Just wondering - how 'good' are everyones 'good days"?
We are learning - 6yo daughter in process of trying to be diagnosed with 'anyhthing' (try not to repeat myself from other posts!)
We seem to be establishing a real pattern or cycle in her illness. Generally she always feels rotten - her "flares" (?!) last 10-12+ days - really high fevers up and down, severe pain - just really sick - then everything subsides for about a week or two - but she can still feel like crap, slight fevers, miuld aches/pains but her last couple of days can be near perfect!
She is great today - we used to get really confident on these days but have learnt not to as it smacks her back down again!
Her temp for the last couple of days has been perfectly NORMAL!!! and she has not cried with pain at all. Last night she felt really nauseated - so I suppose it is coming back. On these good days we go crazy and let her have fun, friends over etc to make up for lost time!
But thats what happens. As sudden as it stops - it can start BIG TIME - she could very likely crash tomorrow and have another 12 odd days of severe pain and illness (can I hide now I wonder??). I HATE it - as does she.
Is this normal for these types of things. Do you guys have really good days?
When she crashes next we are heading beck to childrens hospital for more tests. Damn it. I'd love to settle into the false feeling that it is not coming back (as we have done in the past)- but I know it will - soon. These good days don't last very long at all - normally.
We are truly grateful that she has any good days at all - there is always someone worse off - but it is kind of cruel for her as she hopes and prays on these days that she is "better" and gets really emotional when it comes back.
Is this normal - or could this mean she is getting better - or does not have RA???? Her bad days are REALLY horrid.
Nelly
Dear Nelly, I am so sorry this is going on and on for you. You are so Brave and your little girl is so lucky to have such a great and caring mom. Oh, dear I feel her pain, it is a strange stabbing,burning kind of pain like nothing else. I'm so sorry she can't just have all good days. (I've never had throwing up with mine), even a the worst, and my temperature was only slightly elevated. Everyone is different and for a child with a little body who knows what this does????I hope some JRA people can write you .....I'm thinking of you...sarahThanks sarah,
she has never thrown up with it either but has been severely nauseated over toilet bowl - or on floor of toilet - bucket beside bed - not very nice. and yes, she gets sharp pains as well as general aches.
I think the regular spiking fevers are really throwing the doctors off.
she is a 'medical mystery' at this stage. it sounds so special but it really sucks!
Nelly
I know, soooo sorry....
I can imagine you all must feel like you are going crazy. What to do??? One foot in front of the other.....one hour at a time, you are her link to 'normal' , try to stay calm (I know that's hard) but you will get through this, I'm sure. You are doing everything you can to help her.
(I've jsut been through undescribable days of pain, insecurity, not knowing what to do, screaming!, taking every kind of pain killer I could find....so I know what your days are like....normal was 2 doctor visits and a trip to the emergency room!! Hospital stays..)
sarah
Sarah I am so sorry you suffer so much!
I have been at the 'not knowing what to do' stage heaps! At one stage after crying beside her (silently!!) during a really BAD night I just felt like noone could help her - no doctors or hospitals - she needed to go to hospital but I knew they couldn't help - our docs had no clue....yes I probably have gone crazy already.
No, we are having a good day today so I am very positive right at this minute so I will enjoy the moment!
(boy, you really do understand!! I can Sooo relate)
Do you have any good days sarah? I hope so...
nelly
Nelly, this is really tough on your daughter and you, and my heart goes out to you. No parent can stand to see their child in pain and frightened - it is the most heartbreaking difficult time for you all. I can totally understand why you would want her to really have fun on those good days, and if truth be told, would probably gladly bear her pain yourself.Pammy,
we are 3 hours from Melbourne and its childrens hospital.
She was there for 12 days last time and very sick with spiking fevers and some pain. Her pain has been much more severe since then so it would be good if they could see her in a really bad bout of severe exhausting pain. After her next visit I think they will have a proper plan to manage her illness - with or without a diagnosis!
My paed rheumy has been on the phone to me soon after her severe pains - so he knows how bad it is and how distressing! He is working really hard at getting answers and I will try and speed them all up next time!
hopefully there will be more answers soon and I can't wait to post you all with our diagnosis!
Maybe it won't be RA and I can stop bothering you all with my long winded posts!
Hi Nelly, all we can do is try to support you and offer you our prayers, I know how tough it must be, its bad enough us adults getting it but a poor child, who couldn't possibly understand, hell, even the Drs don't understand it at times, I hope and pray it is not RA, but some sort of temporary thing, God Bleess and keep positive. Kind regards Janie. (Hervey Bay.)Dear Nelly, How was your night? (it is morning here, 6 am)
Please don't stop posting even if her pain isn't related to RA we all want to know how she (and you) are doing. Would you mind if we know her name? Poor little girl......
I know what you mean about the hospitals not helping! That is not a good place for a little girl to be, home is much better, unless they can help!!
I woke never knowing what to expect. During the evenings the pain would begin and increase during the night. (nights were the worst for me, which I can't explain). The pain would move around with this RA you have it in your heal, then knee, then across your neck and down the arms (that's what I had),
If it is RA the other pain killers (except oxycodone and probably children can't take that as it is a serious narcotic) didn't help. For some reason the MTX, prednisone, remicade mix is working for me. this is such a different disease that only supressing the immune system works?!
My husband would sit beside me, hold my hand and never left me for 3 months! That's all you can do until someone stops the pain for her!!, then you can figure this out. How long has she had this? Do you trust your doctors to work this out? it sure sounds like RA to me.......She can't keep hurting like this.
I'm so sorry, sarah
Sarah,
She has had all the severe symptoms (spiked fevers, severe pain) since September last year, when we went to our GP and I just had this really bad feeling it was something major. then the roller coaster ride began with paediatrician, rheumy, hospitals etc...
She had a history for about 10 months prior to that of feeling sick an awful lot with achey legs and feet . I dismissed the achey legs as growing pains (!!) as she'd had them since she was about three - we even had a podiatrist for a few months who issued her with orthodics to help the leg and arch pain! obviously we stopped seeing him when there was no improvement.
The feeling sick started at the end of kinder and the start of school and I remember being a bit baffled by it but sitting her down to explain " you are not sick - that is how it feels when you are nervous"... all of a sudden I thought I had a kid with severe nerves and maybe even a pschological problem as I could see she was physically feeling really sick but with no apparent reason...she loved kinder and school was on the same campus with her same friends. (such severe nerves was really out of character)
I feel so bad for that now! I even mentioned her achey legs and "severe nerves" (not!) to the visiting school nurse who reassured me with a follow up phone call that it was all normal part of growing
Once we started seeing docs and I did a bit of my own research I realised these things were most likely part of this "thing", even our rheumy explained it as something that has possibly been "grumbling along" for a while until it really reared its ugly head with chronic pain and fevers in September.
She was treated for osteomyelitis (bone infection) twice (!) in the beginning - on IV antibiotics in hostpital as bone scans showed a hot spot (that moved to another bone later). she was on iv and oral antibiotics for about 3 months straight! I was always suss on some sort of RA or Stills - but docs had to begin the process of illimination and osteomyelitis was on the top of that list!!!
since then MRI has shown 5 inflammation spots - xrays clear. Her hot spots keep moving - very weird!
I will stop now - there is too much to tell - but she has been through so much with dopey grown ups who have no clue - parents, teacher, doctors...the poor kid must have thought the world was crazy if she could not trust or depend on grown ups. I have now told her we will always believe her - and we do - she is the only one who seems to know when this thing is coming.
We trust our paed rheumy 100per cent - I personally like a doctor who will admit it when he does not know - but still looks further.
But I have learnt you can only trust the medical profession so much - as there is so much unknown. so now we have started seeing a naturapth as well, who is weird, but does not hurt or prescribe drugs so hey - it's worth a shot! Hubby likes him more than me - I am a bit of a sceptic but as long as he treats her well I will trust hubbys instinct.
Sure enough last night she was awake with achey legs and nausea. She is ALWAYS awake for a couple of hours in the middle of EVERY night. So sleep deprivation (on top of everything else) is also taking its toll - on all of us !! I have two little boys, aged 5 and nearly 2 as well and this really affects them too.
Thanks for caring sarah! You seem very selfless as I can imagine the hell you go through too, yet you still make time for an 'ignorant' learning Mum like me. Your insight has meant heaps as what you explain is very similar to what our girl tries to explain to us.
Nelly
Keep us posted on how she is doing. Poor little thing. This just breaks my heart. I hope she continues to have good days. Nelly, the fever spikes are not normal for RA. I don't know about JRA. But the first thing I thought of was Lyme disease. Do you have that where you live? If not, get her tested for it. It's an expensive test. But the fevers and the nausea make me think something else is going on. There are forms of infections arthritis. Start doing some research on all of this.Thanks everyone!
Deanna, she has infectous disease doc who sees her in hospital too..they have checked for stacks of diseases/infections, doing bloods all the time. She has some blood cultures still "on the cooker" and they can take months for some of the weird diseases to show.
As for sleep - she has slept 12 hours every night absolutely guaranteed since about 6 weeks of age (I know - I was spoilt back then). The waking has only happened since this 'thing' so I am positive it is a symptom or effect of her illness. Once we have a diagnosis I may deal with that but she has enough docs etc interfering with her at the moment.
She is a medical mystery that is for sure. They have practically ruled out infections - see her hot or inflamed spots disappear al on their own and move to another bone - very unusual. There is a 'new' type of osteomyelitis that moves bones I think its called chronic multifocal osteomyelitis (CMO) - they have not completely ruled it out.
She either has too many symptoms or not enough to diagnose anything in particular so looks like we are making it up as we go along. One thing they always ask about is rashes. apart from a couple of blotchy spots during spiked fevers - she doesn't get one! trust me - we keep looking!
For now, it sucks.
Will let you know if anything new happens. A diagnosis - a cure???!?
nelly
Hi Nelly, we all know as parents , especially if we have had chronically,( my son was sick for 5 years before he was treated for sever allergies, milk, chocolate, dust ,we lived in Nevada!)sick children that you are the most important person in her life. She needs you to sooth her, give her her favorite foods, 'be there beside her', so she knows all the time she 'has you'!. Children are stronger than we think and they are little fighters! and want to be well. Your darling little girl has been through a lot and I hope you have one GP, or one doctor who can guide you through this...somone you trust to get through the system.
We are thinking of you and hope your 'every day' life is going smoothly.
Hugs Sarah,
my son is 47 years old and I still cry when I think of the pain of infected ears! He talks about it sometimes 'remember all of those bad ear aches....it gets us.
hi nelly, i have severe psoriatic arthritis yet not even a spot of psoriasis on the skin. it was trauma which bought on the pa . with pa the hot spots/pain can move from one second to another. it can be in one joint or many. they can only diagnose it when ethery thing else has failed diagnoses. i am not saying it is pa but it could be worth finding out about. my aunty has psoriasis on the skin and no pa and my mum only has pustular psoriasis on her foot but they say thats enough for it to be pa. the blood tests always show severe inflamation and i have fevers on and off. my son has only one working kidney and i know what us mothers go through when our kids are in pain. all the best. will be thinking of yas . allyAlly,
my mother in law and her identical twin get psoriasis on the skin ( duaghters Nan)- and I know they had it severe at one stage all over - but now occasionally on the scalp only. Interesting. will mention to our rheumy next time.
Our daughters pain certainly does move from one second to the next especially during the really bad bouts - she'll go from grabbing her head, to her ankle, leg, to her fingers etc - vey horrible to watch.
thanks for the insight -I will follow it up for sure
Nelly
Dear Nelly, that was a great hint from Ally to look back into your child's family history....years later I found out allergies were big in my husband's family side! (would have helped to have know that sooner, and saved my son a lot of pain and suffering.
take care, sarah