Symptoms seem to be increasing but change hourly , daily ,!

[Motherof4]

Hello , back to hospital next Monday for MRI and had to have bloods taken today due to increase of symptoms and fever last night .Is it common to have knees be in pain but then flash and swell purple and be in absolute agony last from ten minutes to all day/night. Her fingers have been suffering with this and yesterday was at school for an hour when I got a call asking me to get her as she could'nt hold a pencil to write , she had an awful day . Had to carry her to bed as could'nt weight bear . Today similar and the knees and feet becoming more frequent with this purple rash and heat at least three times today and twice unable to bend her leg . Also does anyone else get content sore throat and dry ? She also keeps saying things taste funny ? She also says every thing hurts all the time but then bits of her hurt more . Can't believe how brave kids can be and how sad it is that they just try and get on with it without fuss as if it is the norm. Also - sorry ! Stabbing pains lots of this going on , chest, stomach, fingers, toes , eye, back of head . I am using heat pads, hot water bottles and electric blanket which I have to say is amazing for relaxing the muscles for her , but gets fed up with it if left on to long . I know it's hard to truly comment with a loose diagnosis I of systomatic vasculitis , but for me it really helps to understand and ask the right questions when I next go. Many thanks

[Ayla Volunteer]

It really sounds awful, what your daughter has been, and still is going through. I remember you writing before. I am glad she is having lots of tests and, hopefully, her medical care team will have an answer to what is going on soon. When is it you see the consultant? I think you are doing all the right things in making her as comfortable as you can and in pushing for help when you need it. Just make sure you keep on reporting all her symptoms to the specialist and ask for his advice if she seems to be developing new ones or not coping well with symptoms he already knows about. Keep a list/diary of what is going on too. Take photos of rashes, ulcers, swellings, changes in colour of painful areas, all this, and show the diary/list to the consultant at your next appointment. If, at any time, you feel her suffering is really too much, then don't hesitate to ask for an earlier appointment, or take her to A and E. Don't worry about bothering the consultant, he is paid to care for his patients and would not expect you to watch her suffer.

You do need an accurate diagnosis. Systemic vasculitis is too general, though her treatment is likely to be the same, whichever form of vasculitis she has. What medication is she on now? Do you have confidence in the consultant and his team? Have you looked at the Vasculitis UK website? It will help you learn more about the different types of vasculitis, their particular symptoms and the normal courses of treatment, etc. I wish her, and you, good luck. Let us know how things go.

Ayla

[Motherof4 in reply to Ayla]

I am photographing her all the time, and daily diary . We see the consultant on the 9th August , should be having more tests up to then. They said they would have her on the ward when she went for MRI and see ENT but that has' nt happened. Medication is naproxen which really is'nt helping. I have tried contacting the consultant but its quite hard to get hold of the right person , I just seem to leave answer phone messages. I am thinking of bypassing normal route and emailing consultant directly and tagging on some recent photos. I have a feeling I will not be popular ! The Vasculitis website is brilliant, I have read and retread all the time , the key I think is to learn and learn. Keep you posted.

[Ayla Volunteer]

Naproxen is a NSAID, no doubt you know. It won't be doing anything much and I am surprised your daughter's consultant is not seeing her until August. That seems a very long time to wait. Tests shouldn't take that long, especially if your daughter's symptoms are so distressing. I am also concerned that your daughter's consultant seems so elusive. Can I ask which hospital is dealing with your her?

Ayla

[Motherof4 in reply to Ayla]

I thought it was along time too, Gt Ormond Street we are now under. I am ringing them again tomorrow as she has 'nt been able to weight bear twice today and has a low temperature when I checked recently but is sweating all over ? To be honest the last nine months have been a battle . Since she had glandular fever a year ago I have had chase and chase, ring secretaries , hound my GP . What I really get upset about is they see a little girl trying to make an effort in there clinic to be happy, funny and good , they don't see the other side. She won't complain about pain till we leave the room and blood test have shown (previous) Esr evens high , white cells low, she also has a low pulse for a seven year old - saw GP last week as she had chest pains and they said had anyone mentioned it to me , no ! But have they followed it up or advised m e to , no. Today was awful day and I will not let it go tomorrow . No one o take my call this evening as 9 to 5 advised o go to A and . I will do this if the same happens tomorrow.

I shall become. Pest !

[02061949 in reply to Motherof4]

Becoming a PEST seems to be the only way to go. Just asking doesn't work. We are in Australia and there isn't anywhere central to go to. My daughter is just so sick of seeing doctors, getting scripts filled and....coming back in a fortnight without getting any better.

[Motherof4 in reply to 02061949]

Is ' nt it awful that the only way to get anywhere these days is to kick up a fuss and make yourself unpopular!

It has worked though , saw consultants at local hospital Tuesday under the guidance of GOSH, and we are being admitted next week in the hope of taking biopsies of either rashes or mouth ulcers. Again at the local hospital, but much easier that way so siblings can visit etc.

I feel sorry that you have no where to go! Your poor daughter must be exhausted just from explains herself every time she sees someone. Life is harder enough when your ill and then not to have continuity from health care.

[Ayla Volunteer]

I believe Great Ormond St have a good reputation, this is puzzling. Let us know how today goes!

Ayla

[Veronicab Volunteer]

Hi there, so sorry to hear that your little girl is having such a rough time. Comparing with my own daughter at that age, it does sound as if the odema are coming up more aggressively than was our experience (2-3 hours to come up then gradually subsiding over 72 hours). I recognise the fever with normal temperature - that is part of the battle going on within her body. I certainly agree with Ayla that she can't continue in this state, without a prescription for specific Vasculitis medication, until August. I would persevere with trying to get through to the Consultant. From what I know of GOSH, it sounds like the appointments team have given you an automatic three month follow up appointment. We often had to phone up and ask to be seen sooner, so don't feel embarrassed about doing this.

Trying to think of practical things to help = why not teach your daughter the 1-10 pain index, and log that in her diary (e.g. 1= no pain, 10=the worst). Then, when she gives a 'brave' response to the doctors, you can contrast it with what she's been telling you at home.

With regards to school, I would start educating them about the condition, and setting some expectations. GOSH have a good leaflet on their website that you could print out for the school. They will need to learn to make allowances - there will be days when she can't write or walk - my daughter even ended up dictating one of her GCSEs because she woke up with such bad hands that morning. Good luck with your phones calls.

[AndrewT]

Dear motherof4,

So sorry to hear about your daughter, what a brave young girl! I can't add much, if anything, to the advice above, just a prayer that she 'gets better'/improves; which feels rather 'inadequate' sorry.

Please do send her my, all of our, love will you.

Very best wishes

AndrewT

[Motherof4]

Hi just got back from local hospital as I did take your advice and rang GOSH who said that they would like bloods and for someone to see her . Local hospital was really attentive for once saw three doctors two who use to deal with her , like buses ! They are all of the mind of pinning down which systamic vasculitis , talks of biopsies . Dr at GOSH going to see us after MRI scan on Monday, I emailed her photos ..... Thank you everyone , I was in two minds but so pleased I called and how nice they all where

[lisa-ranyell Vasculitis UK Volunteer]

Hi Motherof4

I have only just seen this thread and am so glad that you have contacted hospital and moved things on. Please don't ever think of yourself as a pest to consultants, you are not calling because your daughter has a sniffle, she has a potentially very serious condition and needs close monitoring, August was completely unacceptable. I know from my own experience that you can feel like you are bothering them, but you wouldn't think twice about 'bothering' a plumber if you had a leak in your house and the consultants are there to do a job just the same. I will keep my fingers crossed that you both get some answers on Monday. All the best.

Lisa x