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!

2010 JA Conference Notes - Advocacy

Advocacy is a huge part of how the AF directs money to research. Congress appropriates millions of dollars each year to disease research and we have to do our part to get our share. However, congress won’t listen to the foundation, we don’t have enough money to pad their election campaigns and the foundation isn’t a constituent. This is where you come in, we need your help to influence your congress person. They will listen to their constituents and if we all let them know this is important our voice will be heard. Sign up to become and e-advocate and get alerts when we need your help!

Advocacy has helped to create a loan repayment plan for docs that become pediatric rheumatologists. However, it’s not funded so we still need to keep the pressure up. Our other goals are to create a registry of kids with JIA to facilitate research. We also need to fund research to discover the answers to questions:
What are the long term affects of the meds we are on?
What is the best treatment plan?
When can we reduce medications?
When should we not treat at all?
Can we find a cure?
What are the best combo’s of drugs?
Should we treat it hard early or slowly?

The advocacy program helped the CARRA database secure short term funding from the NIH, we are working on longer term funding.
CARRA - Database of kids with JIA. It is totally confidential. This database of information is used to facilitate studies of the JIA disease. http://www.carragroup.org/

To become an advocate please go here:
http://www.arthritis.org/inside-advocacy.php

2010 JA Conference Notes - Fundraising Ideas

Fundraising ideas:
Any business that caters to children: Ask them if they will sponsor a night where the AF gets a % of the profits.
Halloween dance
Brat Stand
Have a night in - Get all kinds of at home parties (tupperware, avon, lia sophia, etc) to come to your home and instead of giving you product, give you a % of the profits.
Hold a silent or live auction
Golf outing
Bake Sale
Invite all your friends to a BBQ and charge admission
Letter campaign - Include a SASE to increase donations
Host a holiday party
Provide a food stand for a community event

Fundraising costs are tax deductible, keep track of mileage to go to fundraisers, mileage to foundation meetings, paper costs, postage costs, etc.

2010 JA Conference Notes - Get involved

Reason’s to attend camp, family days, networking events and the national JA conference:
Realize that you are not alone
Get great information on how to deal with the future
Be reassured that your doc is doing the right thing
Get a list of questions for your doc
Meet a lot of great parents to help you along this journey
We hear other parent’s concerns and when we encounter the same thing we are better prepared.
Find out about new treatments
Advocacy networking
Reason’s for your child:
Realize they are not alone
They learn about the disease from a kids perspective
They get answers to their questions from their older peers
Meet life long friends to help them through the bad days
Realize that flares are normal
They see older kids going through the transitions and find out what works and what doesn’t. (Daycare to school, middle school to high school, driving, college, etc)

2010 JA Conference Notes - Kids with JIA

Kids with JIA have sixth sense about when someone is struggling with something. They grow up VERY empathetic and grow to be caring supportive adults.

I have never met a kid with JIA that would go back and change their life and not have it. It makes them so tough, empathetic and caring that they wouldn’t want to be “normal”. To that point a question comes up often about whether people with JIA want to have kids in the future. They are worried that they may pass the disease along to their kids. While no risk has been medically proven it is still a concern. The response that I have heard a few times and makes alot of sense is that we know no one that has JIA that would go back and change it, so if go forbid your child gets JIA they will feel the same. On top of it all you will be prepared to help them fight. If you didn’t have JIA you wouldn’t get to meet all of the neat people at the AF or go to great conferences. You wouldn’t get to have such great fun at the walks and other events. You wouldn’t have met all of your lifelong friends from camp.

2010 JA Conference Notes - Medications and other concerns

If your child is on an injection give them a choice. They can get it in the morning or at night, they can get it in the arm or in the leg. Have them help draw up the medication, push the plunger, put on the band aide, etc. Get them involved so you aren’t doing it “to” them. Praise them each time for doing a great job. You will need to find a driving factor for them to continue their meds, it can be sports, dance, karate, playing at the park, etc. Whatever your child loves to do and couldn’t without their meds. Keep reminding them that these things are possible with their meds. Guided imagery was talked about as a coping technique for the pain of injections and blood draws.

If your child has trouble swallowing pills, start with mini m&m’s.

Biologic drugs are proteins which attack the chemical markers which cause inflammation. Tumor Necrosis Factor (TNF) is one such chemical, Enbrel targets the key which allows the TNF to cause inflammation. Without the key the TNF is harmless.

Take chest pain very seriously, the membranes in the chest cavity can swell and lead to life threatening pressure on the lungs and other organs. If your child complains of chest pain go to the ER immediately.

Kids with JIA are at a higher risk to dislocate the joint at the top of the spine, where the spine meets the head. For this reason neck pain should be taken very seriously. The head also shouldn’t be tilted back too far. If the child is going to be intubated be sure to let the person know not to tilt the head back too far.

2010 JA Conference Notes - School/Friends

Transitioning to school can be tough for the parents of kids with JIA. The biggest thing is to be very open and communicative about the disease. Tell everyone your child will interact with about the disease, what it means, what to watch for and above all tell them to treat your child normally as much as possible. No child wants to be singled out. Open communication is the key to a successful school year.

504’s/IEP’s - These can and should be given if your child has a disease where something could happen but hasn’t yet. They are there in case something happens and don’t ever have to be used. They are 100% confidential. Having a 504 or IEP in place before something happens makes your case stronger when something does happen and teachers etc are less likely to think of it as an excuse. These can also set you up for financial aide for college. Things that can be covered in a 504 include: Second set of books at home, longer time for tests, two lockers, closer parking spot, breaks, PE passes, Longer time between classes, Laptop for notes, scribe for notes, etc.

Vocational rehab may be available to help your child get into the workplace. They may help out with school, help with vehicle adaptation, pay for a laptop computer to take notes, etc. Contact your state for more information. Your state may also have other help if you are considered to have a chronic medical diagnosis, including help with co-pays, prescription costs, etc. Each drug company also has a patient assistance program.

The vast majority of teachers are going to want to help you and your child get the most out of the school system. However, they can’t help if you don’t communicate with them often. Be very open with them and they will help in any way they can. Specifically cover signs and triggers for your child’s flares. Another good tool is a “Silent Signal”. Cough twice while making eye contact with the teacher to signal the student needs more time, a break etc. This way others don’t know.

When dealing with friends and classmates it can be a delicate balance. Not everyone needs to know that your child has JIA but it is great when they have a couple close friends that they can confide in. Once again communication is the key. Kids can be down right mean but confronting them with confidence will make them go elsewhere. Finally each speaker with JIA said the same thing, they don’t have people in their lives that don’t support them. They have enough to deal with that they don’t need people that are going to cause them drama. It is very hard for us to teach our children that they don’t need to make everyone happy but it is true. There are a lot of people in this world that aren’t worth our time :)

To get student buy in consider having your child or even better their sibling do a presentation on JIA at their school. Invite the school children to the Arthritis walk and encourage them to fund raise for it.

2010 JA Conference Notes - Doctors tips

Allow alone time with your child’s doctors. They may talk about things that they are not comfortable talking about with you, it will make your child feel like they have a part of the decisions being made and will prepare them to do the same as an adult.

Take siblings to the doctor’s appointments whenever possible. This will show them that they are not fun time and will help them to understand the affected child’s disease. When your child meets with the doctor see if she minds if her sibling is present. If your child is okay with the sibling can even help with the injections. (Get the band aid, alcohol pad, or even give it).

Keep a notebook - Track the disease in it. Keep track of medications and anything at all that you notice. Write down questions for your doc in it. We often have a question between appointments and then don’t remember to ask the question, if you write it down you will remember. We also try to keep track of small symptoms (limping one day) so that we can track if they are persistent.

Children should know the names of their medications, what causes them to hurt and what to do about it. Younger children can know the basics and older children more specifics. Teenagers should call the pharmacy for their own refills, older teens should schedule their own appointments.

Knowing when your child is in pain can be a very hard thing to master. They have grown up with pain so it is normal to them and they won’t say that they hurt. EACH CHILD IS DIFFERENT but some children complain of buzzing in their joints, thumping, that it’s hot, etc. Some people say that their child’s mood changes. We ask our child if one knee feels different than the other. Also, children will get smart and realize that if they say they are in pain that equals more drugs so they won’t say they are. In this case ask them how they felt yesterday, they probably feel the same today.

KIDS SHOULD BE KIDS. If your child can’t do something, mention it to your Rheumatologist. The goal should be for your child to have normal activity. To that end know your child, let them do something even if you think it will tire them out. It probably will tire them out but you can’t let JIA run their lives. You always have to be aware of it, but don’t let it limit them if possible. On another note, kids shouldn’t be allowed to use JIA as an excuse. Get them off the couch and have them go play. Moving is the best medicine and it will make them feel better.

2010 JA Conference Notes - JIA Diagnosis

Our daughter’s diagnosis is Juvenile Idiopathic Arthritis (JIA) - Oligo - Extended
Persistent Oligo means the disease stays at 4 or less joints
Extended means the disease progresses to more than 4 joints, after six months

The definition for a JIA Diagnosis is:
Child less than 16 years old
NO OTHER CAUSE
Swelling in one or more joints for six weeks or more

The diagnosis of JIA can be frustrating and take some time. The reason for this is that all other causes have to be ruled out to consider it JIA.

0.5/1 in 1000 kids nationwide have JIA. In Wisconsin it is much more prevalant, more like 1 in 350 kids.

Oligo subtype of JIA is normally easier to treat than the subtypes that come on harder sooner. (More than 4 joints in the first six months). Extended Oligo is normally harder to treat than persistent.

It is extremely rare to develop Systemic JIA if you didn’t present with the disease at diagnosis.

JIA affecting the fingers is a hallmark of a tougher disease. The swelling normally doesn’t get better with first or second line drugs (nsaids)

Rheumatoid Factors (RF) are antibodies made by the immune system. Sometimes they are made for no reason. They can signal an immune system in overdrive. RF proteins survive for an average of 3 months. In order to be RF+ two consecutive positive tests need to be performed at least three months apart.

Antinuclear antibody (ANA) is a marker for iritis and uveitis. 70% of children under the age of 6 have ANA+. If you don’t develop Iritis or Uveitis in 4 years it is highly unlikely that you will in the future.

Anemia - The body is so busy fighting inflammation that it is not doing the maintenance that it should be. (The body isn’t making as many blood cells)

Fever of Unknown origin (FUO) can be a sign of systemic JIA. If a fever persists for more than two weeks, it’s generally not infectious disease related.

When joints are swollen for a period of months the affected leg can grow longer than the leg that is not affected. When this is observed it is a sign that the disease has been there for some time because it is a persistent but slow affect of JIA. If your child walks funny check their leg lengths, we have met a lot of folks that had lifts put in the child’s shoes. If you need a lift in your child’s shoe find a good shoe repair shop. Our’s was able to put lifts in our daughters shoes without you being able to tell that there was one. They did a great job! Normally over time the legs will even out in length if the swelling is taken care of.

When ankles are swollen the affected foot can be smaller than the arthritis free one. Also over time the bones can grow larger and fuse together. Inflammation for a long period of time makes major changes in the affected joints. The bones within the joints grow larger and eventually they grow so large that the joint can no longer pivot.

JA Conference

We were lucky enough to attend the JA conference out in Philadelphia, PA this year. To say it was amazing, great, etc does not do it justice. This conference brought together over 1,000 attendees, all affected by JA. The purpose of the conference was two-fold (or more). First it brought together parents from all over the nation to meet, network and share information. Second and just as important it brought together kids from all over the nation.

The conference has a wonderful kids program where kids are broken out by age and attend programs that are age specific. Our daughter met many new friends that have JA just like her. Over the years I am sure those friendships will grow and she will come to understand that she is not alone in the fight against JA. I think it is so important for kids to understand that they are not alone in their fight.

The parents program consists of four 1 hour and 15 minute sessions a day on various topics. The day starts with a general session and then there are three breakout sessions where you can choose which topic interests you most. I say most because most of the topics were interesting. In the breakout sessions parents are able to asks questions to the presenter and provide input.

The relationships made are wonderful, no one quite understands what we all go through unless they are going through it themselves.

We learned so much, I can't quite put it into words, you really have to go to understand how great it is.

Stay tuned to future blog posts for more information on this great conference.