December 2012

Finally got in to see the Rheumatologist since jacob's arthritis flared. He has had 2 injections of Humira since I last spoke with his doctor. His knee has improved quite a bit. There was only some fluid present. It is still stiff for him, but its getting better. He still has swelling in a couple toes. It concerns me because they do not bend at one of the joints. We also found out the details of the recent hip MRI. The arthritis is only mild in both hips, and It has changed some since the last MRI a year ago, but there is no bone damage. That was great news! The mri also showed the lymphnodes in the hip are inflamed as well. The doctor said that can happen with the synovitis. So the plan is we continue the Humira and return in 3mo. Jacob did have a bunch of labs drawn so hopefully they are okay.

Remission is offically over

Jacob is restarting Humira tomorrow. He has been off of it since May of this year and his joints are starting to flare. Right now he has a stiff, swollen knee and a recent MRI shows that he has active arthritis in both of his hips as well. After speaking with the pediatric rheumatologist on call yesterday, we were told to start the Humira immediately. Last week he went for a recheck of his eyes too and he is still having trace cells. He had been off steroid eye drops for two weeks. It would of been okay to follow his eyes a little longer, but with the joints starting to swell there is no more waiting. So back on meds he goes. We see his rheumatologist in a few weeks, so we will see how things are looking then. Hopefully the knee swelling goes down and he won't need joint injections.
                                             
                                               You can see the swelling in his left knee

Uveitis is back

After a few years of having clear eyes, we found out yesterday that Jacob's eyes are flaring. Yesterday Jacob saw our local eye doctor for a quick check to order new glasses. Jacob had been complaining that he can't see far all of a sudden his glasses on. So I made the appointment to get a new RX and order new glasses. I was not at all expecting to hear that the doctor saw cells. He said that the right eye had 1+ cells, the left just a trace. Right after the appointment I called Dr. Foster's office and they had  the doctor on call, call me right back. She advised me that we should get him into MERSI as soon as possible. They scheduled us for 7:45 AM today. After a 2 hour drive into Boston in the awful traffic, we saw Dr. Foster. He was concerned because when the tech took Jacob's vision it was very poor. He could barely read the big E with his right eye. Both eyes were significantly worse in vision. Dr. Foster asked the fellow to have him refracted (see if his vision could be corrected with another RX), dilated and a retina scan and possible angiography. Panic mode was setting in. Fortunately, after he was refracted they saw that his vision could be corrected and that the poor vision was more from the glasses needing an update than from disease. I don't understand though, because he was just there a month ago and his vision was fine. So how did it decrease that much in 4 weeks?
After the dilation, Dr. Foster looked again and he could see that the inflammation had not spread to the back of his eyes. So the treatment plan is to go on the steroid eye drops for four weeks. Starting 4x a day for the fist week, 3x a day for the second week, and so on. Then return in 6 weeks for a recheck. We are hoping the drops will kick this and that's all he will need for now. We have not discussed restarting any systemic meds yet. We now need to pray that the drops are only for this short time because he cannot be on those for an extended period due to his cataracts. The drops will worsen the cataracts. 
I just can't believe this is all starting again. It's been four years since he has had a uveitis flare. He has been off the Humira for four months and it's back. It is so disappointing. So do these kids ever get off meds? The pictures are Jacob at age 9 starting Humira and him yesterday.

September 2012 Rheumatology recheck

Jacob has been off of Humira over 3 months now. Overall he is still doing very well. At his last visit he had a couple of swollen toes and was started on Meloxicam. His toes lookrd grest! There wasn't any swelling in them. The only other thing that was a concern this visit was his left hip, again. A month ago his hip seemed to be okay, now it is stiff again. Jacob does not have any pain in it though. Jacob has never really complained of pain anywhere. I honestly think he has a very high pain tolerance and unless it's something severe with him it doesn't register. The rheumatologist made it very clear that his hip isn't "normal" but she is unsure if it's active disease or if it's stiff because of past active disease. His last MRI, a year ago, had shown then that there was active arthritis in both hips. So the plan for now is that the doctor wants to give him another few months off of the heavy meds and repeat an MRI then. The MRI will determine whether or not he will need to start back on his medication. I discussed with the doctor that I was a little worried that if this is active disease, what is it doing to his hip right now. Hip arthritis scares me. She felt as though if we waited another three months that we wouldn't lose any ground without treatment. She wants him to continue this "holiday" off the meds. So by the time the MRI is done it will be 6 months off of medication. I am glad his body is getting a rest from these meds and hope all stays quiet!

Oh I almost forgot to add, Jacob had an eye appointment last week and his eyes are still clear. So no Humira for 3 months and NO RELAPSE!!! Wahooo!! We still need to see Dr. Foster every three months to be sure they stay clear.

I just wanted to share a before and after photo with you. These pictures of Jacob's toes were taken three weeks apart. The first one was prior to the Meloxicam, the second 3 weeks after starting the NSAID. I am amazed at the difference! He has now been off Humira for 3 months now. It has been nice to be able to give his body a break from it.

July 2012 update

 I know it has been a while since I updated the blog. Everything has been going well with Jacob. At the last rheumatology visit in April we decided that we would try to wean down on Jacob's Humira. He has been on Humira for 4 years now. (time flies!) The rheumatologist and I discussed weaning him down slowly. We went from giving the Humira every two weeks to every three weeks. Jacob seemed to be okay with that until about mid May, when he decided he was done with the med. He flat out refused to let me do the injection. I don't know if this is what many families go through when the kids hit the teen years. I emailed his rheumatologist and she said that we can give it a try stopping it. Jacob had the understanding that he may need to go back on this if his joints started to get inflamed again. We just saw the rheumatologist 2 weeks ago. Overall he is doing great! The only thing that showed was both of his second toes were swollen. They xrayed his feet to be sure that there was no bone damage happening. Thankfully there wasn't! The doctor gave Jacob 5 options. (I know he likes to have some control in deciding his treatment) She said we can watch the joints a little longer and see what happens, he can start Meloxicam (an NSAID), Start MTX, start Humira, or restart both Humira and MTX. Jacob chose "option 2". So he started on the Meloxicam. We are to return in another month to the rheum because she wants to watch him closely. I think the appointment is the first week of September. We also have an appointment the end of August for his eyes. I will be very nervous for this appointment because he will of been of the Humira for 3 months. This is the longest he has been off meds while he has had uveitis. This appointment is good timing if his eyes flare we know that he has no choice to go back on the meds.

You can see the swelling in the second toe

Rheumatology, Orthopedic and Nephrology appointments. April 9, 2012

This past Monday Jacob had three appointments. Nephrology, Rheumatology and Orthopedic. What a long day that was! It was good I could coordinate seeing all three doctors because I only needed to miss the one day of work. Having a child with a chronic illness can be tough to manage being a working parent. It has been much easier now that things have been relatively quiet for him and we only need to go every few months or so. During eye or joints flares, that is another story!

We saw Nephrology first. Jacob has been having hematuria for some time now. He had a bout of this when he was five years old and it had stopped for a long time. It has been going on for quite a few months again. He started seeing the Nephrologist last summer. We still don't really have any answers. An ultrasound was negative. Jacob's dad and I were negative for the condition. (it can be familial) This time  the doctor ran some extensive labs on his kidneys. I counted 21 tests on the lab slip. He is looking for an immunoglobulin disorder to Lupus and is rechecking the kidney function and ANA etc. If these blood tests come up negative then we will continue to follow the Hematuria and watch for any changes. The doctor has thrown around a possible biopsy, but decided at this point it isn't necessary. Thank God! Hopefully we get the blood work results soon!

The Rheumatology appointment went very well! There was no joint inflammation anywhere. I was a little nervous about this appointment. About a week ago Jacob had woken up and was having a lot of knee pain. He went off to school that morning limping. It went aways fast as it came. Apparently during the last few months Jacob has grown a lot. Last visit he had some leg length discrepancy and some size discrepancy in his calves. This has all evened out.
There was some slight stiffness in his left hip but she could push past the stiffness. We decided to try to wean Jacob off of Humira. We are going to start slowly. Instead of giving it every 2 weeks we are going to go to 3 weeks. He has been on this for almost 4 years. I am nervous, but I feel as though we need to try! So I will need to watch closely for any trouble with his joints or his eyes.


The last appointment was with the orthopedic. Jacob had his usual xrays to check the curvature of his spine. His spine is curved at 16 degrees. This is still considered minimal. With puberty the scoliosis can worsen. So we are so glad that it is pretty stable. We won't need to return for another 6 months to the orthopedic.

Awareness

eye update 2/1/2012

January 22, 2008 is when this uveitis journey began. Four years later it is still an unwavering worry. Uveitis is a disease that affects only about 11,500 children in the United States. Even though it is extremely rare, it is the third leading cause of blindness in the developed world. Children with this are at risk for blindness and complications from glaucoma and cataracts. In simple terms, uveitis is inflammation inside the eye. Left untreated it can damage vision rapidly. When Jacob was diagnosed with uveitis four years ago it was a complete shock. I had heard that because he has juvenile arthritis that he would be at risk. The uveitis was diagnosed four years after the diagnosis of juvenile arthritis was made. This been said, it is extremely important for children to be followed very closely, even years after the arthritis diagnosis. Uveitis can pop up very quickly and silently. Jacob had NO SYMPTOMS.

Since the diagnosis of uveitis we have been going to see Dr. Foster who is in Cambridge. If you are unfamiliar with Dr. Foster you can read up on him at www.uveitis.org . This site has a wealth of information. Jacob's eyes have remained clear of inflammation since about June of 2008. His uveitis has been controlled with Humira. Just this week we went for the visit and all continues to be well. Jacob's eyes are free of cells. He has not escaped this disease without damage though. He has small cataracts that formed as a result of the uveitis and steroid drops that were used to treat the inflammation. Jacob fortunately used the drops for a few short months. We are extremely lucky that he was treated aggressively and his vision has been preserved. He has started to notice that glare is a problem for him. He says that when he looks at lights he sees a jagged halo around them. This is caused from the cataracts. The cataracts are mild, in a sense, and do not need to be removed at this point. At this appointment I was curious to see when we could let our guard down considering he has been doing so well. Dr. Foster said that 7 years free of inflammation (which will be in 3 more years!) and we will talk about moving his appointments further apart. So for now we continue every 3-4 months in Cambridge.

Happy New year! Finally an update!

I figured with a New Year it would be a good time to give an update. Jacob just had a birthday last week. He is now 13! A teenager! I can't believe how quickly he is growing up. He is getting so tall too! I am happy to say his arthritis has been doing well. He hasn't complained much at all in the last few months. I think maybe it was around Halloween he had some ankle pain, but that was short lived. Today he had his 3 month follow-up with his rheumatologist. The doctor we see we really love! She is so kind and I just love how she interacts with Jake. She understands his personality well and knows exactly how to talk to him. This is huge for us. Overall she said she is giving Jacob an A today. His joints are doing great. The only issue, which has been an issue for quite some time is his left hip. It is significantly tighter than the other side. Jacob has zero pain from this even when the hip is manipulated. She said it will only be a concern if it does start to cause him pain. The only other findings were his left knee and leg are overgrown from the active arthritis in the past. It is still not corrected itself. I thought the leg lengths were a little more off than the last visit. His left calf muscle is about 1 1/2 inches smaller than his right. The other issue that we have been following is his scoliosis. The rheum felt as though it has worsened. He has grown almost 3 inches in the last 3 months so with this growth spurt it is possible. Jacob will see the orthopedic in April and he may get a shoe lift at that point. He is also being followed by a nephrologist for another issue that seems to not be going away.
I do think the appointment went relatively well. I had a talk with the doctor today about how Jacob has had arthritis for 8 years now. When she was pointing out the issues to me today she mentioned how he has had arthritis for a long time. To hear that out loud I have to admit kind of startled me. You know to look at your 13 year old child and accept he has these "issues" from having arthritis "for so long" it kind of hits hard. He has many more years to live and if he has permanent issues already, what will the future bring? We continue to pray that a cure will be found.