Are you going?

We are hoping to go this year! Are you going? It would be a great opportunity to meet some other JRA families as well as see DC with the boys.

3 years since uveitis diagnosis

It has been 3 years since Jacob was diagnosed with uveitis. I can't believe that long has gone by!
We have been continuing to see Dr. Foster every 8 weeks. We have clocked quite a few miles back and forth to Cambridge. These visits are very emotionally draining for me. Jacob on the other hand looks forward to a day out of school. Every visit that we go to I feel as though I am as nervous as the last. I can't even imagine what it will feel like if we ever hear the word "flare" again. I think the longer we have gone without cells the more nerve wracking it gets. It is even more worrisome with the med tapering. We have been still continuing to wean off of Methotrexate. He is down to only 5 mgs tonight. In two weeks he will take his last pill of it. I can remember when we were told he needed to go on this drug. It was scary to say the least. Methotrexate is a chemotherapy drug. I was very familiar with chemotherapy with my father having been through cancer, I was fearing the worst with the side effects. The doses used for arthritis are far lower than those used for cancer. Side effects such as nausea, vomiting, hair loss, mouth sores, liver dysfunction and lowered immune-system are possibilities even so. Jacob generally did well with the methotrexate. Initially he had awful mouth sores. The doctor quickly switched from folic acid to Leucovorin to help combat the side effect. We have also been doing blood work routinely, every 1-2 months, to watch his liver for an problems. The blood work has been a pain, but a comfort knowing that if this med was doing anything it would show immediately. Anyway, it will be a blessing to be able to stop this med sooner rather than later.

The appointment today went very well! The fellow we saw today was great! He was so thorough in his exam. He dilated Jacob's eyes today to be able to see in the back of his eyes. He did this because Jacob said that he has been seeing floaters. All was clear in the back of his eyes as well as the front. His pressures were good today also. The right eye was 21, the left 17. His vision was 20/25 both eyes.

February will be his rheumatology visit. Hopefully his joints continue to do well and don't need these meds too long either! I don't think there is any plan to start weaning the Humira too soon though.

Thinking and praying for all of our JRA and uveitis kiddos. Hoping for a healthy year for all.

The blog list is growing! It is great that there are so many people out there willing to put their child's story out there. Take the time to click on the stories. Juvenile arthritis is very real. There are so many children fighting this awful disease. Awareness, Awareness, Awareness!!! Spread the word!

rheumatology appointment

Jacob went for his 3 month follow-up today. He is doing great! All of his joints are doing well.
Three months ago, we had decreased his methotrexate by doing it every other week instead of weekly.

Jacob is currently taking 17.5 mg, which is the equivelant of 7 pills. Starting this Sunday we are reducing the dose by 1 pill. Which is 2.5mgs. He should be completely off, if all stays well, by the end of January.

January of 2008 is when he had come out of a remission. I can't believe three years has gone by!


He is going to continue on the Humira. Which he takes every other week. We are to watch for any flaring as the med is decreased and return in 3 months.

Eye check. Humira every 2 weeks, Methotrexate every 2 weeks. Holding steady!

After driving through some crazy traffic this morning, and waiting to see Dr. Foster for 2 1/2 hours, the report is good! Jacob's eyes are clear, cell free! They have been clear now for 2 years, 4 months. (well one little trace cell count a few months back, but nothing to lose sleep over).

Cataracts have not grown.

Jacob sees the rheumatologist next week. We will find out if she will decrease meds further.

It is her call at this point. His joints seem to be doing well. He definitely does not complain.

Stay tuned.

New linked blogs

I have linked a few more JRA blogs to here. Go check them out!

Live Vaccinations

I just got back from taking my youngest son to the pediatrician
for his routine physical. The question came up again wheter
or not to give him the MMR vaccination. The MMR is a
live vaccine. Live vaccines are contraindicated for Jacob
because he is immuno-compromised. Now Daniel is
not immuno-compromised, but he has close contact
with Jacob on a daily basis. When siblings receive
live vaccines they can be putting the other child at
risk of contracting the virus. The pedi and I decided that
it would be a good idea to continue to hold off of any
live vaccines for the other boys, while Jacob is on
the medications he takes for his JRA.

If you remember, last year ,the school was administering
the live Flu Mist. I was advised by Jacob's doctor to
keep Jacob home during the administrating of the
vaccine.

The risks may be small that Jacob can contract a virus
from his brothers getting live vaccines, but it is a risk
that I am not willing to take.

Breaking news!!

We were on the schedule for September 28...then postponed. We were on the schedule for September 29...then other bills required lengthy debate. Finally, at 12:48AM on September 30, 2010, the Arthritis Prevention, Control and Cure Act passed in the United States House of Representatives without objection. Only ten minutes later did the House close up shop until November 15th. A big thanks to all Arthritis E-Advocates, Arthritis Ambassadors and Representative Anna Eshoo (D-CA) who shepherded this bill through the House. We've come a long way! H.R. 1210 Introduce by Rep. Anna Eshoo February 26, 2009 Sent to House Energy & Commerce Subcommittee on Health March 2, 2009 Hearing in House Energy and Commerce Subcommittee on Health September 15, 2010 Amended at mark-up by House Energy & Commerce Committee September 23, 2010 Passed by the U.S. House of Representatives September 30, 2010 Passed by the U.S. Senate Signed into law by the President It's on to the Senate and now, more than ever, we need your support. When Congress returns in November we will have only a short period of time to get the bill out of the Senate Health, Education, Labor and Pensions Committee and onto the Senate floor for a vote. Please take a moment to write your Senators and request their support for the passage of the Arthritis Act.

6th grade!

I can't believe it is time for another school year. The summer went by so quickly!

Jacob started 6th grade a few days ago. He is growing up fast! If you remember last year Jacob

wasn't able to start school on time due to his tonsillectomy on the first day of school! I am happy to say he is starting school off healthy this year. This is a picture of him and Daniel on their first day. Daniel is in 1st grade this year! Andrew was long gone by this time, to his 1st year of high school!

1st eye appointment with the tapering of MTX

Last week Jacob went in for his 8 week appointment to Dr. Foster. Daniel came along for the appointment today. The appointment was quick thankfully! You never know if you are going to be there for 1 hour or 4! I am happy to say his eyes still remain clear! After his last eye appointment we have reduced the methotrexate to every other week instead of weekly. So essentially, he has missed 4 doses of methotrexate in the last 2 months. Jacob still remains on the Humira every other week as well. Eight weeks until the next appointment.