Saturday, December 5, 2009

Bring On the Good Times!

Robby is very excited about Christmas. He loves the lights on the houses, the tree, even the Advent calendar. His enthusiasm is contagious and I'm in a great mood lately. Today was a great day for other reasons. I captained a team for our local Jingle Bell Run in honor of Robby and today was race day. I am proud to say we brought together 15 team members and raised over $700 for the Arthritis Foundation of Central Ohio. That seems huge to me for my first time doing this, especially considering the economic times and time of year. Many of the group met up with us for the race and it was a really good time. I put together a cute outfit to run in and made matching scarves for Robby and I to wear. All week he kept talking excitedly about crossing the finish line and he was smiling and cheering when we went through the big inflated arch. Afterward, many of our family and friends that participated came back to the house and we grilled hot dogs and had baked potatoes and hot cocoa. It was a great group of people with lots of little kids playing together. I felt so happy to have all of those people supporting us and the Foundation. It felt really good to know people care about what we're going through.

Robby is doing so well! We started a taper on the Prednisone about a week ago and I'm expecting further taper when we see Dr. H. on Wednesday. I'll be curious to see what she says about his liver when she examines him and also to see what the labs look like. He seems so healthy right now and it's really encouraging. He has color in his face and lots more energy. It's like I'm having to learn how to parent a toddler all over again because he definitely did not have normal energy levels before. He also is showing a lot of improvement in his mobility in his knees. He can walk up and down stairs holding the handrail (had to scoot down on his bottom before), he can step up and down off of curbs without even thinking about it (before he would stop and really have to concentrate and go slowly), he's asking to be carried less, and he's running and doing more physical play. Also, when I feel his knees most of the swelling is gone. I can actually feel the bones of his knee joints again. Before it was all so swollen and puffy that you really couldn't feel the joint. He seems so much happier and it's great to see him more "normal." Hopefully the Prednisone will get all of the inflammation under control and then the Kineret will be enough to keep things in check going forward. I don't want him to have to be on steroids, but I am thankful for the success we are seeing.

I was looking at some pictures from last Christmas and it felt really weird. I was realizing it was one of the last times I took pictures of him before he got sick. I found myself staring at them and wondering if he was already in some kind of pain or was there something I should have seen? A few days after Christmas we went to visit my dad and step-mom and I can see in those pictures that he looks kind of sweaty the whole time. I remember thinking at the time he was probably coming down with something. He was better for about a week and then we went looking at houses just a few days into the new year. We went through about ten houses that day and by the time we got to the last one I knew we needed to take him home. He was flushed, felt feverish, and was just kind of listless and whiny the way little kids get when they don't feel well. Within days the first bumps of the JRA rash would appear and I would have him in an urgent care center thinking maybe it was chicken pox or measles or something. I had no idea at the time what was about to happen to us, to him. I can't believe it hasn't even been a year. I would officially call it the longest year of my life. When I look at where we are now, though--I am proud of all of us. We are managing. We are living our lives. We are not letting the disease win. We are fighting JRA and for now we are winning. And for now is really all I can ask for.

Thursday, November 12, 2009

This Is What It's Like....

I've been away too long and have lots to catch up, I know. The thing on my mind today though is trying to capture a little bit of what it's like to parent a kid with JRA. At least my perspective of it which is the only one I can speak to with any authority.

We had a scheduled follow up with Dr. H yesterday. The first thing that needs to be known is these appointments are anything but routine. You go in hoping and that's all you can do. Will the labs be better? How will the exam go? There is this breath-holding waiting for the other shoe to drop that goes into these appointments. The thing is, there are never only two shoes. Oh no, in JRA land there is a limitless supply of shoes waiting to thud and deliver nasty news. In our situation, we've been trying to avoid starting Robby on Prednisone if we could. We did increase the Kinaret dose in mid-October, and labs have shown some marginal improvement, but his SED rate is still 23 and his knees and ankles are still huge and warm to the touch. So it's helping, but not enough. The icing on the cake this time was his liver seemed enlarged upon examination. That told it was time to go down the steroids road. We can't risk letting his liver get too involved and potentially damaged. We drew new labs yesterday to see if his liver enzymes are still ok and I have yet to hear back on those.

The second thing that needs to be known is JRA is relentless. It doesn't care how young or cute your kid is. It doesn't care that you keep all of your appointments and follow the doctor's protocol to the letter. It doesn't care that you are worried about how you will explain to your little boy that he may not be able to play football when he gets big because it's all he talks about. JRA does what it does and that's it. I will say that keeping all of the appointments and sticking to the treatment protocol at least gives your kid a fighting chance. It also will hopefully give you a better shot at sleeping at night knowing you are doing all you can. That is what I had to tell myself this morning. I was feeling like a failure as I gave Robby his first dose of the medication we had been working so hard to avoid. I had to stop and remember that I'm doing all I can and the course of this disease is not within my control.

The newest thing that I am struggling with (aside from excepting the introduction of Prednisone into our protocol) is wondering when he will realize he is different and how we will deal with all of that. If he doesn't achieve remission, there will come a day when he realizes that most kids don't have trouble going up and down the stairs and they don't take shots every day and get labs drawn every couple of weeks. He's going to know he is different and I don't know how that will feel to him or what will come of it. I try everything I can think of right now to give him some sense of sameness. I am taking him to the pool a lot and want to get him in swim lessons after the first of the year so that he can hopefully have a shot at swimming as a sport he can pursue. I think that will help. I'm not sure what else I can do at this point as he's still so young. I just try not to coddle him and try to keep JRA from dictating how we do things anymore than necessary. I hope it will be enough.

And an update that is long overdue: Robby's surgery in September went exceedingly smoothly. There is a great bit of medical mystery around exactly what it is that they removed from his hip. They know it wasn't malignant and they know they got it all out, but they can't definitively tell me what it was yet. I got the pathology report and it's interesting to see them talking about how they discussed his case at their departmental meeting. In the end they sent his specimen off to OSU for further analysis by their pathologists. At this point it's more to solve the science part of it than anything because I'm sleeping really well with the information I have now.

Sunday, September 27, 2009

On the eve of if....

Lots of uncertainty and anxiety tonight. I should be working on some math homework, but I can't really concentrate on anything outside of what is potentially going down tomorrow. Robby is scheduled for out patient surgery in the morning for something unrelated to his JRA. He was born with a vascular malformation, a blood vessel tumor if you will, on his left hip. The medical stuff all started for him very early with blood draws and ultrasounds trying to determine exactly what this thing was. The possibilities ranged from the harmless to the horrifying. In the end, the pediatric dermatologist decided it was probably a rapidly involuting congenital hemangioma (RICH) and we decided to just monitor it to see what it would do. The picture here is from around July 2007 when Robby was 3 months old. You can see the RICH pretty well. The white looking area was a spot that would ulcerate and bleed. For the entire first year of his life I had to keep the area covered with dressings with Aquaphor on them which had to be changed two to three times a day. I also had to be very careful with the area because the slightest bump or scratch would cause it to bleed like crazy.
After he turned one, the RICH had involuted (shrunk) a good bit and had pretty normal looking skin over it, so it didn't required the dressings anymore. The dermatologist was happy with how it looked and said, unless any problems developed, we could just come back when he was two years old for follow up. In January the illness that eventually led to our JRA diagnosis started up. April was Robby's second birthday and I went into the dermatology appointment thinking it would be no big deal. I was rather surprised when the dermatologist started frowning while she was examining him. She told me, "I no longer feel like this is a RICH." She explained to me that some of the characteristics no longer indicated a RICH. There were still a couple of different things it could be but she wanted to do an ultrasound to get a look at what was going on under the surface. We had the ultrasound and I was relieved to see that the tumor was a lot smaller beneath the surface than what it was when we had our original ultrasounds in 2007. It also seemed to have a lot less blood flow going to it than it had originally. Dr. W. gave me two options: have a punch biopsy done or have the tumor removed. She explained he would be awake for the biopsy and they would cut a section off and give him a couple of stitches. After all of the labs and things we'd experienced over the previous months, I knew there was no way he was going to be able to be still enough to go through that procedure. I also had concerns with how any future "big gun" drugs we might have to give for the JRA would interact with this now unknown tumor. I opted for surgery which is scheduled for tomorrow morning.
Fast forward five months and here we are. I am still convinced that surgery is the right thing to do. We have already moved onto biologics (Kineret) for the JRA and I don't know what is yet to come. There is a slight wrinkle though. Wednesday we saw Dr. H (rheumatologist) and had Robby's regular labs drawn. She called me Thursday night to tell me his hemoglobin was down to 9.5 (under 10 is considered anemic) and his SED rate was up to 52--the highest it's been the whole time we've been monitoring it. Leaving aside my frustration that he's seeing his worst JRA labs ever after I've been inject him with daily medication for four weeks now, this meant the surgery now had a big question mark on it. Was he too anemic to safely go through with the procedure? Dr. H. wanted to talk to the surgeon. We discussed whether or not we should just wait. She didn't want to because she's thinking he is going to need a round of Prednisone to reign in the flare and give the Kineret a chance to work and she doesn't want to give him steroids until we can figure out what this thing on his hip is. She told me the thing I knew in the back of my head but didn't want to say out loud, "We have to consider the possibility that it's turned malignant and we don't know it. Steroids would just make it grow faster."
I spent most of Friday trying to get answers out of the folks at the surgeon's office. He finally called me back today and told me he is comfortable but it will ultimately be up to the anesthesiologist on duty and whether or not they feel he will be safe. I explained to him why I want to go through with it if everyone is in agreement and he felt we were doing the right thing. We are supposed to show up tomorrow morning but I don't know if we will actually get to have the surgery or not. If they won't do it, then I think I will push through with the punch biopsy so Dr. H. can get the answers she needs to make the call on starting Prednisone.
What decisions these are! It seems I am constantly called upon to make decisions so much bigger than me that they can almost overwhelm. If anyone would have told me a year ago that I would be chosing which major medication to treat my toddler son with, or deciding whether he was healthy enough to try to push through with a surgery--I would have thought they were crazy. When I first started dealing with this illness, there was a lot of "How do I know I'm doing the right thing?" I agonized over it almost to the point that I couldn't make a decision at all. Since then I've made a little peace as I've realized all I can do is try to learn as much as I can, surround us with the best doctors possible, always keep Robby's best interest in mind, and pray for the wisdom and discernment to make the best choice possible. That has taken me a long way so far, but I have to admit I am really scared about tomorrow. What if something happens? What if he ends up needing a blood transfusion and it makes him sick? What if the unspeakable happens? Will it be my fault? These are the things that race through my head as I wait for tomorrow.
We took Robby for a walk earlier today and I had a bit of a Yolanda Adams song stuck in my head and it was a bit comforting to me:

I don't have the right to give up /I don't have the right to give in/You're gonna bring me through/I'm gonna put my trust in you
And that's all I can do. I pray that God will keep my baby boy in His hands tomorrow. I pray for wisdom for the doctors and nurses who will care for him. I pray that this tumor is benign and harmless. And I pray that we can move on and find an answer for ending this JRA flare. My little guy is looking rather sickly and tired lately. I would love to find him some relief.

Monday, September 21, 2009

They said this would get easier....

We were told when we started the Kineret injections that it would get easier. Somehow he was supposed to get used to it and it would just become routine. Maybe it will at some point, but I can tell you three and a half weeks is not that point. It was getting easier for me to give the injections and then his fighting and struggling got worse. There was an incident where he got his arm free from CK and grabbed at the syringe. I pulled it away and he wasn't hurt, but he only got about 3/4 of his dose. I was not about to stick him again. There was also another evening where he was moving around so much that I had to stop, re swab an area, and pick a new site for injecting as CK couldn't get an adequate hold on him and still leave enough of the original target open for me to make an injection. It's not CK's fault at all...the kid is strong. I only tried holding him once and it was a major effort that was marginally successful at best. The stress of this really got to me last week and I broke down post-injection and cried off in my room where Robby couldn't see me. I was considering whether or not we should switch to methotrexate so we would only have to do this once per week. Then I felt like a crushing failure because I even considered that option when I've read the black box warnings and all we were talking about here was my own inability to suck it up. I cried and I finally got my wits about me enough to pray about it, "God, please give me what I need to take care of my son. Whether it's within me or somewhere else, please help me find what I need to do this."

The answer didn't come to me until the next morning. I decided to check into my health insurance coverage for home health nursing care. It turns out I have pretty good coverage for this. I am in the process now of getting authorization and seeing if I can get setup with a nurse to come out in the evenings and give the injections. I realize we will still need to be involved in the process and help with holding, etc.--but the idea of not going it alone feels comforting. It will be a relief to have some help until he gets old enough to understand and cooperate a little more.

I also learned last week that we were approved for coverage through the Ohio Health Department's Bureau for Children with Medical Handicaps. We were on the diagnostic program, but that is only six months and was set to run out on the 19th. We are now on the treatment program and will have to reapply for renewal every twelve months. This coverage picks up what the health insurance doesn't and means no more co pays for doctor's visits or prescriptions and no more bills for the 20% of labs and other procedures my insurance doesn't cover. I have incredibly generous health insurance benefits, but those little bits add up when dealing with a condition like JRA. I will take whatever help I can get. I also feel a little more relieved because it means we are in a better position to continue Robby's treatments if I should lose my job or something similar. Relief, relief, relief.

If you are a JRA parent, please make sure you check into these types of resources. If you aren't sure what is available where you live, reach out to your local chapter of the Arthritis Foundation and they will help you. Our local chapter is a great resource. I actually decided to start doing volunteer work with them to help me overcome some of the helplessness I was feeling in dealing with this disease. My first event was called Wine and Dine which took place on September 3rd. It was a great wine tasting event with food from local restaurants and a silent auction. I worked an auction table and I was really happy with the bids I was able to secure for the items. Here in a couple of weeks, I will attend a kick off meeting for December's Jingle Bell Run. I plan to be a team captain for the event. My goal is to recruit 20 team members and raise $2000 as a team. We'll see how we do. The volunteer work helps me to feel like I am actually doing something to help my son and other kids with JRA. I am also hoping to eventually meet some JRA parents as I think that would be great for me as well. Every time I hear about or see a teen with JRA who is living a fairly normal life, it makes it that much easier for me to hold onto some hope for my little guy. At the end of the day, hope is the best medicine.

Wednesday, September 2, 2009

Just When I Thought It Safe...

So much for injection getting easier. Tonight was supposed to be Right Arm night. The original hold CK had Robby in made his arm too tight to his body for me to get a good pinch to put the needle in so I asked him to adjust. Robby was pretty worked up and as soon as the needle went in, he tried to pull away and it popped back out. A fat drop of blood welled up and I just stood there feeling dumb. I wasn't sure what to do. I hadn't really had a chance to administer any of the medicine. I wasn't sure if I could re-inject with the same needle. In my haze, I laid the syringe down and the needle made contact with the table. Well at least that settled that...a new dose had to be drawn up. Of course now that Robby knew what was up he screamed the whole time I was prepping the new dose. I mean he really screamed--like we were beating him or something. The windows were open and I became absolutely certain someone was going to call the cops or children services or someone. I would have welcomed either one if they were willing to give him the shot...(sigh). We decided arms are just too hard and we are going to have to figure out how to get by with just thighs for awhile. At least until he quits fighting us.

I was able to inject in the right thigh with minimal fuss aside from a massive amount of crying. The sticker trick worked again to calm him down. Once he was situated and reading a book with CK, I had to leave the room. I was too shaken up. I went in my room and felt like I was going to cry but I laid down on the bed for a minute and it passed. I came back out and held Robby for a little while and read him a book. Then it was time to get ready for bed.

What an evening.

Monday, August 31, 2009

It's getting easier...

The Kineret injections are getting easier as we go. Mainly, we are developing a routine which helps us all adjust to this new aspect of our lives. The rundown:

While we are preparing dinner, we lay the Kineret syringe out on the counter so it can come to room temperature. The literature says it can be at room temperature for up to twelve hours. Ours ends up being out for about two at the most. When it is time to prep the injection, one of us will take Robby into the living room and read him a book. The other will get the injection ready out of sight in the kitchen. The key is to minimize what he sees ahead of time so he has as little time to anticipate and be anxious as possible. Once we start to take him to the table he knows what is happening and starts to say "No!" and cry. It's not as bad as before though. He cries pretty loudly while he is getting the shot, but he is really interested in the Spider Man band-aid so that is step one of the distraction. We also bought a notebook with Cars characters on the cover and some stickers. Once the shot is over, he gets to pick out a sticker and put it in the notebook. Tonight he was done crying by the time the sticker was placed in the notebook. Pretty big improvement over where we started.

It is getting easier for me, too. The very first time I injected him, I felt queasy leading up to it. I felt very calm during--but as soon as I was finished I started to shake. The second time I didn't get that sick feeling before, just the shakes after. Now I am fine. Seeing him recover quickly helps. So does seeing how much the Kineret seems to be helping him already. I really feel in my heart like we are doing the right thing.

Friday, August 28, 2009

We did it!

Yesterday was the big day. My husband and I went into Children's to get our education on giving Robby the Kineret injections. I was a little surprised when the nurse told me that we would be giving him his first injection, but it made sense that she needed to see us do it to make sure we were placing it properly and that we could actually go through with it. I decided to give him the first shot. After all of the instructions and practice, I drew up the dose, CK (my husband) got Robby in the hold like the nurse instructed, and Robby started to cry a little. I counted to three and poked him with the needle. I was a little surprised at how easily it went into his skin. The only thing I need to do differently is to push the plunger down faster. I was a little slow with it (thinking the medicine might not sting as badly if I didn't push it in fast) and he started to squirm a bit which creates potential for the needle to pop out of his skin or injure him. So I will go faster next time. As soon as I set the empty syringe down, I started to shake--but I was relieved that it wasn't as bad as I thought it would be. We can do this! I know in a few short weeks it will all seem routine and not a big deal at all. I am also happy to report there is zero injection site reaction so far. All I could see this morning was a tiny pink dot where he got poked. Fingers crossed that this stays the case.

I started telling Robby on Wednesday that we were going to the doctor the next day to get a new medicine that would make his knees feel better. He was really excited. I waited until Thursday morning to tell him it was going to be a shot. He kind of frowned, but I told him it would be a little shot and he seemed OK. Last night he was talking to me about how the shot hurt and I finally decided to tell him we would have to do it every day. He was upset about it, but I reminded him that this was to make his knees better so he can walk around and play. I told him it was a little scary for me too, but we needed to be really brave for each other. He sighed a little and then smiled at me and said, "OK, mommy. I be brave." My heart ached that a two year old has to deal with these things. I am so proud of him though. He has handled everything so well. We plan to get him his own special calendar and stickers so that he can put a sticker in the box after each shot. He seems to really like the stickers they give him at the hospital, so I think this will help. Plus picking one out will give him something immediate to take his mind off of the shot he just received.

I know it has to be too soon for the medicine to be working, but he was able to walk right after waking up this morning. I think it's because he had ice packs yesterday afternoon and a bath before bedtime. I also think maybe all the talk about how this new medicine is going to make him better has him believing it is (or at least will) and he is brave enough to try even through the pain. It was kind of amusing last night--his toys were everywhere! I wasn't used to it after these days of his not being able to walk and not really playing. CK said he was happy that Robby was well enough to make a mess. I agree!

Wednesday, August 26, 2009

Why Us?

I am over the moon this morning. Last night I was feeling a lot of despair and frustration after going through a day of Robby not being able to walk. I was having trouble sleeping last night and felt like all of my coping mechanisms were broken. I finally remembered to do what I should have done in the first place--pray! I prayed for a little bit of something. One positive thing to help us get through this. That's all I needed. Well, this morning Robby was able to walk again. It's stiff and very wobbly and I can tell it hurts, but he's doing it. He was so excited! He wobbled across the living room to his toy box and he smiled at me and said, "Look, I'm doing it by myself!" Words can't explain the joy that came from those dozen or so stiff legged steps. I am so grateful. I explained to him that he has to keep trying really hard to walk even though it hurts because it will help his legs feel better. He seemed to understand and he told me, "OK, mommy. I try really hard." What a sweet boy.

On the drive to work this morning, I was thinking a lot about how things were early on and I have something I want to share. My hope is that it will help someone who is going through this. When we initially got the diagnosis, I was overcome with relief. There were moments where I feared we were dealing with something worse than JRA--something potentially terminal like leukemia. It was a huge relief to finally have a name for his illness and to learn it was "only arthritis." As the reality of living with JRA set in, and I learned more about what the long term picture might look like, relief gave way to a mixture of anger and grief. I had to mourn my previously healthy son. I had to consider the possibility that he might never be able to do certain things and that he might be in some amount of pain every day for the rest of his life. I had to accept that our new life was one of doctor's visits, blood draws, and constant vigilance. I can still remember the day Dr. H. handed me a pamphlet from the state's Bureau for Children with Medical Handicaps. My initial reaction was, "This isn't my kid!" Later that night I read through the materials and I realized this was my reality. This was my kid now. That was the first time I can remember thinking, "Why is this happening to us?"

I was angry and I wanted some explanation for why this should happen to my easy going sweet boy. Why should this happen to our family? The first phase of an answer was, "Why not us?" I came to realize that nobody deserves these things, but they happen. We aren't special or somehow immune against disaster. I finally embraced the idea that God doesn't promise life will be easy and bad things will never happen, only that we won't be alone when we go through the hard times. This got me through for a little while, but at some point it wasn't enough.

The real breakthrough came for me when I realized this was happening because I can handle it. I have overcome some really deep dark pits of adversity in my life and am as strong as they come. I also have the resources to provide the care that is needed (financial, insurance, generous leave benefits from my job, etc.). I have the ability to research and learn about my son's condition so that I can better help him. I also am a fighter and know I will be able to stand in the gap and be an advocate for my son whenever it might be needed.

I even found myself, for the first time ever, thanking God and praising Him for my experiences dealing with my own illness. For two years I've struggled with ulcerative colitis. It's pretty well under control for the time being, but I feel I have an understanding of pain, and the cyclical and unpredictable nature of chronic illness, that a lot of people who have never dealt with it first hand can't have. I know what it takes to keep living your daily life inspite of pain and disease. I know the determination that is required. I also know the courage it takes to even try. That is why I consider one of my greatest responsibilities to be teaching Robby how to live with this disease and still have as full a life as possible. I have to give him the confidence to try as hard as he can despite the pain. The doctors can give him the treatment and drugs--but it is up to me to give him the guts to deal with all of this. In the moments where my head is on straight and I can see these things clearly, I realize what an honor and privilege it is to be entrusted with this little boy who needs so much. I try to cling to this when I am in the dark moments. It's not always easy, but the light does come eventually.

Tuesday, August 25, 2009

What next?

The kineret arrived and is safely stored in the refrigerator. It turns out Robby needed to have a chest x-ray and TB test before he can start the kineret. I took him in for those this morning. The TB test needs 48 hours to develop, so we will have our injection training on Thursday morning and he will receive his first dose then. I hope with all my heart that it works well and quickly. I know it can take a month, or maybe longer, but I pray we'll see good results as quickly as possible.

"I can't walk. I can't walk." was the phrase that just about ripped my heart out this evening. Robby spent the day refusing to take more than two or three steps, if any. He would just give up and try to sit down on the floor. The pain has to be pretty great because he would start to cry and try to grab onto something as soon as I would stand him up. Also, he wouldn't even walk or stand to play with the other kids at the baby sitter's house today which definitely means he was feeling really bad. Usually he can get distracted enough with play to get around at least a little bit. My emotions are all over the place. I feel so sorry for him and upset that he has to feel like this. It is also very frustrating and draining taking care of him when he can't stand or walk. He is 34 pounds now so carrying him is no small task. It also makes all the little things like changing clothes or getting in the car complicated. I alternate between hope that the kineret will work quickly and fear that he'll be like this long term. How will I take care of him if he can't walk? I know people do it all the time, but I wasn't mentally prepared for him to be disabled to the point of impaired mobility.

It seems I keep reaching the point where I feel I can't take anymore. Then I take a deep breath, square my shoulders, and realize I have an important job to do. I soldier through with plenty of prayer and help from my husband and other family and friends to encourage me. Then something else happens and I find myself all crumpled up and back at square one again. I keep wondering what else can happen and I dread ever knowing the answer.

Monday, August 24, 2009


The kineret will be delivered tomorrow. I don't know how they did it, but the wonderful folks at Dr. H's office made this happen so fast. They really are amazing. I just need to get in touch with them this afternoon to find out when we can go in to get our instructions on giving the injections. Thank God for small miracles!

Time Marches On...

Robby was really having a rough time again this morning. He got out of bed and did the same two or three steps and then crying thing. After I got him past the initial waking up, I made him walk on his own as much as possible. I know it hurts, but I think mobility is the best thing for him right now. I did notice he was getting around more easily the more he walked, so I think I made the right choice.

I talked to the rheum nurse this morning about the prior authorization situation for the kineret. She said the doctor filled it out and they sent it to the case review unit at the insurance company on Friday. She was going to call today to follow up on it. I let her know that he is in a lot of pain and it's getting worse pretty rapidly so if this was going to take much longer I wanted to explore some other option. She seemed to think it shouldn't take long so I am willing to wait and see. I just don't feel like the little guy has a lot of time here--the pain is escalating at a really rapid pace. The way she explained it to me is this is just a paper the doctor fills out explaining why this medication is medically necessary. She seems confident it will be approved. I hope she is right. I hate this battling the insurance part of the equation.

Sunday, August 23, 2009

In the Beginning...

Only five months have passed since Robby was diagnosed with systemic onset JRA, yet sometimes it feels like we've been dealing with this disease for years now. At some point I will have to go back and recap all the events that led us here, but for now I want to focus on where we are today.

When he was diagnosed in March, Robby didn't seem to have any joint specific symptoms outside of having general aches when the fever and rash were active along with some stiffness in his hips at these times. We started treatment with Naproxen (4.2 ml twice a day). In June Dr. H mentioned concern with his knees being "puffy" but it's been hard to tell if this was due to arthritis involvement or just "baby chub." We finally decided to do an ultrasound on both knees which took place on August 10th.

All of the technicians, doctors, and nurses I've worked with at Nationwide Children's Hospital have been a wonderful godsend and this ultrasound technician was no exception. Robby cried upon entering the room--I suspect he thought he was there for labs--but some reassurance, a chance to check out the u/s wand, and a Blue's Clues video soon set him at ease. I wish I could say the same about myself. Even with my lack of education in this area, I could tell from the u/s pictures on the screen there were sizable pockets of fluid on both knees. The arthritis was active in both joints. I had no idea what it would mean for us in terms of treatment, but I knew this was not a positive direction.

Dr. H. called at 9:30 p.m. the next night to confirm what I suspected--both knees were actively involved and we needed to step up treatment. I was offered a choice between a combination of prednisone and weekly methotrexate injections or daily injections of kineret. I was devastated at the idea of having to give such a young child these powerful medications. I asked her for some time to think it over and promised to call the office the next day. I spent the rest of the evening pouring over whatever information I could find online about side effects, success rates, and patient testimonies. I was really fearful of the methotrexate and prednisone side effects, so I called the next day and asked that Robby be started on kineret.

On August 14th we set off for a week's vacation in Nags Head, NC. It was so nice to get away even though I spent more time that week than I care to admit to worrying about starting the injections when we returned home. There were a couple of evenings throughout the week when Robby would feel warm and I would find his temperature was around 100. A dose of Tylenol seemed to take care of things and overall he seemed to be in good spirits. He really enjoyed the sand and the ocean and it was nice to see him playing so much and having a good time. We started the trip home on Friday August 21st which marked the beginning of the decline Robby is currently in.

We broke the car ride up over two days for both trips to try to minimize the amount of continuous sitting in the car seat. Just before stopping for the evening Friday night, Robby was very whiny in the car seat with a lot of squirming and complaining that his "butt hurt" (meaning his hips). He seemed to perk up a bit in the hotel room and enjoyed sitting on the big beds and watching television. Throughout the night though I woke up to him whimpering or crying. A couple of times he actually woke up crying for me and I had to pat him and sit with him to get him back to sleep. I wasn't sure if he was in pain or if it was just a matter of sleeping in a strange place. The next morning he seemed to be okay except for being very clingy and some whining.

During the second day's car ride, he became uncomfortable much more quickly. We made some extra stops to let him out of the car seat and I noticed he was reluctant to walk much at all and wanted carried most of the time. By the time we made it home, he was noticeably limping and seemed very uncomfortable/moody and clingy. He did not want to walk much at all and his knees were looking larger and felt warm to the touch. I decided to try the heating pad and it seemed to calm him and provide some relief. During the night I heard more whimpering and crying from him even though he was sleeping in his own familiar bed. I was beginning to believe he was experiencing enough pain during the night that it was disturbing his sleep.

This morning when he woke up I got him out of bed and had him stand up on the floor. He took about two wobbly steps and burst into tears with his arms up for me to carry him. This went on for the first couple of hours of the day and he remained somewhat reluctant to walk unless he was really distracted with playing. We went through a similar cycle after his nap and again in the evening. He finally asked for the heating pad which really surprised me. Perhaps it does help relieve the worst of the pain? At bedtime he tried to lay down in his usual position on his stomach with his head to the side and each time he did he would cry and pick it back up telling me his head hurt. I took his temperature and it was 101 so I gave him some Tylenol and had him try laying on his back. That seemed more comfortable and he was able to fall asleep.

I am at a loss at this point. He seems to be declining rapidly with more and more pain as each day passes. To add to my worry--I received a call on Friday from the pharmacy company advising they need prior authorization for the kineret. They sent forms to Dr. H's office. I have no idea what this means. She warned me that the insurance company might not want to cover the kineret because it wasn't FDA approved for children yet and he hadn't failed at least one second line therapy (like mtx). I have to call the office tomorrow morning to talk over options as I'm not comfortable letting him go on like this while they sort out the red tape. He needs some relief as quickly as possible. I can't stand seeing him in pain like this and it scares me when I let myself wonder how much of this damage might be permanent.