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Kirsty352

Posted Wednesday, April 12, 2006 8:56 PM

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Last Login: Thursday, July 31, 2008 1:01 PM
Posts: 8, Visits: 0

My daughter does not yet have a diagnosis, we cannot get her into a Rheumatologist until June. So I have two months to fill with unanswered questions and worry. My daughter is 7 years old, soon to be 8. She began to complain of finger pain about a month ago, about two weeks ago she woke up with a very swollen thumb and ring finger, I took her to the doctor immediatly. He examined her, said she probably bruised it, to give her Advil and come back if it didn't get better. Well not only did it not get better, but her knee began to hurt as well, and then swelled up also, I scheduled her another appointment within the same week of the first one, by the time of her appointment her ankel had begun to hurt and swell as well. ( all of the effected areas are on her right side). The doctor did a blood test, found no infection, and has now refered me to a Rheumatologist. Until the appointment in June I am to give her Advil everyday, monitor her for fever, and watch for any changes in swelling.
I am terrified of what may come next, this has all happened so suddenly. I would appreciate any information you can give me, any specific sympoms to look for (past and present),, any tips to help with the swelling (it still hasn't subsided)
Thank You.

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fellwaters

Posted Monday, April 17, 2006 2:03 PM

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Last Login: Thursday, July 31, 2008 12:29 PM
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Rhumatologists are often overbooked, and when I was first diagnosed, my first appointment was over a month away, but someone canceled, and I got in within a week or two, simply by calling every day, and checking to see if they had an opening. I know that it may be a lot to put upon you, but I think that it would be worth it in the long run, not seeing your daughter suffer for the next two months. (He does not have arthritis, I do, but I study the effects of drugs that I take for my pain, and came across this bit of info.) Also, you should check the www.parentcenter.com website. I stopped giving my son ibuprofen (Advil or Motrin) becuase it has been linked to serious side effects in children. I can't remember what it is unfortunately. Unfortunately there is not much out there for over-the-counter relief children, except for Tylenol and Advil or motrin. She's older than my son, and I think it is linked to age. Don't consider giving her anything that is an over the counter herbal remedy, children often have bad reactions to these. Gentle massage may help after a warm bath, to stimulate blood supply and help keep function in the joints. Don't over do it. Some foods have natural inflammation reducing properties: Cherries, strawberries, blueberries are three that come immediately to mind, provided she's not allergic. Milk products may actually increase discomfort, especially in girls. God bless her, I hope that she feels better soon.

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Heather46

Posted Tuesday, May 02, 2006 12:23 AM

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Last Login: Thursday, July 31, 2008 1:02 PM
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I know what you are going through. My 3 year old daughter has just recently been diagnosed with Pauciarticular JRA. It took about two months to diagnose her with JRA. She started having symptoms after a fall on the ice outside of our house. She fell on her knees and did not complain of pain until 4 days later. Pediatrician thought that it was a fracture. Otho said the X-rays were clean. No fractures. Felt it was a contusion. Took her to children's hospital er twice and one dr said it was a contusion. Three weeks later her knee was not healing. Ped sent her for blood work to check for infection. Blood culture came back negative. Took her back to er two weeks later. Er doc said it was healing with scar tissue. Needed to see pediatric ortho dr. Ortho dr sent her for knee asperation under sedation to check her for infection. No infection. Then sent for an MRI. MRI showed fluid in right knee. Finally was able to see rheumatologist. Blood work was performed and history was taken. She was diagnosed a week later with JRA. She was scheduled for an arthoscentisis in February. She had both knees drained (rheumatoligist said both knees was swelled and both were affected by the JRA) and cortisone was inserted. She has been doing quite well until last week. She had her first flare and I paniced. I did not know what to do with her. She did not want to walk. She was very stiff. I called the rheumatologist's office and had to leave a message for the nurse pract. She could not return my call until that evening, so I just went by my gut feeling. I put in the bath tub and ran warm water for her. Let her play in the tub for a while. She soaked for about a half an hour and then she seemed to be fine. Her stiffness lasted for about 45 minutes. When I talked to the nurse, she said that was a mild flare and I did the right thing. Tylenol was also suggested for the stiffness. I understand how concerned you are. I am down right scared. I don't know from day to day how she is going to feel. I ask her every morning "how does your knees feel today." Some days are good and some days are bad. She currently is not on any medication but she has been having on and off flares. I was told to chart her bad days, how long the stiffness lasts, any pain, etc. and bring them to her follow-up in about two weeks. I am a little scared that she might need to be put on medication. We will see what her doctor says. She also has to see an eye surgeon every 4 months because she tested positive for ANA in her blood. This can cause an immflamation in the back of her eyes. If this happens, I was told she will be given steroid drops for the eyes. She is currently taking physical therapy because she did not walk for nearly two months. She has alot of muscle weakness in her legs and torso. She loves her therapy sessions. She has water therapy and gym therapy and we also have homework therapy. I hope your daughter does very well and you find out the diagnosis very soon. I was scared to see the rheumatolgist for the first time because I did not want him to tell me she had JRA but now I am so glad that she was diagnosed so she could be on the road to recovery. I knew there was something a wrong with her and I did not stop until I had the answers. I am so glad that I was told about this website because I feel so much better to be able to write to other people who are going through the same things I am going through. Some tips to reduce the pain and swelling are a warm bath, heating pad or hot water bottle, swimming, bicycling, and an electric blanket. I have only tried the bath, bicycling, swimming and heating pad. But her therapists told me the other things. My daughter was on Motrin every day until we saw the rheumatologist too. When she was finally seen by him, he put her on Naproxsen. She had to take that twice a day for over a month. She did not want to take it so the pharm. suggested that I put it in Hawaiian Punch. She didn't know the difference. She called it her magical fruit punch and thought that it took all her pain away. God bless you and her and I hope you have your answers soon.

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Kirsty352

Posted Monday, June 12, 2006 2:50 PM

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Last Login: Thursday, July 31, 2008 1:01 PM
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So we went to the specialist finally (the 8th). Sydney does in fact, have JRA. He put her on Methotrexate, Prednisone, Folic Acid and naproxen. We started her on the naproxen right away, the prednisone yesterday, and the metho and folic acid today (she is to take the Metho on Monday's). We also have a list of daily excersizes to do.
She has to have monthy blood work done, and return to the specialist in two months to see how things are comming along.
We also signed up for the genetic study, since she has to have blood taken every month anyways.

I am a bit concerned about how quickly this seems to be progressing in her, we noticed the first symptom about 3 months ago, and at her appointment she had swelling in both knees, her fingers, both ankels, and her jaw as well. She has also had back and neck pain. It only seems to cause her minor discomfort though, mornings can be bad, but other than that it barely seems to slow her down. She has complained more since she has begun the prescription drugs, and we stoped giving her Ibprofen, I guess it will just take time for the prescriptions to work.

I guess I'll just cross my fingers and hope that the medications work, and with little to no side effects.

Post #4095214

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Heather46

Posted Sunday, July 09, 2006 1:58 AM

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Last Login: Thursday, July 31, 2008 1:02 PM
Posts: 13, Visits: 0

Hi Kirsty,

It is great that you finally were able to see a rheumy. Faith had her second operation on June 7th. Drainage of knees again and cortisone injected. It has been a month now and she is doing great. I was told this past Wednesday that she is being evaluated for discharge from physical therapy. That was great news. She loves therapy but I am so happy that she getting to where she needs to be physically. I hope Sydney is doing well on her meds. with no side effects. Faith seems to be getting an upset stomach from the naproxen. I have been giving her it with food but about a 1/2 hour after she takes it she says her belly hurts. She has been on and off it for six months now. I am going to ask her rheumy on July 17 about this. She just took her last dose of naproxen this morning. Did great this afternoon and evening with no stiffness or pain. I hope she continues to have relief without meds. On the 17th she is going to have bloodwook to check her sed rate. Her rate last time was 51. This was before the cortisone injections. If the rate has not come down, her rheumy is going to put her on methotrexate. Our rheumy sent us to a hemotologist to rule out leukemia. We were very scared. They ran blood work and everything came back normal. She got a clean bill of health, except for the arthritis.
Take care and keep in touch.

Heather

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Sadie's mom

Posted Wednesday, May 02, 2007 2:52 PM

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Last Login: Thursday, July 31, 2008 1:14 PM
Posts: 2, Visits: 0

My daughter, Sadie, is almost 2 years old and has just been diagnosed with JRA (Pauciarticular). She's getting some sort of injection in her knee and ankle tomorrow to ease the swelling. My biggest question is what has worked best for others, in terms of traditional and alternative medicine. She was on Motrin until the diagnosis, then put on Naproxen to help her walk for 2 weeks until these injections happen. That's made her tummy hurt. For this type of JRA in this young age, I'm curious to know if people have had success with other treatments. For example, maybe cutting out some inflammatory foods has helped slow down swelling? We're just in the information-gathering phase, since this is a scary new diagnosis.

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Robbin40

Posted Saturday, May 26, 2007 9:41 AM

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Last Login: Thursday, July 31, 2008 12:28 PM
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Hi Mom'a and Dads,
I also have a daughter with Juvenile Arthritis she is 20 now and still has issues with it. If you want to talk just email me at Robbin40@aol.com
No question to big or small when you have dealt with this JA. My daughter was Diagnosed at age 12 but had issues prior.

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