Behcet's Syndrome Society
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Bechets query in young child ?

Hello

I am currently waiting for my daughter to be seen by rheumatology Etc at Southampton after a terrible start to her life. It’s taken 2.5 Years to get to this point and she suffers constantly from mouth ulcers , genital sores , terrible fatigue and fevers , and bad bowels to the point she is now feeds through a tube. She is only 2.5 years old and has been ill since birth and in and out of hospital with no clear answers. Bechets has been mentioned as an outside possibility and I wondered if anyone had any experience of this in someone so young ?

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thats so sad honestly i cant imagine ur pain and struggle but its most likley behcets as she gets genital ulcers apart from the mouth ones its crazy how it can start so early , when did she excatly begin the mouth and genital ulcers ? also if she was born with strong immune system then vaccines could be the cause as it modified her immune system and it over-stimulated it causing it to be inflammed!! as im sure she never got infection or virus at such young age!!!! hope you find some answers takecare.

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Thank you so much for replying. The ulcers started when she was about 1 along with these horrible full body rashes. We have been pushed from pillar to post with no diagnoses and a really poorly child who struggles so much all the time. I have googled everything but I can’t find any stories of a child so young being diagnosed. I am just hoping we get answers in the next few weeks. Thanks again ☺️

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aww i hope she gets better no child that age should suffer behcets honestly i hope god helps her!! i hope you find your answers soon and hopefully a well knowledgable doctor can help and take the weight of your shoulders many blessings takecare :)

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A lady yesterday 3 year old had been diagnosed so it does happen. We are told that once the right treatment is sorted things will be a lot better, try and get a referral to a Coe. Good luck x

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Thank you for that helpful information. Sorry to be stupid but what is a Coe ? X

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Morning Sedans

I assure you it does happend to young childre, my daughter started showing symptoms from the age of 3 years old. Read my previous post to understand my frustrated journey. Ask the to reffere her to the CoE. center of excellence. Hope this helps

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HI

I am so sorry about the nightmare time you have had. It does indeed sound like Behcets - I know one girl (now an adult) who was diagnosed as a baby and certainly there are many youngsters whose Behects started early but who had a long wait for diagnosis.

There are three Centres of Excellence (CoE) for Behcets in England, the one in Liverpool supports a Clinic in Alderhey - and the London Clinic works closely with Great Ormond Street. You can either ask for a referral to the Centre - or ask to be sent to Paul Brogan at GOSH.

There is a Facebook page for parents which you may find helpful - you are not alone x

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Thank you. That is really helpful information. We are having a tough day today with this horrible rash and sore mouth and yet another fever and being sick. It literally runs in cycles where she is just wiped out every 10 days or so. What I find hard is her blood tests are always ok so I don’t understand what’s going on and it feels like they just treat the symptoms yet we are now at the point she has all her nutrition and medication through a tube. I will ask at Southampton for a further referral then. Thanks again for all this support it has been amazing xx

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I would recommend Prof Paul Brigan at GOSH as well, no one knows more about childhood Vasculitis variants than him and his team.

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

Have they ruled out one of the periodic fever syndromes as well? They are auto inflammatory and can present with the symptoms you mention.

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Hello

No one has done any kind of tests at this level yet. Everything else has just been ruled out which is why it’s all taken so long. Thank you for that information that’s really useful 👍🏻

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Some information on periodic fever syndromes

ucl.ac.uk/amyloidosis/nac/f...

I would insist on a referral to the most experienced Consultant that you can find. Auto immune disease in young children can be complex and difficult to diagnose, many diseases can overlap. Prof Brogan at GOSH has an international reputation.

Good luck.

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Thank you. I presume I just ask our current pead to refer to him rather than Southampton infectious disease consultant ? We are just desperate for answers and for our little girl to get a quality of life. She can barely leave the house at the moment she is always so poorly. It’s awful to be constantly told they don’t know what’s wrong ! X

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I would.

If they are reluctant to refer then asking for your request to be documented in the notes and the reason for refusing the referral can help! Then ask for it in writing.

Not one will care about your child’s health as much as you do, be pleasant but insistent. Let them know you aren’t going to give up. Ask how many patients they have had with your daughters symptoms. You are allowed to tape consultations as well.

Unfortunately some Dr’s are reluctant to refer onto others, your daughters health is the most important thing here.

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Hi Sesand, good luck with your appointment in Southampton. This is our Factsheet on Behcet's in Children, written by Dr Brogan. Hope it helps and sincerely hope your little one gets the right diagnosis and treatment really soon. behcets.org.uk/wp-content/u...

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Hi there, I read your post and my heart goes out to your baby girl and yourself. If I lived close by I would be at your side to help in anyway I could but I live on the other side of the world in Australia - so I will send you many prayers. Hopefully with the right medications she will go into remission being so young. But this disease has a mind of its own. Please stay in contact on this site as we all are there with you both and care how your little girl is going. Regards Helen

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Thank you for your kind words I appreciate them. It’s very very hard to see any light at the end of the tunnel at the moment x

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I don’t want to alarm you but I hope it’s not Southampton Pediatric Rheumatology? I wouldn’t even bother, I WAS under them XX

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Yes it is ... that doesn’t sound good ! What happened if you don’t mind me asking ? Do you have any advice at all ? X

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I am only 16 and was referred to them as an emergency aged 15. Initially they were good. I ended up in Hospital with Sepsis from the leg ulcers. I went to see one of the Pediatric Rheumatologists a short while after who said I likely have Behçet’s but IBD needs to be ruled out by drs first. Then all of a sudden the ‘main’ Pediatric Rheumatologist accuses me of ‘making’ my ulcers. Said my weight loss is down to a made up eating disorder(which I never had) The thing is, they don’t come across Behçet’s, so are reluctant to diagnose it. My friend was told by the same consultant it was made up and in her head. Go along but be weary of that lot. We will be writing a formal complaint for the obscene lack of care they have shown. I was heavy metal poisoned in the past and one of the Consultant laughs at me. Their excuse will be ‘it should’ve been diagnosed by now’. I would ask for a referral to the CoE. Xx

Don’t hesitate to ask any more questions xx

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You poor thing that sounds a horrible experience. Do you mind me asking who sees you now ? I think I will ask for a referral to a CoE straight away then as I understand all My daughters symptoms sound vague but they are debilitating when they are all put together. I am not sure I would cope with another doctor shrugging their shoulders at me. Do you mind me asking how you were diagnosed after that. Apologies for all the questions and please feel free not to answer !! Xx

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Do you mind if I list my signs and symptoms? Mine are similar to your child’s.

Constant Fever

Glomerulonephritis

Rashes

Mouth, Genital and Leg ulcers

Bowel and stomach issues (mild inflammation)

Very red, hot and swollen joints

Erythema nodosum

Fatigue

Foliculitis

And more

I have a referral to the London Behçet’s CoE And we will get an appointment through any time now.

I haven’t been officially diagnosed by a doctor but we know I have it🙏🏼💗

I had to tell you as a child myself, we want a childhood, where we will be taken seriously.

You are a great mother, like my own. You know your child better than any doctor does. Had anything shown in bloods with her? Xxx

You are both in my Prayers xxxxx

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Gosh that sounds exactly the same ...you must be having a really tough time. Please let me know how you are getting on ? We will be thinking of you.

Blood tests so far have been inconclusive which hasn’t helped so it’s all a bit of a mystery.

I hope you get the answers you need very soon. Good luck xx

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