On Aug. 20th we took Jenna to All Childrens hospital ER. We had not even been home from Boston a week and we were right back in the frying pan. I had never seen these spots turn so quickly before and it had me very concerned. She was feeling so badly and was so tired. Here I was thinking that we had gotten a bit of good news from the Doctors in Boston, but there we sat waiting for yet another Doctor to come in and gives us his/her opinion. I think that I should of gone to medical school with everything that I have been through with my two kids...it sure would of made my life a bit easier. LOL. We were seen by a few Doctors that evening and they were all so interested in what Jenna had...I'm sure they'll never see it again. She is one of the few patients that has this panniculitis complication and from what we have learned to date...there are not even 30 cases in the country. They did admit her that evening and started her on IV treatment...1000 mg of solumedrol and then the IVIG would start. The IVIG is given very slowly so that there are less side effects and it takes about 13 hours for that to run ( 6 big glass bottles) Once we were in our room the Doctors kept coming in to examine Jenna. I was so suprised at the number of them that came in and out that night. We had seen two ER Physician and one resident before going up to her room. Once there we had visits from a couple more residents and the hospitalist. The next morning we saw another resident and the Pediatrician that was on call, then her Rheumatologist came in and he had a resident with him. I can never say that we didn't get attention from the staff that night. It was no suprise to learn that her labs were all out of wack. The Sed rate was even more elevated than before, the crp had gone up and vonwillebrand factor Ag was high as well. Her Doctor spend alot of time answering my questions and went over her "new" treatment plan. We would be going back on all IV meds (IV solumedrol & IVIG) he would increase her cellcept dose from 1000mg to 1500mg per day, the prednisone would stay at 15 mg per day, naproxen would be 750mg per day along with the lansoprazole 30 mg per day, fluoxetine 40 mg per day, calcium, and vitamin D. We were back where we had basically started from. It is like taking 3 giant steps forward and 10 back. It has taken it's toll on me, I can't even begin to think about how she feels. Never feeling good, never having the energy to just be a kid. This was the point that we also decided to do homebound schooling. The Doctor thought that it would do her some good to get the rest in the hopes that it would help her get better. After everything that this kid has been through she still has the ability to laugh. While we were waiting for the nurse to get her discharge papers together, I noticed that Jenna was playing with her IV...well, what I thought was playing. Actually, she was removing her IV! I was so suprised & I think that the nurse felt the same way, she said to Jenna could I check to make sure you got the whole thing out. Sure enough she had taken that IV out and had cleaned the arm and put a band-aid on it. Kids do the craziest things sometimes.
The next two weeks would be about Jenna resting. We went back on Sept 3rd to get her Iv solumedrol treatment and have her labs done again. I knew that she had been a bit better and her panniculitis spots were looking better than they had the week before. I guess when they say..."never judge a book by its cover" they are right because when we got her labs they were higher than they had been the night of our ER/hospital stay. How could that be? They had increased all of her meds what were we going to do now? Her Doctor came over and saw her while she was in the infusion center and had said to just keep the meds at the dose that they were at until our appointment with him. I sit and watch Jenna and she just amazes me the way that she acts and the way that she speaks to adults. There are no better patients than kids. They don't hold anything back, they tell it like it is, and they are not afraid of being wrong. She has the best nurse ever at the infusion center. They have beome such good buddies. I am sure that her job is not fun all the time due to the amount of sick kids that she sees, but I know that she has a very rewarding job, you can see it in the kids eyes when she walks into the room. Jenna has had a rough road but I can at least be thankful that we have the medical staff that we have, they are all wonderful. The home schooling is turning out to be a good decision on Jenna's part. She has a wonderful teacher and she is getting all A's. She works well one on one. Sometimes in a large group of kids she lets her mind go and doesn't focus on what the topic is or what they are working on. I hope that maybe by the end of Oct. she wil be able to at least go to school 2 days a week. I know that she misses her friends and the social part of going to school. Most days she is too tired to really care, but I know that if she had the choice she would be there in a heart beat.
We had to go back on Sept. 15th for another infusion and to see her Doctor. Her infusion went well and they did another set of lab work. We had our appointment with her Rheumatologist and again he decided to change her meds...again! Now he has taken away the cellcept and the IVIG and is going to start to lower the oral steriods dose...WHY??? her labs were so screwed up two weeks prior, why would he do this? She has no new spots at this time, just the same 12 or so that she has had for the past few months. This is the part that drives me crazy. Not that I want her to be on all of those horrible meds, but the last time he took some of her meds away, we ended up in a crisis and had to be admitted to the hospital. I am not a Doctor, but I am her mother and I spend every second of every day with my child and I know when she feels good and when she feels bad. We are going to have to see where she is in a few weeks and I can't wait to see what the labs showed. That will be the most interesting to me. If things are up, then who knows where we go from here. The biggest problem I think in treating this panniculitis is that it is so rare and patients don't respond the same way to treatment. I just have to have faith that things are going to start to get better for Jenna and that she gets to feeling better soon. I am now up to date with her current treatment. I hope that I have not confused any of you. To my JM family...I don't know where I would be without you all. I am so happy that you came into my life so that we can share our stories with each other. Nobody could ever get through this alone. We all wish for the day that we can find a cure so that no child has to suffer. To my family and friends that have been there for me...Thank you. I know that there have been times that I just breakdown and cry...thank you for listening to me and being my support. I will keep you all posted and up to date. Until next time...please remember that life is very short and we are here for only a short time. Remember that PEOPLE are the #1 thing in our lives, they are the ones that get us through the bad times, the sad times, the happy times, and the good times!!!!
Jenna 12 yrs old
Saturday, September 18, 2010
Thursday, September 16, 2010
The Panniculitis diagnosis...
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.
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.
Wednesday, September 8, 2010
The First 5 years in a nut shell.
The first 5 years after Jenna's diagnosis would be some of the hardest years in my life. When you first get a diagnosis from the Doctors it is like learning a secord language and after hearing that she had Dermatomyositis it might have been a little easier to learn a second language! The first week she spent in the hopital they pumped her full of steriods! In the months to come I would see the physical & emotional changes that these drugs would do to her. She had to have physical therapy and occupational therapy for the first year after her diagnosis to help her strengthen her weak muscles. Thank God we knew a good PT because I knew that Jenna would be in good hands with Michele. Michele had been Jordan's PT for years prior to Jenna getting sick. The first few months I found it hard to even get out of bed. I would say to myself..."WHY" all the time. Why did it have to be my daughter? Why did I have to be dealing with this? Kids are only kids for such a short time and spending that time in a hospital or a Doctors office is no day at the beach. By the spring of 2005 she was still taking her oral steriods, prilosec, tums, taking plaquenil for the rash on her skin and getting IV solumedrol treatments and now we were taking on a new drug...Methotrexate.
It is so sad to see your child so sick. There were days when she could not even get out of bed. We were told by her nurse that she qualified for a wish from the Make-A-Wish Foundation in May of 2005. My reaction to that was..."she qualifies for a wish?...does this mean that she is going to die?" It was at that point that this illness had hit me. None of us know what our future holds, but I know that I was not wanting my future to be without my daughter. She was so blown up from all the steriods that she was having some pulmonary issues. We had to see a pulmonologist and have a PFT test, a sleep study and a CT scan of her lungs done...Results...more meds! Advair, albuterol and singulair on top of what she was already taking! She did have some improvement with breathing and her coughing was now under control.
The summer of 2005 would be full of so many emotions, some up and some down. She got her wish to be a princess like Cinderella. The Make-A-Wish foundation gave her the greatest wish any little girl could ask for. They sent the whole family to Walt Disney World for a week. We got to stay at a place called Give Kids the World. There are no words to explain what that week ment to not only Jenna, but to our family. It was the first week that we were able to just be...be some place and not think about doctors & everything that goes along with it. She got to have dinner with Cinderella and she had a dress just like her. We did as much as we could that week, but she was still so sick and not able to go the whole day without a nap. We did all of the parks and had so much fun as a family. Jenna also got to go to summer camp that summer. This was no ordinary camp...this was a camp where there were other kids that were dealing with similar health issues like Jenna's.
Between 2006 and 2007 the Doctors were slowly lowering her oral steriods, taking other meds away one at time and she was down to once a month on her IV solumedrol...WOW! She was getting stronger each day and was back in school with all her friends. By December 2008 she was off all steriods and methotrexate!!! My little girl was on her way back to being the drama queen that I once knew. LOL. We were seeing the Doctors less and less and that was such a great feeling. When I think back to 2004 before we had a diagnosis everything was there right in front of me...we just couldn't put the pieces together. I hung onto so much guilt for so many years and it wasn't until she got better physically that I was able to get better emotionally. I had a wonderful support system that was there for me but I always felt alone. I always felt that no one really knew how I was feeling and no one could take all of the pain away. I got through some of the darkest days and that is a place that I never want to journey to again.
2009...Jenna was in the 5th grade! It was her last year in elementary school. We were not seeing her Rheumatologist as much as we had been. Physically and emotionally we were in the best place we had been in 5 years. We had our appointment set for March 8, 2010 with her Rheumatologist that was going to be the day that we were discharged. The day that we had been working towards for all these years. In January of 2010 Jenna started getting this spot on her belly, it was pink and about the size of a dime. What in the world was this? For about 2 weeks we watch the spot and it kept getting bigger and bigger. I went ahead and made an appointment to see her pediatrican. I didn't over think this, I didn't even panic, I just wanted to know what it was. We are now at the beginning of Feb 2010. We go and see her Doctor and do you think he could tell me what it was? No...LOL leave it to my family to have something that no one knows what it is. She had an x-ray of her abdomen due to the fact that this spot was now larger than it was 2 weeks prior and it was firm to the touch. They couldn't find anything. So we wait. This spot was growing before my eyes. We went and had an ultrasound done. That showed inflammation or resolving hematoma in the subcutaneous tissue...ok so now what? From there we went and had a CT scan done. That showed inflammation in the subcutaneous tissue as well. So back to our pediatrican we went! I know that he must get so tired of seeing me. LOL. At this point the only thing that he could suggest was to see a surgeon.
We made our appointment and got in to see this wonderful surgeon. While I was waiting to be called back to see him I decided to take things into my own hands...sometimes that is not always a good thing. Jenna's rheumatologist was right next to the surgeon that we were going to see...cowincedence??? LOL I figured let me see if the nurse was there and have her come and take a look at this "spot" on Jenna's belly. She came over to join our little party that we were having and she had said that she had never seen this in any other patient with dermatomyositis. The surgeon had suggested that we get a biopsy and go from there. On Feb 26, 2010 we spent the day at All Childrens hospital having a biopsy party. I would ask myself..."why?, she has been doing so good and things have been so well, why give her something else to deal with". We didn't have to wait long to get her diagnosis...Lymphoplasmacytic dermatitis and Lobular Panniculitis! Ok...something else we have no idea of what it is! Panniculitis? What in the world is that? Her having the Dermatomyositis was a 1 in a million shot, so what are these odds? We have come to learn that this is a VERY RARE condition. There are not even 30 cases reported. Great, that is great...time to learn another language. What we would soon learn was that this issue would only get worse. I am going to leave off with that for today and pick this up another day. At least I have most of you caught up to speed now. I should of started this a long time ago. It is so hard playing catch up LOL. I will get into more detail on the next blog.
It is so sad to see your child so sick. There were days when she could not even get out of bed. We were told by her nurse that she qualified for a wish from the Make-A-Wish Foundation in May of 2005. My reaction to that was..."she qualifies for a wish?...does this mean that she is going to die?" It was at that point that this illness had hit me. None of us know what our future holds, but I know that I was not wanting my future to be without my daughter. She was so blown up from all the steriods that she was having some pulmonary issues. We had to see a pulmonologist and have a PFT test, a sleep study and a CT scan of her lungs done...Results...more meds! Advair, albuterol and singulair on top of what she was already taking! She did have some improvement with breathing and her coughing was now under control.
The summer of 2005 would be full of so many emotions, some up and some down. She got her wish to be a princess like Cinderella. The Make-A-Wish foundation gave her the greatest wish any little girl could ask for. They sent the whole family to Walt Disney World for a week. We got to stay at a place called Give Kids the World. There are no words to explain what that week ment to not only Jenna, but to our family. It was the first week that we were able to just be...be some place and not think about doctors & everything that goes along with it. She got to have dinner with Cinderella and she had a dress just like her. We did as much as we could that week, but she was still so sick and not able to go the whole day without a nap. We did all of the parks and had so much fun as a family. Jenna also got to go to summer camp that summer. This was no ordinary camp...this was a camp where there were other kids that were dealing with similar health issues like Jenna's.
Between 2006 and 2007 the Doctors were slowly lowering her oral steriods, taking other meds away one at time and she was down to once a month on her IV solumedrol...WOW! She was getting stronger each day and was back in school with all her friends. By December 2008 she was off all steriods and methotrexate!!! My little girl was on her way back to being the drama queen that I once knew. LOL. We were seeing the Doctors less and less and that was such a great feeling. When I think back to 2004 before we had a diagnosis everything was there right in front of me...we just couldn't put the pieces together. I hung onto so much guilt for so many years and it wasn't until she got better physically that I was able to get better emotionally. I had a wonderful support system that was there for me but I always felt alone. I always felt that no one really knew how I was feeling and no one could take all of the pain away. I got through some of the darkest days and that is a place that I never want to journey to again.
2009...Jenna was in the 5th grade! It was her last year in elementary school. We were not seeing her Rheumatologist as much as we had been. Physically and emotionally we were in the best place we had been in 5 years. We had our appointment set for March 8, 2010 with her Rheumatologist that was going to be the day that we were discharged. The day that we had been working towards for all these years. In January of 2010 Jenna started getting this spot on her belly, it was pink and about the size of a dime. What in the world was this? For about 2 weeks we watch the spot and it kept getting bigger and bigger. I went ahead and made an appointment to see her pediatrican. I didn't over think this, I didn't even panic, I just wanted to know what it was. We are now at the beginning of Feb 2010. We go and see her Doctor and do you think he could tell me what it was? No...LOL leave it to my family to have something that no one knows what it is. She had an x-ray of her abdomen due to the fact that this spot was now larger than it was 2 weeks prior and it was firm to the touch. They couldn't find anything. So we wait. This spot was growing before my eyes. We went and had an ultrasound done. That showed inflammation or resolving hematoma in the subcutaneous tissue...ok so now what? From there we went and had a CT scan done. That showed inflammation in the subcutaneous tissue as well. So back to our pediatrican we went! I know that he must get so tired of seeing me. LOL. At this point the only thing that he could suggest was to see a surgeon.
We made our appointment and got in to see this wonderful surgeon. While I was waiting to be called back to see him I decided to take things into my own hands...sometimes that is not always a good thing. Jenna's rheumatologist was right next to the surgeon that we were going to see...cowincedence??? LOL I figured let me see if the nurse was there and have her come and take a look at this "spot" on Jenna's belly. She came over to join our little party that we were having and she had said that she had never seen this in any other patient with dermatomyositis. The surgeon had suggested that we get a biopsy and go from there. On Feb 26, 2010 we spent the day at All Childrens hospital having a biopsy party. I would ask myself..."why?, she has been doing so good and things have been so well, why give her something else to deal with". We didn't have to wait long to get her diagnosis...Lymphoplasmacytic dermatitis and Lobular Panniculitis! Ok...something else we have no idea of what it is! Panniculitis? What in the world is that? Her having the Dermatomyositis was a 1 in a million shot, so what are these odds? We have come to learn that this is a VERY RARE condition. There are not even 30 cases reported. Great, that is great...time to learn another language. What we would soon learn was that this issue would only get worse. I am going to leave off with that for today and pick this up another day. At least I have most of you caught up to speed now. I should of started this a long time ago. It is so hard playing catch up LOL. I will get into more detail on the next blog.
Tuesday, September 7, 2010
The beginning of our journey
I am starting this blog to share my journey with others in the hopes that it helps me heal emotionally and gives me some sort of peace in my life. I am not looking for anyone to feel sorry for me or my family, I don't want people to feel sad when they read this, I want others to learn from what we have been through as a family. We are no different from any other family, we all want the same thing...we want to be happy and healthy in our lives and we want nothing more than to see our children grow up to be the best they can be. I was blessed with two beautiful daughters inside and out. My oldest daughter Jordan was born at 1 pound 12 ounces...a little early. She spent the first 3 months of her life in a neonatal unit. I would drive 100 miles everyday to visit her. I would press my face up against her incubator praying that I would be able to hold her, kiss her and feel her heart beat on my chest. That little girl has strength like I have never seen. She made it out of the NICU and was able to come home. The next few months would be some of the hardest months I would face as a new mother...emotionally, medically, and financially. I was balancing motherhood and working full-time. With Physical therapy appointments and Doctors appointments it kept me very busy. When she was 18 months old we had taken her to see a Doctor at Shriners Hospital in Tampa Florida, that is where we would get the news that would change things in our life forever. We were told that she had Cerebral Palsy. It mostly affects her legs and the right side of her body. She has been a patient at Shriners ever since that day. She has had 6 operations on her legs to help her walk better and for her to have better balance. She has done wonderful but it has also been a struggle for her and our family. She is so independent and has not let CP stop her from doing the things that wants to do. She is getting ready to celebrate her 15th birthday next week...I can't believe it has been that many years! The time goes by so fast.
It was in 1998 that I would have my youngest daughter Jenna...She was beautiful! I never wanted to put her down. I had lost out on this time with Jordan because by the time I was able to take her home from the hospital she was 3 months old. I got to spend so much more time with Jenna because I was not working at the time so I really enjoyed each and every moment that I had with her. I was so blessed to have such beautiful girls. I wanted the best for them. I wanted them to be happy and healthy. I loved their laughs I loved when they smiled those big smiles. What more could anyone ask for! Things were going great the kids were thriving they were healthy, Jordan was getting better with her walking each and everyday. Then something changed! A mother knows when there is something wrong with her child, it doesn't take being a physician to know that. We spend every second of everyday around them. Jenna was about 4 yrs old and she just kept getting sick. She was sick so much, her nose would never stop running, she had this croupy cough that would not go away. I did everything a mother could do to make sure her child was healthy. I started breast feeding from day one and continued until she was just about a year old. I gave her good food, made sure she was getting enough sleep and made sure she was not around germs. For months I would take her to and from the Doctors office never getting any real answers. I had her tested for cystic fibrosis that came back negitive (Thank God) we had run all kinds of test and still came up with nothing. We thought that maybe as she got older the croupy cough would go away. She was now 6 yrs old and things for the most part were running along smoothly. It was Summer and we were doing what every family in America does in the summer time, we were going to the beach alot, we were swimming in the pool we were always on the go. I started to notice things with Jenna were getting weird again, she was wetting her bed almost every night, she was not eating that much and she had become very tired. Again, I was back to our wonderful pediatrician picking his brain for answers. I got...well some kids take longer at potty training than others and she may just be going through a phase. Ok, so I went home and continued on with my day to day. A few more weeks had gone by and I had noticed that she had this purple like rash in her eyes lids...uugghh "what the heck is this now" I figured that when I called the Doctor again he was going to think that I had really lost my mine. We would spend the next few months trying to find out what and where this rash was coming from. We saw a few different eye Doctors and had a CT scan done of her head. What they had found was inflammation behind her eyes. So we then tried all different kinds of steriod creams, we changed soaps, we changed her diet...you name it we did it! Still no change. Now her nail beds looked like she was chewing them raw, I would yell at her all the time, "stop biting you fingers" She would tell me "Mom. I swear I am not biting my nails." Now we were into September, she was still not eating that much, she was still wetting the bed at night, she still had purple eye lids and she still looked as if she was eating her finger nails for dinner. We had gone to Disney World for a few days and the whole time we were there she kept crying and saying that her legs were hurting her. As a Mother my first thought was..."ok, her sister is in a wheelchair and she wants to be in one as well". I would say over and over to her..."Jenna, there is nothing wrong with you now stop your crying and walk!" These words haunt me everyday. when I think back to that weekend I only wish I knew then what I know now. When we got home things were pretty much the same routine. She was still sleeping alot and not eating too much and we just thought she was going through a phase and that it was going to pass.
October of 2004 had came and it was now Halloween time and the kids were getting so excited to go out and Trick or Treat. Now there isn't a kid that I know that doesn't like to go out and get free candy! They would walk miles for it! LOL We had only been out for about 30 minutes and Jenna started again..."My legs hurt" uuggghh!!! Here we go again. We didn't stay out long that evening and headed home where she just fell into bed. Still we were going on about our lives and I just kept thinking that this was all going to pass. Maybe she was having growing pains in her legs? Maybe she just wanted some extra attention from me? We were now into the month of November and Jenna had gone to spend the weekend with her Nana, they do all kinds of fun stuff together! They were ripping off wall paper and my Mother noticed that Jenna could not put her chin to her chest and that she was having problems putting her arms over her head. "You better go have that check, that isn't normal" She would say to me. I was like..."ok, Mom I will, I know there have been some weird things going on with her." As a Mother we don't want to run to the Doctors everytime that our kids sneeze, but we don't want to overlook things either. I didn't run to see the Doctor at this point I wanted to see if maybe she had slept wrong or maybe she pulled a muscle or somethink like that. I don't know if part of me was scared of what the Doctor would say or if deep down I didn't think anything was really wrong. It was now Christmas and we had gone to visit family in New Jersey for the holidays. It was so nice to be somewhere cold ( we live in Florida). We also don't have stairs in Florida and when Jenna could not even climb a flight of stairs it was then that everything hit me. What in the world was wrong with my beautiful daughter? I remember crying because I felt so bad about all the times that I told her she was fine. When we got home I called her Doctor and made an appointment. It was the first week of the new year and we went to see our Pediatrician, he did a complete physical with all kinds of labs. I remember him saying to me..."ya know sometime autoimmune diseases can present with a funky rash like the one she has on her eyes, let's see what her labs show and we will go from there". The labs came back and her CK ( muscle enzymes) were through the roof and there were a bunch of other labs that were off as well. I had already had an appointment set up with a dermatologist for the 13th of January 2005 but our pediatrician wanted us to see a Rheumatologist and a Gastroenterologist ASAP. We got in to see the dermatologist on the 13th as planned and he had said that she had Dermatomyositis. Dermatomyositis! What the heck is that? The Dermatologist had suggested that we see a Rheumatologist. When he told me that she had Dermatomyositis I was thinking, "ok, this isn't so bad, Derma, that is something to do with the skin" Not too bad I can deal with that...WRONG! When I even went to see the Rheumatologist that would be the day that would change my life and my daughters life FOREVER!
I remember sitting in his office waiting for him to come in and do his check-up with her. It felt like hours that I sat there waiting. He came in and made us feel comfortble. He did an exam on Jenna and sat and spoke to us about her diagnosis. He had said there are 5 signs and symptoms of Dermatomyositis and she had all 5. He admitted her that day and got her started with her treatment. He also said they would do a muscle biopsy to confirm the diagnosis. This would be the beginning of our non-stop rollercoaster ride. I am sitting her today thinking back to that very day and it feels like yesterday that we got her diagnosis. It has been 5 years and 9 months! She had been sick all that time before. All that time I was telling her to get up and walk, all the times I would say that she was fine. Talk about guilt...I had it. It was so hard for me in the beginning. I had no idea what to do, I had no idea what this disease even was. This was the beginning on our road with DERMATOMYOSITIS. I wanted to just give you all a bit of info on how it all started. I am going to continue to write so that I can share this with all of you and maybe another family that is dealing with the same issues that we are. Thanks to all who have been there to support me and my family in more ways than I can put into words. You all mean so much to me. Thank You.
It was in 1998 that I would have my youngest daughter Jenna...She was beautiful! I never wanted to put her down. I had lost out on this time with Jordan because by the time I was able to take her home from the hospital she was 3 months old. I got to spend so much more time with Jenna because I was not working at the time so I really enjoyed each and every moment that I had with her. I was so blessed to have such beautiful girls. I wanted the best for them. I wanted them to be happy and healthy. I loved their laughs I loved when they smiled those big smiles. What more could anyone ask for! Things were going great the kids were thriving they were healthy, Jordan was getting better with her walking each and everyday. Then something changed! A mother knows when there is something wrong with her child, it doesn't take being a physician to know that. We spend every second of everyday around them. Jenna was about 4 yrs old and she just kept getting sick. She was sick so much, her nose would never stop running, she had this croupy cough that would not go away. I did everything a mother could do to make sure her child was healthy. I started breast feeding from day one and continued until she was just about a year old. I gave her good food, made sure she was getting enough sleep and made sure she was not around germs. For months I would take her to and from the Doctors office never getting any real answers. I had her tested for cystic fibrosis that came back negitive (Thank God) we had run all kinds of test and still came up with nothing. We thought that maybe as she got older the croupy cough would go away. She was now 6 yrs old and things for the most part were running along smoothly. It was Summer and we were doing what every family in America does in the summer time, we were going to the beach alot, we were swimming in the pool we were always on the go. I started to notice things with Jenna were getting weird again, she was wetting her bed almost every night, she was not eating that much and she had become very tired. Again, I was back to our wonderful pediatrician picking his brain for answers. I got...well some kids take longer at potty training than others and she may just be going through a phase. Ok, so I went home and continued on with my day to day. A few more weeks had gone by and I had noticed that she had this purple like rash in her eyes lids...uugghh "what the heck is this now" I figured that when I called the Doctor again he was going to think that I had really lost my mine. We would spend the next few months trying to find out what and where this rash was coming from. We saw a few different eye Doctors and had a CT scan done of her head. What they had found was inflammation behind her eyes. So we then tried all different kinds of steriod creams, we changed soaps, we changed her diet...you name it we did it! Still no change. Now her nail beds looked like she was chewing them raw, I would yell at her all the time, "stop biting you fingers" She would tell me "Mom. I swear I am not biting my nails." Now we were into September, she was still not eating that much, she was still wetting the bed at night, she still had purple eye lids and she still looked as if she was eating her finger nails for dinner. We had gone to Disney World for a few days and the whole time we were there she kept crying and saying that her legs were hurting her. As a Mother my first thought was..."ok, her sister is in a wheelchair and she wants to be in one as well". I would say over and over to her..."Jenna, there is nothing wrong with you now stop your crying and walk!" These words haunt me everyday. when I think back to that weekend I only wish I knew then what I know now. When we got home things were pretty much the same routine. She was still sleeping alot and not eating too much and we just thought she was going through a phase and that it was going to pass.
October of 2004 had came and it was now Halloween time and the kids were getting so excited to go out and Trick or Treat. Now there isn't a kid that I know that doesn't like to go out and get free candy! They would walk miles for it! LOL We had only been out for about 30 minutes and Jenna started again..."My legs hurt" uuggghh!!! Here we go again. We didn't stay out long that evening and headed home where she just fell into bed. Still we were going on about our lives and I just kept thinking that this was all going to pass. Maybe she was having growing pains in her legs? Maybe she just wanted some extra attention from me? We were now into the month of November and Jenna had gone to spend the weekend with her Nana, they do all kinds of fun stuff together! They were ripping off wall paper and my Mother noticed that Jenna could not put her chin to her chest and that she was having problems putting her arms over her head. "You better go have that check, that isn't normal" She would say to me. I was like..."ok, Mom I will, I know there have been some weird things going on with her." As a Mother we don't want to run to the Doctors everytime that our kids sneeze, but we don't want to overlook things either. I didn't run to see the Doctor at this point I wanted to see if maybe she had slept wrong or maybe she pulled a muscle or somethink like that. I don't know if part of me was scared of what the Doctor would say or if deep down I didn't think anything was really wrong. It was now Christmas and we had gone to visit family in New Jersey for the holidays. It was so nice to be somewhere cold ( we live in Florida). We also don't have stairs in Florida and when Jenna could not even climb a flight of stairs it was then that everything hit me. What in the world was wrong with my beautiful daughter? I remember crying because I felt so bad about all the times that I told her she was fine. When we got home I called her Doctor and made an appointment. It was the first week of the new year and we went to see our Pediatrician, he did a complete physical with all kinds of labs. I remember him saying to me..."ya know sometime autoimmune diseases can present with a funky rash like the one she has on her eyes, let's see what her labs show and we will go from there". The labs came back and her CK ( muscle enzymes) were through the roof and there were a bunch of other labs that were off as well. I had already had an appointment set up with a dermatologist for the 13th of January 2005 but our pediatrician wanted us to see a Rheumatologist and a Gastroenterologist ASAP. We got in to see the dermatologist on the 13th as planned and he had said that she had Dermatomyositis. Dermatomyositis! What the heck is that? The Dermatologist had suggested that we see a Rheumatologist. When he told me that she had Dermatomyositis I was thinking, "ok, this isn't so bad, Derma, that is something to do with the skin" Not too bad I can deal with that...WRONG! When I even went to see the Rheumatologist that would be the day that would change my life and my daughters life FOREVER!
I remember sitting in his office waiting for him to come in and do his check-up with her. It felt like hours that I sat there waiting. He came in and made us feel comfortble. He did an exam on Jenna and sat and spoke to us about her diagnosis. He had said there are 5 signs and symptoms of Dermatomyositis and she had all 5. He admitted her that day and got her started with her treatment. He also said they would do a muscle biopsy to confirm the diagnosis. This would be the beginning of our non-stop rollercoaster ride. I am sitting her today thinking back to that very day and it feels like yesterday that we got her diagnosis. It has been 5 years and 9 months! She had been sick all that time before. All that time I was telling her to get up and walk, all the times I would say that she was fine. Talk about guilt...I had it. It was so hard for me in the beginning. I had no idea what to do, I had no idea what this disease even was. This was the beginning on our road with DERMATOMYOSITIS. I wanted to just give you all a bit of info on how it all started. I am going to continue to write so that I can share this with all of you and maybe another family that is dealing with the same issues that we are. Thanks to all who have been there to support me and my family in more ways than I can put into words. You all mean so much to me. Thank You.
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