Thursday, November 4, 2010

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.

Wednesday, October 27, 2010

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.

Saturday, October 9, 2010

New linked blogs

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

Wednesday, October 6, 2010

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

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.

Thursday, September 30, 2010

Breaking news!!

Arthritis Act Passes Banner

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 EshooFebruary 26, 2009
Sent to House Energy & Commerce Subcommittee on HealthMarch 2, 2009
Hearing in House Energy and Commerce Subcommittee on Health
September 15, 2010
Amended at mark-up by House Energy & Commerce CommitteeSeptember 23, 2010
Passed by the U.S. House of RepresentativesSeptember 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.

Take Action Button

Saturday, September 4, 2010

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!

Sunday, August 29, 2010

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.

Wednesday, July 21, 2010

Time to taper off methotrexate!!

We went into Boston this week for Jacob's 3 month rheumatology appointment. Jacob continues to do very well. All of his joints look great! He is still having a little bit of stiffness in his 2nd toes on both feet. They do not bend as well as they should. The doctor said that those toes may stay that way. They do not bother him at all. We have decided to try to wean down on Jacob's methotrexate dose and see how he does. Rather than reduce the number of pills he takes, we are going to give the med every other week. Jacob has missed quite a few doses of meds in the past, and had no flare as a result. So hopefully this should keep things stable. We will continue this schedule until we see her again in September.

During this visit we also saw Jacob's orthopaedic doctor. He is still being followed for the leg length discrepancy as well as the scoliosis. Every six months his back and legs are xrayed to see how his growth has affected this. He is remaining stable.

Wednesday, June 30, 2010

2 year mark for Uveitis remission

Jacob had his 6 week follow-up with Dr. Foster today. This visit marked the 2 year medicated remission for Jacob's uveitis. His eyes are completely clear!

Two years ago, Jacob was in the midst of a uveitis flare-up that was uncontrolled. He had been
treated initially with NSAIDS that produced no results. He then moved onto Methotrexate, a chemotherapy drug. This produced no results either. During the Methotrexate and NSAID therapy he was also on steroid drops. Jacob was unable to achieve a steroid free remission with this medication combo. His eyes continued to flare as we tried to wean the drops. The decision
was made to add to the Methotrexate another drug called Humira. Humira is a drug that is classified as a TNF antagonist. This stands for Tumor Necrosis Factor. Once the Humira was added Jacob went into remission. We were told 2 years ago, that once he achieved remission that
he would continue to be on this combination for a full 2 years before weaning would be considered. I remember thinking 2 years was so long!! Now here we are! Full 2 years off steroids.

As far as his eyes are concerned we have the go ahead to wean on the meds. This needs to be determined by the rheumatologist though. We are scheduled to see her on July 19th. Jacob's joints have been doing very well except for the one swollen toe. One toe. So now we wait for the appointment in July to see what she says.

We have graduated to seeing the eye doctor every eight weeks instead of every six. Uveitis is a disease that isn't to be taken lightly. It can come back at any time. The effects can be devastating. Jacob is very fortunate that his eyes have been very responsive to treatment. We shouldn't forget that still today, 10% of children will go blind from the disease. This is improved from fifty years ago when 50% of the children went blind. Proper care and diagnosis is so critical in preserving sight with this disease.

Saturday, June 5, 2010

swollen toe

I took this picture of Jacob's toe two weeks ago. The last time we were at the rheumatologist she said that there was inflammation in his 2nd toe. The toe seems really stiff and it won't bend. I sent an email to his rheumatologist with this pic and we are going to wait until his July appointment to check him. The toe doesn't bother him at all.

Juvenile Arthritis Conference

The Juvenile Arthritis Conference is the Arthritis Foundation’s signature, nationwide event for families affected by juvenile arthritis. Join us for this three-day education event that focuses on health, wellness and fun for children affected by arthritis, lupus, myositis, ankylosing spondylitis and other rheumatic diseases. The whole family is invited! Specific educational 2010 tracks focus on issues relating to parents, teens/young adults, children affected by arthritis and their siblings. The Juvenile Arthritis Conference offers a chance to meet other families going through similar challenges, share stories, learn new techniques for managing juvenile arthritis and have fun!
I just wanted to post this on my website, for all who may be interested. The yearly conference is coming up this summer. More info can be found at . I would of loved to go this year, especially considering it is not too far away! I am unable to go though. It seems like it would be a great experience to learn more about JA as well as meet other families going through this.

Wednesday, April 28, 2010


All is looking good! We return in 6 weeks. If all is still clear then we can start to wean Jacob off of methotrexate. This June will be the 2 year mark of him being "cell free".

Sunday, April 25, 2010

long time for an update

I really need to update my winter theme on this blog. I will hopefully get to do that soon!

Jacob has been doing pretty well. Not too much has changed. We still continue to see the pediatric rheumatologist every 3 months and the eye doctor every 6 weeks. We saw the rheumatologist last week. She said overall he is doing great. She did say though that his toes looked a little swollen. I had noticed his toes red off/on but didn't think too much of it. She did say there was a little inflammation there. They are not bothering him at all though, which is a good thing. She said that we could maybe look into weaning him off the methotrexate if all stays calm, sometime this summer.

This coming Wednesday, Jacob has an appointment with the eye doctor. I am hoping for no surprises. This month we have had to delay the meds because he was put on antibiotics for an infection. He is late on both meds by a couple of weeks. The last time we had to miss meds he had a few cells in one of his eyes. They cleared right away once we started back meds.

I will update on Wednesday after the eye appointment.

Sunday, January 31, 2010

Eye appointment

This past week Jacob had his follow-up with Dr. Foster. His eyes are still free from inflammation.
This was such great news considering he was off his meds 3x in the last couple of months due to sickness. I guess this is hope that once we start weaning him off his meds this summer his eyes will hold. Jacob has definitely gotten used to going so frequently to the eye doctor. I and him, used to dread the appointments so much. He was so anxious to have the glaucoma/pressure tests done. He used to fight it and get so upset. Don't get me wrong he doesn't love it, but he will agree to do it. The slit lamp exams used to be a little difficult too, he is a pro now! January 22, 2008 was the day he was diagnosed. He has come such a long way! Six more weeks for the follow-up.
*the picture is Jacob sitting outside the doctor's office in Cambridge.

Monday, January 4, 2010

Rheumatology and orthopedic appointment(and ANOTHER infection)

Today Jacob had a rheumatology and orthopedic appointment.

Jacob has been really sick the last 5 days with a high fever. I took him to the pedi a couple of days ago and the doctor said he has some type of virus. His temp has been between 104-105 the last five days. He woke today again with a temp of 104.5. I decided to keep his appointments in Boston in the hopes that his rheumatologist would know what was going on.

His throat looked horrible again all white, he has some type of infection going on. The rheumatologist said all of his joints looked great. She ran a bunch of blood tests. I haven't heard any results yet. She did put him on Zithromax for 10 days though. So that means no JRA meds again until the antibiotic is finished.

The orthopedic did xrays of jake's legs and spine again. His leg bones were off about 6 cm?? I think. His spine scoliosis hasn't changed. He will just need a 6 month follow-up with him.

Once again, the fun of being immune suppressed.