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Lisatm
Posted Wednesday, September 17, 2003 7:57 PM


 

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HI MY NAME IS LISA AND MY DAUGHTER WAS DIAGNOSED WITH JRA 6 MONTHS AGO. SHE JUST TURNED 3 LAST MONTH. SHE HAS POLY JRA. THE DOCTORS JUST FOUND IT ANOTHER ONE OF HER JOINTS, MAKING IT A TOTAL OF 6 JOINTS. IT IS SO HARD TO WATCH A TINY LITTLE GIRL GO THROUGH WHAT SHE'S GOING THROUGH. ALTHOUGH SHE BARELY COMPLAINS, YOU CAN SEE THE WAY SHE WALKS THAT SHE'S IN PAIN. I WOULD REALLY LOVE TO TALK TO SOMEONE THAT KNOWS WHAT WE ARE GOING THROUGH. IT'S SO HARD TO TALK TO SOMEONE THAT DOESN'T KNOW WHAT IT'S LIKE TO WATCH YOUR LITTLE ANGEL GO THROUGH PAIN EVERY DAY. I JUST HOPE THAT IT GETS BETTER. THE DOCTOR JUST PRESCRIBED FOR HER METHOTREXATE ON TOP OF HER NAPROXEN. SO HOPEFULLY THAT WILL RELIEVE SOME OF HER DISCOMFORT. SHE IS MY LITTLE TROOPER, BECAUSE ON TOP OF ALL OF THIS LAST MONTH SHE HAD TO HAVE HER TONSILS AND ADNOIDS TAKING OUT. FOR ALL SHE'S GONE THROUGH, SHE NEVER CRIES ABOUT PAIN OR HAVING TO DO ANYTHING. SHE'S A BRAVE LITTLE GIRL.
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Jill
Posted Thursday, September 18, 2003 7:13 AM


 

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Hi, Lisa, welcome to the board. There are a lot of kind and caring people here. My daughter turned three in the spring and has pain in her knees, ankles, toes, and thumbs. She has not been diagnosed yet but is on Naprosyn for the pain. She was seen once by a board certified pediatric rheumatologist and she will see him again next week. Keep posting here as there are many parents here who understand. I have found great consolation by posting and reading here. The Arthritis Foundation has a lot of helpful resources, too.
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AmyB
Posted Thursday, September 18, 2003 5:13 PM


 

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Lisa there is hope. Hang on and wait. You will find the right medicine. My daughter is now 7 with poly. She has it in so many joints. She had it since age 3, but we did not get diagnoisis till age 5. I can remember her waking up like a little old lady who couldn't walk. We have been on Naproxyen and Methotrexate. Methotrexate is a great drug for her. We have adjusted the dosage over the years. We had to go off of Naproxen after 10 monthes due to facial scarring. We are now on choline magnesium, an aspirin derivitive. You should see her now. She runs laps at school, she can sit indian style. We still have flares, but we have a lot of great days. Find the right medicine and the right doctor. There is lots of hope. I still look at her and wonder, why does she have to go through so much, but she makes it through, with few complaints. Take care, read the other posts, post so we know how you are doing. It is very good for parents to hear about other parents. Amy B.
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ANGELSIX
Posted Thursday, September 18, 2003 5:47 PM


 

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Lisa, my daughter has had jra since she was 5 1/2 months old.She is now eight months old.She is now on naprosyn.She goes back to the Ruematologist in two weeks.My daughter doesn't sleep to good through the night.She wakes up screaming and crying.Some mornings she can't even move her legs and arms for awhile and it hurts her so bad.The naprosyn helps a little,but she is still in very much pain.At her age now she should be crawling and lifting her self up,but she can't.I just which I can take her place so she doesn't have to go through this.I'm sure you feel the same way about your little girl. my email address is ANGEL64U@YAHOO.COM Its nice talking with other parents going through the same situation.
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CynthiaJ
Posted Sunday, October 19, 2003 5:57 PM


 

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Hello everyone. My daughter who is two and half was diagnosed a year ago with JRA. She has another condition called allergic colitis so many drugs are not options for her. Does ANYONE know of other therapies besides medication that is working for their children? My daugther has 4 doctors working on this problem and so far the only joints affected are her hips (?) and knees. Her knees flare up every six weeks and she is in pain every morning. The flare ups last from a week to 17 days with no relief. The only option I have is to give her tylenol and wrap her knees in braces. Motrin and Nsaids are not options because of her colon problems. I hope her pediatric rheumatologists prescibes something for her. Predinsone is not an option either. Any suggestions?
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TerryB
Posted Sunday, October 19, 2003 6:17 PM


 

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Cynthia, this is when you need a doctor that will think outside the box. With only 4 joints involved some doctors don't often think beyond NSAIDs but I found a Rheumy that would. It is cruel to put a child through that sort of pain. Why not Methotrexate by injection? Could she use Vioxx (it is an NSAID but it is much less likely to cause GI problems.) 4 joints is a lot of joints to inject with a steroid but perhaps it is worth a try. I'm not a doctor but I would want to know the answers to these questions. If the answer is that a certain drug is not approved for her age group then find a Rheumy that will go outside the approval limits. Rheumies have to go "off-label" for younger kids sometimes. We had tummy troubles and when we switched doctors we were able to get Vioxx when she was 3 and now Methotrexate at 4 years old. She has only 4 joints involved and some deformity. I would get a second opinion from someone not in the same practice. It has been a year and she is still in a significant amount of pain. It seem unacceptable to me.
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DeeDee
Posted Monday, October 20, 2003 8:38 AM


 

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A friend of mine sees an acupuncturist for a degenerative eye disease and has tried to talk me into taking Hannah to see him. She said that he has helped elderly people with RA. I haven't because I don't want to take her off the meds to try it and it not work. Have you looked into holistic medicine? I know insurance doesn't cover it. These were just a couple of things that I might consider if my daughter could not take meds.
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CynthiaJ
Posted Wednesday, October 22, 2003 9:17 PM


 

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Terry- Thank you for responding. I had my daughter at the Peds Rheumy for a check-up on Monday. She will be having the steriod injections in her knees within the next two weeks. What I thought was general swelling turns out to be the first stages of deformity in her left knee. I was not prepared for that diagnosis. Still trying to adjust to that kind of news. You all know how I feel I am sure. Her Peds Gastro doctor said she is not stable enough with the colon problems for any type of oral medication. Because both conditions are auto-immune he does not want to do the shots you mentioned either. She is in a high risk category for complications from the meds. Her colon, when it flares, ulcerates and bleeds causing significant blood loss and chronic anemia. The Rheumy did order physical therapy as well. How is your daughters deformity, if you don't mind me asking? Does she still function with it? What type of activity can she do? The doctor said the only exercise she should do is swimming. Yes, I think they should think outside the box but her colon condition is so rare and chronic as well the doctors feel as trapped as I do about this whole thing. Thanks for listening-
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TerryB
Posted Thursday, October 23, 2003 4:12 AM


 

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Cynthia, I really feel for you. I'm glad the doctor is trying the joint injections. Is the doctor worried that injectable MTX will cause GI trouble also? What about Enbrel injections? Sorry, I just don't quite understand. I thought I remembered reading that the biologic agents could be used for Chrone's (spelling) an autoimmune GI disease. It's not the same as what your child has but I'm wondering if there is a parrallel here. Wouldn't it great to think that you might be able to treat the two conditions with the same med? My daughter is 4 and tries to do just about everything that other 4 year old kids do. The biggest deformity right now is that one leg is bowed and shorter. To me is looks odd to see her run on it because it looks like it could easily sprain.
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CynthiaJ
Posted Thursday, October 23, 2003 4:02 PM


 

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Sonia and Terry- Thank you for the information Terry. I will look up Enbrel injections and do some research on the drug. I don't think he mentioned that one but he did mention MTX and he said no on that. Don't children taking MTX have blood draws frequently to check the level? The liver is another organ they dont want to harm because of the amount of Tylenol she takes every day. BUT, I will look into Enbrel. It would be great to treat both diseases. Her leg turns in and she does not have a knee cap anymore. Its just solid. SHe has a constant limp even when she is not in pain. We have options for that but not until she stops growing at 18. Sonia- I dont know a whole lot about the disease but the other messages are very information and Terry has been a great help. I assume the point of treatment is to slow the disease and take away the pain. My child is always in pain, morning, noon and night. The poor thing has had the colon problem since 4 months and the JRA for 1 year (diagnosed). Looking back in her records, she had a high fever, rash and her first leg flare at 12 months. She does not know anything different. She has lived with this her whole life, its all she knows. I am going to purchase some books this weekend and start researching. I need to become more educated on JRA so I know what to ask when I go back to the DR. Like Terry said, sometimes we have to think outside the box. I love the comment Terry and took it heart. Cindy
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TerryB
Posted Thursday, October 23, 2003 6:59 PM


 

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Cynthia, I really feel terrible for your child. Yes, with MTX you do need frequent blood draws (every 2 months.) The books are a great start but you will probably quickly outgrow them and the treatment strategies keep changing. Two years ago, you couldn't even get Enbrel. I tend to research on-line now. Sometimes I just type in something into Google and see what pops up. You can usually tell which sources are reliable (eg Medical schools, NIH). The parents here have taught me a lot too. Sometimes other parents just help me brainstorm or someone will plant a seed in my mind that leads to something else. I check this board daily. I also get a JRA newsletter from our local Arthritis Foundation. Cynthia, is your daughter just now getting the joint injections or did they try them earlier? I never imagined that parenting would involve seeing my child in pain but we have to keep knocking the beast down right? Terry
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CynthiaJ
Posted Thursday, October 23, 2003 9:08 PM


 

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Terry, Amy, Sonia- How important is the eye exam? I asked the Rheumy and she said unless my daughter shows signs, there is no reason to go. What symptoms should I be looking for? This will be our first injection. Her blood counts, hemoglobin, and anemia, in addition to the allergic colitis have prevented us from being aggressive. Like Amy said, " Having a good doctor is where to start". All her doctors are at one hospital which is three hours away from our house. I bet some of you have to travel even farther. THey have treated the colitis aggressive with sulfasalazine ( can be used for JRA but does not work on her), and cortisone enemas (yes, enemas). The cortisone did help the JRA somewhat because her flares for those three months only lasted three to five days and then were over. I thought she was making some progress at that point. Unfortunatley, we had to stop using those because prolonged use can do more harm than good to the tissue. I started her physical therapy on Monday. She was fine until tonight. She screamed halfway through the session and I felt terrible. I finished the exercises and then she was fine. Do your children do this as well? Do they act fine during treatment and then suddenly hate the whole thing? I did not know whether or not I should stop or keep going. I just don't know... Terry- True about the treatments being outdated in the books. I should just research on-line. I am still going to buy one about raising a "Happy child" with Arthritis. I need to make sure I am doing the best for her emotionally as well. I know she is only 2 1/2 but I need to start this NOW right? Thanks- You have all been a blessing Cindy
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TerryB
Posted Friday, October 24, 2003 4:28 AM


 

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Cynthia, I find your doctor's advice about the eye exams a little against the common advice. Here is a "cut and paste" from uveitis.org regarding the eye exam: "The eyes of patients with JRA-associated uveitis commonly appear normal (not red or inflamed) on external examination and routine ophthalmoscopy. Because patients with JRA are young, they may not notice or report small visual changes that are slowly developing as a result of active inflammation. Therefore, current guidelines recommend that children whose age at onset of JRA is less than 7 years and who do not have known iridocyclitis should have a complete ophthalmologic examination including slit-lamp evaluation, every 3 to 4 months if they have pauciarticular or polyarticular JRA and ANA positivity, every 6 months if they have pauciarticular or polyarticular JRA but ANA negativity, and every 12 months if they have systemic JRA. However, Candell, Chalom and colleagues recently reported that, in a retrospective study, although the prevalence of uveitis was lower in ANA-negative patients compared with ANA-positive patients, ocular complications were more common in children with uveitis who were ANA negative. These authors speculated that perhaps ANA-negative children were screened less intensively and thus fared worse. Patients with JRA are considered at low risk for developing iridocyclitis 7 years after the onset of their arthritis but should have yearly ophthalmologic examinations indefinitely thereafter. Once iridocyclitis is diagnosed, the managing ophthalmologist can determine the frequency of visits, depending on the severity of uveitis, its response to therapy, and the treatment used." This is Doctor Foster's web site essentially. He is one of the leading experts in JRA uveitis in the country. PT should never hurt. It is not productive when it does. We do aquatics PT in warm water and the PT will do different things depending on how much inflammation is present.
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TerryB
Posted Friday, October 24, 2003 5:59 AM


 

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Cynthia, Thanks for posting the book for emotional issues with JRA. It is never too early to think about this. I might get the book myself.
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AmyB
Posted Friday, October 24, 2003 1:25 PM


 

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Terry is correct. Eye exams are so important. There are no symptoms to the eye problems. If you daughter is having trouble all over, I would take her every three to six monthes for the first year and then every six monthes. Just keep asking for the referrals. Terry mentioned water PT. I had heard recently, if you don't have access to an indoor pool, ask a manager at your local health club or hotel if they would give you access to their pool. Ask them to donate time so that you can bring your daughter and a friend a few times a week or even once a week on the weekends. Explain the situation of JRA and offer to provide a doctors note. The reason for the friend, is so that your child will have someone to play with and will swim more. Many clubs and hotel will show understanding and allow your child in free. When you ask, have handouts on JRA and the terrible nature of the disease and the benefit of water exercise. My daughter does amazing things in the water and she is so proud of herself. It is a real self esteem booster, which all kids need. Take care, all Amy
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soniadykhuizen
Posted Friday, October 24, 2003 2:29 PM


 

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I just wanted to suggest checking out your local YMCA for water therapy. We are members of the Y and they keep the water temp higher in order to be more therapeutic for arthritis sufferers. They have also made an exception to their rule that noone under 15 is allowed in the whirlpool. I met with the director regarding Aundreas arthritis and he was more than willing to allow her to use the hottub to ease her hurting joints. Also, I wanted to mention that I have the book "raising a child with arthritis" and I thought that it was pretty beneficial. It provides some good resources for dealing with the school system. There is another book called "keeping a secret" that my 8 year old was able to read. It tells a story about a child getting the diagnosis of jra and how she was able to broach this subject with her friends and teachers. Aundrea could easily relate to it and we have considered reading it to her class in order to better educate her peers and teachers on this disease. Hope you all have a nice weekend. Sonia
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CynthiaJ
Posted Friday, October 24, 2003 5:26 PM


 

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Hello everyone- The book is called Raising a child with Arthritis not Happy child. Sorry about the title error. I will get the book on Saturday. I have checked the local Y for membership fees and what services are available. I think our whole family will benefit from joining and they have an Olympic size pool. I did ask if they had any therapy type swimming sessions and she said yes !! For people with arthritis including children. I thought that was great so I am joining next week. Now that you all have said that opthamologists are the first line of defense for eye disease I will be calling for the referral. My husband and I have thrown around the idea of building a hot tub and pool off our deck but that will take to much money right now. My 3 kids are still to small to have one in the backyard I think. Terry- PT went great both sessions today so I am happy with that. She woke up this morning and was not as stiff as she has been lately. Do any of your children wear braces on their legs? Do they prevent deformity or at least slow the progression? After the injection and the swelling is reduced in her leg, they want to fit her for a brace that she will wear at night. They have not told me anymore information so I dont even know what it will look like. I have learned so much from all of you that I figured I would ask. Take care Cindy
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AmyB
Posted Saturday, October 25, 2003 12:49 PM


 

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Cynthia, We also looked at hot tubs and have done some serious research. We have put it off right now, because of the money and that my daughter's disease does not need it at this time. There is a company I believe called ThermaSpa or ThemoSpa that does give away a spa to people/children with arthritis. I cannot remember all of the details of the promotion, but it definately sounds like your daughter would benefit and if you won one or were given one, that might help. You may want to contact the company to see what the promotion is. They were at the JRA conference that I attended and handed out a sheet on the fact that they give away a spa 3-4 times a year to people with arthritis. My daughter loves the hot tub and pool. Right now the pool is all we need. Take care, Amy
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AmyB
Posted Sunday, October 26, 2003 6:33 AM


 

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Cynthia, We have not had to deal with braces or splints yet. But I do have an idea for you. If at all possible see what the brace looks like a day or two before your child seeing it. I find with this disease that the parent needs time to adjust before dealing with the child. For example, when we had to have a bone scan procedure, I went to the hospital the day before, looked at all the equipment, had the procedure explained. That way, that night I got out all my emotion and was prepared the next day. When my doctor was considering splints for my daughter's hands, I pictured just awful devices; however, when I saw them, they were not near as bad as I had dreamed up. Good luck with the braces and hang in there. Amy
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KathyKivett
Posted Thursday, October 30, 2003 6:14 AM


 

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Lisa, Hi, my name is Kathy and I was diagnosed with Poly JRA when I was 4 years old. I was probably born with it. It is hard what your daughter is going through. However, she can do it. Those of us who have it, we are a tough breed and don't give up easily. I want you to know that your daugher can do anything that she sets her mind to. The doctors never expected me to do anything. But I did! I have two college degrees and am now a high school teacher. I live on my own...have made modifications to my apartment so it is accessible to me and I am doing great! She can do anything...just help her...hold her and love her. Encourage her to be everything that she wants to be. Don't let her think that this disease will stop her. My Mom and Grandmother are awesome! That did that for me and that is why I am where I am today. It is a tough road but it can be done and in the end she will be a stronger more brilliant, beautiful, independant woman. I want to help you and your child anyway I can. So please contact me, My home number is 865-544-7725. My cell number is 865-414-0210. Please don't hesitate to let me help. I will keep you and your family in my thoughts and prayers. Kathy
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