Still no further forward and wondered if anyone thought I should ask for a referral to Barts?

Hi ,

Thank you to everyone that replied last week x

Been I bit hectic to reply , three out of my four had impetigo ! Just what you need , luckily The usually poorly one had a few days of being normal ish. I say ish as knees and ankles still aching and a new mouth ulcer plus sore on out top lip plus stomach pains and still constipation, but she was in good spirits and looked pretty good and had more energy then normal.

Has anyone noticed a pattern with children that they get a little better, then getting hyper and very cross , she has zero patience at mo, wonder if she is going to go downhill again ? Have also noticed her skin starts to itch as well .

The reason for my question is the on call reg said rheumatology where stepping back ?

Which is not what you want to hear , especially as her consultant the only one I trust is away, no one seems to know when the bone marrow will be done or even if it will be done. Despair is the word I feel. Even my GP is fed up which leads me to do we get referred from him to Barts?

I emailed them with all her symptoms and was told they would take children but need to be referred and then once that's done the consultant would look at her case and decided whether to take on . Have said I could possible have appointment in October.

I have in the mean time emailed GOSh saying that she has been lost in the system ( administration keep missing out letter, appointments not passing info on etc) and that surely they must have a plan for her.? I cc the Pals team in as well , just feel like they don't care or rather she isn't ill enough when they see her, forget what she is like at home/school etc. the on call reg just kept saying that her bloods are mostly normal and not indicating what's wrong with her. I don't think she read the letter between the main consultant who suggested BD and the ENT consultant that agreed he to thought she had BD as all his findings in his mind and history fit. It's like talking another language and the worst is she doesn't actually have an appointment till Xmas!

I am seeing GP on Tuesday morning to discuss with him and hope we have had a response from GOSH by then , will chase Monday with phone calls.

I really think the medical world need to take a look at themselves and stop ( not all) thinking they are to important to connect with people and listen and mostly think outside the BOX.

Morning rant out the way !

Maybe I am barking up the wrong tree .... Any thoughts would be great as I am now confused as to what to do or think . I have to say I have even stopped a daily diary as it was so depressing and just write a weekly summary - which I can't bring myself to do , just reminds me that she was up twice in tears from knee pain etc .

Many thanks x

4 Replies

  • Hi, I think I would email Paul Brogan at GOSH directly...details here: He is a rheumatologist but specialises in Vasculitis (the family of diseases that Behcet's sits in). That way you will get specialist care and opinion from a paediatric specialist and also as the family of the diseases has many overlapping conditions, they can come to the right diagnosis for your child. X

  • Thank you I will try and push to see him , I have already emailed awhile ago but will try and speak to present consultant as I believe they have to refer to him themselves. Nothing easy x

  • Yes. You can always email him direct too to introduce your child and their story. Do always feel free to share and we have a Parents of Behcet's Facebook group too. X

  • I would but not on Facebook . I guess I should think about joining.

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