tonsils..

Never a dull moment... For about the last month or so ago, I have noticed that Jacob has been sounding a little stuffy. His voice sounded a little different. Off and on , he had been having issues eating. He would choke occasionally on food. About two weeks ago he started to sound really bad. I looked into his throat and saw his tonsils were huge!! I called the pediatrician. His dad took him in the the pedi and the doctor was worried about his airway closing. HE was almost going to admit him into the hospital but the local ENT agreed to see him right away. The ENT decided to try to put Jacob on Augmentin for 10 days and have him back to recheck.

This past Wednesday I took him back for the recheck. Jacob still didn't sound very good. The ENT is thinking at this point it would be a good idea to have his tonsils removed. We decided it would be best if he was to go to Boston to have his surgery. The office tried to set up the consultation at the hospital but the PEDI ENT was on vacation until next Tuesday.

Tonight, Friday night, Jacob seems to have gotten worse. He was choking on even soft foods. I called the ENT back and he put him on Augmentin again and also prednisone. The doctor didn't think the pred would do much but it is worth a try because he is having so much trouble right now.

So we wait to hear back for a date for the consultation in Boston.

Two weeks ago I received a call from Nesse, who works at the Massachusetts Arthritis foundation. She called us to let us know she had tickets to a Minor League baseball game. The team The Lowell Spinner's play close by to us. I took Andrew and Jacob to the game. We had such a great time! I thought for sure the game would be rained out because it was drizzling when we got there, but the weather cleared just in time! These are a few pictures from the game. Thanks again to Nesse at the Arthritis foundation for thinking of us!

Biologics | Biologic Response Modifiers | Arthritis Today Drug Guide

Biologics | Biologic Response Modifiers | Arthritis Today Drug Guide

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Wow what a difference a year makes!

These pics were taken about a year apart. Last year during Jacob's arthritis flare up he was losing weight like crazy. He lost maybe 10 pounds. I think he had went down to about 58 pds. This summer, flare free, he is up to about 75 pounds!! HE is feeling great and continues to do very well.

Bug bites part 2

Jacob went back to the rheumatologist last Thursday, but I forgot to post about it! His mosquito bites were still not healed yet. They were looking better, but not gone. His lymphnodes were still pretty large. The doctor still didn't want to put him back on his arthritis meds yet. The plan is to continue the antibiotics for the remainder of the ten days, and to email her a picture of his knee this Thursday. The doctor wants to be sure his knee is free of any infection before restarting. The end of this week it will be three weeks since he has had the MTX and the Humira. We are risking a flare up in the hopes that his body can fight off the infection. The medications as you know are immune suppressants.

I will be very curious to see what his eye exam shows when we return there in a few weeks.

bugs bites and infection

Today we had an appointment with Jacob's rheumatologist and Orthopedic. It was good timing because we had another issue come up over the weekend. About a week ago Jacob had got about 7 mosquito bites around his knee. They were really itchy throughout the week. By about Friday they started to look infected. Was this because of his immune supression? I decided to hold off on the his Methotrexate because they were starting to look really bad. By Saturday and Sunday the area around a couple of the bites got very red and hot. His entire knee seemed to be swollen. The rheumatologist thinks it is a staph infection. She put him on a antibiotic and wants me to watch it closely. He is not to get any of his meds until this clears. We want his immune system to fight off this infection. She wants to see him back on Thursday. Jacob is in a lot of pain tonight and was actually saying he feels like it is his arthritis. His knee is stiff. He was begging me to give him his shot. Being 10, he cannot understand why I am not giving him the medicine to help his arthritis. I am hoping we can restart the meds soon. Without them we are risking a flare.

We saw the orthopedic today for the 6 month follow-up of the scoliosis. Jacob had his back xrayed again. The curvature of his spine has increased by about 3 degrees the doctor said. He still thinks it is in a "acceptable" range. I have to say, when I saw the xray it looked like a HUGE curve!! We are to return in 6 months to rexray the spine. He is also going to xray his legs to check the leg length discrepancy also.

This picture I just took yesterday of his knees. You can see the bites. The redness is difficult to see at this angle. The left knee is the swollen one. You can't see any definition of his left knee cap.

6 week eye appointment

Another uneventful visit to the uveitis specialist, Dr. Foster in Cambridge. Jacob's eyes still remain inflammation free. Jacob has been on the combination of 17.5 mgs, Methotrexate, (chemotherapy), and 20 mgs Humira, which is a bi-weekly injection. This combination has kept him cell free for an entire year now!!



His vision remains stable and his eye pressures are within a normal range. The pressure readings today were 15 and 16. Actually down from 24, last visit!! His cataract, which is still very small, is stable.



All in all a great visit today. Another 6 weeks for a follow-up. One year and counting to begin the weaning of meds!

Humira rash

The last few injections of Humira that I have given Jacob, have been causing a reaction. After the shot the area swells like an egg immediately, and then a rash appears. The medication does state that swelling and a rash are common side effects. I am just wondering why now, when he wasn't getting one before.

Two different kids, from two different states: One rare disease

Yesterday Jacob had a follow-up at Dr. Foster's. The appointment was all but routine for one special reason. Yesterday we met our blogging friends Amy and Jenna. Jenna is five years old and is fighting uveitis and Jra just like Jacob. Jenna and her mom come from Maine to see the same eye doctor that we see here in Massachusetts. We have both been seeing this doctor but had never had coordinating appointments. Amy and I have become friends online, as we have supported each other through our children's illnesses. It was great being able to meet them finally!!

Jacob's eye's continue to do well. There is no sign of inflammation. His cataract remains stable. The only change this visit is that his eye pressure in his left eye is 20. His right eye continues to be around 17.

I called about his blood work yesterday while there and all was normal but his sed rate has gone from zero to 28. The sed rate is a marker for inflammation in his body. For whatever reason it is up this time, I hope it goes down next month!

Please check out The web page of our friend Mia, who went in for cortisone injections and knee draining yesterday. Mia is in an awful flare up and hopefully will get some much needed relief from the procedure yesterday.

Please check out Jenna's and Mia's updates on their blogs. The links are on the left.

Rheumatology appointment

We went to see the rheumatologist today on an emergency visit. We went in to check out Jacob's hip. He woke up slightly better today but still needed crutches to walk any distance. He had his hips and ankles xrayed. The doctor believes it is just a really bad strained muscle. The xray showed no arthritis present. Thank God!!

He had his ankles xrayed to check out the issue he had a few weeks ago with them. We have not got the results from those yet.

Tonight, he seems to be doing much better! Hopefully back to normal tomorrow!