Lots of test !,,

[Motherof4]

Hi , finally can sit and let you know how we got on ( have been in local hospital since Tuesday with other normally healthy daughter with suspected appendix - lymph glands , never rains it pours) . Meet the registra first who took history and begain to feel like here we go again as she played down the sudden lose of vision , she said the blood test would tell her all she needed to know ?! Both myself and husband where shocked as we had been told that this was the place and feeling no different . The main consultant then came in and I again said about the more recent problems ( had printed out her symptoms and dated as much as I could , plus a few prints of photos I had taken, also day to day account.) she listened and then promptly ordered MRI scans for ASAP and ENT for ears to be done ASAP on the ward . went on to ordered 18 viles of blood ( poor thing looked very drained ) and a ECG for there and then . Noticed lupus popped up a lot along with vasculitis as a heading on the blood forms . Waiting on dates now , but said no diagnosis but systomatic vasculitis ?

Wednesday she told my husband that all the colours are different when her glasses are off ?... And her wrists are hurting . She has also been given corrective insoles to help where here ankles have become weak . The physio noticed how warm they where , later that night we watched her knee change colour as she screamed in pain - hideous ! Tonight her heart area hurts , trying not o lose my cool as I watch my kids fall apart this week ! I think I will ring GOSH ' s rhemotology bleeper they have given me and tell them all the new developments.

Keep you posted !

[Jann]

I cannot advise you on ringing the bleeper or not. I just want to say stay strong and keep fighting for your children. It must be so hard seeing your little girl like that. If I could give you a hug to help you to keep going and pushing for her I would.

[Ayla Volunteer]

What an ordeal, but it seems like this could be the darkest hour before the dawn. After all those tests your daughter should very soon be given a definite diagnosis and begin the correct treatment. After this, things should rapidly improve.

I would use that bleeper, as you plan to do. The consultant needs to know how bad things are and contacting them will make you feel more supported.

Thinking of you. Do let us know how things progress.

Ayla

[Motherof4 in reply to Ayla]

thank you so much , can I just ask if you know about ECG results , I was given the results , to give to consultant , I think they thought I was being seen again.Have no idea if they look normal ? Do they use them to gage pain ? May get nurse at local docs to put my mind at rest. Really do not want to become obsessive , keep telling myself to be normal for Her , so that its just another day . I think ( I have had ulcerated colitis for 20 yrs and recently rheumatoid arthritis in spine) that you must never let the illness become you , you control the illness , no matter what state your in. I will contact them as they did say to if new developments accurate and it all gets logged on file , builds a history I guess. Always worried I ' ll come across as an overprotective mother ! Thanks again .

[Ayla Volunteer]

An ECG test is looking at her heart rhythm. Has she been having heart rhythm problems? If not, this is likely to be part of the thorough once over the consultant is giving her. You need to get the results to him as soon as you can but don't worry about them. It might be a good idea to tell them that you have the results when you bleep the hospital, they should then tell you what to do with them.

You should be receiving another appointment with the consultant, to hear about the test results and plans for treatment and, after that, a series of appointments to see how she is getting on. Did the consultant say this when you saw him? If not, this may be another thing you want to ask when you bleep.

I don't reckon you are an overprotective mother, if you weren't worried about seeing your daughter in pain and distress, and you weren't trying to get the best for her, then something would be very wrong indeed! Keep strong and keep on being her advocate, she really needs you to do this.

Ayla

[hamble99b Volunteer]

I think I'd use the bleeper. I'm sure they'd rather you use it and get answers , than not.

let us know how you get on, but you know your priorities.

regards,

sandra.

[Sarahjh2004]

I would bleep the team or alternitively ring the secretary with your concerns and ask for some advice. I am sure the GOS consultant would want to be in the loop. I have a child who is under GOS and understand about the "should i, should i not call" decision. In the end i always called the secretary. Unfortunately local hospitals often don't have the specislist knowledge in the condition. You mention lupus. Have they tested her for anti c1q antibodies? I ask because HUV/HUVs are similar to SLE, a form of lupus In the sense they present with the antibody.(rare antibody)

Good luck and I hope your little girl feels better soon.

Sarah x

[Veronicab Volunteer]

Hi there, I've been thinking a lot about your little girl, and am very glad to hear that she's been taken seriously, and is having a long list of investigations. As you say, there are so many similar but different conditions in this area (SLE, RA, vasculitis etc.), and the diagnosis method does seem to be a process of elimination, aided by the various blood results (should have warned you about the number of blood tests - our record was 35 in one session!). In my experience the Rheum team at GOSH are very happy to hear from parents in crisis, and do act very quickly if required. Since your daughter has exhibited new symptoms since the appointment, I'd definitely support those who suggest you phone up. Be prepared to have to rush her up there, though!

I really hope your daughter is feeling better today, will be thinking of you,

Veronica