When we got Jenna's panniculitis diagnosis it was learning how to deal with another new medical condition. At the time of her biopsy she only had the one spot on her abdomen. It had become large and painful to touch. She was having a hard time getting comfortable in any position. What we did not realize was that the spot on her abdomen was actually the second spot. She had this spot that looked just like a bruise on her left thigh. That spot had been there since the beginning of Jan 2010 and I just thought that it was a bruise from something that she hit. Now you would think by now I would be use to jumping through hoops to find answers...turns out that this is such a rare condition that it is even harder to fine info than her Dermatomyositis. Why did this child have to be dealing with this issue? She was doing so well, and her Dermatomyositis was controlled. Our treament would soon begin again. It had been a while since we were getting IV treatment. We started back on IV solumedrol every 10days in March 2010. By the end of March Jenna had started to develop myofascial pain in her back. I could not touch her...this was painful even with a gentle touch. We were now into the month of April and Jenna was still having some real issues. She had developed more panniculitis spots, mostly on her legs. She had 2 on each leg plus the one that she had on her abdomen for a total of 5!!! Now we had started another new treatment IVIG and were told to make an appointment with a Doctor at Boston Childrens hospital. This was all too much for me to digest. What was happening to my baby girl, when were we going to get answers, when would she start to feel better, when would I find a Doctor that could answer all of my questions?
The school year was coming to an end and it would be Jenna's last year in elementary school. All the kids were getting excitied for the end of the year activities and looking forward to their field trip to Disney's Epcot. Now I am the biggest Disney fan out there and I had made sure that Jenna never took a trip to Epcot because I wanted her 5th grade field trip to be special to her, something that she would remember forever. Jenna would end up not being able to go on that field trip due to her feeling so badly. She had been so excited, but when we sat down to discuss going on the trip she did tell me that she would be unable to make the whole day without taking a nap. Not to mention the fact that it would be almost 100 degrees and there would be lots of sun. Not a good thing for a child that has dermatomyositis. This broke my heart that she would be unable to go. She actually took it better than I did...saying "Mom, we can go anytime once I feel better, plus I would have more fun with you anyways" I tell you that kid is so special. She was only staying in school for half days and was coming home and spending the other half sleeping. She was taking a high dose of oral steriods...30mg per day and was getting the IV solumedrol every 2 weeks, IVIG every 3 weeks. With all of this medication one would think that she would be getting better...not the case. She was getting more panniculitis spots. I would just shake my head and wonder how was all of this happening?
The one positive thing that did happen to Jenna was she got accepted to go to Camp Boggy Creek in June 2010. This is the greatest camp for kids that have an illness. It is a place that they get to go where there are other kids that have similar medical issues. She was so happy that she would be going. I think that she had her stuffed packed a week before camp LOL. The day she got home from camp she would go right back into the hospital. Another IVIG treatment. What a way to end the week. She had a great week, but was very tired and needed to catch up on her rest. She had started to develope more of the "spots" nobody could understand it. We had made our appointment in Boston and now we were just waiting. We were now into mid July and still not getting any better despite all of the medications that she was taking. The Doctor had said that he was going to stop all IV treatments because they were just not working. It is crazy when you don't know what you are dealing with. I thought to myself..."I guess I am going to have to just trust in what the Doctor is telling me". Things stayed pretty much the same for the next few weeks, but we had to get her appointment moved up in Boston. We had an appointment at Boston Childrens Hospital with a wonderful Doctor on Aug 9th 2010. Going into this was making me a bit nervous, we were in a new area with a new Doctor...I felt like it was the first day of school and I needed to make sure that I had all the important things that one would need...a pen, paper, and Jenna's medical records for the past 6 years! LOL. I was so organized I had it all together, I had all my questions typed up and numbered so that he would answer the impotant ones first. He came in and made me feel at ease. He continued to talk about Jenna's dermatomyositis and felt that yes, her JDM was under control, but this panniculitis issue was another ball game. He then told us that this is also a very rare condition...not even 30 cases of this and that is what makes this part of her disease so hard to treat. Different patients respond to medications differently, so what may work for one may not work for another. He suggested that we start to tapper off on her oral steriods and take things away one at a time and then introduce them again one at a time so we know what is working. It made sense when I thought about it. She had been on 4 different medications so how do we know what is working? That would be good in theory, but we would soon learn that wouldn't fly with Jenna.
We came home from Boston feeling positive, like we had gotten the answers that we were looking for. We were waiting for her Doctor here in Florida to get back to us and give us the go-a-head to start dropping the oral steriods and drop some of the other meds that she was taking. She had missed the first week of school due to out trip to Boston so she was very happy to get back so she could see her friends. The first day was hard for her, she came home crying and saying that she was so tired. This was the first time she had been out for that length of time and I could see that it had really taken its toll on her physically. The next few days would be pretty much the same...Tues: TIRED, Wed: TIRED, Thurs: EXHAUSED!!!! She was so tired she could just about take a shower. I had not heard from her Rheumatologist and we had been home almost a week. I placed another call that Thusday afternoon and got nothing... by 4:30, with the weekend upon us I had no other choice than to call her pediatrician her in town. He called me back about an hour later and asked me what was going on. I explained everything and he has said, why don't you bring her in to the office in the morning. I agreed that would be a good thing to do, so that was the plan.
Now I know you other Moms out there with be able to relate to this...Jenna came into my room on that Friday and was trying to show me her legs...her words to me..."mommy, wake up you need to see my legs"...Me (asleep) laying in bed..."ok Jenna just go get dressed, I'll be up in a minute". I did get out of bed and was doing the usually run around for a school day...lunches, backpacks together, breakfast...Jenna had never said another word to me about her legs. Oh, and I have no memory of her coming into my room in panic trying to talk to me while I was sleeping...this would be something I would find out later in the day...much to my suprise! As we were getting ready to walk out the door Jenna did say to me that her legs were hurting, my response was, "Jenna, I know your tired, I will be at the school in 2 hours to pick you up to go see the Doctor". Ok so off she went. I got myself ready and took care of a few more things before I left to go pick her up. When I got to the school she came out and was having a really hard time walking. I asked what was going on she said.." I don't know, but my legs hurt and they feel like they are burning". The distance between the school and the Doctors office was not more than 15 minutes. By the time we got to his office she could not even get out of the car, I had to help her. I just didn't understand this. We got back into the room and while we were waiting for the Doctor to come in Jenna was undressing and putting a gown on. As she is doing this I am in shock at what I am looking at! Her panniculitis spots that had looked like bruises...they were now bright RED and swollen and raised like they had NEVER been before. You can just imagine how bad I felt that I was sleeping when she was trying to tell me all of this at 6am!!!! I got so upset and felt so bad that I had sent her to school. We were at the right place. Our Doctor did some labs and got on the phone to her Rheumatologist at All Childrens hospital. I think you all know what was to come of all this...I had left his office and was going home and by the time I gave her lunch and got home things had gotten ever worse. The spots were bigger and hotter and just as red as they could be. I pack my bags and of the the hospital we went. ER here we come...I will continue this on the next blog.
No comments:
Post a Comment