November 1, 2013 update

I haven't updated in a little while and figured that today would be a good day to share what has been going on. Jacob is coming up on 10 years since his diagnosis of arthritis. There have been many ups and downs along the way. Recently, we have been going through some downs again. Let me start with an update on his arthritis. Just a few weeks ago Jacob saw his rheumatologist and he is still
continuing to have some issues with that one knee. His left knee. There is fluid present. He had recently been complaining that it is bothering him when he stands for a long time. The rheumatologist also feels as though there is still something going on with his left hip too. It is still really stiff. She decided instead of touching the Remicade dose, that she would up his methotrexate. So a few weeks ago we upped that med. The day after we saw the rheumatologist Jacob was scheduled for his Remicade. He has been on Remicade since February and had been doing well with the infusion aside from a few times of them struggling to find the vein. That day that he went in for his scheduled infusion they were unable to get a IV line in. After quite a few pokes and Jacob in pain, we decided to try again the following week. So last week we returned to the infusion center at his eye specialist and they tried once again to start the IV. No luck again. Jacob was in tears. It is so heartbreaking for a mother to watch their child go through a procedure like this and not even have success. My heart was breaking for him. So we left for the second time without him being able to get the med that he needs so desperately. Without this medication he is in danger of losing his eye sight and not being able to walk! The doctor decided that Jacob should get a port and felt it should be soon. The longer he would be off Remicade, the more chance he could get as reaction to it when it was restarted. Jacob was very upset with this news. He did not want a port. He was adamant that he was in no way getting one. So not only is it hard for me to make this decision for my child, its even harder because he is a teenager and he feels as though he should be able to help make decisions for himself now. Over the last week I tried so hard to convince him this is for the best and it needs to be done. I cried so many tears over the last week. I decided on calling the pediatrician and speaking to him about other options. His office ended up contacting the rheumatologist. So by Wednesday morning the game plan was changing. I spoke to the rheumatologist and we decided that we would move his Remicade to be done at Tufts. They have highly skilled pediatric nurses who she assured me "were the best of the best". So if there was any hope of getting a vein they would find it.

After many phone calls between the rheumatologist, the insurance company and myself, Jacob was scheduled today to do his infusion at Tufts. I am so happy to say he was able to get the infusion and NO PORT. We had such a great experience at the hospital. The nurses were phenomenal. The took their time looking for the best veins and placed numbing cream on the areas. The let him sit for an hour before they attempted the IV. Then before they attempted his IV they brought over a machine that was held over his hand to be able to see the veins clearly. It was pretty cool to be able to see them like that. The with just one attempt the nurse got a great line in! Jacob did not even feel the stick at all. What a relief for both of us! They gave him some premeds before they started the Remicade and also took a ton of blood for blood work. Jacob had never been premed before the infusions. The benedryl knocked him right out. This made the day go by much faster for him. I have to say I do like the extra precaution to avoid an allergic reaction. So these past few extremely stressful weeks finally ended with good news. I am so very grateful for our very awesome pediatrician and rheumatologist.

finishing placing the IV

waiting to start the procedure

sleeping!

3rd Remicade infusion, eye check and rheumatology check

This past week Jacob had his third infusion of Remicade. It started off very tough for him. They could not find a vein and it took multiple attempts to finally get one. To say this was heartbreaking is an understatement. Jacob was incredibly brave and sat still, patiently waiting, for them to find the vein. He was in obvious pain as they poked and poked and moved the needle around. Tears slowly ran down his face. I stood there helpless. So many thoughts ran through my mind watching my poor child go through this. No child should have to go through this to be able to see, be free of pain, and run around like the other kids. I am incredible grateful we have these meds, but it is so stinking hard watching him deal with all of this. Once the IV was finally in, he and I were very relieved. The rest of the infusion went well.

During the infusion Jacob has his eyes examined also. I am so happy to say his eyes are free of inflammation. He had been off drops for a week. His pressures were in the very high end of acceptable, but the pressure should improve now that he is off drops completely.

The next day was his 3 month appointment with his rheumatologist. Overall he feels much better and has only minimal stiffness in his knee. The doctor found some inflammation remaining in his toes, hips and knee still. She wasn't worried because he hasn't been on Remicade very long. We're going to give it some more time and see how the rest of the inflammation clears up. The important thing is he is pain free.

The next infusion will be in four weeks, and the rheumatologist said he is good until the summer.

 

February 1, 2013

Remicade begins. We had hoped that it would not come to this, but it has.

Jacob officially failed Humira, not only with his eyes, but also his joints too.

We will be going for these infusions every four weeks for at least the next

two years. We can only pray he goes into a medicated remission again.

Below is a picture of his knees yesterday morning. His left knee is very visably

swollen and has been very stiff and sore. He has been having difficulty getting moving after

he has been sitting or laying down for a while. Please pray the Remicade

does its magic and he doesn't need to have his knee injected and drained, and his eyes clear, and

he can get off these drops asap! He really doesn't want to be looking at cataract surgery.

 

 

 

 

 

Time for a change

Yesterday Jacob had an appointment with Dr. Foster, for the follow-up of his uveitis flare.
His eyes did look better yesterday because of the steroid drops, but we knew this was going to happen. The drops put out the fire. The problem is he cannot stay on steroid drops forever. Most vision loss with uveitis is from the overuse of the drops. They should only be used temporarily until the systemic med can maintain the remission ALONE. I knew going in to the appointment that this was probably going to be it for Humira. He had trace cells prior to restarting the med, in October. He restarted the Humira in November and the flare has only progressed. Dr. Foster has advised us that, in his opinion, the best thing to do right now is to put him on Remicade and add back in Methotrexate.
Jacob will start Remicade on February 1st. I'm hoping to start the Methotrexate this Friday.
Infusions are a new road for us. Jacob is not very happy about to change the med. He would prefer to stay on Humira.

Eye flare

Recently Jacob has been complaining that his "cataract" is getting worse. He has been seeing halos around lights. He has also been complaining non-stop that his glasses are dirty, when they are not! I made an emergency appointment with our local eye doctor to have a quick look. I had a feeling that his uveitis may be flaring. Sure enough it was! Not just a few cells but many! A full blown flare. Not only does he have all the cells, but he also has something new for him. He has KP's present. I still do not know much about those except that it means the cells are sticking his lens to his corneas. The doctor called into our uveitis specialist and they wanted Jacob on dilating drops and steroid drops. Jacob is not liking being dilated. His vision is very blurry. So the big question here is why are his eyes flaring. He has been back on Humira for 2 months. I am wondering if it is not working anymore. He is still having stiffness in one of his knees. I just started him back on meloxicam also. I have heard that once certain biologics are stopped and restarted, they don't work because the body has developed antibodies to the drug. Jacob has an appointment this coming Tuesday with the uveitis specialist, we will see what the course of treatment will be!