I need advice for my seven year old daughter , we are off to Gt Ormand st hospital this Monday as local hospital think vasculitis

She has been through so many tests already , she has rashes that pop up any where ,her knee was a purple ballon the other day , and then she could nt walk because of the pain in ankles and knees for a while they thought it was glandular fever again ( she had that last year) ill the blood test should no. A month ago she had twenty twenty vision now she has to wear glasses all the time because of double vision and she is now partially colour blind. Her fingers ache and she can't complete school work , the doc found capillary in the finger that hurt the most? They also thought it might have been JIA due to swelling etc she will have a couple of good days but will cry in her sleep and legs aching. Her hearing came and went last week. Mouth ulcers up to three at a time, she gets fed up and is always tired and very moody which is out of character. I just want to know more on what to expect , please can some one help as I also have three other kids 9, 4,and 2 1/2 , symptoms been growing over the months so we have all had to adapt but it would be so nice to hear from others going through or gone through and any ideas on what kind she has and what tests to expect , better to be prepared.

Many thanks

10 Replies

oldestnewest
  • Hi, really sorry to hear your daughter is so poorly but it sounds very similar to my condition four years ago at the age of 43. I also had double vision, joint pain, aching legs, ulcers, leg rashes, malaise, etc. I had been coughing up and passing blood for a week before I was diagnosed with WG (Wegener's Granulomatosis) and started on high doses of Prednisolone and Cyclophosphamide. Within days I was feeling better and four years on I lead a virtually normal life. I'm no expert but it really does sound like WG and if it is treatment needs to start as soon as possible. I'm sure there are people on this forum who will be able to give you better advice. I do hope that she gets diagnosed quickly and starts to improve. All the best. John.

  • Hi,

    I wouldn't like to try and second guess her condition really but she has a lot of symptoms common to Vasculitis patients. I think you're best waiting until she sees the specialist and they can give a proper diagnosis.

    What I would suggest is to write down every single symptom that you can remember that she's had and take the list with you when you see the consultant. Don't leave anything out, even though it might seem unconnected. Consultants should use the blood tests, a physical examination *and* patient experience when diagnosing. This is particularly important with Vasculitis as the symptoms can be so varied and to the patient may appear to be unrelated.

    If she has rashes that come and go it can be useful to take pictures, a phone camera is usually fine. That way the consultant can see exactly what has happened even if it's cleared up by the time you see them.

    Glandular fever is a possible trigger for the disease so it's good that they are aware of that.

    It can also be useful to write down and take a list of questions with you to ask the consultant. If you don't, you'll probably forget. I know I do :) It can also be good to have two (adults) there. Two heads can remember things better and support each other as well.

    I'm cautious of referring you to our web site until you have a proper diagnosis but the "About Vasculitis" section has some useful background information :

    vasculitis.org.uk/about-vas...

    Just remember that even when you have a definite diagnosis you'll most likely not see all of the symptoms. Everyone's Vasculitis is different and affects them in it's own way.

    Hope this is of some help. Do shout if you have any questions and let us know how you get on.

    Regards,

    Richard.

  • Thank you so much ,

    Yes I have kept a daily log ad photo of every rash for the past month as have had to battle the system , calling consultants sectary every time a new or a symptom worsens . At school she attends half days and this way she can mange but , like tonight she s awful ! The trouble is it sees to be a illness that the sufferer faces quietly , no one really sees it , yet watching is awful the deteroation and pain . I have tried to research the illness in kids but this site is the most helpful , you want to know how they cope and all the websites lack emotion just a spill of facts .

    Thank you again for responses

  • Thinking of you and your family. I agree within what other people have written before. You are going to the best children's hospital in the Uk. So stay positive you will get the answers you need. Sending your daughter love and best wishes.

    Jill xx

  • Hi, I'd just like to share with you my experience of taking my daughter to the Vasculitis team at GOSH for the first time - she was 12, but had been having symptoms on and off since the age of four. We'd been round the houses many times by this stage, including a number of distinguished doctors telling us to "live a normal life and she'll grow out of it." Anyway, we walked into Dr. B's office and he said "I'm so glad you've come to see me. I specialise in problems like yours." I have to say it was one of the best moments of our life. From then on, we had the very best care and access whenever we needed it to a knowledgeable team of Vasculitis specialists.

    On the practical side, you will be there for at least two hours. The consultation will be a lot of history taking, followed by blood tests. If she has a rash on the day they may want an instant skin biopsy which was done up on one of the wards, and possibly also the medical photographer. I suggest taking drinks and snacks in with you! There are a wide range of drug regimes, and the doctor will probably recommend one to try for a couple of months. From what you say, they may refer you to the eye team as well.

    My daughter always found her trips to GOSH pretty stressful, so we always tried to have a nice lunch together after the appointment. There are some nice restaurants just North of GOSH inBrunswick Square, otherwise Oxford Street is good, but requires a taxi.

    I really hope that all goes well on Monday and that you get as positive an outcome as we did. With ongoing treatment, and many changes of drug regime she has got through school (although there were many days when we didn't get there till 11am) and has passed her degree. There's no question that the "invisibility" of Vasculitis is a great challenge to young people, a subject on which she is very eloquent, but with help from the specialist Vasculitis team at GOSH and now her adult consultant, she is doing well. Good luck!

    Veronica

  • Really useful post Veronica.

    I was just going to recommend your daughter visit our VUK Young Persons' FB group (https://www.facebook.com/groups/505201572880821/) when I realised she probably already knows about it :)

  • Thank you, you have been answered my question , it is reassuring to know others that have gone through the blank expressions of Dr faces and "come back in a few weeks if it syptoms still present " and thats from GP s and consultants .The weeks quickly become months and the months years , my daughter has not been right since the age of four , and yes this feels like the last chance saloon, I know they will look after her, but still have that nightmare of " what if they tell us to go away" and images of myself blocking doorways insisting on help for her . Not normal a dramatic person ! All you ever want for your child is the best and that's hard when the system around you fails, I even had to chase her referral as it had been buried under paper work and had meant to be an emergency ? Still Monday nearly here. Thank you once again

  • good luck for Monday will be thinking of you keep us posted love to your daughter

  • All the best for Monday. May it go smoothly for you and your daughter. My daughter is 34yrs old and battling with vasculitis. I am not happy with the cursory visits she has with the GP. However she is an adult and I can't just pick her up and take her. Keep us posted about Monday's appointment please. I live in Australia so we are about 10 hours ahead of you.

  • Will do and thank you !

You may also like...