I am really NEW on this site but have already found it helpful and supportive but one little concern of mine...
If I post something really catty I suppose I will get an enormous response really quickly...
If I post something asking for or offering help the responses are MUCH slower...
just an OBVIOUS thought...
Lets not lose sight of why we are all here - can we just not respond to the catty ones and stick to why we are here.
I think we can all help each other without getting off track...please.
Nelly
Hi Nelly
Please dont post anything catty as its over run with felines at the moment
I am a Mum of three - who has a 6yo daughter with something very much like JRA or 'something' that is undiagnosed. We are getting closer as paed rheumys are about to conference her case to decide her 'fate'. It has been a long road.
She been in and out of hospital 4 times since Sept '06, been on IV and oral antibiotics (!?), nurofen and panadol, indomethacin, naprosen and prednisolone and zantac - of these the pred is the only one that works (but she still feels sick) So as you can see we really need to get her meds sorted - our rheumy is talking injections (aaagh). She has had countless bloods, xrays, an MRI, 3 bone scans and 2 bone marrow aspirations (clear - yay!), ECG's, Echos etc. The scans and MRI show hot spots and inflammation that 'moves'. She has no evidence of arthritis in her bones - only inflammation. One of the things rheumy is looking at is Periodic Fever Syndrome - which could be anything, or some weird presentation of JRA...
Out of desparation, while keeping our wonderful Paed and rheumy, while they focus on the diagnosis, we have started to see a naturapath - who is very 'weird'. He suggests that she has chronic fatigue syndrome - my first reaction was "well yeaH, DUH!" of course she would have after everything. But I am open to anything and if something natural may work - let him go for it. we are giving him 4 weeks and then we'll see. Its better then doing nothing while waiting for the 'big docs' to figure it out.
So we are all exhausted and keep telling ourselves we are getting there - to what we don't know, but I think the docs are getting closer.
Our little girl has been very sick - pain everywhere, fever, fever spikes to 41, headaches, dizziness, insomnia, nausea you name it.
She is having a good day today and had a great easter weekend on holiday (the 'mystery' subsided for a couple of days - not as extreme as usual)
So thanks for asking about us. How about you - by your user ID I figure you been through an anwful lot too - I hate to imagine. Hope you are well - most of the time?!
Nelly
Oh gosh I hate it when its the kids that are ill. Bless her heart.I really hope they find out what is causing it all and cant treat her accordingly. It must be so frustrating for you too cause i know as a mum myself with a child in pain, it becomes all time consuming.
Yeah Pincushion seemed like an ideal name........i am full of holes from all the injections.maybe all the badness will seep out
Movies and junk food. we've been doing that at our house too!
I love the kids - but school was invented with very good reason.
Hope you are feeling better soon Ha! I am not the only one with kids out on Easter holiday from school YAY! I can't wait for them to go back!!! Is it Monday yet??? GO TO SCHOOL!!!!
LOL.
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