Thursday, March 19, 2009

Rheumatologist appointment

Today we saw Dr. Miller, Jacob's pediatric rheumatologist. I was very nervous today for the appointment, you know the other shoe dropping. I am still waiting for it even though it has yet to happen. It is funny how a having a child with a unpredictable disease like Juvenile Arthiritis can make you feel that way.

The appointment went very well today. Dr. Miller said she is very happy with how Jacob has been doing. She said there was no signs of inflammation today. I thought for sure his knees were swollen she said they were not. I am wondering if the weight gain he has had is making his knees look a little chubby. He has put on so much weight since this time last year. He is actually back on track on his growth curve.

The only issues we still seem to be having is the leg length discrepancy. He is still measuring one leg a little longer than the other. His thigh and his calf are still smaller on the surgery side. There is also slight contractions on both legs. This is completely from the way he is walking. While he was in the flare up last year he would compensate for the swollen knee by walking with the leg slightly bent. I can see he is still walking that way. Dr. Miller said it can be corrected with physical therapy if we wanted to go. I am going to pass on that for the moment. It is very minimal and if it gets worse then maybe was will pursue it.

All medications will stay the same. Methotrexate 17.5 mg. (chemotherapy) once a week, And Humira every other week. He remains free of side effects from both meds. We continue to have blood work every month to watch for any changes. The methotrexate has to be carefully monitored in case of any issues with his liver. So far so good!!

Just for the has been a year this week since the knee synovectomy. Ahhh things in life have been so much calmer!!

Stay tuned for the eye update on April 1st!! Hopefully all is well there too!

Wednesday, March 18, 2009

Arthritis Advocacy- GO Mikayla!!

Once again the importance of Arthritis Advocacy. Every voice can make a difference.

Mikayla's Testimony at the Congressional Hearing

March 18, 2009 testimony before the House Appropriations Committee, Subcommittee on Labor, Health and Human Services, and Education on behalf of the Arthritis Foundation

My name is Mikayla Minnig, and I live in Downey, California. I am here today on behalf of the nearly 300,000 kids like myself who have juvenile arthritis. I am 10 years old and in the 5th grade. I was diagnosed with pauciarticular juvenile rheumatoid arthritis when I was just 3 years old. Pauciarticular means it affects four or fewer joints and usually large joints. For me, it affects my left knee and ankle. I also am at high risk for eye inflammation and must have them checked often so I don’t become blind, which could happen. It all began when I felt a lot of pain and swelling in my neck. I couldn’t walk or run like the other kids, and I couldn’t turn my head.

For ten months I went to lots of different doctors to figure out what was wrong with me. Some of these doctors told my parents I must have bad growing pains or must be faking the pain and tears. Finally, we were sent to a pediatric rheumatologist—a doctor who treats kids like me with juvenile arthritis. Dr. Starr said I had arthritis. My parents were surprised. They didn’t know, like most people, that kids got arthritis. In fact, most people don’t know that juvenile arthritis is one of the most common childhood diseases in the United States.

People are surprised when I tell them that I have arthritis because I don’t look very different than other kids. But unlike other kids, I take a cancer drug every week plus daily medication to control my arthritis and it helps me try and lead a normal kid-life. I have met other kids through the Arthritis Foundation who are not as lucky as me. The drugs don’t work for them, and they end up in a wheelchair or have to have joints replaced. In fact, juvenile arthritis is the leading cause of disability in kids. I am also lucky to be able to see a doctor who understands and can treat my disease. Kids in 9 states don’t even have a single specialist to see them.

I am here today to ask Congress to focus more attention on kids like me with arthritis. Research is the key to a cure. Research has led to newer drugs that help kids stay out of wheelchairs, but these drugs can have really bad side effects. We need a cure! Right now, the government spends $9.8 million at N.I.H. for juvenile arthritis research. That sounds like a lot of money to me but when you think of the nearly 300,000 kids that works out to be just about $32 per child.

There is a group of pediatric rheumatologists that are working together to study and treat children with arthritis, but they need your help. With more funding and attention from Congress, more research studies can move forward to help find a cure. The Arthritis Foundation supports, at least, a doubling of juvenile arthritis research over the next few years. Also, the N.I.H. should spend more money training future doctors. Kids around the country are diagnosed too late to prevent damage – please help change this. I hope one day when I tell people I got arthritis at age 3, and they say “but kids don’t get arthritis’ I can tell them “you are right – not any more – because research has found a cure”.

Thank you for the opportunity to speak to you today.