to any medical appointment and show the doctors, write down any questions you have, then back home write down the answers you got.

    I do hope this will help in getting a diagnosis but remember it can be a long journey..

    I wish you get some answers in this new year and if you need to chat you can message me privately.

    Best wishes

    Billi

  • Hi ,

    Sorry to hear about your son. Behcets can present in children but it's rare and can be difficult to diagnose. It also has quite a few mimics including periodic fever syndromes and TRAPS, I don't know if they have been ruled out. Certainly Steven Johnsson Syndrome could case the acute symptoms you mention.

    The most important thing is to get an opinion from a paediatrician who is experience in making a Behcets diagnosis, they are few and far between. I do know of a few adult physicians in Dublin who have experience in Vasculitis ( Behcets is a Vasculitis variant ). They are a nephrologist called Prof Mark Little and a Rheumatologist called Dr Eamonn Malloy. There is an excellent paediatrician at Great Ormand Street in London called Prof Paul Brogan who is very experience in paediatric auto immune/ auto inflamatory disease and I know he is happy to offer advice to Consultants elsewhere.

    I have met all of these Dr's at various events, if you would like me to find out if there is anyone in Dublin that they would recommend just let me know.

  • I am sorry to hear your son is suffering. I was diagnosed with Behcets after many years, the final symptom if you like that confirmed it was I have lost partial sight in one eye due to inflammation. I am not an expert but I would say your son does indeed have behcets. The treatment for me, which has thankfully worked, was a high dose of Predisolone, alongside the introduction and gradual increase of Azathioprine, I am now gradually decreasing the Predisolone. I have no flares for a good while now, and any inflammation in my eyes has gone. I wish your son all the best and I hope he can get treated quickly. It may be worthwhile contacting one of the Behcets centres of excellence, Birmingham hospital has one. Please let us all know how you get on.

  • To address your symptoms question, it sounds as if this COULD be Bechets. I once was in the hospital for chest pain and told I had pneumonia. I had chest pain a number of times but only went to the hospital once. I get or used to get small raised red bumps on my stomach and once in a while on my fingers. Never on my feet that I could see though. Anti inflammatory drugs helped my chest pain. Not sure if what your son is feeling is what I had, but it sounds similar at least. One symptom in some males is swelling of the testicles/groin area. I had this mildly when I was roughly your sons age and did not speak about it. I had it intensely as an adult and this was one of the diagnostic symptoms used in my case. Might be worth a short conversation with your son to at least rule it out. Good luck.

  • Thank you so much everyone for your replies. We were at the hospital today and they are doing a special blood test to see if he has a gene ( I think?) that would make it more likely that he had Behcet's. Once that comes back they are making an appointment with a rheumatologist. I will follow up on all you have suggested here and will definitely let you know how he gets on. Thanks a million again!

  • It will be the HLA B51 gene. Unfortunately it's carried by very few people outside of the " silk route " where Behcets is very prevalent. A negative result is meaningless and doesn't prove anything. The fact that they are doing this first indicates to me that they potentially have poor understanding of Behcets. The way to have it ruled in or out is to see an experienced Consultant.

  • Hi Sanjoy1, you will find lots of information on Behcet's here in our Factsheets: behcets.org.uk/information-... We wish you and your son all the very best for a prompt and correct diagnosis and helpful treatment. Keep in touch.

  • Thank you all so much!

You may also like...