Unsure

Hi. My daughter is 8 and has had lots of different 'problems' since the age of 3. She was first diagnosed with uvitus when she was 5 and was on a stronger course of antibiotic drops which cleared it up but has left scaring. She then started with joint pains, has terrible balance (can not walk downstairs 1 step at a time), gets skin infections and rashes, headaches, mouth ulcers, dislocated hip and has recently started have strange 'paralyzing' moments where she can't move for a few seconds. This happened today at school, teachers rang me as panicked as she was left with tingling fingers.

She is under a rhymotologist who first though jhs but has now mentioned behcets so we have an appointment at the bechets clinic in 2 weeks time but I'm unsure as never really heard of it?

11 Replies

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  • Hi Dawn and welcome to the site. Firstly may I say how sorry I am that your child is suffering in this way.

    Behcets is an autoimmune disease and named after the Turkish doctor who discovered it. Like many autoimmune diseases it has a multitude of symptoms and cross overs with other similar conditions such as, Lupus, ME and MS.. It is a rare disease and if you have an appointment at one of the Centres of Excellence, this is very good news. I don't want to say much more just now, I think it best to wait until after you've been to the clinic, except that whatever is wrong with your child you need to get the right diagnsosis to start the correct treatment and meds. Please stay positive and be strong also can your husband, partner friend accompany you as you will have so much to takin and questions to ask I'm sure. Start a diary daily of how your child is feeling, any symptoms, illnessses etc also photos of any ulcers, rashes anything and take these with you to any appointments to show the doctors. This advice might sound strange but autoimmune diseases are difficult to diagnose so all this will help the doctors to get a faster more sure diagnosis and treatments in place.

    I wish you all the best and try not to go looking for answers until you get the diagnosis.

    Take care and do let me know how you get on.

    Billi

  • Thanks Billi

    I've taken lots of photos of rashes and her swollen lips and swollen joints which the rheumatologist has seen and it's her that has referred us to the behcets clinic. I've read a little bit about it but after seeing a different doctor last week (over something else) he told us it was highly unlikely she has bechets as she would be a very poorly child if she did. It's left us very confused but glad we finally have an appointment. I will keep you all updated

    Dawn

  • Billi again. The doctor who said that your daughter would be more poorly does obviously not know enough about autoimmune diseases. If you were to speak to any of us we would all have different symptoms, some more prolonged than others, some meds work for one person but not for another etc, etc, In other words we are all unique and each of us will tell of a different journey with these diseases. It is not all doom and gloom all the time, there are remissions and most of us manage to live a life.

    I am so angry that the doctor said this and just how poorly does he want somebody to be before they seek professional help.

    Go to the clinic with an open mind, ask lots of questions and find some answers.

    Hugs

    Billi

  • Hi Dawn

    Welcome to the site - and believe me I hope that your daughter does NOT have Behcets - but aside from the Dislocated Hip all the symptoms are suggestive - and the response to the other doctor is "she IS a very poorly child she has just learnt to live with it".

    It is great news that you are being seen at a behcets Clinic - which one is it?

    We are here for you no matter what

    Amanda

  • Thanks Amanda. She's being seen at Liverpool Street alder hey. She's under the rheumatologist there and apparently have a behcets clinic too.

    The dislocated hip was down to her jhs as she is extremely bendy and often have painful joints and swellings. Wasn't sure if this was linked to bechets?

    Dawn

  • Well you are in the best of hands there.

    Claire Pain works with Rob Moots and those are two Excellent Doctors who are also nice people!

    However your daughter has Ehlers Danlos (jhs) and actually there are many things that go with that that mimic Behcets (believe me I know this) because like blood vessels Collagen is everywhere in the body and your daughters collagen is more stretchy than it should be

    POTS (Postural Tachycardia Syndrome) would explain the head aches and the "moment" she had

    mast cell activation disorder covers all the rashes and skin problems

    Eye Problems (no special name)

    It should also be mentioned that there can be serious Bladder and Gastric problems as well.

    Talk to the team about this as a possibility - but above all else be relaxed - you are truly in good hands

  • Hi Dawn

    I am so sorry to hear about your daughter my heart goes out to you, but I am so pleased that you have an appointment and hopefully you will get a diagnosis of what is going on. Really good idea about diary on what she eats, how she feels and pictures. I would suggest that if you can use natural products in her bath, coconut is very soothing and will help her skin. Wash her clothes/bedding in a natural product also toothpaste try a natural one this will help with the ulcers. Just a suggestion but I would see if your daughter could have a vitamin D test this can cause terrible joint pain which is one of the things that I have suffered from. I'm not saying that the things that I have suggested will cure but it may help. I really hope your daughter gets the help that she needs. The trouble with Behcet's is everyone has a list of symptoms that come and go and two people are very rarely the same, this is what makes it so difficult to diagnose. All the best, do let us know how things progress we are all here to help. Biddy xx

  • She's had countless blood tests and the only vitamin deficiency that I've been told about is iron. She's been on iron medicine 3 times a day for about 6 months now so hopefully we'll get this tested again in a couple of weeks.

    Thanks I'll keep you posted

    Dawn

  • Good luck, Dawn. We will all be thinking of you.

  • Good luck Dawn.

  • Went to the bechets clinic at alder hey hospital today with my 8 year old. Doctor doesn't think she has betchets as her mouth ulcers as now under control. Said she has jhs and that's where the pain is coming from. We've been referred to physio and opthomology again. And to be seen back in rheumatology in 3 months time.

    Thanks for all your advice

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