Seven year old been ill for 11 months under GOSH but all going wrong

[Team4]

Please help, my daughter had glandular fever over a year ago , got better then became ill again but with slightly different symptoms. Had her retested for GF and negative as I knew it would be. Her Symptoms are regular mouth ulcers one or two every other week, joint pain and now muscle pain.she says she is achy , then she will have episodes of extreme pain and we can watch her Knees mottle over into a purple rash whilst she is screaming . We have had episodes where she can not weight bare, or hold a pencil at school because her fingers have swollen up. She also has lost vision , up to two months ago she had 20/20 vision and then one night a massive headache and then on DD . Took her to hospital and her left eye muscle is no longer working with the right so now she has a prescription and is blind and has to wear glasses all the time. Her hearing comes and goes, she has a sore throat all the time and then gripping pains, and chest pains. It is all very upsetting particularly at 3 in the morning when she is screaming the house down because her legs hurt so much.
Our local hospital first thought juvinile arthritis and autoimmune issues, bloods showed white cells slightly raised and she had a previous high ESR level. When she could nt walk they thought Vasculitis which is an inflammation of blood vessels that attack anywhere in the body, there are 30 different types, so have been referred to Gt Ormond St rhemotology department. So far it has been awful there , we haven't seen the Dr that specialise in this illness , they lost the referral in the first place then I discovered the refferral was lame and missed out most of her symptoms!
I was told her MRI scan was normal , but when we saw the dr she said the results weren't back ? Blood test from a recent emergency trip to hospital not back either.
My question is is anyone else out there with a child that is truly suffering but because of the nature of the illness the doctors don't see it?
I feel as a mother the doctors think I am making things sound worse until I pull out photos linked with daily diary , I have three other children and its very hard to balance everything .
All I want is a diagnosis and treatment so I can have my little girl back full time . If anyone has a child with similar problems I would be interested to hear from you

[anothershittynickname]

I'm no Dr but do you watch 24 hours in A&E?

There was a young man on there with a very similar disorder - I can remember the name of it, began with a "b".

I know that's not really helpful, I'll see if I can track it down so you can possibly take it as a suggestion to her consultant.

Much love xx

[RNJ3007]

Sounds like Bechet's to me...

[anothershittynickname]

I may be way off and apologies if so but it was the pain thing that struck me.

Behçet's Syndrome - see what you think.

[CecyHall]

Yes, my immediate thought reading it was bechets disease which I only read about due to 24 hours in a&e, the bits I read said about mouth ulcers and the pain.

My son has had nowhere near as bad illness as this but has suffered from tummy problems which we could never get much of an answer to so I understand the frustration and the feeling of just wanting to know why and be believed. I hope you get answers and treatment soon.

[Thistledew]

I think another - was referring to Behcet's syndrome I have no experience of it at all and don't really have any other advice, than to keep pushing for a better diagnosis.

I hope your DD gets some help soon.

[Thistledew]

x- post with several

[VivaLeBeaver]

My dad has vasculitis - Addenbrooks at Cambridge is the national place for it and dad got referred there.....not sure if they have a Paed dept though.

My dad had high esr, struggled walking, terrible pains in legs and head, his hearing went, never lost his vision but his eyes will swell and go bloodshot when he's having a flare up.

He was in hospital for over six months, they couldn't work out which type it was and did various tests and biopsies until they worked it out. Think it was Wengers in the end.

I hope your dd gets better soon but it may be worth asking about Addenbrooks - the main consultant there will liase over the phone with consultants from other hospitals.

[Team4]

Thank you all yes I have to admit I have a feeling and I think I will try to speak with The hopital in Cambridge . I feel that GOSH are not interested unless its obvious . I am sur not all departments are the same and we have just been unlucky ?

[crashdoll]

I'm sorry to hear you've not had good treatment at GOSH. I have heard it can be hit and miss in the rheumatology department. It really sounds like it could be autoimmune. Have they ruled out autoimmune problems or are they still deliberating? Many of your DD's symptoms sound like Lupus or Sjogren's Syndrome. Keep pushing for her, poor little thing.

[Team4]

Yes they have tested for lupus many times , I think smog rents syndrome to. In a weir way I am glad I am not alone with that department , I am complaint tomorrow etc. thanks everyone

[crashdoll]

Team You can have certain autoimmune conditions but not show up the particular antibodies. Has your DD been given any treatment; anti-inflammatories or steroids?

[ihearttc]

We are under GOSH as well(we we are supposed to be but have been discharged as they don't really want to know). My little boys problem is completely different (its cardiac related). To cut a very long story short...his symptoms don't fit the condition he has been diagnosed with but they don't know whats causing the problem and can't do anything to help him. Its in no way life threatening at the moment we still don't have any concrete answers and as a parent thats what you want. I completely understand the doctors thinking you are making the symptoms worse as well...I filmed my little boy so they could see how bad it was.

We were never even given the results of all the tests he had done down there either and it ended up with me finding an e-mail address for the consultant (who we have never even seen) to hassle him to find out what the results were.

Not much help at all but just wanted to let you know its definitely not just you...GOSH are amazing don't get me wrong but I also think they can make mistakes and perhaps you (and me!) need to look at other hospitals.

Really hope you get some answers for your daughter.

[crashdoll]

I've been thinking....the Royal National Hospital for Rheumatic Diseases in Bath may be a good option. I'm not sure where you are located but if possible, it's worth the journey. I've heard many people rave about it. www.rnhrd.nhs.uk/

[Team4]

I am so sorry you to are having problems . The one place that is meant to help and if your child is'nt obvious ...... I am sure this is not related to all departments , but where has the care gone. We are supposed to all be there for the same reason , the care of a child. Letting a child have a proper childhood, health , education are fundamentals , yet if your child is ill both are taken away and family life becomes that much harded. Do the Doctors ever take this on board, only the dedicated , caring ones I believe, the rest have become accountants and we are the audit.
Keep trying , keep calling the department at your local hospital the consultant sectary is always a good option , keep going to Docs and don't give in.
Yes I guess we should be grateful that they are not at deaths door etc but the limbo of not knowing and watching someone little you love hurting and you can do nothing is mental exhausting and emotional.
Take care of yourself

[Team4]

No steroids till we know what it is although GP feels. They are wasting precious time and should put on low dose to give her a break!

[beautifulgirls]

Have you asked for genetic testing to be done - that would be something the GP could order that might rule in or out many possible causes.

[PJM18]

Given the glandular fever, I would have thought they would be looking at some kind of post viral fatigue/ME type problem. If this was the case it would be important to have advice and a plan re graded exercise, nutrition, vitamins, alternative therapy etc. Have they discussed this?

[idiot55]

hope you get the help she needs ASAP, have heard similar stories about GOSH.

[cedmonds]

I know it's not any help but after years of Ds being in and out of hospital and lots of school missed he finally got referred to GOSH and he is a different child hasn't been in hospital for months.

[Team4]

Yes sounds like a good idea. The first thought at the beginning of this was ME or something similar. We are going into local hospital or a week next week as GOSH haven't got any beds , but the Dr is coming to us and if they need to have her up there then they said they would. Things seem to be happening at last.