Our Daughter's fight against JRA

Tuesday, May 10, 2011

Back up

At our last appointment we went back to where we were on the Methotrexate, she was having swelling in her right knee and ankle :(

Sunday, February 6, 2011

Good news!!

We recently had an appointment with Dr Huttenlocher and we were able to reduce her Methotrexate dose by 20%!!! Yeah!!

Now we just have to worry about reducing it..

Always something isn't it!!

Jeff

Wednesday, January 26, 2011

Wow this post is late!!

Sorry for the delay, I thought that I had made one but I didn't.

On October 23rd we held the First Annual Bone Bash in Sauk City. We were lucky enough to hold the dance at the St Aloysius church gym!

Nearly 200 people attended the dance and we raised nearly $3000 for Arthritis!

Thanks to all who attended, it really was a great time!

Wednesday, October 13, 2010

Addie made the paper!

Our local paper did an article on Addie, you can read it here:
http://www.wiscnews.com/news/local/article_c2df044a-d152-11df-a8c2-001cc4c002e0.html

Thursday, September 23, 2010

Representative Baldwin talks about Our Daughter

Representative Baldwin talking about Our Daughter in her opening statement at the Committee on Energy and Commerce meeting on 9/23/10.

Thank you Representative Baldwin!

Tuesday, August 17, 2010

Meeting Representative Tammy Baldwin

On August 11 we were very lucky to be hosted by Tammy Baldwin for a meeting on Arthritis. We were able to share our story and to ask her for help in fighting Arthritis. Our daughter started by telling Tammy that she had Arthritis, that her knees sometimes hurt but that she took shots and pills to make them feel better. She said she didn't like the shots much.

Tammy listened to all that we had to say and was very involved in the conversation. I think that she was shocked when I told her that our daughter is on a chemotherapy drug and we have no idea how or why it works, what the long term side effects are and how long she should really be on it. I could really tell that she was interested in what we had to say and how she could help. She came up with some great next steps that could really help further Arthritis research.

At the end of the meeting our daughter gave Tammy a couple pictures that she had been coloring and we gave her a photo of our daughter holding a Thank You sign like the picture below.

Tammy had just returned from Afghanistan and I thanked her for visiting our troops. I can't thank Tammy enough for her time, it really was a special experience! We look forward to future meetings!

Our Daughter's story

Sore Stiff knees in the morning
At about the age of 18 months she started limping in the morning and had swelling on her left knee. We went to multiple doctors and she ended up being sedated so that fluid could be drawn off her knee to test for infection. The test was negative and eventually we were sent to a Rheumatologist who confirmed that she had JRA. The only joint affected at this time was her left knee.

First Medications
They started her on naproxen which is an liquid medication that she takes twice daily. That seemed to control the pain and swelling for a while. After about a year and half of being on that medication, other joints started becoming affected. Both knees, both ankles, a toe and a few fingers were now stiff and swollen and causing her discomfort.

Procedure at UW Children's Hospital
She had a lot of swelling in her left knee again and they ended up having to put her under and go in and drain fluid off of her knee and inject a high-power steroid locally into the joint. She was such a trooper, the only time that she cried was when we told her it was time to go home, she wanted to stay!. The steroid helped things almost immediately. She was also started on another oral medication, Plaquenil that smelled and tasted horrible...even with bubble gum flavor....only taken once daily though :-)

Methotrexate
At her next follow up appointment, her joints hadn't really improved much, so we had to make the decision whether or not to put her on Methotrexate which is a very potent steroid with some scary side effects....if we chose not to put her on this medication, we were putting her joints at risk of severe damage in the future...if you don't treat the inflammation, it continues to "eat away" at your joints putting you at risk for bigger problems later like needing a joint replacement. Some of the side effects are mouth sores, decreased appetitie, fatigue, liver problems and some other scary things that I won't mention :-) We met with her primary care doctor for input and read all we could. We decided that the benefits of methotrexate outweigh the risks at this point, and with careful monitoring some of the side effects can be prevented or at least caught early enough to so we can stop the problem before it gets worse.

Tough as nails
So as of now she has been taking the methotrexate which is given weekly as an injection in her thigh. She takes her folic acid pill once daily and the naproxen which she takes twice daily. She does this all without any complaints or tears...all she needs is a squeeze from daddy, a princess band-aid and maybe a few M&M's after her shot and she's good to go :-)

Since starting the Methotrexate her energy level is through the roof, she is running and playing harder than ever before! It has certainly made a huge difference in how active she has been and her inflammation markers are down a considerable amount!

Pain in a 4 year old
The hardest part about Arthritis is that you would never know that she had it unless you really watch her every day. She has grown up with it so she doesn't know that she shouldn't be in pain. When she is she doesn't complain because pain is normal to her.

We are hoping that the progress with Methotrexate continues and she stays pain free most days. She still has days where her knees hurt, but they are less and less.

Long Term
Our daughter will probably live with this disease the rest of her life. The best case scenario would be that she is able to get off of the stronger meds and only takes over the counter pain relievers when she over does it. The other side of the coin is joint damage, replacement and daily pain. Lets hope for the best case!

Quarterly Labs
Our daughter has blood drawn every three months to check the progress of her disease and to be sure that her meds aren't affecting her body adversely. She climbs up in the chair herself and holds her arms out. Normally she doesn't even shed a tear. Daddy does sometimes, but she doesn't :) She also has to have her eyes checked every four months to make sure that there is no swelling. Arthritis in a child can affect the eyes just as much as it can affect the joints...but with the methotrexate the likelihood of her having inflammation in the eyes is very low.

Living with a child with JRA
Living with a child with JRA isn't much different from any other child. She does all the normal kid stuff and if you didn't know she had Arthritis you could never tell. As parents there are some things that we do to try to help her out. Mostly we ask her often when she is active if her legs hurt, if they do we try to wind down whatever we are doing. We also have to be very careful about how she sleeps, we stayed overnight at Grandma and Grandpa's and she slept on a pad that she had always slept on. However, when she woke up she complained of her shoulders hurting really bad. She actually couldn't get up off the floor because she couldn't push with her arms. The next night she slept in the real bed and dad slept on the floor, all was well.

Thank you so much for reading about our daughter's story and letting us tell it. Her JRA has made her one tough little girl. I am so proud of her and am constantly amazed at how she handles all the doctor's visits, needles and medication.

Please donate to our walk team by clicking the widget on the right side and help us meet our fund raising goal. We all appreciate your kindness!!

Sincerely,
The "A" Team.

Our Daughter's fight against JRA

Tuesday, May 10, 2011

Madison's CW interview

Back up

Sunday, February 6, 2011

Good news!!

Wednesday, January 26, 2011

Bone Bash 2010

Wednesday, October 13, 2010

Addie made the paper!

Thursday, September 23, 2010

Representative Baldwin talks about Our Daughter

Tuesday, August 17, 2010

Meeting Representative Tammy Baldwin

MicroGiving for The "A" Team

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