Hi we are seeing GOSH at moment as local hospital believe some form of vasculitius, we are not getting anywhere with them, bloods not really showing much on the ones they have back . Her symptoms are getting worse and they are , mouth ulcers, nearly always has one or two , chronic leg pain and a rash type that comes over her knees or feet as the pain gets worse, this not always the case , twice now she has passed out in pain . Then she won't be able to walk as it hurts to much or she can't bend her knee. She had 20/20 vision , one night a awful headache where she was crying out and the next day double vision and now has to wear glasses all the time as damage to left eye muscle. She has regular headaches, chest pains and a sore throat , hearing went but has come back . Mostly it's the pain that takes over her and its all I can do to stand and watch , it can happen at any time , last week it happened seven times in one day and she was exhausted, normaly she will ach all the time and then episodes of chronic pain . Having researched I keep coming up with Bechets ? How does it begin, how does it effect what should I do to get her tested?
Many thanks for any advice
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Motherof4
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You could:
See if your daughter fits the diagnostic guidelines:
And if you recognise any of those things in your daughter then I suggest you do this:
Print off those sheets
Write a few bullet points – a brief history, symptoms etc – the sort of things you have posted in your question. Take photos if possible. Take them to your GP/specialist/whoever it is you see and and explain why you suspect Behcets. You could ask for a referral to a Centre of Excellence. There are several BD Specialists under one roof and you can see whichever are deemed appropriate for your daughter. Together they will consider a diagnosis.
If the Centre of Excellence does not think your daughter has Behcet’s they will do their best to help you with the next step for your daughter.
You may find that once you present your paperwork and Behcet's is discussed that there will be someone at GOSH who can help your daughter without going to one of the Centres, I am not familiar with children's specialists. You can ask The Society about this. Also, whoever is treating your daughter now could contact the Centre for information and advice.
Do bear in mind that not everyone gets all the symptoms, to the same degree or frequency, so please don’t be scared by what you read, just use it to help you to get a referral to someone who can help you.
Meanwhile, do keep an ongoing record of her symptoms, it will help in the future.
So sorry to hear of your child's pain and your obvious distress as a parent. It could be one of many autoimmune diseases but does sound like Behcets. First look at the ......Behcets syndrome society .co.uk..... You find lots of info and advice. Next if you are in the UK you need to get a referral to a Centre of Excellence either in London, Birmingham or Liverpool. Also you need to be seeing a Rheumatologist as they are the main consultants for Behcets Disease. I am so glad you have found this site as I am sure you will get many other answers and lots of help and friendship. The most important thing is to get the correct diagnoses as this will mean your daughter will see the right doctors, and get the meds and treatments she needs. Sadly a certain diagnosis can take time but it is very important. Please keep I. Touch with this site as you meet many people in a similar situation and we all share our pain, advice and often laughter.
Hi, I can only say it as I know,. When I first joined the Behcets Society about 18years ago that's the way it was. I am still with my Prof in London now almost 20 years and I have met 5 other Behcets patients there. Maybe things have changed over time but Prof has always done well by me and referring me to other disciplines as required. Which is your main doctor for your treatment?
Ps Just remembered when we were in Spain about 3 years ago I became ver ill and was admitted to hospital for tests and the main doctor there was also Rheumatology and they were very upto date about Behcets,
I couldn't praise them enough for their insight and treatment.
A Rheumy I saw about 30 years ago said it was all in my head and discharged me.
A GU Specialist first queried if it was BD around 2000 and a subsequent call to the Society in 2000 led me to ask my GP for a referral to an Immunologist they recommended in London. That Immunologist diagnosed me and sent me to a Neurologist. They consult with each other about me, sharing my care and overseeing my other Specialists.
The Rheumy who said it was all in my head diagnosed my sister with BD about 20 years after I saw him!
Believe me, I was amazed at how much knowledge and understanding I found in Spain, from the local GP who as soon as he knew I was a Behcets patient referred me immediately to the hospital where as I said before I received fantastic treatment. Sorry to say much better than In the UK. Within 10 days I had seen Rheumy, Neurology,opthamology and what they refer to as general meds. I had body and head scans and X-rays. Through all this they also discovered my Spondylitis and started treatment immediately . My doc back home when I complained of head/neck and backaches said it was my age and I had to get used to it. So I had suffered for 3 years in the NHS to the point that I was almost suicidal with the pain. Then a 3 month stay I Spain and the docs picked it up straight away. Don't get me wrong I am a strong supporter of the NHS but we are really lacking in knowledge, good docs, equipment and speed of delivery.
Well that's my rant over......gues the main thing is we ourselves must play our part in our health. Research and standing up for ourselves with health professionals would be a good start.
Hi Mother of 4, I'm only a mother of 2 (and that keeps me busy enough x) and my eldest daughter has just turned 11 and has BD. It took five years for her to be formally diagnosed and I highly recommend keeping a daily diary. This, plus the obvious symptoms helped our rheumatologist get a solid and accurate diagnosis. I didn't want to lable and treat my daughter wrongly so this method helped us. My daughter has a team including all the above BUT our rheumatologist is our angel. Sounds pathetic I know but she took over when others seemed to scared or uncomfortable too. Any specalist will do just as long as they listen and you feel you can trust them.
Good luck as this is a testing time. Must add, my daughters bloods were either a little high or a little low but nothing obvious. This to me is the trick that BD has up its sleeve, it tests the doctors of today who would rather rely on tests than listening to what the human body is telling them. I must admit I'd hate to be a doctor.
Stay strong and if needed talk, cry, rant to someone about your worries and feelings. I did this and it help me with the over whelming feeling of watching my little girl go through pain.
Thank you, you have been through the mill. I hope your daughter is doing well x
Yes I keep a diary and photograph swellings rashes etc. my daughter is getting fed up with , what's hurting today ? Have agreed that everything hurts if she doesn't want to talk , and i out of 10 pain rate, normaly I can tell anyway.
We ended up in hospital last night as the pain in her legs became so great that she could nt cope and nothing worked at home. After three hours we went to A&E and then on to ward. Doctors where so nice and can't believe that no one has properly seen her as they requested. They themselves are seeing her in clinic on Tuesday. We could have stayed in but home is better and they have govern we ward access . I had to show them new rashe , she had purple spots, some looked like they had fluid and have stayed , the others like bruises and they can still faintly be seen. Last night Grace said that was the worst pain she had and that all day she had been hurting everywhere. She has two new mouth ulcers growing as well.
Have emailed Mr Brogan at GOSH asking if he will see us as its a specitity of his. Fingers crossed but I am not holding my breath.
It's just so hard to stand by and watch, we'd rather the pain ourselves.
Great about taking photos. Jaidas Rheum loves our photos and it makes it easier as I don't have to explain. Our babies are strong but when they can't walk due to pain it makes us feel sick and at a loss. I'm here for a chat any time. Xx to Grace.
Thank you , yes thank god for photos . Why is it that although they are not a picture of health , they look and act ok for the hospital appointment . My daughter always becomes slightly manic when we are there and I have now realised its because she is scared.
Did you daughters rashes come and go? The swelling and heat seem to calm down as well !
Hi , we saw local team of pedatrics and rhemotology and they are bringing her onto the ward next week for the week . GOSH are working with them. The idea is that they can catch her in a flare of pain that produces her rashes/ red raised blotchy things and take biopsies , which they will take either there or send us up to GOSH.
I think they are thinking Bechets now themselves , as asked lots of leading questions. They said the normal childhood vasculitis have been ruled out through blood results. Obviously I don't want her to have it , but I feel one step closer .
I have also contacted the centre in Barts and emailed the symptoms and history and they said they would take her with a GP referral , they don't have appointments tell October but thought it would be a good idea .
Thank you all or our kind and helpful advice and suggestions
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