Bad Day!

Jacob woke this morning at about 4AM with severe stomach pain. He couldn't fall asleep because of the pain. By 8 AM we were on the way out the door and he vomitted outside the car. So back in we came. I was very nervous because he had been completely fine last night. All I could think of was the Humira. I paged the rheumatologist and told him what was happening. He didn't think it was a side effect of the Humira. I called the school to report him absent and spoke to the nurse she said there were a few kids sent home with stomach issues. I am thinking this may be a virus. He is having so much pain though. He hasn't left the bed since we came back in the house. I spoke to the ped. doctor also and they said just wait it out. This has been a very long, exhausting week! One more day of school for the kids. I am hoping he doesn't miss his last day.

Humira treatment begins

I am very excited to say the new medication that Jacob has been put on has been approved by our health Insurance! The medication costs an unbelievable $1800.00! Our copay is only $6.00! The medication was over nighted and delivered yesterday. Today was the first injection. I had to dismiss Jacob from school today a little early because the pediatrician's office had to do the first injection. Jacob was very nervous to do the injection. He was fine until we pulled into the parking lot. It took a while to get him out of the car. When he finally got out of the car he refused to go into the office. I went in to let them know I couldn't get him to come in. A nurse at the office named Mary came out to help. What a wonderful, caring nurse! She sat outside talking to him for a while and even told him if he was more comfortable he could have it in the car or on the bench. Jacob was still crying and upset. She left me alone with him and I finally convinced him to go into the office. Mary gave him a hug and said she would be very careful. She put on the lidocaine that I brought. Jacob finally gave in and let her do the injection. It stung but he did it!! He and I were very relieved. She gave him a high five and he said thank you very much! So he said it wasn't too bad. Now in two more weeks I have to do the next injection at home. I don't know how that will go. HE says he will be okay with it. Mary told us if we wanted to she could do it for us at the office again. I may take her up on it.

As far as the joints.. Jacob is still limping with the knee issues. He has also complained about his ankles hurting badly. He is walking a little funny. I am hoping for a miracle that the humira will help this too. Four more weeks from today to see the eye doctor.

New medication: A man has to be a man about it..or a boy

Jacob had his appointment at the rheumatologist today. What a long day it was. We left for Boston at noon and got home about 5:30 with all of the traffic!

Dr. Lopez the rheumatologist spoke with Dr. Foster this morning before we came. They decided that Humira would be the next option. I kind of figured that would be the route they were going to go. Humira is a drug that is a Biologic response modifier. It is the next step on the ladder to treat aggressive uveitis. This medication is given in a injection every other week. I am very nervous about starting this medication because the side effects are very scary!! One of the side effects listed on this is lymphoma! This drug along with the MTX are both immunesuppresants.

The rest of the visit went well. Jacob's knee is still improving. Still no cortisone recommendation. Jake also had bloodwork, a TB test and a chest xray to prepare for the new medication. The TB test was a little difficult for him to do. It took about 1/2 hours to convince him to do it. He was crying his heart out! After that was the xray and then the bloodwork. He really surprised us with the bloodwork. He did great and no tears for that!

On the ride home I gave Jacob the pamplet on the medication to read. He was reading it and said why is it talking about injections and nurses. So I told him that he was going to need injections every other week for this medication. He didn't look too happy. I let him think about it for a while and asked him again later what he thought about it. He said he was okay with it. He told me a man's got to be a man about it! I said to him that the shot will hurt he said he can handle it.(I have heard that the shot is extremely painful!) This poor kid has grown so much in the last six months. I am so proud of him. He even said today, mom it could be worse.

So the next step is getting the medication. It has to get approval from the insurance. Humira actually hasn't been approved for uveitis. It has been only approved for severe rheumatoid arthritis in adults and polyarticular JRA. (Jacob is pauciarticular-less than four joints involved) It has shown to be effective in treating uveitis though. I am hoping the insurance doesn't give us any trouble. I think the drug is close to $2000.00 a month. YIKES!!!!

Once we get the drug in hand. We have to go to the pedi. to have the first shot administered. He will have to sit there for about 20 minutes to make sure there isn't an allergic reaction. I am hoping by Monday we can have it done.

Dr. Foster wants to see us back in 4 weeks, to see if the drug helped. Then we see the rheumatologist to adjust the drugs if necessary. So the current meds will be the methotrexate and humira. We will be able to stop the indocin. Yay for that!

Enjoying a summer day!

Wildman Daniel after he enjoyed his icecream

Can you see the uveitis?

So do you see it? The uveitis I mean.Look into those big beautiful blue eyes.They are the most beautiful eyes. I am not quite sure who he got them from but not Mom or Dad we both have brown eyes. Possibly Grandma or Pepere. You don't see it do you? That is because the uveitis is invisable! There are no signs. Pretty scary for a disease is the third leading cause of blindness in this world. Over the past couple of days it has been sinking in how deep we are into this juvenile arthritis thing.
How is it possible that he has JRA? How is it that he has now gotten uveitis? Uveitis is so rare that only about 38 people out of 100,000 have it. Out of those 38 10% are children and even less than that are boys! So why does Jacob have it?

I will never know the answer to those questions. I guess there has to be someone in those statistics. Well, we are here and we now begin the fight to save his vision. It is a very scary thought that 10% of kids will go blind with this disease despite treatment. Despite those odds I have faith that this will not happen to him. We are seeing the top doctor for uveitis in the country. I am very unsure where this journey is going to take us. I do know that we are possibly in it for quite a while.
Next week we see the rheumatologist to discuss what treatment is next. More medications. Which ones I don't know.

Cells present again!

We had an appointment with Dr Foster today. This appointment was on an 8 week follow up. Jacob has been off the steroid drops for the pst 8 weeks. I was very worried today about going. This appointment was going to be huge, to see if the MTX has kept his eyes clear. They were not. Both eyes were involved again. They both has a cell count of 1+. The eyes are in a flare. The MTX isn't doing what it is supposed to be doing. I am very discouraged and worried. I had assumed everthing would be alright because his uveitis was considered to not be as difficult to treat because he is a male. I was wrong. I think I know now that we are in for a long road to save his vision. Dr Foster wants us to see the rheumatologist next week to dicuss what is next. He suggested putting him on an additional med, another immune suppressor, or upping the MTX which means he will move on to an injection. We wait now for another week as this disease wrecks havoc on his eyes.

Jacob's knee is also not doing as well as it had been. He is having a really bad flare today. His knee was very sore today and he was limping all day. The knee was even more hot than usual. I think the cortisone shot is in the near future.

rheumatolgy appointment

We saw Jacob's Rheumatolgist this week. The progress has been slow but it is progress. The knee is much less "angry". The medications are doing their job. The swelling is better. The doctor said it is not where it needs to be but his is going to follow it for 4 more weeks. THe cortisone shot is still not out of the question. The knee is still in a slight contracture. Physical therapy still needs to continue. The only med change is that instead of the folic acid he is switched over to Leucovorin. Which he will take on Tues. Weds, and Thurs. This med is an MTX rescue drug. It will bind to the left over MTX that is in his system. It is just another type of folic acid, I guess. So over all baby steps but at least he is coming out of this. He is on the way to medication remission.

May 12, 2008

Monday morning! I am counting the days until school os out. I never thought I would say that. I just wanted to give a quick update on Jacob. He is scheduled to see the Rheumatologist in a couple of days. He is doing about the same. No better no worse. Last night was the first night in a long time that Jacob went out to play. He hasn't wanted to go outside in a long time. He said he was doing it for me for Mother's DAy. What ever the reason I was very glad he went out. For a breif while when I was watching him play I forgot about his arthritis. He was running around with the other kids playing wiffleball. He was out for a couple of hours. When he came in he played on the computer for a while. When he got up from the computer he could hardly walk. He said his knee was killing him, worst than ever he said. I didn't want to tell him it was because he played out. My heart was breaking for him. Why does a child have to go through something like this, all he did was play outside like a normal kid. This morning he was still really sore. He soaked in the tub for a while. He is off to school. Monday's I think are especially tough because he gets the tiredness from the Methotrexate this day. Arthritis just stinks, period!! Stay tuned for the update from the rheumatologist on Wednesday!

May 1, 2008

May is here, hopefully some good news will come with some nice spring weather! It is still a little cold out today though! I just wanted to give a quick physical therapy update. Jacob has been going to therapy since after his surgery. We have been trying to make 2x a week. Jacob's therapist's name is Melanie. She has been unbelievable working with him. She has a tremendous amount of patience with him. We couldn't of got a better match for him. He really likes her and I think he enjoys teasing her. When he started with Melanie his leg was pretty stiff from the surgery. He couldn't even do a rotation on the bicycle. His progress up until today has been wonderful. I think it was a great idea to start him on the splint too. His leg is looking pretty straight tonight. If he could just retrain his leg to walk normally I think he would be there. He still is walking with the knee bent. His quad muscle shows that. So much atrophy has taken place. I am hoping by the next time we see the Rheumatologist he will hopefully have enough improvement that he doesn't need the cortisone injection. I think the knee is a little less hot tonight too. The only other thing is that he has been complaining about his fingers hurting. They are sore on both hands. I am hoping the indocin will help them. So much medication, but if it works it will be very worth it. p.s. cross your fingers... no coughing for two days!!!!