My baby has JRA

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Tammy - posted on 01/02/2014

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Hi my daughter is six and when she was three they said she had jra well after a yr I finally got then to inject steroid into her knee but before that the drained it..so its been good but does bother her still..it just does not swell like it did..its very hard because I am not a big believer to keep her on naproxin.so at times I give her honey thur out the day..id really love some advice of somemore all natural ways of helping her..its so heart breaking..I wish I could just take the pain for her..

Kelly - posted on 02/25/2009

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My daughter has Severe Polyarticular-Juvenile Rheumatoid Arthritis. She has it in both her ankles, knees, wrist, hands, and most of her fingers. Yes, I understand the roller coaster ride!! What type of JRA does your daughter have? What type of medication is she taking?



When my little one was first diagnosed, she had it so bad that they immediatley had to put her under anaesthesia to give her joint injections. They could not give her joint injections in her fingers because they were so little, so as soon as she woke up from the anaesthesia I had to start her injections.....Addison takes two injections a week. She takes Methotrexate, and Enbrel. Both shots hurt her, but the Enbrel really hurts!! But we call the Enbrel a Miracle Drug! She takes that, and is bouncing off the walls!!!



Addison also has to get her eyes checked every 3 months to make sure she does not get Uveitis, (a form of JRA in the eye) because she is at a high risk of getting that as well...



I understand what you are going through. There are so many side effects from taking the injections, and with using both the Methotrexate and Enbrel she is at a greater risk of developing Lymphoma, liver damage, etc.....But you just have to ask yourself, are you willing to take the risk for her to live a happy normal life, or not take the risk, and watch her be in pain, and unable to do things a 2 year old should be able to do. The roller coaster has been an emotional roller coaster as well.....

Michelle - posted on 08/06/2014

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My son is 2 years old and was diagnosed with JIA and we have had great success with a strict gluten free, dairy free diet for over a year now. He is also on meloxicam daily and that has helped as well. Research it!!!

Gabriela - posted on 02/03/2013

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My son is now 5.5 yo. He has very few symptoms left since we changed our diets which includes No gluten, cow dairy, goat dairy, night shades, especially potatoes, no peanuts or soy.
He's also on daily natural supplements to help strengthen his bones. He's doing awesome.... His stamina for walking and physical activities have increased tremendously and only two of his joints are still a little swollen. I'm so thankful to Elisabeth Taylor, Miela Gruber, and Sharon Vallone for his success to date. If you live near CT look them up - I can't recommend them enough!

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Ruggy - posted on 01/13/2014

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I feel for you. It is always heart breaking for me when I here of a young child with this horrible disease. Between the pain and swelling and the weak immune system that comes along with it, I don't know what is worse. My daughter was diagnosed with jra when she was 3 years old, she is now 17. We've been in and out of hospitals and doctors. She has been through naproxen, Enbrel, methotrexate, orencia, remicade and many other things. It seams like they are always changing her meds, nothing works for long for her. She is constantly having to get her knees drained and steroids injected no one should have to go through what these kids go through.
One of our biggest problems with jra is that a lot of people have never heard of it, they think only old people get arthritis and they don't understand how it effects them, how they get sick easier then other kids. My daughter is in high school now and her school is huge, some of her teachers are not very understanding. They don't get why she can't make it to class on time or why she has to sit out for gym often.
I really hope you find a treatment plan that will work well for your daughter, and a good support system.

Renee - posted on 07/01/2013

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Hi, my 14 month old was just diagnosed with Systemic Onset JRA. Dr wants us to start Kineret injections this week. Anyone have experience with this med? Where is best injection sight? What is the best time of day for injection? Have you seen good results? Also, any other delays or disabilities seen in kids with this disease? My little guy is not talking much these days :(.......Thanks

Natalie - posted on 02/10/2013

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by the way...what are night shades and GMO foods? Our son never expresses a gut problem, but looking back I think he did have "issues" he didn't recognize like diarrhea, etc.

Natalie - posted on 02/10/2013

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Hello, all,

I'm a Mom with a kid that was diagnosed with Systemic Onset JIA in 2005 at the age of 12 years. Now he is 20 years old. My heart goes out to all of you, as I have been where you are and the memories of that pain never leaves me, although we do well to block negative thoughts and function EXTREMELY normally....if you ignore the meds.

So to make a long story short, our son first had a 2 year flare during which he took NSAIDs and MTX. Gratefully, it ended about the time he started high school, so he could do EVERYTHING a HS kid would...including playing soccer again and making the Varsity team his junior year.

It returned 2 days before his 18th birthday his senior year. He had had a cold and was under the stress of college apps and AP courses. Bad news when your child becomes 18, though....an adult in the medical community's eyes. Had to change docs and nearly start over again, He had previously been followed by Dr. Marilyn Punaro at the TX scottish rite hosp in Dallas...a premier doctor and researcher in the field.

Anywho, someone put him on steroids....a HUGE mistake, that we will never do again. Even with MTX, it took a year to get him off steroids. We added Enbrel and plaquenil, another drug that scares me.

It has been almost 2 years now. This Fall, the MTX was making him sick, so he (being an adult) took himself off fairly cold-turkey, worrying me to death. Mind you, he is 12 hours away at college. Well, he is doing OK. He kept taking enbrel and plaq, but has since Thanksgiving pretty much stopped the enbrel. I was upset, but then he got the flu (even though he got a flu shot), so I was then happy he wasn't so immune-suppressed. (you're damned if you do and damned if you don't)

Now he's off meds and i'm praying that he is in remission. He still gets rashes, but little swelling. I am researching diets now, including the gluten free, omega 3 version recently published in the NYTimes. If we can keep him healthy with diet, it would be a godsend. Of course, he is at school and can't cook, but I'm hoping that if he modifies things even just a little, it will help. I think all the junk food he ate with friends in HS really messed him up.

I have read enough to see that there is a lot of conflicting info regarding bateria and antibiotics. Some say antibiotics help and others say they hurt.

What are your experiences with diet and antibiotics? Thanks for listening.....

Gabriela - posted on 02/03/2013

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My baby was supposed to go on Metho as well, the thought of shutting down his immune system scared the life out of me....

Tamara - posted on 01/31/2013

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Hi Melissa,

It sounds very scary what you are going through. My son was very young when he was diagnosed so my situation is a little different. He did not get any hives or fever. Not to say it is or is not JRA. More and more evidence suggest that JRA is caused by a or a combination of bacteria although most mainstream Drs are not willing to amuse that idea. Sounds like your daughter is fighting something and that something could be causing an immune reaction. Did she get any better while she was on antibiotics? If not, maybe different antibiotics may help.
Also, I would look at her gut. That is where are immune system resides mostly. A lot of times our gut is out of balance and can cause allergies or sensitivities. Dairy, gluten and nightshades seem to give a lot of RA people trouble. GMO foods are really reaping havoc on our digestive systems.

I hope you get answers quickly.

Tamara

Melissa - posted on 01/28/2013

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Hi, My name is Melissa and my 8 year old daughter has been having symptoms of JRA.. I am looking for input on our situation. Here is how it has been over the last 4 weeks or so. It all started with a hive like rash and fever (low grade) around Christmas day of 2012. The rash was only on her face and only at night (weird, I know) I have picture of each night, this lasted for about 5 days, the last 2 only being a very few spots on her face.. below is a list I made to show the dr about what had been happening.

DEC 25th hives on face only starting around 9-10 PM
DEC 26th hives on face starting around 8 PM
DEC 27th hives on face only starting around 7 PM
DEC 28th Went to Dr (no hives present, did show pictures) told to avoid yellow #5 given flu shot. stayed the night at friends house only had 1 small hive that night on face
DEC 29th had 1 small hive on face at night started with low grade fever late at night around 100.2-100.4
DEC 30th woke up with fever around 99.5 went up to 100.3 that evening
DEC 31st low grade fever only around 99.6-99.8
Jan 1st no fever, no hives
Jan 2nd woke up vomiting, no fever only threw up until mid afternoon a few times, no diarrhea
Jan 3rd still pale, no fever no hives no vomiting
Jan 4th first day back to school developed fever at night around 99.8-100
Jan 5th fever all day ranging from 99.4-100.5
Jan 6th fever on and off all day staying in 99's usually around 99.4-99.8

I stopped charting after this thinking she was fine.. then Jan 10 (in the evening) she spike a fever about 101.. I keep her home from school but she seemed fine the next day.
Sat Jan 12, she woke up saying her whole body hurt and she had a bad headache.. I took her temp and it was 102.8 (thinking the Flu I took to the clinic for a test that showed NEG).. so after much thought I called the dr and she said to record the temps for the next 3 day, which I did.. her average temp stayed around 99.2-99.8 then Monday night she spiked again over 100.5 so I took to the ER.. results came back a UTI, she was given anyibiotics and sent home..everything seemed good.. ( I did not check her temp once on antibiotics)

Jan 24th -1 day before her last day of meds she complained about her belly hurting so just to be sure I check her temp and it was 101.2.. she missed another day of school, and we took her to her ped..
after checking her all over, (no signs of any illness, no cold, cough runny nose etc) the dr wanted to send her for blood work.. she mentioned a few things it could be diabetes, virus, worse case senerio cancer, and she mantione JRA.. I never even considered arthritis, but after researching it, my daughter symptoms seem simliar.. We had the blood drawn today and will hopefully know something soon, but I just wanted to ask what symptoms other's with JRA have.. I never paid much attention to it but my daughter often says she can't stand for long, she gets to tired to quickly and will have to sit down (even if its on the ground) she has complained of her back hurting, shoulder and hips (she does Gymnastics, so I never paid much mind to it as its normal for this sport) she has even said her thumbs hurt at times.. Please anyone that can shine some light on this please do so.. I thank you in advance..

concerned mom. :)

Amanda - posted on 01/12/2013

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My 18 month old son was diagnosed with Systemic onset JRA about 3 months ago. He showed no apparent signs of having it. He was in and out if the hospital (four week long stays) over a six month period. He would have what I'm guessing would be considered flare ups and spike an almost daily high fever...but he is prone to having febrile seizures so he would have several each day and we could not control the fever without IV fluids (rotating Motrin and Tylenol every 3 hours began to become ineffective). He had no illness symptoms...and the seizures started lasting longer than what common febrile ones should last. We also noticed huge grapelike lymph nodes on both sides of groin area. Doctors would say he probably has a virus and send us home once they felt the fever had broken...but to continue fever reducers for a few days. His temp would stay alarmingly low 95.7 rectal for a couple days so we would stop giving him the medicine then his body would start having seizures without even having a technical fever. Needless to say the last hospital stay my husband and I put our foot down and said that we need answers to what is going on with him. The hospital staff witnessed a 15 minute long seizure with a temp of 99.3 and decided that a cat scan, EEG, and spinal tap were all necessary. All results came back normal. As a last ditch resort they decided to do more bloodwork but this time on his immune system. That is where they noticed abnormalities...and called in an immunologist (who happens to be an awesome pedi rheumitologist). Before labs came back he wasn't really sure what to make of it all....and was leaning more towards allergies/sinus infections triggering fever...but after examining him thouroghly and visiting with us he ruled that out. He said I could have been Stills disease, or Medeteranian fever, or something else I don't recall. So we had a follow up appt with him and they sonogramed his knees and ankles (due to some limping...I though he was mimicking me I have plantar facaitis)...and found fluid on both knees. He has swelling in ankle but that's all so far. He officially diagnosed him with Still's end of november. He was imediately put on Zantac and naproxen, but Dr said it rarely helps alone with systemic type...a month later at next check up after seeing labs they prescribed methotrexate and folic acid. With the metho they ordered no daycare...which has been strange adjusting to manipulating our schedules to were one of us is always available to care for him. We are on week three of metho naproxen Zantac and folic acid and he seems fine. He has had no serious fever spikes and no seizures! We got first 2 week labs done last Thursday and are anxious for results. I guess in hindsight he had apparent sighs of some joint pain...but I had no clue that was something you'd even think about in a baby!! Lots of you know exactly how I feel...hopelful yet heartbroken.

Tamara - posted on 12/04/2012

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Hi Miranda,



I am so sorry you are going through this. Poor baby girl. I was led to a book called The New Arthritis Breakthrough by another mom on this site. There is considerable evidence that RA is cause by a bacteria called Mycoplasma. I just had my son tested last week. We have not gotten the results back yet. If they come back positive, he will go on antibiotics. At least it will be treating the cause and not just masking it. You can check out The Road Back Foundation to learn more. I too fear my son will have to be on hard core meds. his whole life and they will only make him sick in other ways.



Good luck to you and your daughter.

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Hello!

I am so glad I found this. I was diagnosed with JRA 26 years ago, and now, my daughter has also been diagnosed with it. I was in denial for a long time and really put off going to the rhuematologist because I remember what they did to me. I was one of 11 in Ohio that was diagnosed when I was a child and I was a pin cushion and a lab rat. They put me on methotrexate and I was ill for most of my child hood. I couldn't go outside, I was constantly throwing up, I was miserable. I never wanted to put my child through that. Plus, I felt a lot of guilt because my daughter got it from me, I feel like I have given her a life long of pain and restriction. I recently wised up and started taking her back to her PR (pediatric rhuematologist) and she has it far worse than I ever thought. She has it in her jaw, elbows, hands, fingers, knees, ankles, toes, shoulders and they suspect her eyes. We are going to the optomologist next Wednesday to see for sure. They immediately put her on methotrexate, naproxen and enbrel. I understand that many years have passed and I am sure that the drugs have been altered and will not have the same affects but I am still very fearful. Although I am familiar with the process from my own experience, it is a completely different road when it is your own child. My biggest concern is the fact that I have to put her on disability. I am so fearful of her having that label attached to her especially at such a young age. I hope that all of your children are doing well. I hope that they are having positive reactions to the treatments they are given. Hopefully the worst gets done and over with now and they go into remission for the rest of their lives.

Tamara - posted on 11/03/2012

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I am glad to have found this community. There is a lot of good information and support here.



My son was 6 months old when his first symptoms appeared. It came on, when he first began solid foods. Solid foods gave him major cramps and constipation, so I took him off of foods within a few weeks. One of his pinkies was severely swollen. Dr.s thought is was an infection or tumor. It took many months for him to be diagnosed, but when I reintroduced food it was apparent that this caused him great inflammation. I pulled him off of food until he turned 1, strictly nursing him until then. Slowly I have been adding foods while he has also been on Prednisolone and Naproxen. He is hanging in there, but his Rhuematologist wants to add Methotrexate. I fear that this will only prolong his disease or give him another one. I am desperately trying to heal his gut. I believe he has "Leaky Gut". I give him L-Glutamine and probiotics to help heal that. I have also given up Gluten more recently as it can penetrate my milk supply. So far he is not showing ample improvement.



Interestingly, I had his stool tested and found he has an in-balance of bad bacteria as well as yeast. There are several studies now that have found RA patients have a lack of diversity and/or more bad bacteria in their guts. I am hoping this gets more study. Also, this may be why some say antibiotic therapy has helped.



At least for my son, I know there is a connection. I read in Dr. Rapp's book on Childhood Illnesses, that a rotation diet based on Dr. Dongs arthritis diet coupled with L-Tryptophan was very successful for a little girl with JRA. Tryptophan also causes the body to make more hydrochloric acid to help with digestion as well as help the little ones to sleep better. I may try this method.



Anyone else believe digestion has something to do with it?

KaylaP - posted on 10/31/2012

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First of all, God bless and you and your child in this HUGE undertaking. However, I myself am not a mom at all. I'm 16 years old and was diagnosed with juvenile arthritis in February of this year. I've just been endlessly searching for blogs and online communities oriented toward kids like me, who have been recently diagnosed and are still trying to adjust and find medications that work. I've been enduring a flare up for 8 weeks now, all of which have been spent at home trying to wait it out while my grades and GPA slip down the toilet ( which is EXCEEDINGLY stressful for me, as I was taking all honors and 2 Ap classes); I have recently had to switch to virtual school. Besides my meds, I've tried pain killers, paraffin wax baths, pedicures, swimming, epsom salt baths, and even a steroid IV- nothing seems to work! In addition, I will soon begin taking embrol and prednisone plus the methotrexate and meloxicam that I have been on. If anyone can point me in the right direction or suggest something that I haven't yet tried, I would be so grateful!

Mandy - posted on 10/15/2012

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My daughter is 14 months and was diagnosed at 8 months with JOA.. she has been on oral pred for 5 months and we just started oral methotrexate 3 days ago...she wakes up all night almost everynight...

Jessica - posted on 10/02/2012

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Hi! So here is my story, my daughter was diagnosed at 10 months with JRA. She has been on methotrexate since she was 14 months, and also took steroids for 2 months for a boost and has been in remission ever since, her rheumatologist is planning on weening her off the methotrexate soon and I'm worried to death that it'll come back. Anyone had similar situation?

Kelly - posted on 09/13/2012

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Also when I was younger all I took was steriods and a bottle of baby aspirin everyday. At night I would take DIme-A-Tap. I took it so much that I can't eat anything flavored orange or grape lol cause it brings me back to the bad parts of my child hood makes me gag.

The medical industry had improved so much so be thankful your children dont have to go through finding this to help mask it but now being able to take medicences that can help slow the disease down.

Kelly - posted on 09/13/2012

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Hi I'm 27 years old and was diagnosed at 15 months with JRA. But now we are thinking I was misdiagnosed or just getting wrong test result. I went to the Doctor today and he said he took two blood tests that are specifically for RA and he said I scored so low that I don't have it. I was in shock because my body is definately sick and hurting. He then said my ANA came back and he is going to do more blood work to make sure it's not lupus or any other auto-immune deficiency. He also is having more blood work done to look at my throid and I'm getting an ulta sound done. I'm going back in 2 weeks to get results. Has anyone been diagnosed with RA and then re-diagnosed with another auto immune deficiency? My mom said my joints were always swollen and red and was always getting blood work done and they ruled out it was JRA. I just recently had my third kid and I'm going through a very rough time with depression and healing but I feel so bad inside and out. I'm hoping to find an answer to make sure I'm not crazy and that there is something going on, I mean obviously there is. Please let me know! Thanks

Cynthia - posted on 08/20/2012

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Laurie, My son is on Zithromax 3 days a week. I private messaged you with my e-mail if you have any questions. It is so hard to see our children go through this, especially when they are suffering. I hope all is well with you and your family. :)

Laurie - posted on 08/20/2012

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What kind of antibiotic is he on? How long will he have to take it? I'm looking for anything to avoid MTX!'

Cynthia - posted on 08/14/2012

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To all the JRA Moms out there. You are NOT alone. My son was diagnosed with JRA a few months ago and I thought I would never make it through this. I did hours and hours of research about the side effects of Methotrexate on children. I finally came to the conclusion that putting my child on Methotrexate and other recommended medications was not for him. I found a great website called The Road Back Foundation. It may not be for everyone but it is working for my son. He started antibiotic therapy 6 weeks ago and he is already starting to show improvement. We still have a long way to go with his JRA but my son is a very active and happy boy. Like I said, this may not be for everyone but read about it and do your own research. I am glad I did!

Rachelle - posted on 04/20/2012

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i find this all weird. my daughter was diagnosed with severe poly articular jra about 6 months ago. she will be 5 in june. she is on all the metioned meds including the weekly enbrel injections i have to give her. yet none of it is working. the only thing that seems to EVER help her is the prednisone. i am starting to think her diagnoses is wrong. it there is way more to it. am i the only one who is distrusting having to stuff all these drugs into a kid? just asking....i am frustrated cause i give it all on time very week and NOTHING is helping like it should.

Katy - posted on 03/28/2012

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My daughter is in the same position as yours. She has had polyarticular bra for 3 years now and has been on enbrel and methatrexate injections going on 2 my years now. The medicine has done wonders for here but now we are back to having alot of swelling and pain. Everynight is a battle to sleep. She continuously cry throughout the night in pain. She is now also taking naproxen and tramadol for pain. I must say this is one tough battle. I hate to see my daughter in pain and wish she didn't have to deal with this!

Päivi - posted on 03/12/2012

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Let´s try again lol. I did something and the rest of my message was cut off lol.



Jenni has also regularly blood tests, every year she has a customized insoles and she has weekly a therapist session.



Please, forgive me for my many grammar mistakes!!

Päivi - posted on 03/12/2012

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Hi everyone!



My name is Päivi and our family lives in Finland. Our daughter Jenni was diagnosed with JRA seronegativa at the aged of 6. She had 11 infected joints. Docs started with methotrexate pills, folic acid, medication against nausea and pills for pain and of course cortisone injections. Mtrexate pills gave her heartburn and lost her appetite. Docs decided to change pills for Mtrexate injections in order not to disturb her tummy. Later they decided to try a new medicine in order to make her get back her appetite (which has never been good) She now takes Arava pills instead of methotrexate. Every 2-3 months she has her check ups and treatment days at hospital. Regurlary eye check ups also are part of her life.

Kelly - posted on 10/03/2011

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Very interesting question Allison. My daughter was diagnosed at 15 months, she is now 5 and has been on Methotrexate since she was 15 months. She too wets the bed. I have tried everything you can think of. I talked to her doctor as I was concerned and she said that it was normal for some kids to wet the bed up to age 10......I hope it does not take that long. She has been potty trained in the day ever since she was 2, but still can't get through the night......I am going to research.........

Allison - posted on 10/01/2011

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Hello, my 6 year old daughter was diagnosed 4 years ago. She has been on methaorexate for 3 years and she wets the bed. I am wondering if any of you moms out there with children on methotrexate are dealing with bed wetting. It is hard to know if it is just my daughter or if the medicine is affecting her bladder abilities.

Kelly - posted on 08/09/2011

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That is right. Keep praying. We must continue to pray for our babies. God will heal them one day. I have faith!

Laurie - posted on 08/08/2011

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Thanks for the advice. her doctor said he doesn't think she has lupus because she has no other symptoms of it. So he is looking at whole picture but he doesn't understand y she has that marker. that she is too young to have lupus. We go back at the end of the month so hopefully things have gotten better by than. Just have to keep praying!!

Kelly - posted on 08/08/2011

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Addison started walking when she was 11 months. The Lupus is what I was thinking you should get a 2nd opinion on. I don't know what the levels are for Lupus, but the 28 to 68 seems to have gone higher than I would think as normal for nothing...... I am no doctor, so please don't take my suggestions to the bank. As a parent though, I would get a 2nd opinion or even ask the doc about it again.....

Laurie - posted on 08/08/2011

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Kelly, how old was she when she started to walk? Adriana gets around by scooting and she will move her legs if we are holding her hands. Just some days she isn't up for it. What do you think I should get a second opinion on ? Besides the lupus.

Kelly - posted on 08/08/2011

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Laurie,
My daughter Addison was diagnosed at 15 months. But she had symptoms, and I had no clue as to what to look for when she was 11 months. Addison will be 5 next Monday. Before she was diagnosed she did not want to walk and she would scream and cry in pain in the mornings. She too did not want to do anything but lay or sit. I think you may want to get a 2nd opinion esp. on the Lupus......Good Luck!!!

Laurie - posted on 08/06/2011

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My daughter just got her official diagnosis of JIA ( that's what they are calling it now) at 16 months. She started with the symptoms when she was 13 months and has been on naproxen since. Right now it is only in her right knee. Her blood work Is still abnormal but slowly going down. Her sed rate was 120 when this all started and is Now at 45. However they tested her for double stranded DNA and that test actually went up from 28-68. This is a test for lupus! But her pr says he doesn't think it's lupus. And for me not to worry. But how can I can!!! Has anyone else been tested for this????

She is still not walking and will not even stand with out holding on to something with both hands. Lately she doesn't even want to do that. It's so heartbreaking!! Any one else going through this?

Kelly - posted on 08/01/2011

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Colleen,

My daughter was diagnosed at 15 months. She had the red in her hands and her feet. What made me notice is her fingers. They were so swollen, and when she would get up in the morning she would cry when I would stand her up to put her pants on or when she walked. Keep a close watch on her. I know you already are. Have they done blood work to test her ANA, and Rhuematoid Factor? This may help if they have not done this.
Take care....

Melanie - posted on 07/30/2011

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my daughter who is 6 was diagnosed at age 4 , but I believe she had it much longer . its been a roller coaster ride for us , naproxen and prednisone and injectible methatrexate and zofran and folic acid and prevacid and usually daily tylenol are our list of drugs, she has had 2 steriod injections but did not help. She had just recently been started the wheening process off her steriods but when we got below 9ml a day she started to lare again so we areback to where she started 6 months ago at 15 ml a day . its so hard watching your child suffer and feel different from her friends, she cannot keep up with friends and the y don;t understand , heck most parents of " healthy" kids don;t understand. I pray every night for a cure .



Melanie

Colleen - posted on 07/08/2011

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So quesiton....how can you tell when they are babies?? Anyone have red feet with out the swelling? what about only foot pain with no hand pain or swelling?
My doc said it could be this and i am of course paranoid, he said to just watch and look for certain symptoms...
her feet are bright red when she stands there and cries and won't walk.....

Tiffany - posted on 02/01/2011

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My son was diagnosed with systemic on set jra when he was 9 months old. He's been on Naproxen for the past year or so and it has helped a lot. He's now 2 and a half. Is there any exercises in and out of the pool we can do to help his legs??

Nicole - posted on 11/18/2010

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If you live in a Southern State there is a great family retreat for kids suffering from Rheumatic diseases. It meets in Shreveport, LA every June I found it very informational and now has become a staple part of our summer plans. My son is now 12 and his JRA has been rediagnosed as Ankylosing Spondylitis becuase it is now in his spine. The retreat has fun kids activities all day and the parents have conferences and question and answer sessions, the best part is it is very inexpensive.

Kimberly - posted on 11/11/2010

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hi! i just joined this group. I have a son who was diagnosed with systemic jra in June of 2009. He is four years old now and doing pretty well with the exception of some occasional infusions and MRI's because of ongoing pain. How old is your little one??

Rachel - posted on 08/01/2010

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Anyone from Victoria, Australia out there?
My 4y.o. has had Severe Polyarticular Juvenile Rheumatoid Arthritis. Diagnosed when she was just 18 months old, she suffers from it in her hips, knees, ankles, feet, elbows, wrists, hands and fingers. On Methotrexate, Naproxen and joint injections... but not doing well... feeling really alone... really hard to find anyone in similar situation in Australia... anyone out thwere?

Gabriela - posted on 06/20/2010

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hi all my name is Gabriela, my son Brennan just turned three and has had JRA for a lil over a year....it was one kne than two, then one, now in six joints... knees, ankles, and hands... he walks funny, cant jump well, cant draw circles... i think he knows how - he tries, but his lil hands dont seem to let him.
when JRA spread to his ankles nad hands i called the rgeumatologist... had to wait three months to get in to see him... partially p.o'ed about this, but also thankful that in the meantime, a friend suggested i change our diet to a gluten free diet... a few days after changing diet, i saw a big improvement in my lil peanut, when it was confirmed by blood work, i cried, i was angry frustrated and scared... i had asked all along what could be the underlying cause for all his illness, RA is an immune response...what is causing this - no answer. I gave my ped. bloody stool to test - they lost it!
We had only been gluten free for about three weeks when we saw the RA specialist....he asked if we had seen improvement - and i sure have, no more blood in the stool , no more puke and poop, or cry and poop episodes, the nodules on his hands have gone down considerably... and yet he still recommended that he go on MTX - http://en.wikipedia.org/wiki/Methotrexat... of coourse i looked up the drug - scary stuff... i was scared enought at the docs office - i cried and cried when the words immunosupresssants hit the air, you see Brennan has already had pneumonia three times... first time 2X bc of sick daycare worker - third time bc nurse thought i was exaggerating about a cold - eneded up in emergency room the next day!
Please get all of your babies tested for Gluten sensitivity http://en.wikipedia.org/wiki/Gluten_sens... if you compare how MTX works and how changing your diet can do the same thing...well i think we can all do without more needles in our lives... i am mortified bythe thought of this....we see the doc again in three weeks - to talk about MTX some more....I called my friend who suggested GS as a cause for the JRA, she suggested Intergrated Manual Therapy - it's a form of physical therapy - very gentle, but powerful. I have only gone once, and that evening at dinner lil brennan said mommy, i'm happy, i'm happy too much! before dinner he had been hoping up and down, dancing around, wanting to climb up to wash his hands by himself - things that he normally hurts too much to do! i was thrilled so i decided to give it a try and do the "homework" every night i just do some light hand placements ( i know it sounds kooky, i wuld have not tried had he not said he was too happy) every morning he has a poop - without crying, without puking... before i was lucky if he pooped twice a week! i know that the gluten toxins are leaving his body....his hands are becoming more normal again.... and i'm now starting to measure his joints daily to have empiracal proof of his improvements... im sharingthis bc i know it may not be the answer for all of us, but maybe a couple of your kiddos see the positive result that my lil guy has. and no scary side effects....obvioulsy, if the chnage in diet and PT dont help enough, i will be crying about the shots. bc i dont want him to be in constant pain.... god help us all.

Kelly - posted on 06/17/2010

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Hi Sharon,

Addison's arthritis normally bothers her more in the winter, and when it rains. Sounds like your family has gone through a lot. But I am glad to here that Ciarra is in remission. Addison has her 3 month check up next Tuesday and hopefully we can start remission.....praying daily!

Sharon - posted on 06/10/2010

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Hi...Im new to this community and trust me am I finally glad to see one i thought i was going to start my own. I have a daughter who was diagnosed w/ Systemic Onset Juvenile Rheumatoid Arthritis at the age of 14 months old after being diagnosed w/ Kawasaki's syndrome. I have to travel 2 hours to see a Pediatic Rheumatologist. and I am grateful for her doctor b/c he has saved her life more than once. My daughters "branch" of arthritis affects her legs as well as her knees mostly. But it also affects her main internal organs mainly her heart lungs, kidneys that sort of thing or at least thats what they said when she first go diagnosed. Pretty much when she flares up you can tell!! It has been a very long road for us...I would love to tell my story w/ it but its spanning nearly 10 yrs!!! and that alot of info! My daughter, Ciarra, is going to be 10 this year...OMG. Its going to be a huge milestone for us. Ciarra takes Methotrexate as well but in a pill form b/c she can swallow pills..as well Enbrel [by injection every 10 days now], Thalidomide, Folic Acid too to go w/ teh methotrexate. Enbrel is by shot bbut i refuse to give it to her. She was diagnosed before the ENbrel even came out on the market. When i saw that it had worked wonders for another child I had asked about it but since it was still in the "trial stage" w/ the FDA we had to wait. As i skimmed thru everyone elses post it was hard to keep up as I have endure the same amount as the next one.. I will say Ciarra is in a remission state now as she was very very sick when she was quite young. She ended up have a central line put in b/c she needed to have weekly IV meds that took 2 hours to drip. She has been on Remicade [and is now allergice to] We have doen the steroids which made her so chunky she was wearing sz7 clothes at the age of 3!!! SHe is now in a size 8/10 in girls and finally weighs over 50lbs. Even at her heaviest point she still didnt go over 50lbs. Reason why she gained weight was after we found out she was allergic to the REmicade we put her on Solumedrol. no big deal until after maybe a few months I guess there was a shortage of it within the nation so they made a switch to DEcadron (steroids still within the same family as solumedrol) nurse said it would be less sides effects and such so we gave it a whirl I mean for less side effects who wouldnt. WEll little did we know our daughter is backwards??? it made everything worse, starting having problems w/ her heart adn her other main organs even her intestine...it was insane/ not to mention at the time i was also working. She has gotten over that hurdle and is doing well for now so we will see but everytime ehr Dr wants to lessen her meds she flares up. When Does your childs arthritis affect them the most; Winter or Summer?? Ciarra is a bit backwards. She is more affected with the heat adn tends to be more "comfy" in the cold. but at the same time she get bronchitis and ear infections like clockwork every 2/3 months during the year..its more common for her to be out of school during the winterbeings sick sick than it being her arthritis. Does anyone have other delays or disabilites along with the JRA??

Kelly - posted on 12/21/2009

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Kristina,

Welcome, and I feel your pain!! It is very hard to watch your baby go through this, knowing there is nothing you can do, and yes it is hard to put your child on these medications. Addison has been on Methotrexate and Enbrel for 3 years now, and I still fight with it everyday!!!! You asked if anyone was giving Methotrexate by injection? I am. Addison takes Methotrexate, and Enbrel by injection once a week.

We take her every 6 weeks to get her blood checked, to make sure the medication is not damaging her organs. Just last week I got a phone call from her Rheumy, and they said that her ALT results were elevated......so there is never a dull moment.

I too, had to watch Addison not being able to walk, and it was heartbreaking! The winter is always the worst!

Take care, and I hope to you and your family have a Merry Christmas!!!!!

Kristina - posted on 12/15/2009

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Hello all! *sigh* WOW
I'm so happy to be able to talk to ya'll! Let me tell you a bit about my daughter Milly.

She was diagnosed with Pauciarticular JRA 4 days after her 2nd birthday. She had been sick for 2 months prior and wound up waking up one day unable to walk. So HEARTBREAKING to see your child go through this pain and confusion.

We were introduced right away to a Ped. Rheum. in Indianapolis, only 2 hours from home. We started out (Feb. '09) with Naproxen & Zantac (preventitive for history of acid reflux) and Physical Therapy. With little immediate improvement, we went for joint injections (left ankle, right knee). Amazing results. We continued the Naproxen and daily PT.

In the May/June ish '09 she had a flare up due to sickness and was put on Orapred (Prednisone) along with her Zantac, Naproxen...and antibiotics! How fun, giving your two year old 4 meds 2x a day!!

The Prednisone, although immediately solved her inflammation issues, had horrible side effects which included, huge appetite.. and anger. My baby experienced a range of intense emotions that I couldn't begin to explain to her, or help her understand. She was on Prednisone for a month and was slowly weened off and transitioned to Methotrexate.

Putting Milly on Methotrexate was probably one of the hardest decisions I've ever made in my life. What other choice did I have though... from a medical standpoint?

Milly has been on Oral Methotrexate since late July/early August and was doing amazing. She started at .2mL and is now on .5mL. She no longer takes the Naproxen and because of that she no longer takes her Zantac...phew! Her Naproxen ended up giving her sores on her mouth/tongue and face. She had increased sun sensitivity and broke out with small sores on her face...it also stained her teeth! So happy to have her off Naproxen.

She had no flare ups from Aug. '09 to Oct. '09, which seems like forever.. finally watching your 2-yr old... act like a 2 yr-old! I told her doctors, "this makes me nervous!" Sure enough, she got sick in early November and flared right back up, this time, both ankles, both knees and her right wrist.

Our last trip to her Ped. Rheum. and Opthamologist was Nov. 30 '09 and we upped her does of Methotrexate and continue doing Physical Therapy. They told me that her first winter after her diagnosis would be her hardest...so we'll have to grin and bear it and be ready for the worst!

Her Opthamologist appt. did not go well and she was diagnosed with Mild Iritis and now takes a steroid eyedrop 3x's per day. BTW, if you ever need a way to get your child to take eyedrops.. let me know!! lol, I had to set up a reward system/sticker chart and it's beautiful, Milly actually reminded me this morning to do her eye medicine...WOW!

So, we roll with the punches, don't we? There never seems to be a time of unease for me, I'm always worrying about her JRA and just wishing it would go away and FREE her!

Questions:
Is everyone using injectable Methotrexate? Mine is in vial form, but we are instructed to take it orally...

Anyone else have experiences the day or so after their child takes Methotrexate? Milly gets emotional, sometimes angry. Her joints get hot, sometimes even her head, with no fever. She takes super long naps, sometimes 3+ hours.

Anyone else have a bad experience with Prednisone?

Who else has been diagnosed with Iritis? Steroid drops? Any success?

Thank you ladies for reading this! I can't wait to connect with other mothers who are experiencing the same trials!

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My daughter, who just turned 2, was just diagnosed with either JRA or CAPS (blood-work/DNA test pending). She is being seen by Texas Scottish Rite Hospital for Children here in Dallas. They were highly recommended to us and they truly are a blessing! She just started her injections last week and already has improved a lot. For anyone in Texas, Scottish Rite is THE PLACE to go!

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