Tummy Trouble and JRA

Breanna was a great eater before being diagnosed with arthritis. It wasn't until she was 2 that she became this horrible fickle eater. I noticed she did not eat that much and asked the doctor. He said, "Don't worry she is just 2." Well as the time passed it progressively got worse and worse. Breanna is not a skinny girl but she really only eats one time a day (lunch). I noticed sores in her mouth and acid reflux issues at almost 3. An intern asked if we had been taking folic acid. No I didn't know we should of. I guess it is common knowledge if you take methotrexate you should take folic acid. How was I suppose to know. I do know now that I have to be a very proactive member of my daughters team. Don't just put all your trust in the fact that the doctors will have all the answers.
Now Breanna is 4. At the 2009 National JRA conference I became aware that a lot of children suffer from chronic stomach aches. I learned that the medication can sometimes be the cause other times it's a condition associated with the arthritis going after soft tissues and other times its a completely separate problem. Never the less I needed to get to the bottom of the problem.
I came home and made an appointment with my regular doctor and explained that she complains of her throat and stomach burning, yucky burbs, diarrhea, and just doesn't feel like eating. He checked her out and agreed that she needed to see a specialist. I complained for about 2 years with her rheumatologist and got no where he got me the referral that day. The GI clinic is a busy one the next available isn't for 2 months.
So now I am dealing with the fact that the ankles and knees are starting to swell. She is still taking the Methotrexate, but she refuses the NSAIDS. If I do give the NSAIDS she gets nausea. I think we are going to try the mobic. I will post more about it when I find out more.
I am up for sugestions or comments if anyone has anything for me.

More on the Juvenile Arthritis Conference

At the conference we were able to meet so many great people. The parent Networking session kinda kicked the whole thing off. It was nice to swap stories with other mothers going through the same things. We also attended a lot of great workshops. Some of the things I have learned to implement in our home: The medical Journal - keep every bit of health history in binders so that you have it at all times accessible. A plant based diet is healthier. Fruits and vegetable are natural anti-inflammatory. While meat fats are inflammatory. Also Albacore tuna has more of the Omega 3. Nordic Naturals sells a taffy type that does not up set the stomach. We also found that the V8 fusion is a delicious way to sneak in more fruits and veggies.

We also have realized that this has its effects on the entire family. I may only have one child with arthritis but they all have to deal with it. The time it takes at all the doctors, watching her suffer when she is sick or having trouble getting around, and the added stress it puts on me all takes away from the other children. I hope that we can all really learn to take it one day at a time and always love each other even though sometimes it's hard.

National JRA Conference

I had the wonderful privledge of going to the National JRA conference. Although it did not cure my daughter, it has made my us all feel a lot better about this disease we are battling. Yes it does affect all of us. Breanna is one of 4 children and it has its effects on all of us. We were able to show Bre that she is not alone by meeting other children with the disease. My oldest daughter found out she is not the only big sister dealing with the emotional roller coaster of growing up with a younger sibling with JRA. I had not realized but I too needed to know that I was not alone in this battle as a mom trying to balance my life and the curve ball of all the doctor appointments involved in raising a child with JRA.

Arthritis Walk

I have started a team for the first time to participate in the 2009 Arthritis Walk. As you may know my daughter has JRA. We have been helped so much by the Arthritis Foundation I wanted a way to give back. Please help us with our journey to fight and cure Arthritis. Our teams name is "Breanna's Troop" visit the website kcarthritiswalk.org then go to teams and visit our team page.

Communicating with Doctors

We had to start Breanna back on methotrexate last Tuesday. She has active arthritis in her right ankle and foot. They are so swollen I know she has to be in terrible pain. She is a strong 4 year old. It gets her down sometimes, but she usually gets back up. Not lately she has just wants to lay around. I try to get her up but she hurts. She has been asking for a wheelchair for Christmas. I had to put her back on the medicine to treat her arthritis. We have always had tummy problems while on methotrexate. The doctor convinced me to try it in the shot form rather than oral. As much as I hate the medicine not to mention having to give her a shot every week I did what the doctor wanted. We gave her the shot on Tuesday she was sick Saturday morning. The day before Easter, my poor baby threw up all day. It was off and on worry for the next 2 days with every pediatric Rheumatologist on vacation. Breanna could not keep liquids down but we just tried our best to get them down. We had to with hold her pain medication because her tummy was so upset. On Easter day she was so weak so could not even stand on her own two feet. As bad as I just wanted to cry, I picked her up and told her she had to fight now. She had to eat. She had not kept any liquids or food down since Friday night. I held her and gave her drinks and bites like she was an infant. She was whining "I don't want to." So I warned her if she didn't we would be "back in the hospital where they poke you with needles and pump it into to you. Your body needs food for energy to fight the sickness off." I told her not to give up. She had to fight too. I got her to drink 8 oz of water and eat 2 crackers and she slept for about 6 hrs. I called the nurses hot line while she was asleep and they told me their recommendation was to get her seen. It was Easter Sunday. Who could she be seen by? The ER won't know anything about Juvenile Arthritis. I got a hold of her Rheumatologist they told me to take her to our regular physician. Monday she seemed somewhat better. She had a horrible case of diarrhea, but she was still not eating. At dinner we made her eat, actually we bribed her with a game to play after she ate so many bites. She was on her 4th bite when she threw up all over the place. Obviously she was not better. The next morning her bm was pink. I made a doctors appointment for that afternoon so I would not miss class. Her doctor was not impressed. He said the same thing he always does. "It's a virus if it last more than a week come back." I told him no one else was sick not even her one year old brother who thought her puke bowl was a great hat. I can't get my point across to him that I think its the medicine. We were supposed to give another shot to her today but she still is not eating. We have tried to feed her everything. She wants to be fed and acts like the whole act of eating makes her sick. She holds it in her mouth and gags it down. At dinner she only ate 6 bites of food. I am going to try pedia sure as much as I don't believe in it. I hope we can finally get someone to listen to us. We are going to give her the shot when/if she starts feeling better. We have an appointment next week. If she get sick again after the shot I will probably have to throw a fit and stomp my feet. But I ain't leavin' that appointment until someone listens to me and prescribes a different medication.

Juvenile Arthritis

My 4 year old was diagnoised at 16 months with JRA. We are fighting side effects of medicine and I don't know what to do. Is there a safe medicine for her? Our rhuematologist said that the methotrexate was safe. Now she has sores in her mouth and suffers from a folic acid defiecency. I have learned now to do my own research not to just take the doctors word for it. Now that I am reading up on the medicines I am scared to death for my daughter's health. I pray everyday that we will find a balance between treating her arthritis and her having quality of life and that her treatments won't effect her quanity of life.

Stressed

I have been so busy lately. Tax time is rough at H&R Block I am trying to find that balance between, work , school and the family. It is really hard though with 4 children and 4 jobs.