i don't want to waste anyones time as iit seems you all have a lot to deal with - my heart goes out to you all!!! ( I also posted this on JRA topic)
My problem is my 6 year old daughter is in a lot of pain with no diagnosis yet and I think we may be in the early stages of JRA, Stills disease or something??? I would love to know what you all think or if you have similar stories- maybe you can tell me we are on the right or wrong path?
As a Mum I am finding it very difficult as I can't make her feel better.
She started with spiking fevers that dropped as quickly as they started, associated with feet, ankle and leg pain. Our paediatrician treated her twice (!!!) for osteomyelits on IV antibiotics as bone scan showed a hot spot in her foot. Second bone scan showed hot spot had moved (Its not supposed to do that!). third bone scan showed all clear so Dr thought she was cured until symptoms came back 2 weeks later.
She has always had achey legs and feet - ever since I can remember - we thought growing pains.
Now we have a rheumatologist doing his best to diagnose what is apparantly an unusual presentation of 'something' as a recent MRI showed inflammation in 4 spots (3 more new ones).
2 bone marrow aspirations were clear - so its not leukemia. YAY!!!
Stacks of bloods - ESR's go up and down - proven nothing in particular yet.
Here is a general list of all of her current symptoms that appear in bouts - or 'flare ups' however she always feels generally unwell.
-pain in feet, ankles, Knees,shoulder, back, forearm, wrist, fingers, thumb, head, abdomen, ribs - sometimes separately - recently all at once!
-headaches and dizziness a lot of the time
- no rash until 2 days ago when a blotchy,speckled hot rash appeared on her face during an extreme flare up.
abdominal pain
-severe nausea
-loss of appetite
-feeling like she can't breathe in her neck (but she can - six yo words!)
she had 20 days of predniolone and has had no fever for 4 weeks - uintil today - but it did not spike as high as they used to.
Now she is still on indomethacin but has pain and sickness every evening.
2 nights ago she was in so much pain that to me it looked very similar to labor. extreme waves of excruciating pain and in between she would be exhausted and dizzy with a headache and nausea. this lasted 3 hours and now I don't know what to do!!
I am currently waiting for my dr to return my call to figure how to stop her pain!
We are certain sudden changes in the weather definitely increase the severity or even bring on a bout, as does over exertion or even normal everyday 6 yo activities!(trying to make doctors believe us on this point).
Any ideas or views? I would love to hear from ANYONE. what do you all think???
I may have left some things out - its been a long road already.
Nelly
Wow, you and your daughter have a lot on your plate right now and my heart goes out to the both of you.
I have not heard of the nausea and dizziness along with JRA...but I did develope RA in my 20's and did not experience that. The aches and pains and fevers and hot spots sound like JRA. The up and down ESR's do too. I used to run a fever when I flared until I was put on meds. It also sounds like she is battling some fatigue also which is a huge part of RA. The rash could be an indication of Psoriatic RA. It is just so hard for us to tell you that it for sure is since we are not docs. We can only tell you what our experiences are and what we feel could be going on.
The poor baby. I so feel for both of you. I feel one if the hardest things to go thru is to see your child in pain and have no clear cut answers from the docs to help resolve the pain. I just wish us moms could really kiss everything and make it better.
Dear Nelly, I feel your pain and your little girl's pain. Poor little thing....Yes, you must stop the hurting first, as the whole body is affected and it is hard to pinpoint 'where' the pain comes from. There are so many drugs now that I'm sure something will help her. Prednisone (for me as an adult, helped), but I don't know about little ones to give it to. Please keep writing and letting us know how she is, we do care. A sick child is the worst.Nelly I was Dx'd with RA at age 47 so know nothing about JRA but wanted to let you know that you and your daughter will be in my thoughts and prayers. It must be a very difficult thing to be dealing with.
I was wondering if the nausea might not be coming from the extreme pain or the Indomethacin. Just a thought.
I don't know much about JRA but your description sounds similar to the systemic form. There is a write up about it at http://www.arthritis.org/conditions/DiseaseCenter/jra.asp.
Is the rheumatologist that is seeing your daughter a pedatric rheumatologist? They are harder to find but have the experience of being a Rheumy and understanding children's diseases.
The other option to check out if they don't find something soon is to try and get her to a children's hospital.
I'm sorry you have to see your child in such pain, nothing is worse than that. But all you can do is to keep fighting for her to find the answers and comfort her when she is hurt. Your love is a balm to her soul that no doctor can replace. Keep searching and the answers will come. Stand firm with these doctors and insist that they be aggressive in treating her. They need to forget that she is six years old and remember that she is sick. Sometimes people don't realize how truly ill a young child can be. Then they need to understand how being 6 affects her treatment.
My thoughts are with you.
I am so sorry. Has she been checked for lupus? I hope they find the answers quickly and your daughter feels better real soon. The nausea and dizziness could very likely be caused by the indomethacin. It is one the oldest and meanest NSAIDs around. It is not recommended for the elderly - too hard to tolerate - so maybe your 6 yo can't handle it either. Ask for a different NSAID like ibuprofen/Motrin or naproxen/Alieve.Thankyou Marian. We are going to get her off Indomethacin and onto Naprisan (or something sounding like that) I think. This possibility was discussed wioth our doctor earlier because of her heasaches and as they are worse now I will be discussing it again - as soon as he returns my call!
Funny, we had a lot of older friends tell us way back to "get her off that stuff" due to older peoples reactions to it.
I hope we find a miracle drug for her.
I would take her off the Indomethocin. I took it and I thought someone was ripping out my stomach. It hurt so bad and I was very sick to my stomach/headaches and dizzy. Call her doc and ask him/her about it. That seems to me to be a pretty harsh drug for a child.
I hope she feels better soon.
Dear Nelly: I've taken about 20 different powerful drugs (and my husband 2 antibiotics), in the last couple of months. My husband had a terrible reaction to the antibiotic: chills,digestive problems, etc all of which he didn't need!) A friend suggest that I take all the meds BEFORE giving them to my child. An interesting theory?
I took an antibiotic that didn't work (putting of the care I needed) 2) an antibiotic that gave me a terrible rash 3) Ultram which I found out later can make you ache. 4)about 5 other meds that didn't work! 5) 2 kinds of RA drugs that 'i'm waiting to help me , Remicade & Methotrexate. (6) The only drug that has done me any good is 15 mgs of prednisone. I think it is terribly important to watch what happens to your little girl and write down and document the pros & cons! If something helps her great, but I know how hard it must be to work this all out. Sometimes it takes a while for drugs to work, but sometimes you get bad reactions immediately. (my husband took those dumb antibiotics for several days before he called and complained when he changed he was okay and the illness he was treating went away!!) I hope you can phone your doctor or get to a hospital as your little girl can't go on with this pain. Please let us know
I'm so sorry your little one is hurting like this, but I know you will be able to help her. This is a tough one. My thoughts are with you.....
Oh, I agree about the indo. I tried it for a month and although it did help my ra just a bit, I was sicker than a dog. My hubby has a tummy of iron and has osteo in his shoulder and tried taking it and it tore his tummy up as well. I feel so badly for your daughter but its great that she has such a caring and loving mom like you!
Mystery,
I’m new around here and don’t have any advise, but I have two sons 6 & 4yrs old and we will say a prayer for you & your daughter tonight.
Seeing this makes my problem seem trivial.
Eric
Thankyou everyone for your replies! It is nice to know you all care - thanks for all the advice.
I thought you may all be interested in an update.
We have taken her off Indomethacin and she is now on Naprosyn, since yesterday so we will wait and see. (she also takes Zantec to help her stomach).
These current drugs are really just to get her through until we know what is really going on.
Out of desparation I gave her a dose of Prednisone 2 nights ago because we know it helps her enormously and she needed a break (as did I) my paediatrician agreed.
However our paed rheumy, who has been very supportive, told me two hours after I had given it to her (I had to wait 2 days for him to return my call which felt like an eternity!) that he thinks it best we stay of pred for now.
After a lot of persuasion I agreed. He thinks we are getting somewhere in establishing a 'fever pattern' to enable us somewhat of a diagnosis of a type of "Periodic Fever Syndrome" which is really broad I know but it may enable us to get our hands on the drug our rheumy thinks she needs that involves two injections a day (and incredibly expensive!). I have not asked for its name as I dont want to go there unless I have to, my brain is clouded enough!
You see, since this medical intervention, most other times her bouts of 'periodic fever' have come and gone after 6-10 days - she has been on antibiotics (she was on the strong ones for about 3and a half months all for nothing when they 'suspected' osteomyelitis) so we need to establish with absolute certainty that these fever bouts come an go all on their own with no intervention, just one more time! (which we know they do - but need to prove medically and document more with the wonderful doctors we now have.)
So, if I can get through another week of her fevers (and pains..) we may get closer to an effective medication for her. As far as her pains go for now he has advised me to use "Pain Stop" if needed on top of the Naprosyn.
But wouldn't you know it - since that one dose of pred 2 nights ago her fevers have subsided! It sounds crazy but I want her fevers to come back so we can hurry the process of getting her better! As much as the severe pains worry me more than the fevers at present - the fevers are the most important in establishing a broad diagnosis and getting us the meds.
On top of this we need to have a meeting with her teachers (who have also so far been wonderful) to discuss what she needs (Not to be forced outside on cold days, allowed to rest, modified physical ed. etc)
So I am still frustrated and desparate - but after talking to our rheumy think that perhaps we are getting closer to 'something'
Oh, and she had a full day of school today and so far so good.
Will keep you updated. Hopefully this will turn into a success story and we can all cry tears of joy!
Who would have ever thought such medical mysteries exist? Must be to make us stronger,
Hang in ther everyone - you are all so kind and yet have your own medical 'challenges' - you are inspirational even if you don't realise it.
Nelly
OOps - I just realised how long that was - sorry!
Nelly
Glad that they are on the trail to something. It sounds quite complicated. I hope you have good answers soon.Dear Nelly, I'm sure she has been tested for allergies? Milk, wheat, feathers on pillows, gosh knows!, but I do hope you have gone that route? Anti-biotics can cause all sorts of problems, also!! Good luck and our hearts are with you. Stay well yourself as she needs you.....
sarah
Nelly; I just posted on another thread here to another mother who's son had JRA. They want to start him on Humira. I bet she'd be good to connect with. You might be able to see if your their symptoms match up.
I'll keep your Sweetone in my prayers....you as well. I'm a Mother of two myself and I am very grateful that I have never had to deal with illness such as this in my children. I can not imagine how difficult that is for you. Take Care of yourself; that's improtant too.
Nelly; the member I was referring to is "Snick" maybe you could look her up and send her a PM.....I'm sure she could shed a lot of light on things for you. I hope anyway.