Friday, February 29, 2008

Cortisone we thought

Yesterday, Jacob went in to Floating Hospital to have his Rheumatologist do a cortisone shot in his knee. Jake had to go under anesthesia for the injection and the draining of the fluid. We had arrived at Floatong at 12:00. Jacob had not ate anything all day because of the anesthesia. We checked in and saw the nurse. The nurse put a numbing cream on his hand to help with the IV. At about 2:00 he was brought back into the OR. I was able to be with him until he went under. Jake did not do to well with putting the IV in. It was heartbreaking to see him so scared and in pain. The procedure seemed rather quick. After it was done we followed the doctors into the recovery room. Dr. Lopez said that he wasn't able to do the injection because when he was draining the fluid there was blood in it!! He wasn't sure on why that would be. He said that it could be a possibiltiy that he hit a nerve going in. Or that he wasn't in the proper place. He also wondered if there was something going on besides the arthritis. He asked if Jacob had a trauma to the knee. My husband and I could not recall an incident. The doctor decided that he would order an MRI of the knee. This will be done next Wednesday at Floating. The MRI will rule out any trauma or anything else.

When Jacob woke from the anesthesia he was so happy that he did it! He was so brave. He said now that it's all done I will feel so much better. I was so heartbroken to have to tell him that after all he went through, that nothing was done! He was so upset that he wasn't going to feel any different. He was actually in more pain then he started with because of the poking around.

Sometime later that night, Jacob asked me if we could let the doctor try it again. After all he went through, he wanted to go back again to get rid of the pain he has.

It has been one long week. Next week we will be looking forward to seeing what is going on with the MRI. Oh, did I mention he will have to go through the IV again for the contrast during the MRI? The MRI is also scheduled at 8PM on a school night.
The next morning he has practice MCAS exams. He will be far from rested to take those!

Wednesday, February 27, 2008

Follow-up with Dr. Foster(eye doctor)

February 26th, 2008

We just had our 2 week follow-up with Dr. Foster in Cambridge. We had some great news today. Dr. Foster said that Jake's eye's were clear of all cells today! We informed him that we started on the Methotrexate this past Friday. Jacob is getting to be a pro at all of this! He even sat still for the awful glaucoma test. He does not like the feel of the numbing drops. His eye pressures were up to 24 in both eyes today. I guess anything between 10 and 20 is considered normal. The doctor said his eyes could handle this because he is young. It does need to be watched closely though. The new plan is going to be maintaining the drops at 6x a day through next week. Then tapering down a drop each week. This should bring us to the next appointment which is in 5 weeks. As far as I can understand he will be weaned slowly to see if the cells creep back up and it will give the Methotrexate time to kick in. His vision actually improved to 20/25 today. Which I think is normal for him. So as far as the Methotrexate goes... I think he may be slightly tired more than usual. And today he was not feeling well in the car on the way home from Cambridge. He had never been car sick before so I wonder if it is a little from the drug. Over all not too much will slow him down. He was still going full speed tonight(a school night) at 10:30PM!!!

Friday, February 22, 2008

Methotrexate therapy begins

Today is Friday February 22nd.... Last day of school vacation. Been kind of an exhausting week. Lots of stuff running through my head. I gave JAcob his first dose of the Methotrexate. At about 2:30. He took the four pills like a trooper. I have explained to him that he may not feel too well for a little while on them. It is about 6:45 pm right now. His little nose and cheeks are a little red. The pharmacist said that I may notice a little flushed skin tonight. Yup! Other than that he is doing okay. I don't really think too much will happen on the starting dose. Although, who knows. I will be watching him very carefully! Oh, the rheumatologist called back a little while ago. The cortisone injection is on Thursday. At 2:00!! The poor kid will be starving. He can't eat because of the anesthesia. So on Tuesday he has the eye appointment with Dr. Foster, then Thursday that. Should be a busy week. It's tough trying to do all this an work too! On Tuesday I am working a half day then I have to take off Thursday for the injection!

Rheumatologist visit

It is now February 20th. The day we see Dr. Lopez to prescribe the methotrexate. The appointment went as expected. Jacob's knee which is still hurting him, was first to be looked at. His knee was still swollen, not as bad as it was in January. It is still hot to touch. We told Dr. Lopez that Jacob has been not too active. He has chosen to sit out at gym class in school. He has been defintely avoiding use of the leg whenever he can. When the doctor looked over the swelling he could see that the leg wasn't able to lay as flat as the other one. Dr. Lopez suggested that we schedule a cortisone injection. The injection will have to be under general anesthsia. Jacob does not love the thought of needles, so just as well not to traumatize him. The doctor is going to get back to us on the day and time. Physical therapy will be needed also to get the leg to straighten out.

Oh ya..the methotrexate..chemo He has given a prescription for 4 tablets of 2.5 mgs that will be started on Friday. He is to take the 4 pills for two Fridays in a row. Then bloodwork to see how his body(all 62 pds of it) is tolerating it. They will be following the blood very closely to watch for liver problems, white blood cells, etc.... The doctor gave us some more info on the side effects. They will mainly be stomach issues for the first couple of the days and then tiredness...just in time for the school week.

January 2008

New Year brings new issues...

One night in the beginning of January, while putting Jacob to bed he mentioned that his knee was hurting. I looked at it and thought it looked swollen. I had Jacob come downstairs to see if his Dad thought it looked swollen also. He did. Right then I knew the dreaded arthritis, that had been in remission, for some time had come back!

The Rheumatologist's appointment had already been scheduled for sometime late in February. This was only early January. I brought him in that Monday morning to see his primary care doctor who then placed him on Naproxyn.

January 16th... The knee was looking VERY swollen and hot. I was starting to get worried so I call the doctor at Floating hospital and moved up the appointment to January 16th. On January 16th, We saw doctor Laurie Miller. She was the rheumatologist on call. Jake had been on the naproxyn for approximently 2 weeks with no improvement. She decided that we should try indomethacin instead. It was a little more powerful medication. He also had to start on zantac because of the side effects of the medication on his stomach. Dr. Miller asked about when his last eye appointment was. I told her He is scheduled soon.

January 23rd... The opthamologist appointment. When we were going for this appointment I had a strange feeling that this time was going to be different. Call it mother's instinct I just knew it wasn't going to be good. Just prior to arriving at the appointment I had called the office to see when his last appointment was. He hadn't been seen since February of 2007! I wondered how I could of possibly missed a six month follow-up. When we were in the examining room I asked the doctor's technician if I had missed an appointment...why it had been so long. She said that the doctor had written down one year recall! The rheumatologist had just told me last week that he needed to be seen every 6months. They obviously had different time frames when he should of been seen. When the doctor came into the room and I explained that Jacob had pauciarticular JRA with a blood test of ANA+ he did his exam with the slit lamp. The slit lamp is the only way to diagnose uveitis. He took an especially long time looking into his eyes. He then said he sees cells present that would diagnose him as having uveitis. I had read only briefly into it before so I didn't know then what we were going to be in for. Jake was placed on Pred-forte eye drops 3x a day for 2 weeks then he needed to be checked.

The eye drops were interesting.. Jake had a very difficult time with putting them in. But we did I !

January 30th... We were scheduled with the rheumatologist, Dr. Lopez, Jacob's origional rheumatologist. We went into see him to review the situation. I had told him that we had seen the opthamologist and that Jake had uveitis. He was not happy that we had gone a year between eye appointments. The opthamologist should of kept him on a 6 month check even though he was free of arthritis symptoms because the uveitis can show up anytime. Jacob's knee was still pretty swollen but he wanted to give it more time to see if the new med. would work. He wanted to see him back in a few weeks to decide if we should do another cortisone injection.

In the mean time.. I had been doing a lot of research on uveitis. I came across a website that a doctor called C. Stephen Foster MD put together. Dr. Foster was the founder and president of the Ocular Immunology and Uveitis foundation right here in Cambridge, Massachusetts. His website is fascinating and filled with tons of information. I discovered then the seriousness of the eye condition that my little boy has.

What is uveitis? Uveitis is rare, serious medical condition that can blind a child if not treated properly! It is estimated that there is only about 38 cases of this out of 100,000 people!! The uveitis is an inflammation of the uvea in the eye. The scary thing is there is no symptoms until there is permanent vision loss. I just think of the what if's if we never went in to get that diagnosis. The treatment for this can be very complicated when a child has a rheumatic disease. The first step of the treatment is the steroid eye drops. We were on the right track! The only thing we needed to watch for though was for the side effects of the drops which are cataract formation and increases in intraocular pressure.

February 6th... The return visit with the opthamologist. Were the drops that Jacob took so bravely working? The doctor had great news today, he looked into Jacob's big beautiful eyes and said "No MORE CELLS". Wow I thought that wasn't as bad as I had read. He said we could start to taper the drops. We were instructed to go from 3x to 2x a day. I had told him that I had read up on a doctor who was a uveitis specialist in Cambridge and I wanted to get another opinion on it. He seemed surprised but he said let him take a look and see what he thinks.

February 8th.. Jacob has conjunctivitis, and bad! Both of his eyes were shut! Out of school today. I called the opthamologist back and he wanted to see him. I brought him in and he said we should up the drops back to 3x a day because the conjunctivitis can sometimes affect the uveitis. Drops down to 2 a day, for a day, back up to three already! Anyway we were seeing Dr. Foster next week.

February 15th... I had been anxiously awaiting the appointment with Dr. Foster. I told Jacob that this doctor was tops around for his new eye condition. We woke up early this morning to beat the traffic into Boston. We arrived promptly at 7:30 for his 7:45 appointment. There was a bit of a wait , but not too bad. The technician took down all of our past history and did a few eye exams. Dr. Foster's fellow then came in and did a more thorough history. She did some more tests. Jacob was so brave doing all of those. I was thinking should we really be here? We were just told a week ago things looked great. Maybe his case wasn't as difficult and it was unnecessary to come all the way here for such a mild case.

Dr. Foster was next to come into the room. He was a very pleasant doctor. He wanted to know what we knew about the disease. I had told him the round of steriods we were doing and that the other opthamologist wanted to start weaning him off. He looked into Jacob's eyes. The left eye presented with 2+ cells and the right 1+. The rating scale for uveitis goes from 1-4. Jacob's eye were considered a moderate case. Dr. Foster said that we had to be extremely aggressive to fight this. I wondered how could he have this when we were just told a week ago all looked well! Thank God I we went there today!

Dr. Foster immediately increased the pred-forte drops to SIX times a day! And said he needed to go onto a drug called Methotrexate. Methotrexate is a chemotherapy. It is an immune suppression drug to try to stop his body from attacking his eyes. He said we were to have the Rheumatologist prescribe it when we saw him next week. His eyes would be number one to fight for at this time. The knee is secondary. The medication will come with some side effects though.. nausea, possible vomiting, tiredness, hair thinning and lowered immunity. All this info was so overwhelming. Drops 6x a day, now school had to help and the effects on his little body from a chemotherapy now. The Rheumatologist will start this poison next week. Return to Dr. Foster in 2 weeks or so.

Off to the Rheumatologist...

Sometime, I think, In February of 2004, We started seeing Dr. Jorge Lopez at Floating hospital for children. Dr. Lopez had examined Jacob and ordered more bloodwork and xrays of his knees.
The diagnosis came: Jacob has PauciArticular Juvenile arthritis. This type of arthritis means that he has fewer than four joints involved. It appeared that both of his knees were affected as well as a few of his fingers. Jacob was then put on Naproxyn for the inflammation and pain. Physical therapy was then started also. We don't know how long he had the arthritis but we figured sometime during his 4th year of age.His left leg had been quite a bit shorter than his right and he could not straighten it out all the way.

After the diagnosis things seem to get worse quick. Jacob was enrolled in pre-school at the time. Getting up in the morning was very difficult. He was very stiff. We had tried to have him soak in a bath to help get things moving. Big brother Andrew, who was seven at the time, was such a great help to his little brother. I was pregnant with my third son and wasn't able to lift Jacob very well, so Andrew used to help out by giving Jacob "piggy backs" into school.

By around May of 2004, the knees were not responding very well to the current treatment. Dr. Lopez decided that it was time to do cortisone injections. This needed to be done under a general anesthesia.

At follow-up, a huge success! The knee joints looked awesome!! Jacob had no longer complained of pain in his knees or his fingers! Dr. Lopez suggested follow-up and weaning of the medication.
One more suggestion, he said we needed strict follow-up with Jacob's opthamologist.

Ahh, the opthamologist... Jacob had initially been diagnosed ANA + and PAUCIARTICULAR JRA. This had left him prone to the eye disease Uveitis. We continued to have the frequent eye exams but had been negative for the condition. As of 2006 Jacob had been symptom free from all effects of the arthritis. He may of had a short bout of it, but could he of outgrown it??

Dr. Lopez put him on a 18mo follow-up. We saw the opthamologist about 6months later. They eyes were clear also. That was February of 2007. The opthamologist put him on a year recall. I at this time, knowing what I know now about the dreaded eye disease uveitis, that the opthamologist should of kept him on a 6 month follow-up.

We are now in January of 2008....

Thursday, February 21, 2008

First post: The initial knee troubles

January 2004... Jacob just celebrated his 5 birthday on December 27. It was a cold January when we decided to plan a trip to the warm beaches of sunny Florida. We took a quick trip to Disney while we were there. The trip as I remember was a great time! Jacob and his big brother Andrew had the time of their life. It was then that my husband and I noticed something different about Jacob. He had begun to skip a lot. We thought it was cute.

Sometime after we had returned home Jacob had picked up another cold from his pre school. He didn't seem too well so I decided we better take him to the doctor for a quick check.

While we were there I had mentioned to the doctor that he had been limping around. I had actually thought maybe when I was putting on his shoe the other day, I could of twisted something in his knee. The doctor looked at his knee and saw that there was indeed swelling.

He then ran some bloodwork.

That was the day our life would change. The bloodwork, which I am not too sure on the specific tests, indicated that he had some immune response to something going on with his knee. I do remember that his sed rate was not normal and that he tested positive for the ANA test.

We were referred to a Pediatric Rheumatolgist at Floating hospital in Boston.