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.

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.

Gabrielle's Vision

http://www.youtube.com/watch?v=ZQbYCp8FRmY

Love this video, it says it all. Please view to have a better understanding of UVEITIS

There are 50-100,000 children in the United States with JRA , 10% of these children will develop UVEITIS.

5,000-10,000 kids have uveitis in the United States, and to this day, still 10% of these children will go blind.

We need to spread awareness of this Chronic disease. A cure must be found. We need to save our children's sight.

doctor visits are getting a little tiring

Jacob was back at the doctor's yesterday. For what I think is a sinus infection that has been lingering. He had it a month ago when he was being treated for strep throat. The penicillin he was given then didn't help, and he progressively got worse. He is now on Augmentin and a nasal spray, which hopefully will finally clear it. I have noticed when he has been sick with somthing it seems to linger. I don't know if it is from the JRA meds or not. The Humira does say that it cause respiratory and sinus problems. So who knows. Jacob's rhematologist had told me a month ago that whenever he is on antibiotics he is to hold the JRA meds. Just a month ago we held them for almost two weeks for strep throat. Now he is on Augmentin for 10 days. Off his meds again. I am very nervous that he has been off the meds so much lately. It is a scary thought that this can start a flare. Especially his eyes!
I sent his rheumatologist an email to be sure he should remain off the JRA meds for the next two weeks. Hopefully I will hear from her soon. I posted a few pics of the boys at the doctors. Always a fun time with 3 boys in the same small 6x6 room.

eye appointment

I forgot to post the other day that Jacob had his eye appointment. We went this past Wednesday. What a long appointment! We left for Cambridge at 8:30, got there for a 9:45 appointment and were not seen until almost 1:00! The wait was a little excessive I would have to say! Thankfully Jacob did well with the appointment. His eyes are still clear. He has been off his meds again for a little while because he was sick with a fever and diagnosed with strep. Anytime he is on antibiotics were are told to have him stop his JRA meds. When he first started getting sick, I think he may of started to flare his arthritis. His knees were extremely stiff. Now that the strep throat is gone he is feeling better.

We return in six weeks again for his follow up.

Rheumatology appointment

Jacob saw the rheumatologist yesterday, nothing really new to update! He continues to do very well. The doctor said that all his joints looked great! So right now we are holding steady. Keeping on the same medication schedule. If it wasn't for the uveitis we would be looking at medication weaning in January. Jacob's eye doctor insists we keep with the same medication for 2 years. Two years will not been until July.

eye appointment

Big week this week. Jacob started 5th grade. He was finally able to begin school this past Monday. He is going to a new school this year. He was very nervous to start, especially because he was starting late because of his surgery. Speaking of surgery, he is doing well, finally! It was a very rough week and a half. He was in a lot of pain. He is healing well now and almost back to normal. As far as school goes, he really likes his new school.

We just came from Jacob's six week eye appointment. He is doing well. I was so nervous about this appointment because he has been off his meds for the last four weeks due to the surgery. He just restarted them within the last few days. There were no cells present!!! He does have traces of cataracts both eyes now though. His pressures today were 14 left eye and 19 on the right.

Follow up will be in another six weeks.

Jacob is four days out from surgery. It has been a very rough last couple of days. He pretty much has been on the couch. To say he is in pain is an understatement. He has been in agony. I have been giving him tylenol every 4 hours. It is not helping much. Today he seems to be improving slightly. The tylenol seems to help for about 3 hours then he starts asking for medication. He is in better spirits today though. Last night he had had it with the pain. He is still eating minimally. I am trying to make sure he takes in fluids so he doesn't dehydrate. Not a very easy task! Hopefully his weight does not suffer.

As far as school goes, he is yet to start! He missed his first two days last week and will miss the week this week. Also soccer starts today, not for him though!

Surgery is over

Update: The initial biopsy results came back as a tonsillitis. Nothing serious!! What a relief!


The surgery is over and we are home. Over all the surgery went very well. After everything Jacob has gone through, he is not a huge fan of being put to sleep. The surgery only took about a half hour. The doctor said that his tonsils were extremely large. A surprise he had found was that behind his right tonsil was a huge pocket of fluid. The doctor said that he must have had a really bad infection at some time.

Due to the rapid onset of his tonsillitis he is going to have a full biopsy. Tonsillitis is usually more of a chronic condition. We may hear the results today or it will be Tuesday because of the holiday.

While we were in the hospital Jacob's rheumatologist came in to see him also. He has been off his JRA meds since around August 12th. He still cannot go back on them until another week or so. They want to see him in a month.

Here are some pictures from his hospital stay:

before surgery


In the hospital room



The 8th floor roof deck playground



in the playroom at the hospital



The view from the roof deck

Surgery update

Jacob's surgery has now been moved up to September 2nd. The ENT in Boston ants to get this done because he is getting progressively worse. Unfortunately this is his first day of school! I am glad though that he is going to get this done sooner rather than later. The poor kid sounds awful. I am anxious to find out what is causing all of this. His tonsils will be biopsied and hopefully give us some answers on why this is happening. There are a number of things that can be causing this. We have ruled out mono and strep issues. Tomorrow he is having an EKG to be sure all is well for the anesthesia, and a chest xray to see if anything related shows up there.