Introductions

[happy_acres]

Hello! While what brought you here is nothing to celebrate, I am glad you found us. My name is Kelly and I have a 9 year old daughter who was dx with JRA at 2. We've been through lots of ups and downs, meds and injections, eye drops, pain relief, tears, and achy nights. We've had our share of mood swings, feelings of inadequecy, trials and battles. I created this group for many reasons. One reason is b/c I have found very few people have even heard of JRA and I want to provide as much info as I can. This group is also for support... to support fellow moms, the ones who cry, worry, pray, make ice bags, plug in heating pads, rub on ointment, inject meds, and comfort our achy little ones. God knows our job is not an easy one. I want this to be a place where it's ok to ask questions, blow off steam, seek advice, share what works, and vent frustrations.

Feel free to introduce yourself and tell us about your story so we can get to know you and you child! 

[Vandy77]

Hello, my name is Vandy and my 11yr old daughter was dx with JRA at the age of 4.  It took the doctors nearly 2 yrs to decide that is what she had though.  Until we had her meds regulated we had our share of ups and downs, times where she couldn't get out of bed weeks at a time because just a small movemnet would set off flare ups.  I remember where she missed nearly 3/4 of her first grade in school because of the falre ups.  thankfully now with her meds she is doing so much better and has become the active child I have prayed for so long.  Now she's becoming a pre teen and that scares me more then her JRA.  LOL

[Christina1974]

Hi, My name's Christina. I'm a 32 year old mom of two girls. Breanna's 5 and Brooke will be 3 in July, Breanna was diagnosed with JRA/pauci and kidney reflux disease in September of 2003. She was 18 months old. She wore an orthotic shoe on her foot for a year and a half. She's had many cortisone injections in her ankle. With medicine and occupational therapy, her ankle is great and she no longer needs the orthotic. The arthritis has spread to her finger joints, her neck, her right knee and her left wrist. She's on methotrexate injections and Naproxen at the moment. She was also diagnosed with type 1 diabetes in November of 2004. She takes 8-10 shots a day for that, plus finger pokes for blood sugar testing. She's also on a low dose of amoxicillian for her kidney reflux disease as a preventitive measure to ward off kidney infections. She's a loveable, happy, talkative 5 year old that is anxiously awaiting Kindergarten in the Fall. She just can't wait.
Breanna and Brooke absolutely love spending time with each other. They're each others best friend.

[MotherOfLucas]

Hello I am Jennifer and my son Lucas is 9 years old.  Lucas was diagnosed with Polyarticular JRA at the age of 4.  We have tried methotrexate orally (both in the liquid form and the pill form) and injected, naproxen, steroids, Enbryl and have been doing Physical and Occupational therapy 2 times a week...with no relief.  During the summer Lucas seems to do a bit better...but the winter can be absolutely grusome for us!  We are here to hopefully find other families that are trying to fight the same battle.

[mome2juliahna]

Hi, I'm Jenny. I'm a 29 year old single mom to a beautiful 17 month old daughter who was just diagnosed with JRA. I am taking her Monday to have her eyes tested and waiting for the nurse to call with an appt to do the sterroid injections.

When I first noticed Juliahna's symptoms, it was just a knot on her foot. A month later, her knee was swollen and she was limping. After taking her today, the dr said she has arthritis in both knees, one toe and the top of her foot.

I'm scared to death, worried to death and feel like I'm going to break at any moment. I hurt for my baby...to see her in so much pain, knowing there's nothing I can do for her.

I'm glad I found this group, at least you all know and will understand my feeling and emotions.

Jenny

[motherof4and2]

Hello, my name is Crystal...I have 6 kids but only one of my kids fits this group. my 3 year old little girl started having problems with her knee about 1 year and a half ago. It would swell so big and hurt her so bad that she would walk with keeping her leg straight and without bending her knee. We finally made it to the arthritis doctor about 3 months ago and he said he was pretty sure that she had JRA and that I needed to go ahead and start reading up on it. So I did and her second appt. is Oct.1st. I am really scared because her knees look like they are started to be deformed and I am not sure how much painful the injections are or anything. I really needed to be apart of this group to have support and talk to other moms that have already been through the diagnoses part of this and what comes next. There are so many meds she will have to be on. Do a lot of kids have to have surgery? I am worried about several of these things so please if you would like to help me with your stories please email me. Thanks.

Are you a mom of a year 2000 baby? Then come join my group:   http://www.cafemom.com/group/19997/

[laurieta]

Hi, my name is Laurie.  I am a mom to 3 wonderful girls.  My 13 year old daughter is in the process of being diagnosed with something, most likely JRA.  For 1 1/2 years now, she has complained of aches and pains (although, thinking about it, it has really been a lot longer than that).  She has been in physical therapy since the end of August.  They pulled me in a couple of weeks ago and said that they thought more testing needed to be done as PT hasn't seemed to do anything for her.  She originally went in for her back and knees.  She has been using crutches the past 2 weeks because her one knee has been bothering her so much.  She has had to sit out of volleyball which really upsets her.  The dr ran blood work which came out negative for both JRA and Lupus.  However, I have done enough reading to know that it doesn't always show up on blood tests.  Since her knee swelled up along with her foot and toes, they did xrays of the one leg, from the toes to the hip and found nothing there.  She goes to the orthopedic specialist tomorrow morning.  I am going to insist on an MRI I think.  Any advice?  What do I ask?  I need whatever this is to be diagnosed so we can start dealing with it.  She is one of those kids who has a hard time swimming because she is extemely achy afterwards?  Has anyone ever used Wobenzyme N?  It is a natural supplement her chiropractor wants us to try.

Thanks,
Laurie

[ljg38]

Hi, my name is Lucinda.  I am married and have three children.  Our youngest, dd, age 7 was diagnosed with systemic JRA this past week.  She has had a mysterious rash off and on for almost a year, having it now for the past four months.  We have seen numerous doctors for this rash and they couldn't figure out what it was.  I finally put the pieces of the puzzle together when she started having a fever and realized that she did indeed have JRA.  Now she is on an anti-inflammotory  and is doing better but still has the rash and fever. 

I am joining this group, hoping to find moms that are dealing with similar situations.    Is there anyone out there who has a child with systemic JRA? I have a few questions regarding the rash and fever. 

[friendlymom5]

Hi,
My name is Lisa. I have 5 great kids. My 10 yr old daughter Joslyn has been dealing with Systemic JRA diagnosed at 2. She is having a rough year this year. I am looking for more support for her and suggestions. She is having more stiffness, pain and atrophy in her hansd and arms. She has had numerous infections, flaire ups, and her grades have dropped alot. Overall she is having as I said  a rough year.

          ~Kids Rock!!~

http://cashcrate.com/388648  I just got my first check, I'll be darned, it does work! Yay!

[Deetipton]

Hello! I'm so happy to find a forum and know that we're not alone. My 6 yr old has been tentatively diagnosed with JRA. We see her rheumatologist on Jan 10 for the official confirmation, but I'm 98% certain that's what it is. I believe it's the polyarticular type. Emily had pnemonia in April and just never really seemed to recover. We noticed a bump on her hand, but x-rays came back clear. Eventually we noticed she was limping. X-rays of her hips, knees and feet came back clear, but the RA factor, ESR/SED rate and her liver enzymes were all elevated in her labwork. Now it seems that every week we find a new nodule has popped up. She's got them on her feet, her knees, her hands, elbows and wrists.  Her fingers are always swollen and she can barely hold a pencil.  We've had numerous nights where she has woken up crying about her arm. She doesn't play at the park. She doesn't run. She has a heck of a time getting up.  At first, before we realized what was going on we noted that she gets up like an old person.  The only time she's moved somewhat normally was when she was on Prednisone for her sinuses. Her sinuses were just CT scanned recently showing that they're mostly blocked. A hearing test show that it's affecting her hearing. And she's got a mild form of high-functioning Pervasive Development Disorder with high anxiety. We're having a hell of a time trying to keep it all together right now. I have spent a lot of nights crying for her, but I know it has only made her stronger, and she is one of my heroes.  She never complains.

[matlogtri]

Hi my name is Tricia Affholter and I have 2 sons.  My youngest son is  3 and was diagnosed with JRA when he was 18 months old.  He would wake up in the morning and limp.  After seeing an orthopedic specialist and going through x-rays and blood work we were sent to a rheumatoid specialist . They felt his knees and knew right away that he has jra.  He is on naproxen, methotrexate and folic acid.  We are fortunate that it seems to keep the swelling away . He also has to have his eyes checked every 3 months as it can affect his eyes.  I have never really found a support group with other parents dealing with this so I was so glad to find this group