Arthritis Advocacy Take Action Now Time is Running Out

As a parent of one of the 300,000 children who suffer from arthritis, a chronic, painful, and often disabling disease, I want Congress to pass meaningful health care reform this year that is accessible, affordable and comprehensive.

Arthritis is the number 1 cause of healthy people having to stop working and go on disability. There are 66 million adults living with Arthritis today and the number is on the rise. This disease cost the country $128 billion dollars annually. With early diagnosis and proper treatment this disease is treatable and many can continue living and working saving the governments money for the really disabled.

American families, both insured and uninsured, are struggling with rising health care costs. Due to the nature of chronic disease, people with arthritis struggle to pay for physician visits and the increasing costs of multiple medications and other necessary care to properly manage their disease. Without access to appropriate care, people with arthritis are at greater risk for complications and permanent disability.

I support health care reform which eliminates the discrimination for health coverage based on health status; caps out-of-pocket expenses; eliminates lifetime limits on health coverage; promotes prevention services, and supports loan repayment for pediatric specialists. These reforms are included in the Patient Protection and Affordable Care Act and will greatly improve the American health care system for adults and children with arthritis.

I also support a bill mandating a National FDA registry of the Juvenile Arthritis Drugs being given to our children and the outcome of a patient's long term use. The drugs are working amazingly, but much research is needed to detirmine the long term effects and to address the current side effects of the medications. I don't want to see my daughter stuck in a wheelchair with excruciating pain. She was diagnosed at just 14 months old. I have seen the medication help her walk again twice. Her Arthritis is now manageable, although we still have those days that her shoes won't fit on her feet. We have to try to push through this everyday. She is only 4 years old now and she gets a shot every week that makes her sick for 1-2 days after. She is on folic acid supplements because of the sores in the mouth from medication. She takes 2 times the recommended amount of Prevacid because of the acid reflux the long term use of medications have caused. Along with a Rheumatologist she also sees a GI specialist. We fight with elevated liver enzymes that we monitor closely with lots of blood test. She always amazes the nurses and me with her bravery and strength. This disease can cause even the strongest of souls some times of frustration. It is definitely not a life for a 4 year old, but we continue to push forward. Because we want the chance for he to play and run and be a kid while she can. I do wish I had all the questions answered. I ask the doctors and pharmacists, "How will this medicine affect my child?" How can I be prepared for what is next to come when no one can answer the question of what are the long term effects of this? This is why I ask you, no I beg of you to please help us bring attention to the dyer need for more research and better record of this disease and its course of action. I hope to see changes as the legislation moves through Congress and maybe some answers to my questions in our future. Thank you for your consideration.

Discipline of My Children

After baby number 4 my husband and I were so tired and so overwhelmed by the amount of work that we had to endure everyday. Because we had the last 2 babies back to back it was hard to get anything done. One person had to deal with them while the other worked their butt off. Then the older 2 girls were running crazy and doing everything, but helping. Usually, making more messes.

I knew I had to find a better way. So I came up with a system that not only encouraged good behavior but also incentive for helping with the house work.

My girls earn tokens for good behavior and housework. They cash in tokens for things like - one on one time, trips out to library or ice cream, a day off the dish duty, playing board games. I find a lot of the time they just want time individually with us. I make the amount of tokens reasonable 10-20. If it cost me money they have to have at least 20 tokens. I tell them that's because I have to do a lot of work to earn the money. So, I am also teaching work ethic.

First I thought of things the older girls can do.

My 9 year old is assigned morning dish duty every morning.
My 4 year old empties little trash cans and picks up toys every morning.
They have to do this everyday no complaints.

If they complain they still do it but when they are finished I let them know there will be no token awarded for the job. I only do this if they throw major fits.

We went to the store and we bought dry erase boards and markers, some see through containers, letter stickers and fun stickers, and some plastic tokens. I let them pick it out at the dollar tree so it did not cost a fortune. Only like $10 bucks.

We took these items home and started to decorate. They each have their own dry erase board with name and also a container for tokens with name. This took right off. They were both so excited to help and earn tokens.

This also helps with them to follow rules because they work to earn the tokens I usually only have to take one away for misbehavior.

On the dry erase boards we wrote down rules like listen to parents, no being mean to siblings. We left the real broad and simple. We keep track of chores done by smile faces. At the end of every night after brushing teeth,pajamas,and clean rooms they are awarded their tokens.

We usually leave Saturday open for cashing in the tokens.

It works if you work it consistently. It really is just a way to remind me to give them praise for when I see behavior I want from my children. And to discipline with out a lot of attention given on the matter.

When they misbehave they still get a warning that they will lose a token. Sometimes we have lost all tokens and still misbehave. I do still ground from T.V., outside, and phone. But not as often.

I have also established a way to calm my 9 year old's fits. We argue a lot. Now instead of yelling at each other we write notes back and forth until we have worked out the disagreement.

I also make her write sentences if she can not calm down to listen instead of relentless arguing we write sentences. I also write on her dry erase board. The latest things have been. "I must take responsibility for my actions." "My actions have consequences." "I am responsible for my own happiness."
"I must use problem solving skills 1. Identify the problem 2. come up with possible solutions 3. Act on the best possible solution."
" If I have a problem I can't fix I need to ask for help"

I always reassure her that being 9 is hard. She will be 18 in another 9 years and responsible for herself. She is already half grown. I have to set higher expectations of her. I can no longer physically make her do what I want. I can only let her know of the consequences of her decisions.

It really does work I am not afraid to take the whole bunch by myself to dinner or any where else. We always get compliments how good they are. My standards are high but I know they can do it. Plus I feel like I have to teach them all I can and fast cause they grow up so quickly.

My 2 year old is now earning tokens. Only one left to get on board.

My little boy is now 16 months old. He has suddenly turned into a little monster. I don't remember the girls ever being this rambunctious. He is into everything. I have tried just redirection that is a temporary fix. He waits for the opportunity and gets right back into it. He climbs on the dining room table into the entertainment center cabinet and he is constantly caught on the steps to the girls' rooms. I am afraid it won't be long and he is going to seriously get hurt. I have even tried time out and spanking. He just thinks it is funny. I am glad he is the only boy and our last child because I think he will be the death of me.

He is a big sweetie most of the time. I think he just needs to be exploring or climbing and conquering things all the time. It must be a boy thing. He is also very fearless. He doesn't even look back to see if I am following behind him when he gets outside he just keeps going and exploring. Maybe I have just been to good at protecting him and the first real injury will slow him down or not?

Juvenile Arthritis Advocacy

Well I finally did it. I was able to share my story with all of the elected officials. You can do it too. Just double click the title of this blog and it will take you to the website I used. This is what I sent to all the Missouri Senate, House Reps, Governor and even the President of the United States. It was pretty easy I typed it in word and saved it. The Arthritis Foundation had all their contact info and most of them had web forms. So I just copied and pasted the info in. I hope I can encourage others to do the same. It really only took 30 minutes to send this to all my officials.

I have a daughter born with Juvenile Arthritis I am writing you today to try and encourage you to support the Arthritis Foundations proposed bill. We are asking that the FDA keep track of what these powerful medications are doing to children by starting a registry. The medications have been a blessing. My daughter started walking at 9 months and quit at 14 months by the age of 2 you could no longer notice anything wrong with her. These kids and their parents have to make a choice of treating a condition that is very painful and affects quality of life, with strong medications that by side effects and warning could be very detrimental to their health. It would be nice to have all the facts out so we can make a better well informed decision. I don't know if Breanna will get pediatric cancer or if her lungs kidneys and liver can tolerate it if her condition persists. I do know that without the Methotrexate she would be in agony everyday all day. I can remember when it first flared I had given all the Tylenol and Motrin a little one could handle and at 3 am we were in a warm bath and both of us were crying. I could not take her pain from her. That is a parents worse nightmare, your child in pain and you can not make it better.

We would also like to increase research money. Arthritis affects 64 million adults and about 300,000 children right here in the US. It is also the #1 leading causes of people having to quit work and go on disability.

And the last thing we are asking is that Insurance companies quit discriminating against people with pre-existing conditions. I can not believe this has gone on. Discriminating against sick people should have never been allowed. If you with hold knowledge of a health condition and kept that information from the company it is fraud. But if you are honest about a health condition it should not affect your ability to get coverage or change the price or coverage you are offered.

My daughter started having problems 2 months after I started work with the State School. It took months to get a diagnosis. Our doctors here after 2 X-rays sent us to Children's Mercy They knew right away what it was and started treatment immediately. We started methotrexate, Naproxen and the expensive steroid injections. I was staring at $10,000 worth of medical bills. I worked for months as the middle man between the clinic and the Insurance Company. I was so stressed the doctors at children’s mercy noticed and referred me to a caseworker. It seems First Health was investigating a pre-existing condition. The caseworker who deals with these companies for a living was even having trouble sorting things out. They did eventually pay. They refused to cover her physical therapy and they kept fighting her eye appointments. I don't have vision coverage. It shouldn't matter she is high risk for uveitis because of her medical condition they cover it for people with diabetes. Why do we continue to let this form of discrimination happen? Help us by supporting The Arthritis Foundations Bill.

Again I would like to encourage you to share your story and how Health care Reform can affect your family.

http://capwiz.com/arthritis/home/ This is the website I used.

2009 JRA Conference

I made a little video of the conference. Just click on title of this blog and you can watch our video.

Potty Training

My Emily is officially a big girl she goes on the potty all the time when she is awake. She is dry most mornings. My step-mom kept the babies while we went to the conference and she is the one that should get all the credit. We use a timer that we set for about 45 minutes. If she doesn't go then we set it for 10 minutes we do this over and over until she goes. The potty is out and accessible. I know it seems weird to put the potty in the living room but whatever works at first. Emily wore lots of little dresses so it would be easy and they left the bottoms off at first. I guess she was a little surprised when she pooped on the floor. Can you believe she had no idea that came from her. When she successfully uses the potty she gets to put stickers on a piece of paper hanging on the fridge. If she is unsuccessful she gets a sad face drawn on that piece of paper. She has been doing this for just a couple of weeks and she has mastered it. We don't even use the timer now she will just go and the potty is now out of the living room and in a more appropriate place.

Chase is next!

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.

What is Juevenile Arthritis?

I had never heard of children having Arthritis, until my 14 month old daughter was diagnosed. I have tried my best to become educated on it. I would love the opportunity to speak with other parents if there are any out there. We are doing our best to cope with this condition. Right now she is off medicine since 10-24-08. So far no signs of inflammation. The medicine we use is methotrexate and naproxen. They make her sick and she quits eating and sleeping. Our biggest problem is the medicine we try to avoid putting her on it, but it will come to the point she can no longer deal with to swelling of her joints. She is 4 now and communicates how the medicine makes her feel. Trouble thinking and remembering, ulcers in her mouth, she says her throat burns and its hot when she pees. The doctor acts like this is no big deal. She's had elevated liver enzymes, bladder and kidney infections. She also takes a Folic Acid supplement because of the mouth ulcers. The doctor still says she does not have the heart burn I have questioned for 2 years. I think that is why she can't eat or sleep while on meds. She also quit growing for an entire year no growth. I took her off meds and in 2 months she grew 1 inch and gained 1 pound. Is there anyone out there with answers for us? She will go to preschool next year and I have no idea what to expect.

Do it all mom of 4

I am a mother of 3 girls: 9, 4 and 21 months and one son 9 months. I sale Avon a little, substitute for the State school for special needs children, go to college, have a work-study job converting textbooks to alternantive text and I also work at H&R block doing taxes. I am very busy to say the least.




Super Mom