I am obviously tring to diagnose my own daughter with no technical understanding of any of these conditions.
I am currently thinking along the lines of Lupus but am probably really wrong.
I have a question - Maddi is sensitive to cold and particularly rain. This may sound weird but its true. Rain on her skin can hurt. And being out in the cold and rain brings on bouts of pain and illness to varying degrees - I don't think this happens in Lupus.
even when doing swimming lessons the water seemed to hurt her (it was heated!) and bring on bouts of pain and illness. wether this was due to the activity or the fact that it was always cold when she got out, I don't know.
Anyone relate to this?
I feel like if she didin't have this sensitivity to cold she may have been closer to being diagnosed with lupus (no doctors have told me this - I don't know what they are thinking - I am making it up myself due to the questions they keep repeating to me)
Doctors were thinking a Periodic Fever Syndrome but I am sure it is not - as there are too many other symptoms and she is sick and in pain in between bouts of fever - there is no real pattern.
Do I sound desparate? I am posting all over the place and probably not making any sense. I may be losing it just a little but I am entitled to bouts of madness.
Love to know what you all think.
I know that cold really bothers me and sometimes a hot shower does to and I have ra. Cold actually takes my breath away and I get really soreWhy are you trying to self diagnose? I'm sure I missed it somewhere but it is SOOOO important for you to bring her a ped rheumy, or even to a childrens hospital. Is there either of those near you? If in fact she does have JRA or Lupus it needs to get treated ASAP. I cant imagine what you are going through having to see your daughter in the pain that she is in. How old is she again? Please Please bring her to a dr and have her looked at...
~Shannon~
Shannon, she is 7 and has a paediatrician and the head rheumy and our rheumy at the childrens hospital all working on her case. They don't know what it is called as her symptoms apparantly don't match perfectly to any condition they are used to. She has been on heaps of meds that we have just taken her off 9 days ago. They have suspected possibly some unusual presentation of an arthritis or a periodic fever syndrome.
So while they think (and they are working hard - I hope), I send myself crazy every now and then trying to look on the net etc for any ideas.
I know her symptoms and triggers inside out but, like the docs, can't make sense of it. Although i really do not think it is a PFS.
Oh - and I forgot. In the very beginning I was thinking Stills Disease but was talked out of it by docs early days - however I am now thinking again that it is still really possible and I think I will start quizzing the docs along these lines and ask them to convince me why it cannot be these conditions......
the problem is they always say - "well possibly it could be...but we don't know yet"
she has had stacks of tests and hospital visits.
Yep, driving me crazy.
ohh hunny my heart breaks for you and Maddi. I hope that they come up with a reason why she is having the symptoms that she is having. How is she doing off the meds? Hmmm okay the only thing that comes to mind is when I had the pinched nerve in my neck. It caused my skin to hurt along my shoulder. Whenever I took a shower, it was the most painful thing. The water touching my skin was TERRIBLE. Perhaps you can ask them to look in the direction of nerves? Just throwing it out on the table there!! Perhaps without the naproxen she's a bit sensitive to pain. Is it possible she's got a low-grade fever? I've noticed when I'm running a bit of a fever that rain kinda hurts. It's weird - it feels good in a way, but it also hurts.Thanks guys!
She is doing well off the meds -its only been 10 days. She is not perfect, still feels sick often, and the odd 'ache' ( and last night her first headache since being off it). But it is much better than the constant nausea the naprosyn was obviously causing her - I will never put her on it again - but this means the next meds are more toxic.
Fingers crossed taking her off the meds wont cause a flare up in a couple of weeks - who knows - we can only try what we think is best at the time...
she has been sensitive to cold since the beginning - not just while on naprosen.
I will ask docs about the "nerves' thing. At one stage I asked about a neurological possibility as in her worst bouts of waves of pain she seemed to 'disappear' in between and her eyes were 'far away' - but her MRI showed nothing abnormal in the brain.
She has had lots of fevers throughout htis - spiked temps out of control - but not for probably 3 months - so maybe the naprosyn was controlling this....
Thanks for your replies - the cold thing baffles me and the docs as it doesn't really match up with her symptoms and is apparantly extremely rare for cold to bring on real pain in a person. (and in the beginning the docs gave me answers like "well she is skinny..." or "no, no , that can't happen" - in the end they are listening and know it is true - I told them I don't make it up as I don't want her to have any disease - but it really does happen! Now the docs are on our side and just as baffled as ever.
It sucks. I thought she was going really well on half days at school - but this morning I kept her home as she felt sick - and I know she odes. Some days I find it easier than others to 'push' her into school - but yesterday I pushed her and she felt sick the entire morning - then I feel like the bad parent!!
I just hope we are doing the right thing...
thanx to you all.
Rare or not - i think we must be making our own new 'rare' disorder - damn it!
One of the first things that brought to the attention of my grandparents that I had an issue was extremely high temperatures and extreme pain mainly at night. As for the cold, I have more swelling, aches and pain when it's going to rain, seasons change to fall, winter or it snows. I don't have issues with rain actually causing me pain when it hits my skin. I hope they figure this out for you soon. My thoughts are with you and Maddi.yes cold, rain,dampness causes pain in RA. I dont really understand the idea of rain hurting when it touches her skin,but maybee its just what she thinks because everytime it rains she hurts,but probably do to,the change in pressure, not the actual rain drops.
kel
I was kind of thinking along the lines of Raynauds. do her hands or feet turn really white, red, or blue? I may be way off, but I deal with this and really hot, or cold water bothers me. same with the air outside. Those things make my hands and feet ache something fierce. I usually wrap my hands in a heating pad and watch a little tv. doing a few dishes is comforting.
Maybe you could give maddie a small wash tub with warm water, a few bubbles and food coloring and a few measuring cups to play with. or she may have small babydolls who need bathing... you get the idea
Dramatic changes in weather - particularly drops in temperature (which happens all the time here on the coast in Victoria, Australia) definitely brings on a 'flare' - sickness, achiness and pain - or as she says , she feels "miserable".
I am almost convinced that she has some sort of kids arthritis - Stills perhaps?? This has gone on too long and has too many recurring symptoms typical of these diseases.
We are at the point that we really need to know now what it is. Maddi needs to know more than me. She is a smart kid, and no matter how many times we tell her she is not dying, she is not convinced because she says "but how do you know, the doctors don't know what it is" - and you know docs - they are not into guaranteeing to anyone that they won't die unless they can prove it.
Plus she knows she was tested for cancer and although it was clear it has made her aware of her mortality! Too much when you are 7!!
So she needs an explanation and a bit of a guide as to what 'may' happen next.
Hopefully we will find out soon enough.
Has Maddi ever had the Chickenpox. The virus..shingles can leave behind some nerve damage, and that is what I thought of when you were describing it. I have a friend that had shingles and she has nerve pain all of the time. no chicken pox. Has been around 'epedemics' of it at kinder and school before but never caught it. and can't have vaccine to prevent it now either.Hmmm you know it's still worth asking the doctors about. Even if she's never exhibited signs of it on her skin, perhaps her body is somehow harboring the virus, and she's showing it in this way? Instead of the typical itchy bump way. I mean, we already know it can cause shingles, why couldn't it behave differently in other people too. It's just strange that she's been around it, and never got it. It's so unusual to find someone who's naturally "immune" to it.Well, I have OFTEN told the docs that she never seems to catch the flus and viruses that the family gets. This has become more and more obvious. she has two younger brothers and they have had some shocking flus and viruses and she doesn't appear to get - yet she is always sick with her own symptoms of nausea, headache, pain, aches etc.
I definitely think her immune system gets 'confused' and attacks her body or at least presents differently to 'normal' kids.
Docs scratch their head and give me the silent "Hmmm...".
Obviously I haven't said the right thing to 'click' their brains onto what it is yet. They are all really serious 'thinking' doctors and though it could appear they don't say much and ignore me - I get the impression they are constantly thinking and their brains are too busy.
Sometimes I feel like I tell them too much. I don't know how many times I have said "this may be irrellevant, but....".
The best advice I ever had was a training paediatrician at our local hospital - once all the big docs left the room and obviously sensing that I did not know what to mention or how far back to go - he told me "write it all down, record everything as it may well be very relevant one day to someone".
With that advice I wrote 6 pages of her history from about age 3 - and I took it to the childrens hospital with me on our first admission and they were all over the 6 pages - it really did get them jumping to our attention.
I must write a list of questions next time - there are so many things you guys have mentioned that sound very possible - and I don't want to forget.
I think we are onto something - just what exactly we are yet to find out.
I will be looking for many more explanations when I go back to the rheumy on october 11.