My daughter will be five next month. She has a sudden onset of a swollen knee a few months ago. After x-rays and examination by her pediatrician and a pediatric orthopaedist, we've been referred to a pediatric rheumatologist on the 30th of this month. At first, her knee didn't hurt. Now, she complains mostly in the morning, but will not put much pressure on it ever. She has also had a swollen toe since she was a year old that was xrayed with no explanation and no pain. She had also complained periodically about her neck hurting. Tuesday at preschool, she started crying about her neck and wouldn't move it much. I called to try to push up her rheumatology appointment, but they said they could and told me to go to the ER at our Children's Hospital if she was in that much pain. After more blood work and a CT Scan, still no explanation.
I'm so frustrated and so tired of watching her suffer with so much pain. It seems as if JRA is suspected, but then they'll say her blood work doesn't show that. However, they'll also say that it doesn't always show up in the blood work. How is JRA diagnosed? Does it sound like the neck and the knee are due to the same condition? I don't think they thought that at her ped's or the ER. She could not even ride home from the hospital without crying in pain ever time I hit a bump.
Please, if you have any thoughts or can enlighten me any on how this is diagnosed or ruled out, I would greatly appreciate it.
My heart breaks for her . . . to watch a once active preschooler incapacitated with no explanation is just killing us.
Does she have a high fever or pinkish rash?? My blood work never showed anything but the high fever and the rash and joint pain were what helped the Dr's. diagnose me.No high fever or rash. Thanks for your reply.Hey Caroline's Mom,
I so sorry to here that your daughter is in so much pain. I can't tell you for sure that she has JRA or not because i'm not a doctor. However, her symtoms sound very like JRA. I have had it since i was 14 months old, i'm 17 now and that was how i would flare when i was around your daughters age. A fever and rash are normlally systemactic JRA which i have but there is many other forms. I would keep pushing for the pead RD appointmnet.I hope things get better for your daughter.
Love Clair
Hi -
I am so sad for you and your daughter. It is so difficult as a parent to see your child suffer. When my daughter was diagnosed, they told me that it is a diagnosis that they make over time. It is made after symptoms persist over a certain period of time. Bloodwork can point to JRA, but even if you don't test positive specific factors, it doesn't rule out JRA. (This is all what I was told, take it with a grain of salt if you want). They also look at X-rays, measure joints and growth.
Some suggestions to do before your appt with the Rheumatologist. I would write down all her history that you mentioned above. You might want to start to make journal or log of pain, fevers, rashes, etc. When you go, your child may not be in pain on that day or for a few days before, so this is helpful then. Also, take close up photos of any swollen or red joints. For example, if her knee swells, take a picture of it close up, then side by side the other joint. These are all concrete things to show the doctor.
I hope this helps. I hope you can relax between now and her appt!
Good luck!
AT
Thank you all for the great advice.
I will definetely start a journal. She is much better today. I find it so weird that she can be in so much pain one day and her old self the next?
Hopefully, the Rheumatologist will be of more help on the 30th. If JRA is the diagnosis, how much can I expect this to affect her quality of life? I know that's a question that can't be answered, but it is on my mind constantly.
Hey Caroline's Mom -
I hear you. When my daughter was diagnosed at 13 months, I didn't stop crying for 2 days. It hit me out of the blue, I never believed that she could have had something like that. I was convinced that my daughter would be in a wheelchair. Well, I can tell you that she is not. For the most part, she leads a 'normal' life. Her arthritis is in her knees and it has affected her abilities in sports somewhat, but then I was never good in sports either, so that's probably more the REAL reason!
Keep hope and don't give it up. There are all ranges of this disease. Some kids go into remission and never have any more problems. I pray that will be your experience. Some kids are really sick. So, you really won't know.
Our biggest issue is the pain (on and off, not constant) and blood draws and all the doctors appointments! (there aren't that many, it just feels like it sometimes) and of course, one biggy, dealing with the insurance companies.
Don't be fearful. My daughter doesn't have a severe case, just a persistent one. I don't want to minimize the experiences of others, because there are a lot of kids who have more issues than we do. But, my brother had juvenile diabetes at age 5 and I'm really glad that my daughter didn't get that!
Most important, you are your daughter's best advocate. So don' t be afraid to ask questions of the doctors, teachers etc. and push for what you think she needs!
Good luck!
AT
Hi Caroline,
I have systemic JRA, (Still's Disease) and was first diagnosed aged 3, for me it started in my neck and ankles which would swell. I remember some days crying because I couldn't walk home from pre-school and had to go in my brother's buggy, other days I would run home. My mum says that sometimes my arms went limp and i wouldn't use them properly, like I was protecting them, I also was generally unwell on and off and had strange temperatures. Every case is different, but your daughter is in pain and it is important that the doctors get to the bottom of it soon. Hopefully they will work hard to find out what's wrong. Nobody likes to see a child in pain.
As for quality of life... I actually went into remission age 8-13 but then everything flared age 14. I've been through some tough times but I think being young means we adapt quite easily to the hard parts - I'm a stronger person for having this. I'm also doing very well and loving life; I live away from home at university and do pretty much everything everyone else does thanks to the meds available. Yes you have to be careful, take things slowly sometimes, rest etc but the outlook is better than in the old days.
I really hope you find answers soon, and that (fingers crossed) it isn't JRA but something that can be quickly treated and cured. But try not to despair if not.
Best wishes (and gentle hugs to the little one!)
Moonie x
Any flare up is due to metabolic disorder. Firstly to examine the food intakes for your child. There are bad sensitive foods that can trigger pain and swells for many arthritis sufferers, like dairy products (chocolate, cheese, cake, milk), corn, wheat and citrus fruits.
Secondly treat your child arthritis with appropriate herbs and natural foods.
As Dr. Bieler, an American Doctor made a statement in his book that motivated me to look for natural food to reverse my chronic gout of over 30years. His statement was:
"As a practicing physician for over fifty years, I have reached three basic conclusions as to the cause and cure of disease. The first is that the primary cause of disease is not germs. Rather, disease is caused by a toxemia which results in cellular impairment and breaddown, thus paving the way for the multiplication and onslaught of germs. My second conclusion is that in almost all cases the use of drugs in treating patients is harmful. Drugs often cause serious side effects and sometimes even create new diseases. The dubious benefits they afford the patient are at best temporary. My third conclusion is that disease can be cured through the proper use of correct & healthy foods."
I sincerely you can find solution for your child.
Hey Caroline's Mom,
Please be very careful taking advise from anyone who tries to push off selling a product or books, herbs, or alternative medications, such is with the person who posted above me, kokako88. Please go to some of the adult posts to verify problems with this person. they have been reeking havioc on some of the other posts.
I am so sorry for your daughter, and her pain. I know as a parent of children we would do anything to take away all their pain and suffering.
I'll keep her in my prayers, please keep us posted as to her condition, and out come. If you need more help go to the RA postings for more information. I know this is more adult but some of the same problems exist and may be helpful in keeping a diary of her conditions as you may find similarities she has signs of.
There are alot of conditions here in these forums, not everyone has all of them this disease is not picky and relays no set pattern, everything is a potential.
keep your head high, and spirit strong, if you cant get to the ER of ped rheumy doc, you may be able to supress some of the inflammation temporaily with over the counter benedryl, call the rheumy nurse and see if there is something she can take over the counter until you see them?
God bless and hug the little one for me.
Sharon
While I don't think it's necessarily true that you can treat or cure RA and related diseases through diet alone (I've been dependent on medications for over 10years but hey if it means I have a life that's okay by me!). However, I have been tested for food intolerances twice since the age of 3; each time I came back with about 5 pages of foods that made me worse (on varying scales), cutting those foods out has helped.
A lot of people believe in doing things the natural way, through diet and alternative therapy and I can understand why, the drugs are pretty nasty things to deal with too. That's not to say Koko was trying to sell anything, just to share what she believes in.
I really hope your daughter has found some relief since you last posted Caroline's Mom,
Best,
Moonie
I like to sell healthy living
My believe is treating chronic disease with herbs and selective foods. This path I have been doing for a decade. Gether more info and awareness. There are heap of info in libraries. Your homework will pay off if you find a natural remedy.
We saw the pediatric rheumatolgist this week. She has been diagnosed with JRA and has been given a treatment plan.
I will be doing lots of research on this disease, her treatment, etc. I do thank all of you for your advice and suggestions.
Hey,
I'm glad that your daughter has finally got a diagnosis. It's must be such a relief. I hope thatshe gets better now with treatment. Let us know how she doing.
Love to you and your daughter.
Clair
Caroline's mom
Im 16 with JIA in many joints. the diagnosis is a great start, it really got the ball rolling for me. does your daughter like to swim? i dont know if anyones already said, but exercising gently in hot water is often good for joint pains. i do hydrotherapy weekly, and it doesnt do that much as im kinda severe, but for a while at least i feel almost normal again!!!!! :D
Ive been told many times over the years what to and what not to eat... i find that it doesnt make one jot of difference. cranberry juice doesnt help me, nor does turmeric, etc. rubbing olive oil in every morning for a while is meant to be good, i havent tried it yet but several of the older ladies at the hairdresser were i work have advised...
i hope it all goes well for you. Hopefully your daughter will hit remission and never loo back soon.
Good luck and best wishes!!!