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.
Tuesday, December 4, 2012
Thursday, November 15, 2012
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
Posted by Jacob's Mom at 9:22 PM
Thursday, September 27, 2012
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.
Posted by Jacob's Mom at 10:25 PM
Saturday, September 8, 2012
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.
Posted by Jacob's Mom at 3:37 PM
Wednesday, August 15, 2012
Posted by Jacob's Mom at 8:36 AM
Saturday, July 28, 2012
Posted by Jacob's Mom at 10:17 AM
Wednesday, April 11, 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!
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.
Posted by Jacob's Mom at 10:17 AM
Thursday, March 8, 2012
Friday, February 3, 2012
Posted by Jacob's Mom at 12:31 PM
Thursday, January 5, 2012
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.
Posted by Jacob's Mom at 5:58 PM