Juvenile Arthritis

Updated on January 02, 2011
M.C. asks from Franklin, OH
20 answers

I wonder if anyone out that has any experience with juvenile arthritis. My 9 year old daughter has been diagnosed (this past week) with some type of arthritis by our family doctor. Her "sed rate" test and ANA test both came back high. We are scheduled to see a pediatric rheumatologist in May and she is on Naprosyn(Naproxyn) for now. The doctor does not feel it is just growing pains. She has been complaining about knee pains for over a year and recently she has had pain in her ankle, shoulder, and back sometimes. Also, after being on her medication, she had taken 4 doses) her chest area started hurting. It sounds like maybe heartburn???? I think from her medicine..it is a liquid. Anyway, If any one has dealt with this or is dealing with this and has information and encouragement to share I would really appreciate it. I am a little overwhelmed...not being able to take the hurt away is hard. Thanks so much!!

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So What Happened?

Well, we FINALLY saw the pediatric rheumatologist. As far as a diagnosis, we don't really have one...he did say that my daughter is double jointed and that can cause some pain. He also repeated her blood work. We are continuing to treat her with Zantac for her stomach problems (probably due to the Naprosyn) and Advil as needed for pain and swelling. We are to see him again in a month.

Thank you to all who responded...your insights and encouragement and kindness helped MOM tremendously. I appreciate you!!

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C.W.

answers from Cincinnati on

Before i was set on her case being arthritis, have her tested for bercitis, i have it in my hips (im 18 and have never had a child) I have been told that it is rare for someone so young to have it with out reason. Also have her back examined. There is a condition called Spondelosisthesis. It is caused at a young age often when children are learning to walk and they fall on their behinds, or while lerning to skate and they fall. This can cause the spine to jar against itself and chip. It isn't very serious and can be corrected with some therapy. I hope I was of some help,
Indi

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E.W.

answers from Cleveland on

If you can afford it, check out the fibromyalga center or an osteopath doctor. I have a friend who shared with a me a testimony of a young teenager with arthritis. He thinks it is environmental isuues causing these type of problems. Well the young man is suppposed to be doing better. I see an osteopath for a different autoimmune disease and she has helped me immensely. If you are in the Cleveland area check out the website for either Osteomed II or Integrative Wellcare. Good luck.

http://www.integrativewellcare.com/

http://www.osteomed2.com/

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M.C.

answers from Columbus on

Hello M.,
I hear all the worry in your message. I have been there myself. I had very similar symptoms at a young age. It was not diagnosed till I was 18 though. I have fibromyalgia. It can often present like arthritis. Please make sure to ask the specialist about this. Fibromyalgia is often overlooked by physicians and it is extreamly treatable!
I suspect that your daughter is having heartburn with the Naproxen. I have taken that med before and it is pretty tough on your stomach. I would call the dr. back and ask if there is something milder that she could take till your next appt. You and your family will be in my prayers.
Good Luck,
M.

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T.W.

answers from Cleveland on

M., before you let the doctors pump your baby full of medications that are formulated for adults, please, please, please I implore you to research every alternative option available.

There are so many issues that can be going on in her body that can be creating this type of pain; from food allergies to leaky gut syndrome. Your doctors will NOT discuss these issues with you. Either they do not know about them, do not believe in them, or the dont care.

As you can see the side effects of medications only lead to needing more medications. The medical industry has no real regulated guidelines on dosages of medications for children. They just guess. They also do not know the long term effects on growing children.

http://www.boston.com/news/health/articles/2008/03/31/ped...

"Kids are changing every day, and administering medications in doses according to size and weight adds a new level of complexity," says Charles Homer, a professor at Harvard University and chief executive of the National Initiative for Children's Healthcare Quality.

http://online.wsj.com/article/SB120467987732012017.html?m...

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B.W.

answers from Indianapolis on

Hi,
First, my heart goes out to you and your daughter. I was diagnosed with Rheumatoid Arthritis 3 years ago after the birth of my first son when I was 29. Mine started as knee pain and progressed to about every joint in my body. I can't imagine how hard it is on you, as a mom, to watch your daughter in pain at just 9 years old. Just learn all you can about the disease. Lots of people will try to give you advice and suggestions - some helpful, some just downright dumb! :-) (I subscribe to Arthritis Today and learned lots from this magazine.) It took awhile for my rheumatologist to get me on the right medicine for me and the right dosage but I live a very normal, active life now. The good news is that there have been major improvements in the medications for inflammatory arthritis in the past 10 years. I believe Naproxyn is categorized as an NSAID (non-steroidal anti-inflammatory) and I've been on several NSAIDS over the past few years and they give me heartburn like crazy! I can't lay down for awhile after I take it. It's great you are already getting her into a pediatric rheumatologist - early diagnosis is key! I take Remicade to stop joint damage along with Prednisone and Dolobid. I was on Enbrel for awhile, which I believe is approved for children.
God bless!
B.
I'm a stay-at-home mom to two boys ages 4 and 7 months.

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P.H.

answers from Steubenville on

Hello!
My 7-year-old son was diagnosed with JRA just before he turned 3. He has been on methotrexate since then, which doesn't seem to have caused him much trouble, except that it is a chemotherapy drug which has accumulative risks, so his doctor is trying to wean him off of it. This drug also requires him to have bloodwork done every 8 weeks. Thankfully, he's always been a trooper about that. After a bad flare-up two years ago, I had to learn to give him injections of Embrel twice a week in his thigh. Talk about something I never thought I'd have to do as a mom! That only lasted a year. Our doctor, at the Pittsburgh Children's Hospital Pediatric Rheumatology Department, put my son on liquid Naproxyn back in November, but it began bothering his stomach after awhile and I stopped giving it to him (the doctor had okayed it at that point).

My son's rheumatologist gave us a book by the Arthritis Foundation called, "Raising a Child with Arthritis". It's very informative. You can also go to www.arthritis.org for more information. It sounds as though your daughter may have a different form of JRA than my son (yes, there are different types -- which I wasn't aware of until my son was diagnosed), but if you'd like to contact me, my email is [email protected]____.com the meantime, I'll pray that the Lord will help you and your family deal with this situation. God bless!

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S.S.

answers from Cleveland on

Hi M.,

I am sorry to hear that you will be having to go through the possibility of arthritis with your daughter. My daughter is 7 and was diagnosed with Juvenile Idiopathic arthritis (which is now what they call JRA) when she 4. She was complaining that her knee hurt for several mornings. Looking back, she also had some high fevers without any other symptom. I brushed her off explaining that we get growing pains. One morning I really looked at her knee and it had swelled to a very good sized puff and I started the process of determining what was wrong. We ended up eventually with a pediatric rheumatologist. My daughter also has ANA present in her blood work. Her sed rate was initially high which is just an indicator that there is an infection. My daughter is lucky as she only has the disease in one joint, her right knee. We have to take her to see an eye specialist (because of the ANA) to check her eyes under a slit lamp to determine if she has iridocyclitis (scarring of the lense which undetected may cause difficulties - even blindness). We just returned home yesterday (March 31st) from having a cortizone injection into her knee as it is swollen and growing too rapidly. The naproxyn she takes is not enough to keep the swelling reduced. This is her third knee injection. The most troublesome part of it is that she is sedated throughout the procedure. It is very scary for the parents and patient, but she typically sails right through it. I really love my doctor as she is very good with my daughter and with me and my husband. We have tried a medicine called methotrexate in combination with folic acid and the naproxyn. It kept her knee swelling down and the inflamation down but it didn't work long term so my new doctor (that I love) doesn't want to use the drugs as they are more for the systemic type of arthritis and we will stick to the injection and the naproxyn. My daughter does not get stomach problems from the naproxyn, but I know it is a common side affect. However she does have her urine and blood checked to make sure the naproxn isn't damaging her liver. Tell your rheumatologist about the discomfort and perhaps they have a way to handle this.

There are some things that will lesson the discomfort naturally. I have found that eliminating sugar, caffeine (from chocolates), processed foods and anything but sea salt helps with the stiffness in the joints. You may wish to do a little research about foods and what is in them.

Please feel free to contact me at anytime during this process. It is scary and my daughter wishes she didn't have this problem, but like I said, she was lucky to only have it in one joint.

I'll say a prayer for all of you.

About me: stay at home mom. 4 children...8, 7, 4 and 2. married for 12 1/2 years.

S.

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J.F.

answers from Canton on

If you discover that it is juvenile arthritis (which is an auto-immune disorder) it might be recomended that she be given a drug called Humira. My son has Crohns Disease(Inflamatory Bowel) it is also auto-immune and we give him injections of Humira every other week. Humira is used to treat Crohns and Rheumatoid Arthritis. My son was diagnosed at the age of 8 yrs. and we began our treatment at Akron Childrens Hospital. After being in treatment there for 18 months he was no better. We moved on to the Cleveland Clinic which was scary and required some referral letters but I am soooo glad we made the move. I can't tell you how superior the level of knowledge is at the Cleveland Clinic. I encourage you to research the background of the doctors you are going to. Find out where they went to school. How many cases of this type of arthritis do they see in a year? (You want to go where they treat your daughters condition in high volume, that's when they have better knowledge of what drugs work and what the side effects can be first hand.) Don't assume because a doctor's office is prescibing a drug they know how to use it. I don't mean to scare you but I feel my son's life would have been in danger if we had stayed at the first doctor we were sent to. Good Luck! I know what a journey it is to find an answer for pain for a child. My prayers are with you. I'd be happy to talk to you in more detail about
Humira if it is what she needs. Take care!

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R.D.

answers from Indianapolis on

Naporsyn can cause heartburn, so call the doctor and ask how they want it treated. I am sorry to hear she has JA. Sounds like you are on the right course of treatment. I don't have any personal experience with this, so I am sorry I can't offer any more advice. Good luck, and make sure you find a doctor you can trust and ask questions of and get answers.
R.

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D.E.

answers from Dayton on

Dear M.,
I'm so sorry. The hurt will never really goaway. You will learn how to make it a part of your life that won't stop you from also enjoying the joy, life, beauty and goodness that God provides us with. My now 24y old daughter was diagnosed with polyarticular JRA when she was 12. We used to go to Dr. Murray Passo @ the arthritis clinic in Cincinnati Children's Hospital. They are world renowned. If that is NOT where your appt is scheduled....then change it. You won't be sorry. They are all wonderful within that clinic. If I were to tell you everything we went through, it would go on for PAGES, but if you'd like to call me, feel free and I'll answer any specific questions you have. There are new drugs on the market now, that a disease modifying. They actually slow the progression of the disease. This is much better than it was for people diagnosed say even 25 years ago. That enables you to put off joint replacements and vastly improves the quality of life. There is a LOT of help out there. Ask to see a social worker and get connected with financial help as well. You can email me @ [email protected]____.com or [email protected]____.com the resources available this should not slow your daughter down a whole lot.
Blessings,
D.

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C.B.

answers from Lafayette on

naproxyn is an NSAID, if you don't take it on a full stomach, it can cause heartburn, nausea, vomiting, stomach/abdominal cramps. if she's not hungry when it's time for her meds, she can also take it with a glass of milk. i was 15 when my doc told me i had arthritis, i'm 31 now & am pretty much in the same shape i was then. some mornings it takes me longer to get going & some mornings it's not so bad. mine is mostly in my knees & hands, my back isn't too bad, i just have to remind myself that i'm not an olympic gymnist when i'm crawling around on the floor with my son & daughter. harvard medical university has quite a bit of useful knowledge on their website about it.

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C.D.

answers from Columbus on

Hi, I know what your daughter is going through too.I was diagnosed with ja at 3 months old. It went into remisson until my late 20's. Naprosyn is really hard on your stomach.There is another product called Amegesic (generic name) that works well for me and is not as hard on the stomach.Im in my 40's now and have osteoarthritis and have found that sometimes heat therapys work well to relieve pain for awhile. Very warm baths are great for your knees and back. Let the water cool gradually tho before she gets out so the relief will last longer.I wish her well. Kelly D

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A.

answers from Columbus on

hi! i understand completely what you're going through, or rather, i understand what your daughter is going thorugh! i was diagnosed with "JRA", juvenile rhuematoid arthritis, when i was 12, i'm now 25 and "grew out" or went into "remission" about 7 years ago, but i still experience alot of problems with my joints that they feel are probably due to the JRA. if you ever want to talk or need a listening ear, i'm here, for you or your daughter. my email is [email protected]____.com, they do actually have support groups for JRA, i was in one that we met monthly for swimming therapy and stuff.. swimming helps to ease the joint pain too.

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H.L.

answers from Cincinnati on

When I arrived in America (from Australia) I began to develop arthritic pain in my hands. After 8 months of being in the US, I stumbled across a website about the MSG in most packaged foods (under different names)...one of the symptoms is arthritis. I cooked everything from scratch with no pre-packaged food and the symptoms left. YOur daughter's problem could be food related...there is lots of info on the net re dangers of MSG and chemicals in our food....worth a try.

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D.P.

answers from Lafayette on

I am so sory to hear about your daughter. Please do all the research on her condition and on the best medicines. My daughter was diagnosed with fibromyalgia at age 13. I have become an expert on it for her benefit. We have found great help through changing our diet and exercising properly through the pain. We also found a web site that is very helpful. It is a support group for whatever illness you are struggling with. It helped me greatly to talk to others who were dealing with what we were as well as provide me resources and input for the different drugs and therapies. I could go to our doctor and say I wanted find out about something on the site and he was very open to it. Here is the link to your page. http://dailystrength.org/c/Arthritis-Juvenile/support-group

It really helps to have great resources. My daughter has enjoyed the site because she has friends who really understand. I have allowed her to talk to certain people and they understand her age and encourage her through a bad pain day.

Let me know if you need anything. You are in my prayers.

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S.G.

answers from Phoenix on

Hi. My daughter was diagnosed with Poly Jra in Sept. I wonder where you are ..... what happened? Would love to chat.

Shel

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M.G.

answers from Terre Haute on

My daughter doesn't have juvenile arthritis, but was diagnosed with Patella Femoral Syndrome of her left knee when she was 9, she is now 12. She began taking Naproxen as needed upon diagnosis and did suffer from stomach pain afterwards. Sometimes anti-inflammatories can be rough on someones, child or adult, stomach. Is she taking the meds with food? If so, and there is still discomfort you may need to ask your doctor for something. They now have what is called a "Napropack" and it contains a Prevacid to take each day along with the two doeses of Naproxen. Good Luck!

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J.B.

answers from Columbus on

Hello M.,
The chest/abdomnel pain your daughter is experiencing may indeed be due to her medicine. I have taken Naprosyn and found it to be very rough on my stomach. It was much better if I ate something (bread, crackers, ceral) before taking it. I hope this makes it easier for you little girl...........J.

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K.D.

answers from Toledo on

I am so sorry to hear of your daughters' diagnosis. I have had psoriatic arthrits (rheumatoid type) for over 10 years. The pain in her chest could be the arthritis, but be sure to call the dr. on this one. Also ask your dr. about the long term side effects of using a non-steroidal, like naprosyn. It can cause kidney and liver problems. I hope that the dr. will be doing periodic checks on these. You may want to consider finding a good pediatric rheumatologist in your area to manage her disease. One more thing as a RN, clinical research coordinator, I would suggest, you might want to look into pediatric clinical trials for juvenile arthritis...A good place to look for these is on the web...google the Juvenile Arthritis Foundation, I am sure that they have lots of good information on this as well as any support groups in your area. The best thing you can do for your daughter is stay informed and involved, which it sounds like you are already doing. Good luck!

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J.M.

answers from Columbus on

Hi, M.. She could definitely have heartburn from the medication. My 8 yr old daughter was diagnosed with linear scleroderma and morphea in October 2006. She sees a pediatric rheumatologist and a pediatric dermatologist. Her doctor's are at Nationwide Children's Hospital. I know that I was overwhelmed when my daughter was diagnosed. Our family had had several other medical "problems" that year. It was like what's next? My daughter gets really upset sometimes. She says she feels like she's the only one that is dealing with something like this. I know that she would love to have a pen pal if that is something that you and your daughter are interested in. If you ever need a shoulder, I'm here. Jen

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