Yesterday marked one full week of the new treatment plan- Prednisone and Methotrexate. So far, we have seen limited to no improvement. Today was one of the worst days with Isabel being so tired and miserable that we could not stay for worship service. Isabel attended her confirmation class and the rest of us attended Sunday School classes, but after the end of that 1 1/2 hours, Isabel was just not up for anything else. And it was obvious to all who saw her.
As we were driving home, we encountered the first snow of the season- good sized flakes, but not much accumulation. Phoebe, Tessa and Liam could barely contain their excitement and the minute we pulled into our driveway, they jumped out and ran around the yard trying to catch snow on their tongues and scrapping what little snow they could from some stumps in the front yard. Isabel never said a word, she just went inside. When I joined her, she was looking out the window longingly and when I asked her if she was ok, she burst into tears. She wanted to be excited about the snow but was in so much pain, she couldn't enjoy it.
In general, it has been a rough few days. When we did her methotrexate shot last night, she said it hurt each time I tried to break the skin with the needle, she cried out in pain. I probably should have just pushed a little harder, but I gave up and called in Tim to give the shot. I just couldn't bear to cause her pain and was certain I was doing something wrong.
This morning was worse. We made the mistake of leisurely starting our morning, not waking up the kiddos right away. Big mistake... we should have woke Isabel up early to take a warm bath as she was pretty stiff this morning. It was pretty much a snowball from there- the pain and stiffness were ahead of us. When we got home from church, I had Isabel take a warm bath and try some yoga. She really just wanted to lay around and do nothing. But the book says I need to encourage her to keep moving, loosen up the joints. And of course, since Tim is not reading the book yet, he was inclined to let her sit on the couch while I was pushing her to do some yoga. I'm finding that I don't know how to determine the balance between coddling her, helping her and being empathetic.
Right now, I know that I just have to keep swimming- learning about this disease and how to make daily life better for my child.
Sunday, November 21, 2010
Sunday, November 14, 2010
A New Treatment Plan
Just shy of a month after Isabel's diagnosis, she began having pain in her joints that were severe enough to wake her from a sound sleep. When she would wake, she'd be up for hours, falling asleep after she was finally too exhausted to do anything else. We called the doctor and they moved up her appointment from November 23 to November 12. Tim and I felt so helpless, missing the days when a kiss actually did make it feel better.
With her appointment being moved up by almost 2 weeks, I had to accelerate my research and reading. I wanted to be prepared for anything the doctor may suggest. I didn't want to wait while I read up on the treatment and most of all, I didn't want to panic in front of Isabel. In the last 1 1/2 weeks, I've felt like I was back in school studying for a midterm exam- reading about traditional treatments, types of arthritis, relief therapies, etc.
It's hard to take it all in. I find myself asking if it is somehow my fault. I was so faithful about what foods I ate while pregnant, following the Brewer's Diet so faithfully (everything but the liver). Did I not eat the right things when I was pregnant? Did that craving for gummy peach rings somehow harm Isabel before she even left my womb? Did I let my own aversion to fish keep her from eating a food that could have potentially prevented her from getting arthritis? Each day seems to bring more questions than answers and I find that I don't have the luxury of feeling sorry for myself, I just have to focus on making things better for Isabel while also not making our other three children feel like they aren't equally important.
Her appointment at Children's Hospital started as her first appointment did. She saw a fellow and then her regular doctor- 45-60 minutes worth of examinations and questions. Which based on my research is probably 3-4 times longer than most appointments, so we are thankful to have such a thorough and watchful medical team. At the end of the appointment, the doctor recommended that Isabel begin taking Methotrexate injections. As well prepared as I thought I was, it was still like someone had dropped a bomb in the middle of the room and our life had just exploded. Isabel accepted the news so matter of factly, I just followed her lead. After another hour or so, we were briefed on how to do the injections, Isabel practiced drawing the meds into the needle using a syringe and what I guess was some kind of saline solution. Then, when the nurse told us that they have us practice giving the injection on one of them, I wanted to pass out on the spot. Isabel didn't feel ready to go that far so I did it. Tim has done injections before as part of first aid certifications. When I did my first aid training, I had to learn about Epi pens and that was enough to make sick to my stomach. But, somehow, I managed to give the nurse the shot and she said I did a pretty good job. For Isabel's sake, I prayed she wasn't lying.
At the end of the appointment, we had the prescription for the methotrexate, one for prednisone (to provide some near term relief), one for folic acid, and one for lansoprazole. Additionally, we added a daily calcium and vitamin D supplement. All of this on top of the piroxicam she was already taking. So many pills.
Last night, we officially survived our first injection. Liam and Tessa insisted on watching. Tessa held Isabel's hand. Liam kept watch. At the end, Liam told Isabel that she did a good job and was brave, he then rushed out to tell Tim how brave Isabel was during her shot. Tessa was empathetic and started to cry.
Isabel has not complained about anything other than the taste of her medications. The prednisone has increased her appetite, probably a good thing since she has not had a strong desire to eat. Though she may eat us out of house and home before it is over. Her next visit to Children's is on November 23- physical and possibly occupational therapy, then a visit with her rhuematologist in 6 weeks. Plus blood work in between and her first ophthalmologist appointment will be scheduled.
And, in between all that, we wait and pray that something brings her relief from the pain. Please keep us and other families struggling with chronic illness in a child in your prayers.
Charity
With her appointment being moved up by almost 2 weeks, I had to accelerate my research and reading. I wanted to be prepared for anything the doctor may suggest. I didn't want to wait while I read up on the treatment and most of all, I didn't want to panic in front of Isabel. In the last 1 1/2 weeks, I've felt like I was back in school studying for a midterm exam- reading about traditional treatments, types of arthritis, relief therapies, etc.
It's hard to take it all in. I find myself asking if it is somehow my fault. I was so faithful about what foods I ate while pregnant, following the Brewer's Diet so faithfully (everything but the liver). Did I not eat the right things when I was pregnant? Did that craving for gummy peach rings somehow harm Isabel before she even left my womb? Did I let my own aversion to fish keep her from eating a food that could have potentially prevented her from getting arthritis? Each day seems to bring more questions than answers and I find that I don't have the luxury of feeling sorry for myself, I just have to focus on making things better for Isabel while also not making our other three children feel like they aren't equally important.
Her appointment at Children's Hospital started as her first appointment did. She saw a fellow and then her regular doctor- 45-60 minutes worth of examinations and questions. Which based on my research is probably 3-4 times longer than most appointments, so we are thankful to have such a thorough and watchful medical team. At the end of the appointment, the doctor recommended that Isabel begin taking Methotrexate injections. As well prepared as I thought I was, it was still like someone had dropped a bomb in the middle of the room and our life had just exploded. Isabel accepted the news so matter of factly, I just followed her lead. After another hour or so, we were briefed on how to do the injections, Isabel practiced drawing the meds into the needle using a syringe and what I guess was some kind of saline solution. Then, when the nurse told us that they have us practice giving the injection on one of them, I wanted to pass out on the spot. Isabel didn't feel ready to go that far so I did it. Tim has done injections before as part of first aid certifications. When I did my first aid training, I had to learn about Epi pens and that was enough to make sick to my stomach. But, somehow, I managed to give the nurse the shot and she said I did a pretty good job. For Isabel's sake, I prayed she wasn't lying.
At the end of the appointment, we had the prescription for the methotrexate, one for prednisone (to provide some near term relief), one for folic acid, and one for lansoprazole. Additionally, we added a daily calcium and vitamin D supplement. All of this on top of the piroxicam she was already taking. So many pills.
Last night, we officially survived our first injection. Liam and Tessa insisted on watching. Tessa held Isabel's hand. Liam kept watch. At the end, Liam told Isabel that she did a good job and was brave, he then rushed out to tell Tim how brave Isabel was during her shot. Tessa was empathetic and started to cry.
Isabel has not complained about anything other than the taste of her medications. The prednisone has increased her appetite, probably a good thing since she has not had a strong desire to eat. Though she may eat us out of house and home before it is over. Her next visit to Children's is on November 23- physical and possibly occupational therapy, then a visit with her rhuematologist in 6 weeks. Plus blood work in between and her first ophthalmologist appointment will be scheduled.
And, in between all that, we wait and pray that something brings her relief from the pain. Please keep us and other families struggling with chronic illness in a child in your prayers.
Charity
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