Well, probably 2 weeks is more accurate. Has it been that long? I guess so!
I shall start with getting Emily's chair. You know that things are rough when you're excited about getting your child a new wheelchair. However, this opens us up to be able to do several things that we haven't been able to do. Things like, go for a long walk in the woods. The new chair can handle that! Go to a fair or other place that would have us walking around a lot. Granted, we had a chair before, but for one it was "an old people's chair". She never complained, she just didn't feel comfortable. Also, there was no restraint. She felt like she was going to fall out. So this was very exciting! We are hoping to be able to go to the Renaissance Fair when it comes to town. We will definitely need a good chair for that. (If we wait until March 20th we can renew our wedding vows- just in time for our 15th anniversary on April 5th!)
Kevin had the appointment made for him to go in for his radiation, only to be told that the doctor that made it didn't know the whole situation, and his thryoid counts weren't low enough. Our doc canceled the appointment, telling him to get more labs done on Wednesday. Of course, being without meds while they wait for levels is making him feel like the human slug- sluggish, swollen, forgetful, cranky and sore. Not too much fun. He's holding up well, but only because there isn't really much of a choice. He forgot to do labs on Wednesday, and by Thursday we had a sick boy. DangerBoy stayed home from school Thursday & Friday both, so Kevin didn't go to the lab until Friday. (By that point our boy felt a little better and wouldn't be contagious.) We're hoping that they will call tomorrow to schedule him. We shall see!
My father went in for the angioplasty to find that it wasn't a stent that he needed. I was very concerned because so many other things around this time seemed to be falling apart for other people. It almost seemed taboo. It turned out that, in his words, there was a kink in the artery. ????? I don't get it, but that's what he said. I've asked him to find out the medical terminology so that I can research it. The good news is that he's fine! My mother had taken the info to give me at first, but she messed it all up out of nerves. She told me there was a 40% blockage but they weren't going to do anything about it, and that he had to stay overnight because they had given him something and had to watch him. Yeah, they gave him a hole in his groin and a six inch metal wand to go inside of the hole! It was a very confusing, stressful day. By the grace of God, he's home and doing great now!
Next came the letter from Make-A-Wish foundation! They sent a parent packet so that you know what to expect, what we will need to have, and so on. We still had some questions, but we figured we would wait until they called to ask.
I believe it was the next day that I watched a pedestrian get hit by a car. I have been trying to find some news on her condition, but so far nothing. The day that it happened I held it together really well. That's the great thing about constant medical chaos and perpetual stress- you handle trauma very well. The next morning I couldn't get the images out of my head. Thank God I didn't see the entire thing. I watched her cross the road most of the way, then I turned my attention to the traffic light. I heard the noise, looked up and saw her flying. I know I didn't have to stop- technically I didn't see the whole thing, but I knew enough to be able to tell them that the driver couldn't possibly have seen her. She didn't seem to realize that the turn lane didn't stop. She just ran right into the car. It turned even more nightmarish after her husband came over, obviously distraught, and yelled out to the paramedics that she was one month pregnant. Yes, I know it could have been worse, but it was horrible. Like a scene out of "Final Destination".
Friday & Saturday this week were unremarkable! I love those days... Sunday after work was wonderful! We went over to Kevin's aunt's house for his grandmother's 93rd birthday. Poor Grandma now has poor memory added to the poor hearing & vision, but she's so sweet, so full of stories. It was a very pleasant evening spent with family that we really don't see often enough. We always have such chaos. It's work, or medical or kids. We're just so busy! It's hard to find the right balance, but at least we make some time.
Lastly, tonight a Make-A-Wish volunteer called to make our appointment! I went into my room to talk to her, knowing that I would break down a little talking to her. I asked her- just to clarify- if our doctor had sent her blessings already. Just to be clear. I had assumed so, but this is so, so good that I didn't want to get Em's hopes up only to have them crushed. She assured me that yes, we are cleared. I cried. I know that this will give her something to look forward to, and then later it will give her lifelong memories. And they will take good care of her, and our other children! Emily has her heart set on going to Disney World here. She's always wanted to fly so I've been trying to convince her to fly to Disney Land if she wants to do Disney, but I also told her that it's her choice & I don't care what she wants to do. If she is dead set on Disney here, there is another fantastic non-profit that I discovered on my Juvenile Myositis Facebook group. Give Kids the World focuses on completely spoiling the family during their stay. I've been trying to help her to understand that she can pick ANY wish that she desires. Some kids have gone to Puerto Rico, some to swim with the dolphins. Others have met their favorite star, gone to an event, traveled to Oregon in an RV, had a bedroom make-over. As long as it's something that makes her happy we're good.
I'm not sure where we stand on her health right now. She said the other night that her arm hurt, but she couldn't tell if it was her elbow or her upper arm. Today it was definitely the upper arm, in the muscles. Her legs are good though, with the exception of the rash flaring up again on her knees. Today it looked almost purple. Most days it's puffy pink. I'm taking my notes and debating on what to do. Tonight was her Methotrexate injection. I'm hoping that will help and she'll be fine. Otherwise, I think we'll have to go back up to 6MLs (18MGs) of Prednisone. I really don't want to do that. I know that she doesn't either. I'm hoping to prevent it. We shall see.
Tomorrow I also meet up with fellow blogger & JA mom! We've been talking on Facebook and occasionally on the phone for quite some time now. It will be so good to meet! Can't wait!
Tuesday, February 22, 2011
Saturday, February 12, 2011
Addressing the inaccuracies
I had the misfortune of reading an "education article on juvenile arthritis". Unfortunately, reading this was akin to how I would imagine reading a JA article in the National Enquirer would be. The educational content was significantly lacking at best, downright ignorant & hurtful to the cause at worst. As a parent of a child that has had arthritis for several years now, I have seen, read, and had conversations that absolutely floored me, but this one still has me angry a week later. The link to this misinforming JA article is here. If not for copywrite laws I would copy & paste it. Apparently, the "doctor" that wrote the article writes these and leaves them on his blog. The majority of his writing is riddled with errors; some advice is dangerous in other articles.
What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all. He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him. This can be very detrimental when the subject is something like JA. We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age. AA is an AutoImmune disease; the body is attacking itself! No one knows why this happens.
The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore. Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease. I'll let that slide because some old school docs still refer to it as JRA. (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it. It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.) Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera. These diseases are all different, yet they are all forms of arthritis. Yes, children can get them all.
From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk. Symptoms can appear at any time. I've never read that boys symptoms show after girls. That could be correct, but I could neither prove nor disprove that one. I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time." The first thing that I have to laugh about here is this: AutoImmune disorders are a result of an over-active immune system. This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors. Some children are lucky enough to have it "disappear", otherwise known as remission. They are not "cured". Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it. How many people do you know of that had Lupus just go away?
This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver. Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement. He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day. So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis? Somehow, I think not. He seems to place a lot of blame on the parents. I can honestly say that I did everything right during my pregnancy with my JA child. I didn't drink or do drugs (and still don't, thank you!). I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations. I did everything right. So, this is my fault? If any of my children should have gotten JA then, it would have been my oldest. My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition. I certainly could have done better. And she's perfect. Go figure.
He believes that better nutrition would benefit. Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this. There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly). In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet. Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system. Many are gluten sensitive and feel much better with a gluten-free diet. Some can't digest sugars properly either, and they feel better cutting sweets out entirely.
The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA". Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way. I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to. He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way. I realize that Oriental medicine is much different than traditional US medicine. I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true. However, I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.
On a side note, Emily's new wheelchair came in! We are very happy about this. I am thrilled that it came in before a myositis flare left her incapable of walking, for one. Obviously, we are hoping that will never happen, but since the odds are not in our favor we felt like getting a chair in quickly would be for the best. Currently her endurance and stamina are not good. She tries very hard, but if we have a lot of walking to do she simply can't do it. Walking from the car to her doctor's office at the hospital wears her out. We use the chair to get the the parking garage on one side to her doctor upstairs and at the opposite end. If we happen to go to the mall (which is very rare, thankfully) she can't handle that. Partially it's because her legs can't do it, but also because the steroids have puffed her out so badly that she can't get comfortable. Of course, she went from 42 lbs to 62 lbs in a month. I think 30% went to her face, 50% went to her belly, and the rest got spread out. Her belly went from not having an extra ounce to looking like she was due with twins any day. That does not make it easy to move. Her feet are having a rough time adjusting, too. It's a lot of extra weight added very quickly. Still, she's very blessed. Many JM kids are still bedridden for months and months. She was only mostly down for about 2 months; at her worst she could still drag herself across the house to the bathroom. Many kids can't. I shall leave with a new pic of Em in her chair :) We had just gotten her out of her bath; I hadn't had a chance to comb her hair or anything yet. We were rushing to get her into bed, but I really wanted to get it set up in case we're in a hurry the next time we need it. The pictures were an afterthought.
What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all. He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him. This can be very detrimental when the subject is something like JA. We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age. AA is an AutoImmune disease; the body is attacking itself! No one knows why this happens.
The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore. Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease. I'll let that slide because some old school docs still refer to it as JRA. (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it. It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.) Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera. These diseases are all different, yet they are all forms of arthritis. Yes, children can get them all.
From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk. Symptoms can appear at any time. I've never read that boys symptoms show after girls. That could be correct, but I could neither prove nor disprove that one. I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time." The first thing that I have to laugh about here is this: AutoImmune disorders are a result of an over-active immune system. This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors. Some children are lucky enough to have it "disappear", otherwise known as remission. They are not "cured". Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it. How many people do you know of that had Lupus just go away?
This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver. Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement. He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day. So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis? Somehow, I think not. He seems to place a lot of blame on the parents. I can honestly say that I did everything right during my pregnancy with my JA child. I didn't drink or do drugs (and still don't, thank you!). I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations. I did everything right. So, this is my fault? If any of my children should have gotten JA then, it would have been my oldest. My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition. I certainly could have done better. And she's perfect. Go figure.
He believes that better nutrition would benefit. Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this. There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly). In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet. Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system. Many are gluten sensitive and feel much better with a gluten-free diet. Some can't digest sugars properly either, and they feel better cutting sweets out entirely.
The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA". Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way. I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to. He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way. I realize that Oriental medicine is much different than traditional US medicine. I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true. However, I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.
Monday, February 7, 2011
Staying Strong
Emily is doing pretty well now. The flare actually started to get better instead of worse! I am so grateful for that! She has had a pain at the top of her sternum this week. I'm not sure what that is yet. I was planning on asking her doctor last Tuesday but somehow I managed to forget with the whole myositis flare coming up. She's pretty much over her cold, and doing really well, actually. I'm hoping that this newest Prednisone decrease will start to help the swelling come down more and more. She's still got so much in the belly that makes it hard for her to do all sorts of things.
Kevin is surviving no thyroid meds for a month. It's getting a little more difficult day by day, but he's hanging in. He had his labs drawn Friday, so hopefully his doctor's office will call back (and normally they don't return calls... grrrrr) to say that his hormone levels are at a good enough point to get the radiation pill this week. That will mean a 3-5 day trip to the hospital for confinement, then a full body scan. After that he can go back on his meds. I'm hoping they actually call back this time. He'd like to get back on with his life, please.
The last bit of news is my dad. (Dad & Mom are pictured above) I've been trying to not worry about this because I try hard to only stress about one huge event at a time and well, this didn't fit into the schedule until this week. He's had angioplasty before. He's actually had several. I want to say he had 3 before his double bypass and another 2 after, but to be honest, that was at a time in my life when my little people were not sleeping well, where Emily cried all of the time, and I was so crazy between stress and exhaustion that I literally don't remember several of those years. (At least now the crying is only for infusions and she sleeps, so I sleep! I'm VERY serious about sleep.) Anyway, it's been a few years since we've had to go down this road. He went from being very depressed and not being able to do much to feeling pretty good. I can't say he's been running marathons or anything but he's done well for almost 76. Last week he texted me to tell me that his stress test results weren't great, and that it could be that one of his stents was involved in a recall. (Holy crap!) So, I called them tonight. This has them freaked out enough so they actually went to a lawyer and had a will drawn up along with a living will & power of attorney. That part freaks me out. He may drive me absolutely crazy, but he has a wonderful heart and he means well. He's very smart, very caring. So, if you all wouldn't mind, please keep us in your thoughts and prayers yet again. I am very, very grateful to have such a wonderfully caring community on Facebook. My FB friends & the moms on my groups really have helped me to keep my sanity when I didn't think it was possible. I cannot even believe the amount of things that we've had go wrong in the past ten months, but with the support of great friends and family, we'll be ok. Thankfully, I learned what they mean when they say "Let go, Let God".
Kevin is surviving no thyroid meds for a month. It's getting a little more difficult day by day, but he's hanging in. He had his labs drawn Friday, so hopefully his doctor's office will call back (and normally they don't return calls... grrrrr) to say that his hormone levels are at a good enough point to get the radiation pill this week. That will mean a 3-5 day trip to the hospital for confinement, then a full body scan. After that he can go back on his meds. I'm hoping they actually call back this time. He'd like to get back on with his life, please.
Thursday, February 3, 2011
Infusion, Dr. visit & first Myositis flare
As it nears Remicade infusion day, the tension tends to build. By the day before, Em & I are both a little crazy. Monday night I was laying down watching TV when I heard crying. I went to go investigate, & found Em sitting on her floor sobbing hard. I sat & held her, talking to her, getting her tissues, cuddling. Why so sad? She was terrified to go. It is absolutely heartbreaking to watch her get so upset about something that she needs- especially when it's something that kids shouldn't have to go through.
The drive up is always kind of somber. She looks like she's going for her execution or something. On our way up, I heard Mandisa's latest release, "Stronger". I cannot explain to you on how many levels this touched me. For me, for her. It seemed to hit on exactly what we were going through. It's amazing how God can work in our lives, putting in front of us just what we need, when we need it. That is how this song felt.
After we parked, I asked her if she thought she could walk across the street and hospital or if she'd need her chair. She said that her legs felt tired. Um-hmm. Putting the puzzle pieces together, thinking about how her knees looked bright red but didn't hurt. I thought it was my imagination that her elbows were looking more red. Once we got into the check-in area, she was called back quickly. I asked right away if Jason, the one guy that can get her on the first stick, was available. Our lucky day- he had just come off of lunch! I was a little worried at first. He couldn't find a good vein. The one that he could feel was deep and they didn't think they could reach it. Somehow, he managed to get it on the first try, plus they were able to draw blood from it without it collapsing! What a relief when that was over! Of course, her blood pressure ran high the whole time. I was a little worried about that since she's on medicine for it. (And by the way, her Raynaud's has been flare free!!!!! Wahoo!)
Here's where she got mad at me: I pointed out to the nurse practitioner that her knees were bright pink and puffy, but she claimed they didn't hurt. Her face rash looked ok, but that isn't the only marker. Sure enough, the nurse practitioner said that it looked like a flare, probably brought about because Emily had bronchitis & a cold. I guess she was afraid to see the doctor, knowing that she was flaring. When she came in and tried to look at her knees, Emily screamed at her in a way that I've never seen her do before. She claimed it was because her hands were cold. I was embarrassed! It was vicious sounding! I found out the real why later. I took Emily to the bathroom a little later & she asked me if she was staying over. She seemed unconvinced when I told her no. So I asked her, "you knew that your JM was flaring, didn't you? Is that why you didn't want to come today?" Yup, that was it. She was afraid that she would be kept as inpatient because she was flaring. Poor little kid! I think that subconsciously I knew that she was flaring. I have tried hard to prepare myself for the fact that this will most likely be something to come & go for many, many years to come, but I think a part of me has still been in complete denial that she's flaring.
In the end it turned out to be a good appointment. We are still able to decrease her Prednisone to 15mgs daily, while increasing her Methotrexate to .6 on the needle. I was very surprised about that! I was completely expecting to have to increase Prednisone, so that was a pleasant surprise. We even got out a little early! We were back home by 6:40 PM. Usually it's after 8 PM when we get back. At least the drive is scenic. I have wondered what it will look like through the spring and summer :) I don't look forward to the long drive, but I do enjoy the views!
Last thing- She was talking to her Daddy this morning in the kitchen, telling him what her legs felt like. She says they feel like there's metal in them, they're heavy. Right now it's just in her legs. We had another nice chat about being honest with us about how she feels. I tried to explain to her that I read so much in books, on the internet, and in my Facebook support groups that I pretty much know what's going on. Yes, I will have questions that I cannot answer myself or via FB, but I have a pretty good idea of what's going to happen. If she had been honest with me, I could have told her what I thought the doctor would do. I could have helped with a lot of the fear... if she had let me. We all have a cold right now, except for Gir. I'm barely functional right now, but we keep it together.
The drive up is always kind of somber. She looks like she's going for her execution or something. On our way up, I heard Mandisa's latest release, "Stronger". I cannot explain to you on how many levels this touched me. For me, for her. It seemed to hit on exactly what we were going through. It's amazing how God can work in our lives, putting in front of us just what we need, when we need it. That is how this song felt.
After we parked, I asked her if she thought she could walk across the street and hospital or if she'd need her chair. She said that her legs felt tired. Um-hmm. Putting the puzzle pieces together, thinking about how her knees looked bright red but didn't hurt. I thought it was my imagination that her elbows were looking more red. Once we got into the check-in area, she was called back quickly. I asked right away if Jason, the one guy that can get her on the first stick, was available. Our lucky day- he had just come off of lunch! I was a little worried at first. He couldn't find a good vein. The one that he could feel was deep and they didn't think they could reach it. Somehow, he managed to get it on the first try, plus they were able to draw blood from it without it collapsing! What a relief when that was over! Of course, her blood pressure ran high the whole time. I was a little worried about that since she's on medicine for it. (And by the way, her Raynaud's has been flare free!!!!! Wahoo!)
Here's where she got mad at me: I pointed out to the nurse practitioner that her knees were bright pink and puffy, but she claimed they didn't hurt. Her face rash looked ok, but that isn't the only marker. Sure enough, the nurse practitioner said that it looked like a flare, probably brought about because Emily had bronchitis & a cold. I guess she was afraid to see the doctor, knowing that she was flaring. When she came in and tried to look at her knees, Emily screamed at her in a way that I've never seen her do before. She claimed it was because her hands were cold. I was embarrassed! It was vicious sounding! I found out the real why later. I took Emily to the bathroom a little later & she asked me if she was staying over. She seemed unconvinced when I told her no. So I asked her, "you knew that your JM was flaring, didn't you? Is that why you didn't want to come today?" Yup, that was it. She was afraid that she would be kept as inpatient because she was flaring. Poor little kid! I think that subconsciously I knew that she was flaring. I have tried hard to prepare myself for the fact that this will most likely be something to come & go for many, many years to come, but I think a part of me has still been in complete denial that she's flaring.
In the end it turned out to be a good appointment. We are still able to decrease her Prednisone to 15mgs daily, while increasing her Methotrexate to .6 on the needle. I was very surprised about that! I was completely expecting to have to increase Prednisone, so that was a pleasant surprise. We even got out a little early! We were back home by 6:40 PM. Usually it's after 8 PM when we get back. At least the drive is scenic. I have wondered what it will look like through the spring and summer :) I don't look forward to the long drive, but I do enjoy the views!
Last thing- She was talking to her Daddy this morning in the kitchen, telling him what her legs felt like. She says they feel like there's metal in them, they're heavy. Right now it's just in her legs. We had another nice chat about being honest with us about how she feels. I tried to explain to her that I read so much in books, on the internet, and in my Facebook support groups that I pretty much know what's going on. Yes, I will have questions that I cannot answer myself or via FB, but I have a pretty good idea of what's going to happen. If she had been honest with me, I could have told her what I thought the doctor would do. I could have helped with a lot of the fear... if she had let me. We all have a cold right now, except for Gir. I'm barely functional right now, but we keep it together.
Sunday, January 30, 2011
Since I get asked a lot about Raynaud's
One problem that can go hand in hand with several different diseases that are covered under the spectrum of arthritis is Raynaud's Phenomenon. Raynaud's is an over-reaction to the cold. The blood vessels constrict from simple things like being in air conditioning or holding a cold glass of water. The classic signs are the color draining out of the affected hand (or foot, nose, or ear) which turns the area bright white, then turning purple or blue as blood starts to fill in, then red as the blood comes rushing back in. It is painful, prickly, tingly, and causes numbness. There is primary Raynaud’s, in which case there are no other conditions, and there is secondary Raynaud’s- caused by some other disease such as Scleroderma, Mixed Connective Tissue Disease, and also found to be related somehow to Dermatomyositis. Secondary is generally considered to be more severe than primary. The best link that I have found to explain it is The National Heart, Lung, & Blood Institute. Also, The Raynaud's Association is a great place to find support and info.
It was only one year ago this month that my daughter was suffering a great deal from her Raynaud's Phenomenon. Her doctor at the time decided that she was too young for medicine, and that we could control it by keeping her core warm. We would pack her off daily in the winter with two T-shirts, a warm long sleeved shirt, jeans, mittens, and a very heavy winter coat. One would assume that would be enough for a sunny Florida winter, but not the case for my child. It was when she developed frostbite at school that I truly began to panic. This was a life changing disease for her. No longer could my sweet little princess wear her cute little dresses and skirts that she loved so much. Instead, we were piling as much extra clothing on her as possible, but it was never enough. Her school actually made a drill based off of an idea that my hubby had. He would take a sock, fill it with rice, and microwave it for a few seconds to a minute, depending on the size of the sock. The school had several of these socks, and they placed them strategically around the school. Whenever she had a particularly bad episode, they would run for the socks. I worried daily about frostbite, and the possibility of her losing her fingers because she tried to ignore it. The springtime wasn't as severe, but still she continued to have many episodes even when it was 85F outside. And still her doctor didn't think that she needed medication. Our new doctors gave her a prescription for a Calcium Channel Blocker just before the end of December. Even as a child that doesn't like to take medicines, she was afraid of what a cold winter would bring, and she requested it. I can't say that she hasn't had an episode since, but she has certainly had far less. In fact, I have only seen one. Today she can walk around the house in a nightgown or skirt without fear. We can go outside on a cold day without fearing the worst. Yes, she still gets much colder than other people, and she can’t warm back up that well, but it isn’t like it was. For that, I am very grateful. Her current doctors call her case of Raynaud's "significant". They could tell from a mile away that she had problems with it. Medication was the best decision that we could have made for her. Perhaps it wouldn't be the best course for everyone, but for us it has made a huge mountain look like a small hill.
With this time of year also comes bronchitis. I thought that we had her on enough preventatives to keep her under control, but I suppose that wasn’t a very realistic thought. She went to the doctor on Wednesday, but we plan on taking her back tomorrow. To complicate matters even more, she is due for her Remicade infusion on Tuesday! Remicade is an immune suppressor, so if she still has an infection it would be very detrimental. Since we have to drive 2 hours away for it… I’d like her pedi to clear her. This is her current medication list, with the bronchitis meds being the first 6.
Emily’s current meds as of January 30, 2011
Zithromyacin- 200MGs once daily
Singulair- 5MGs daily
Flovent- 44mcgs twice daily
Ventolin- Every 4-6 hours
Veramyst- One squirt each nostril nightly
Benadryl- 1.5 tsps (On request for congestion & cough at night)
Prednisolone- Take 18MG in the morning
Prilosec (Omeprazole) ONE capsule once daily
Meloxicam- 5 MLS (1 tsp) nightly
Nifedipine ER 30MG- One pill once daily
Xyzal- 5MG once nightly
Methotrexate- .5 Sub-Q once weekly
Leucovorin- 1 pill weekly 24 hours after MTX
Miralax- ½ Cap nightly
Multi-VitaminIV Infusions:
Remicade- Once monthly
Solu-Medrol- Once Monthly
17 meds. Now doesn’t that look like a good time? Poor kid takes more medicine in than food or drink, I think. This is what having an autoimmune disease does. And remember folks- she’s only 9. I'll post tomorrow after work about what her pedi says, or Tuesday after her appointment if she is cleared. Keep us in your prayers!
Monday, January 17, 2011
Lots of things to point your attention to!
I have had a lot of little ups & downs this weekend. I learned a neat little fact. Did you know that "the incidence of Juvenile Dermatomyositis in the United States is approximately 3 in one MILLION children per year"??? She can't catch a break but she can develop all sorts of rare diseases!!!
The more I read from my books & compare to Emily's previous lab reports, the more amazed I am at how long the Juvenile Dermatomyositis has likely been a factor. One thing that we have never been able to make any sense of I think I have figured out. Before Emily was diagnosed with JA, our pediatrician discovered that her liver enzymes were elevated. All summer and into the next school year we went for labwork every six weeks. Her enzymes continued to fluctuate over the past few years between normal & high. We had attributed some of this to Methotrexate use. Well, I discovered tonight that those same liver tests are the ones that tell when your muscle enzymes are elevated, as in the case with JDM! No one could have known back then, and she didn't show signs of JDM until this April., so I thought. It is likely back in 2007 her elevated counts were due to Mixed Connective Tissue Disease. MCTD comes with its own muscle inflammation similar to DM without actually being it fully. (Disease features) Her labs from this March were really high. Like, someone should have realized Houston! We have a problem! Especially since April started the downward spiral.. the 3 weeks in a 2 month period where she couldn't walk. However, since the liver enzymes could have been due to MTX, I'll let that one go. For now. I'd like to focus tonight on information.
I have found many things this week that I find very handy! The first is from the Arthritis Foundation's website. This link here is the 100+ diseases that are covered under the arthritis umbrella. MCTD, Raynaud's, Dermatomyositis are all included. Yes, really! For those of us that are unlucky enough to have to deal with JDM, we are blessed to have the Cure JM! team. Their site is very informative, and run by all volunteers. This non-profit was made my families that had children & grandchildren suffering from JDM. One amazing mom recently wrote a case study on JDM. I printed out a copy tonight to enclose with the letter that I send to our former rheumy's hospital affiliate. One of the books that I have been referring to lately was written by a few doctors, but also one of the founders of Cure JM! How did I recognize the name? She's on one of my Facebook boards. Another mom, trying hard to help her daughter take her meds on time & still try to have a "normal" life, invented a really cool pill holder.
Of course, it's not just about JDM. Emily has 5 different types of arthritis. The Arthritis Foundation has done a LOT of amazing things to help find a cure, treat, & prevent arthritis, but also to send children affected by these terrible chronic conditions to camp, as well as the Juvenile Arthritis Conference. (You can make donations to the Arthritis Foundation via my personal page for the walk in our area. Now there's another non-profit sweeping the nation. The awesome thing about them is that they are fighting not just for awareness... they are fighting to change the way that people view arthritis! I had posted their link days ago, but I'm really pretty excited about them, so I had to do it again. My awareness ribbon on Facebook was a blue & red ribbon. One side for arthritis, one side for Raynaud's. My verbage? "Kids get arthritis, too! Autoimmune & arthritis awareness!" The key to changing people's minds is by teaching them that it is an AUTOIMMUNE DISEASE!!! I'm so happy that someone else sees it the way that I do!
And finally... I leave you with a story. Not my story, but a story that has made a huge impact on everyone that reads it. This is the story of Jennifer Schott. Jennifer was diagnosed when she was only about two, and she passed away when she was 26. Without research, without new scientific advances in medications, this would likely be similar to the life that my daughter would have, along with the other 300,000 kids affected by one form or another of arthritis.
The more I read from my books & compare to Emily's previous lab reports, the more amazed I am at how long the Juvenile Dermatomyositis has likely been a factor. One thing that we have never been able to make any sense of I think I have figured out. Before Emily was diagnosed with JA, our pediatrician discovered that her liver enzymes were elevated. All summer and into the next school year we went for labwork every six weeks. Her enzymes continued to fluctuate over the past few years between normal & high. We had attributed some of this to Methotrexate use. Well, I discovered tonight that those same liver tests are the ones that tell when your muscle enzymes are elevated, as in the case with JDM! No one could have known back then, and she didn't show signs of JDM until this April., so I thought. It is likely back in 2007 her elevated counts were due to Mixed Connective Tissue Disease. MCTD comes with its own muscle inflammation similar to DM without actually being it fully. (Disease features) Her labs from this March were really high. Like, someone should have realized Houston! We have a problem! Especially since April started the downward spiral.. the 3 weeks in a 2 month period where she couldn't walk. However, since the liver enzymes could have been due to MTX, I'll let that one go. For now. I'd like to focus tonight on information.
I have found many things this week that I find very handy! The first is from the Arthritis Foundation's website. This link here is the 100+ diseases that are covered under the arthritis umbrella. MCTD, Raynaud's, Dermatomyositis are all included. Yes, really! For those of us that are unlucky enough to have to deal with JDM, we are blessed to have the Cure JM! team. Their site is very informative, and run by all volunteers. This non-profit was made my families that had children & grandchildren suffering from JDM. One amazing mom recently wrote a case study on JDM. I printed out a copy tonight to enclose with the letter that I send to our former rheumy's hospital affiliate. One of the books that I have been referring to lately was written by a few doctors, but also one of the founders of Cure JM! How did I recognize the name? She's on one of my Facebook boards. Another mom, trying hard to help her daughter take her meds on time & still try to have a "normal" life, invented a really cool pill holder.
Of course, it's not just about JDM. Emily has 5 different types of arthritis. The Arthritis Foundation has done a LOT of amazing things to help find a cure, treat, & prevent arthritis, but also to send children affected by these terrible chronic conditions to camp, as well as the Juvenile Arthritis Conference. (You can make donations to the Arthritis Foundation via my personal page for the walk in our area. Now there's another non-profit sweeping the nation. The awesome thing about them is that they are fighting not just for awareness... they are fighting to change the way that people view arthritis! I had posted their link days ago, but I'm really pretty excited about them, so I had to do it again. My awareness ribbon on Facebook was a blue & red ribbon. One side for arthritis, one side for Raynaud's. My verbage? "Kids get arthritis, too! Autoimmune & arthritis awareness!" The key to changing people's minds is by teaching them that it is an AUTOIMMUNE DISEASE!!! I'm so happy that someone else sees it the way that I do!
And finally... I leave you with a story. Not my story, but a story that has made a huge impact on everyone that reads it. This is the story of Jennifer Schott. Jennifer was diagnosed when she was only about two, and she passed away when she was 26. Without research, without new scientific advances in medications, this would likely be similar to the life that my daughter would have, along with the other 300,000 kids affected by one form or another of arthritis.
Saturday, January 15, 2011
Things that I wish I had known in 2008
Today I got the books that I have been waiting for! I haven't started "Myositis and You: A guide to Juvenile Dermatomyositis for Patients, Families & Healthcare Providers" yet. The second book, "A Parent's Guide to Rheumatic Diseases in Children" (written by Thomas J.A. Lehman, M.D.) had some other things that I wanted to focus on before I got completely absorbed in the myositis aspect. I have spent many countless hours researching different diseases that affect Emily, trying to figure out what applies and what doesn't, what to look for, etc. This "Parent's Guide" had a more detailed section on Mixed Connective Tissue Disease than I had seen before, including a section on MCTD with DM. I settled down figuring that it would be all news that I've read already, but hoping to glean a little something new.
Terms to know first before moving on: ANA is the AutoNeuclear Antibody test. They take your blood, they look for a pattern, & then they keep diluting until they no longer see the pattern. The dilution is how they get the titer. The more times they dilute and still see the pattern, that is how high the titer is. The RNP is the test for MCTD. I'm not sure what the RO is.
The first thing that hit me was in the very first paragraph. I realized that I had actually read it before- it just hadn't sunk in. It says: "Children with MCTD are ANA positive like children with SLE (systemic Lupus) but typically have high titers of antibodies to RNP as well." Three paragraphs down is "A high-titer, speckled-pattern ANA is characteristic of MCTD. When the ANA subtypes are checked, children with MCTD are usually RO+, RNP+ & Sm-. Because these children are often RF+, they may be referred for juvenile arthritis." Ok, Rheumy #1 first saw her knowing that she was RF+. Said rheumy knew that she had a high titer speckled ANA+ result in April 2008. She already had Raynaud's showing up then, which is a classic symptom, followed by Scleroderma tightness of the skin. And yet, he never, ever checked for the RNP or even said MCTD until this past June. This makes me a little angry. Had I known that she had MCTD, I'd have researched it. Had I researched it, when her legs first started hurting I'd have looked into it more. She couldn't really seem to tell me where it was hurting from. I suspected it may be muscles, but not for a while & that didn't make sense.
What else hit me was when I read how children present. Apparently, most kids with MCTD don't get JDM. That I knew before, and if I remember right, the actual statistic is something like only 5% of the healthy population gets JDM, and only 5% of the MCTD population (which is almost as tiny!) gets JDM. I guess usually most kids get the features, not the full disease. This had me pondering as well. So, I start looking at typical JDM onset. There are 2 groups. Those that are "unicyclic or monocyclic", who have a gradula onset and progression of the muscle weakness & rash. And then there are polycylic. These kids may have the same start as the uni kids, but they have the hands more affected, the nail folds & capillary abnormalities. She's a poly group. Just as rare is her start- "A small percentage of cases begin with dramatic fever, rash, elevated muscle enzymes, & profound weakness". Rheumy #1 first said "Hmmm, looks like a little myositis may be going on". Until I asked for oral steroids to control inflammation. Then all of the sudden it was "I really feel that she just has a case of strep. I know you just came from your pedi, but I think you need to take her back there in 2 days and have them run a culture". BS!!!!! I KNEW the fever was from it! When you've been through enough stuff like this, you may not have any concrete proof, but you KNOW if it's another happy autoimmune disease finding a new home or it's just bronchitis. I knew that when I mentioned fever he would tell me to take her to our pedi. That's why I went to them first! UGH! This book is bringing all of that anger back again.
The last thing that got me? When it said that children with significant Raynaud's need to keep it under control, and can easily do so with calcium channel blockers. I specifically asked Rheumy #1 for them, and was told to "let's wait and see". I may have to buy another copy of this book and send it to him. He obviously has a lot to learn. Yes, I will let go of the anger again soon. This just made it fresh all over.
Little side note- When I changed my blog address the other night I kinda hoped that it would auto-update in Networked Blogs, but not so much. Just an FYI to any of you bloggers that may be considering a change- you have to pretty much start everything over. UGH! I'm a little bummed, but I know that this is a safer option.
When I started blogging, I never intended to have anyone actually read it. I didn't take a lot of safeguards, and so I used my last name. I try hard not to complain in real life, and I know that I am very blessed despite all of the turmoil around me (like in the post I put up last night!). I wanted an arena to vent, to let it all out. Damn it, it sucks that my little one has to go through so much. It's so unfair to her, and it makes me sad. But I also try to stop and smell the roses every day, take comfort that there's always something better waiting around the corner. I feel like this whole life is just a test; once it's over you move on to your real life, like it or not. But I also think that it's healthy to vent. Through writing I can think things through. Maybe someone else out there will understand how it feels to be filled with so much joy & happiness, yet so much sadness at the same time. My own life- excluding everyone around me- is really pretty lovely. I have fun at work & enjoy my co-workers for the most part, I have a happy household, children & a husband that I actually like as well as love, & my health isn't bad. I don't have a lot of wants or needs, so I'm good there. I have all of my needs met. Who can ask for more? And then I look at how Em suffers, how Kevin will be suffering....... Joy & sorrow. I feel so alive!
Oh! One last thing! There's a new Non-profit group out there dedicated to raising awareness for AUTOIMMUNE ARTHRITIS!!! This is very exciting! Several of us had recently switched more to this terminology because people don't understand. Autoimmune is when the immune system attacks itself. Surely that doesn't happen by Grandma playing too much shuffleboard! While I love Grandma and respect her degeneration from old age, her body is falling apart- not attacking itself. I'm sure that most people would agree that is an accurate statement. When your immune system (you know- the one that keeps you from getting sick) decides to rebel, you really never know what's going to happen, but I can guarantee it won't be a happy party. Just sayin'. Here's the new group!
The "Buckle Me Up!"International Autoimmune Arthritis Movement
Terms to know first before moving on: ANA is the AutoNeuclear Antibody test. They take your blood, they look for a pattern, & then they keep diluting until they no longer see the pattern. The dilution is how they get the titer. The more times they dilute and still see the pattern, that is how high the titer is. The RNP is the test for MCTD. I'm not sure what the RO is.
The first thing that hit me was in the very first paragraph. I realized that I had actually read it before- it just hadn't sunk in. It says: "Children with MCTD are ANA positive like children with SLE (systemic Lupus) but typically have high titers of antibodies to RNP as well." Three paragraphs down is "A high-titer, speckled-pattern ANA is characteristic of MCTD. When the ANA subtypes are checked, children with MCTD are usually RO+, RNP+ & Sm-. Because these children are often RF+, they may be referred for juvenile arthritis." Ok, Rheumy #1 first saw her knowing that she was RF+. Said rheumy knew that she had a high titer speckled ANA+ result in April 2008. She already had Raynaud's showing up then, which is a classic symptom, followed by Scleroderma tightness of the skin. And yet, he never, ever checked for the RNP or even said MCTD until this past June. This makes me a little angry. Had I known that she had MCTD, I'd have researched it. Had I researched it, when her legs first started hurting I'd have looked into it more. She couldn't really seem to tell me where it was hurting from. I suspected it may be muscles, but not for a while & that didn't make sense.
What else hit me was when I read how children present. Apparently, most kids with MCTD don't get JDM. That I knew before, and if I remember right, the actual statistic is something like only 5% of the healthy population gets JDM, and only 5% of the MCTD population (which is almost as tiny!) gets JDM. I guess usually most kids get the features, not the full disease. This had me pondering as well. So, I start looking at typical JDM onset. There are 2 groups. Those that are "unicyclic or monocyclic", who have a gradula onset and progression of the muscle weakness & rash. And then there are polycylic. These kids may have the same start as the uni kids, but they have the hands more affected, the nail folds & capillary abnormalities. She's a poly group. Just as rare is her start- "A small percentage of cases begin with dramatic fever, rash, elevated muscle enzymes, & profound weakness". Rheumy #1 first said "Hmmm, looks like a little myositis may be going on". Until I asked for oral steroids to control inflammation. Then all of the sudden it was "I really feel that she just has a case of strep. I know you just came from your pedi, but I think you need to take her back there in 2 days and have them run a culture". BS!!!!! I KNEW the fever was from it! When you've been through enough stuff like this, you may not have any concrete proof, but you KNOW if it's another happy autoimmune disease finding a new home or it's just bronchitis. I knew that when I mentioned fever he would tell me to take her to our pedi. That's why I went to them first! UGH! This book is bringing all of that anger back again.
The last thing that got me? When it said that children with significant Raynaud's need to keep it under control, and can easily do so with calcium channel blockers. I specifically asked Rheumy #1 for them, and was told to "let's wait and see". I may have to buy another copy of this book and send it to him. He obviously has a lot to learn. Yes, I will let go of the anger again soon. This just made it fresh all over.
Little side note- When I changed my blog address the other night I kinda hoped that it would auto-update in Networked Blogs, but not so much. Just an FYI to any of you bloggers that may be considering a change- you have to pretty much start everything over. UGH! I'm a little bummed, but I know that this is a safer option.
When I started blogging, I never intended to have anyone actually read it. I didn't take a lot of safeguards, and so I used my last name. I try hard not to complain in real life, and I know that I am very blessed despite all of the turmoil around me (like in the post I put up last night!). I wanted an arena to vent, to let it all out. Damn it, it sucks that my little one has to go through so much. It's so unfair to her, and it makes me sad. But I also try to stop and smell the roses every day, take comfort that there's always something better waiting around the corner. I feel like this whole life is just a test; once it's over you move on to your real life, like it or not. But I also think that it's healthy to vent. Through writing I can think things through. Maybe someone else out there will understand how it feels to be filled with so much joy & happiness, yet so much sadness at the same time. My own life- excluding everyone around me- is really pretty lovely. I have fun at work & enjoy my co-workers for the most part, I have a happy household, children & a husband that I actually like as well as love, & my health isn't bad. I don't have a lot of wants or needs, so I'm good there. I have all of my needs met. Who can ask for more? And then I look at how Em suffers, how Kevin will be suffering....... Joy & sorrow. I feel so alive!
Oh! One last thing! There's a new Non-profit group out there dedicated to raising awareness for AUTOIMMUNE ARTHRITIS!!! This is very exciting! Several of us had recently switched more to this terminology because people don't understand. Autoimmune is when the immune system attacks itself. Surely that doesn't happen by Grandma playing too much shuffleboard! While I love Grandma and respect her degeneration from old age, her body is falling apart- not attacking itself. I'm sure that most people would agree that is an accurate statement. When your immune system (you know- the one that keeps you from getting sick) decides to rebel, you really never know what's going to happen, but I can guarantee it won't be a happy party. Just sayin'. Here's the new group!
The "Buckle Me Up!"International Autoimmune Arthritis Movement
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