Sunday, April 27, 2008

4 1/2 weeks post surgery

This is a new picture which still shows the swelling and boney overgrowth. Also a picture of the splint.

Saturday, April 26, 2008

Rheumatology appt.

Jacob saw the rheumatologist this week. The doctor didn't like the way his knee looked. It is still inflammed and has active arthritis going on. The knee is still very hot. It is also in a contracture which we have been working on in PT. He was also fitted for a splint on Monday. He is supposed to wear it for about six hours a day. It actively tries to straighten his leg. He hasn't complained much about wearing it. The rheumatologist put him back on indocin along with the methotrexate. It is the anti inflammatory to try to get the swelling under control. He has to go back to see the doctor in 3 weeks. The doctor mentioned that we may have to do a cortisone injection. Remember, this is what we initially set out to do back in March before the synovectomy. The synovial membrane grows back in about 4 weeks after the surgery, which it is about 4 weeks now. So if the arthritis is still active he will schedule an injection. Never ending!

Monday, April 14, 2008

The 2 week long cough

So Jacob started coughing two weeks ago. I wasn't sure what was going on. I thought maybe he was doing it for attention. But by Saturday this week he was coughing non stop. I paged the rheumatologist on Saturday to see if he thought it could be from the methotrexate. He had heard the cough when we were in last Wednesday. He said to bring him inot the pediatrition to see if they could diagnose something. So I brought him in on Saturday. The doctor said his lungs were clear. She said he did have a little post nasal drip. So off we went. Last night he coughed until 1AM!! He has been coughing all day non stop!! I called the pediatrition back and Jacob's primary care doctor was in but he didn't see him on Saturday. I told them I really thought it was from the MTX. A Mom on the support board I spoke too said her son developed a cough from it. She said It was a big complaint from Adults on MTX too. So his primary care doc is going to discuss it with the doc that saw him on Saturday and call me back tomorrow. So I think I am in for another long night. I and he is, completely exhausted!

Friday, April 11, 2008


The end of a very long week! Just wanted to say Jacob has made it through two full days of school! Yay! He had a very good day today, despite not falling asleep until midnight. It is killing me but he seems fine with it! He even was able to go on the bus this morning. Not very willingly because he hates the bus, but easier for me to not have to leave work to drive him. He also had physical therapy this afternoon. It was his third time. He already getting much more range of motion. He is very sore on the stretching exercises but toughs it out, except for a few very loud hollers!

The hospital called today to let us know the bloodwork was fine except for the sed/esr rate. It was 33, which is elevated. This test is a marker of inflammation it could be high because of the surgery or the JRA itself. I am not sure what it was in January I think If I remember to ask in two weeks I will check.

Jake's fingers were really bothering him tonight. While he was playing guitar hero in his room I could hear banging he was banging the guitar on the floor in frustration because his fingers hurt. So off that went. He does have a temper at times!

The methotrexate dose was given tonight. This will be the week to tell if it is what's causing the sleeping trouble. It seemed to begin on the last two Sundays. So we'll see what comes of Sunday night!

Wednesday, April 9, 2008

Rheumatologist appointment

Today we went to see DR. Lopez. This is the first visit since the surgery. I discussed the issues with the doctor about the not eating and anxiety Jacob has had since the surgery. Things seem to be getting better so we are going to give it a couple of more weeks. We also discussed the possibility of the Methotrexate causing the sleeping issues. He said it is a extremely rare side effect but it doesn't mean it is not from it. He didn't want to stop it just yet because there was a significant amount of inflammation in his knee. I mentioned again to him that I see JAcob holding his fingers a lot. He checked the right wrist and fingers and Jacob felt discomfort in his right wrist. He said that his middle finger, especially looked like it was not closing in his fist very tightly. Jacob also said that his fingers were sore when he was pressing on them. The rheumatologist said we may have to move on to the drug Humira. This is in injection form which he will get every other week. They took a bunch of labs today on him. We are going to return in 2 weeks. Dr. Lopez will decide then if we will be switching meds. I am hoping that now that more joints are involved that the diagnosis will not be changing from pauciarticular to polyarticular. The polyarticular is a more severe typr of arthritis that can more than likely last into adulthood.

School is coming along this week. So far so good. 1/2 days everyday this week. I told his teacher today about the finger and wrist involvement. This may explaine the messy writing now, as well as the soreness playing guitar hero!

I guess two steps forward two steps back today! Pray that this will be the end of the new joint involvement.

Saturday, April 5, 2008

12 days out from surgery

Today is Saturday, what a difference a day makes. Jacob has resumed his normal eating. He has been very active today. Amazing how he can bounce around and avoid any stress on that knee. If this were an adult I think we would still be on the couch!

Friday, April 4, 2008

opthamology appointment

Yesterday we went to see Dr. Foster. The appointment well aside from having to wait 2 hours to be seen with a very overtired nine year old. Jacob's eye's were clear! There were no cells present at all! His right eye pressure was at 13 the left they could not get. The reading was normal. So the next step is to stop the drops and wait. He is to return to see the doctor in 6-8 weeks.

So overall physically Jacob has gotten all good reports. The knee is doing well, the eyes are great but mentally Jacob is having a very rough time. After Tuesday he wasn't able to go into school the rest of the week. He has been very anxious from all of the stuff going on and has had a very difficult time sleeping. A couple of night's he didn't fall asleep into the early morning hours. Another thing that we have been dealing with is that he doesn't want to eat. I have been on the phone with the pediatrition discussing how long this can go on. He is hardly eating or drinking. Tonight I finally got him to eat a Trix yogurt and drink some of an ensure drink. I had to force him to drink some. Tomorrow I am going to check back with the doctor to let them know how he is tonight. I think he has lost more than at least 6 pds. Tonight is the methotrexate dose. Tomorrow he will definitely not want to eat.

Jacob started physical therapy tonight too. His left knee measured about 1 inch bigger around at the top and the lower about 1/2 an inch. The PT did a lot of stretching. He also tried to do the bike. He was only able to go a half rotation. I think he is going to be very sore. We also stopped the anti-inflammatory on Wednesday to see if maybe it was causing some of the issues he is having.

I stopped into school this afternoon too and spoke to his teacher. I just updated her on what has been going on. The kids signed another card for him. It made him very happy to read it. They are all hoping for him to come back. I also got his report card. He did very well considering the major distrations this term! I am so proud of him. If he could just learn those multiplication tables now.....

Tuesday, April 1, 2008

Back to school

Jacob made it back to school today! He woke up today and immediatly started saying he couldn't go back today. It was a struggle to get him up and going. He did manage to sleep well last night but I had to wake him to go. I wasn't giving in because I knew that his anxiety would continue to get worse as the days went by, He was very nervous. I was able to drive him in a little early and bring him up to his classroom. His teacher had a great talk with him before the kids came in. She assured him that they would do everything to make it a comfortable and easy day for him. He stayed for about 3 hours. I picked him up right before lunch. He was tired and his eyes were burning. But he did it! He was very glad to go today. Tomorrow he only goes from 12:45 - 3:00. He is not going to do the state testing so he will go in after the test. We decided that he wasn't feeling well enough mentally and physically to sit through a long testing. It would of just added to the stress for him. Stress we don't need right now! As far as the burning eyes.. I sincerely hope it's not the uveitis. He has complained off and on lately that his eyes hurt. He is still on the once a day eye drops. Thursday is the Eye appointment we will see.