What is Lupus
Systemic lupus erythematosus (SLE or lupus) is a chronic, potentially debilitating or fatal autoimmune disease in which the immune system attacks the body's cells and tissue, resul...
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Really thinking that the Mystery is Solved
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At this point, I really am thinking that my still undiagnosed 12yo DD has lupus. I don't have any lab evidence (yet) and I know it can take a while. The biggest clue to me is that she is now consistantly flaring from being out in the heat and/or sun exposure. Poor thing was really suffering after we had been in the van for 2 hrs and then she went to the pool. She did use sunscreen, so well that she had no burn at all. But, it was 10 min into being at the pool that she texted me saying was hurting, but still okay. She said that the cold water lessened her pain quite a bit. So, I told her to stay in, and LMK if she wants to come home early. She didn't call me. But, for the next 5 days, it was horrible. She was so bad by day 3, that she could barely make it to the bathroom, she looked as if she would fall down, and while getting her Doxy, she wet her pants. I felt so bad, and figured we would keep an eye on her about that. She said she just needed to go all of a sudden, like no warning, and couldn't walk quick enough with the pain. She said it was mostly pain, although some weakness which gave her the stumbling walk.
Before this really bad day, I did take her back to the ped to test her for Celiac, and anything else the doc with a new perspective could do for us. The B vitamins aren't helping her anymore. So, I don't think it is a deficiency. Her appetite has noticeably lessened during a flare, which is a new thing. She is in good spirits about the whole thing, she is more positive than I am. Not about that the drs will ever figure this out, but that it will just disappear one day. She doesn't want to go in the van at all, for fear that while she is feeling better, she will get worse. And, we can't fix the AC. Anyway, the ped who isn't our primary, but has seen her before, took the history again. She tested her for the Celiac, a new CK draw since it was low, her thyroid, and some other things. Ibuprofen is the only thing that helps and the Neurontin was causing her to see things, so she won't take that anymore. Too bad considering the cost. But I can see why she won't, and it doesn't help her pain anyway. She is also worse in the AM again, on her mediocre days. When she is in terrible pain, there doesn't seem to be a difference, but when she is getting better, it is noticeably better in the afternoons. She has to take cool baths at this point. That also helps. I have her wetting her tshirt (when we had a long trip on Sun) in the van to as to avoid a flare up. IT seems to help. So, now I am wondering where I can get a cooling vest. The nurse didn't know, and scheduled us to see the doc on Monday. Probably to talk about the test results, and figure out our options. Also, to do an ANA test, or if they already did one. She tested for quite a bit, so maybe some of that is already revealed. Is it reasonable to ask the dr for forearm crutches for her worst days, so that she can make it to the bathroom safely, and in less pain? She looks really unsafe, and we had to decide if my Dh would carry her into the church if the trip made her worse, even though we were cooling her down. Or to just not go. She really wanted to go, and the cool tshirt seemed to really help. So, we didn't have to worry about that. But, she is nearing 100 lbs, and so carrying her is unrealistic for me anyway, and would be embarrassing for her. Her Daddy could do it, but then how do I explain THAT to family, that we decided to come with an obviously disabled child? I wouldn't take her if she was sick, but is that sick or just disabled? If she has lupus, should she just stick it out on the couch, or should she keep moving even just a little like it is arthritis? IcyHot helps her, which is odd for someone with "no evidence of arthritis", but it does. The ped put her on the Doxy, JIC the RMSF positive tests were correct, per my theory that she got it from a dog bite. And, ordered the 4 vials of blood. I know there was a sed rate in there as well. So, I guess we wait on results on Monday. Thank you for reading this long scattered post. If you have any answers to my questions, please jump in. Kymberli Posted on 07/03/09, 12:07 am |
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Right now it looks like your going through an adjustment period with her pain and symptoms. So before you take on any major ordeals I would get to a point where she feels itleast comfortable getting around. Once she can comfortably get around, then start off slow and take short outings out of the sun and heat. I know it may be no fun for her but will be better for her for right now, itleast physically wise. If the heat is making it worse I would suggest indoor activities. Some churches have those golf carts to pick up people that can't get around well. Check with them to see. Its good she is getting the testing done. There are also other conditions that heat can exacerbate. She is sick right now but I wouldn't call her disabled. With treatment she will get better. Don't worry too much mom, I know it is hard not to as a mom myself I can understand. If she really wants to go to church is there anyone you know there that can drive her so she isn't in a hot car? I just feel for her because I know how sick that would make me. Also, you can still have arthritis and not have the swelling associated with it at first. There are even people with RA that didn't have the outward swelling. I do but everyone is different. I still think there is some things you should rule out but it does sound a little like Lupus, but there are other conditions that can get worse in heat. 
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Hi,
Is it possible to take your daughter to a childrens hospital to actually get admitted to figure out what is wrong with her? If she is in as bad of shape as it sounds, I would absolutely look into taking her to a mayo clinic type hospital.....If she had lupus one of her Lupus panel tests would be positive. Either the C4 level would be low, a positive ANA, etc. Something would should show that there is an auto immune response going on (like inflamation which can be monitored with certain blood tests). There are so many different things that can all cause lupus like symptoms. Epstein Barr virus is one of them, lyme disease, and also certain metabolic disease's can cause these symptoms. There are specialists (not many) that are neurologist who deal with kids that have metabolic disorders and since you said that her CK was low, that is an indication of a metabolic problem..You may need to look into that area more. Its not very common for kids to get lupus. I also dont believe it is common for Icy Hot to work for lupus pain (at least not in my case and I havent met many others who suggest this). You said she got a dog bite....Has she been to an infectious disease doctor yet? It is so frustrating not getting answers and worse when it is your child. I think you should start to look at the metabolic disease's and see if any of them jump out and have some of her symptoms. I know for a fact that one of them gets worse from heat and over exhurtion and the CK level may lead you in the right direction. I also know that you can find out if a child has a metabolic disease for sure is by a muscle biopsy. I feel really bad for her since I was sick as a kid., It stinks......... Please keep us posted, Melissa PS- If she is not able to walk and if she is not able to tolerate the heat I would keep her out of the heat and not take her anywhere where she has to walk. Clearly something is going on and until you find out I personally wouldnt risk it.... You
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I would definately take her to a neurologist, he can check her muscles out completely.
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I agree with what Allison and Melissa said. There are numerous conditions that get worse from heat or sun: porphyria, Stills' Disease, etc. It seems from your description that it is the HEAT and not the sun that is causing the problems. I think most of us would agree that taking a cool bath or shower would NOT help a flare from the sun.
As for church, have you considered renting a wheelchair for her? Carrying her is a bit too weird and will draw attention to you, but people have wheelchairs all the time. As for crutches, I suspect that using them will only make her shoulders and arms hurt a lot the following days after using them. I'm not sure I understand WHY she needs crutches. Is she having pain when you walks? Or are her legs collapsing? Re the Neurontin: all drugs have side effects. But a huge portion of those side effects disappear after a week or two on the medication. If Neurontin eases her pain, then maybe she should continue on it at least several weeks to see if the side effects go away. If it wasn't helping her pain, then there's no need to go through that. Bathroom issue: there are now Depends for big kids and you might want to get some of those for the times when you take your daughter out. Far less embarrasing that peeing on herself. I suspect that the situation where she wet her pants may be psychological in origin. I'm not saying that her other symptoms aren't real, let me make that clear, but it may be that your daughter so fears falling down or embarrassing herself that she doesn't go off to the bathroom when she really needs to. And of course she wouldn't say that to you, she probably wouldn't understand the mental part because she's a child. But fear makes us do weird things and there's little doubt that this child must be terrified. Any child would be. So I'd get some Depends and a wheelchair and try to keep things as normal as possible. I still believe that seeing a doc who specializes in genetic diseases may be the direction you should go in. Your daughter has had negative tests for antibodies (except Lyme), normal sed rates, and those tests just would NOT be normal if the cause of her suffering was inflammatory. Inflammation has certain BYPRODUCTS. And those by-products show up in sed rates and C-RPs. That leads me to believe that your daughter does not have lupus or anything else in the inflammatory category. Even something INFECTIOUS would cause the sed rate to go up. You just can't have that level of bodily distress from that group of diseases WITHOUT A TRAIL OF ANTIBODIES. This is not a situation where we are waiting for the disease to get bad enough to have tell-tale symptoms. Your daughter is VERY SICK. I'm so sorry that she's sick like this. Tracy
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I sure hope the bloodwork that was taken will help to figure out she has. She is definately very sick and this must be hard for you to watch your little girl like that. Sending prayers.
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Thank you all so much. She had been better for a few days. Totally normal type of better. It is so weird. Last night, her legs started to bother her, but this AM, no problem, or so she says, as we were helping a friend get their new house worked on (they have a lot of renovation to get done), and I think she wanted to help. When she got done there though, she took a nap on the way home, and both her legs were NUMB for several hours (probably 4-5). At first, she assumed bad position, as she always is hoping, and after that much time and walking around a bit, no help, must be that neuro thing.
The neuro wasn't terribly helpful, so not sure he would help us with her muscles. And, he is reputed to be a good neuro. I have considered taking her into children's when she flares badly again, but it is never the right time (weekends aren't good for any hosp), or my DH is gone for his overnight run (which leaves me with 6 other children to try and find childcare for, including a nursing baby). I am getting a form from Shriners in the mail to apply there. Our good children's hospital is where the rheumy that says she was making this all up, and didn't ever call us about the neuro appt. I believe that they have blacklisted us. We didn't sue them or anything, just transferred for a second opinion with the other child. And, it is too fresh in their minds. The other close (90 miles)children's hospital isn't very good. I guess I could go to St. Louis (4 hrs), just run off with her and the kids, as an emergency aka can barely walk, and get the kids to grandma's, to take her in there and see if they will admit her and get to the bottom of this. She is really good about the testing, once she realizes what is going to happen. Some tests, like at the eye drs, was hard to explain, so she tremored, and after they blew the air in her eyes, and it came back odd, she was fine the second time. She just thought those things were going to poke her in the eyes. I think I would have had the same reaction. Her eyes are fine, BTW. I don't consider her "disabled" such like I should try and get her the adult disability Medicaid (although it would help with all these bills), but I don't know that she is "sick". Her testing has all been normal so far, so that wouldn't indicate a sick child. But, on her worst days, she can be unable to move around, therefore "disabled" for that day. Luckily, she was at home when she wet herself, and it hasn't been an issue again. She really just didn't feel the urge and it was too late. Since her legs have been numb, I wonder if this was a neuro symptom, to have that lack of feeling to go. I need to write more of these things you all say down. I would love to be able to stay out of the heat myself, and I think you are right, it is heat not the sun causing the issues. I would love to have her just lay on the couch when she is trying to get better. But, sometimes it is better to go off to the dr when this happens (which requires both uncomfy situations for her), or she had plans, or we have to get milk and necessities and can't plan around her pain very well. I would love to be able to stop my life for her, but I have a husband that is gone over 70 hrs a week, and 6 other children to tend to. I have food I have to get from the store. I have tried to accommodate her as much as we can. It is just for those unavoidable situations that I am trying to cope with, and keep her as normal as possible. I don't want her to get depressed (as I was prone to as a teen for different reasons), as to have to inconvenient the whole family, or to deny her things she wants to do. KWIM? It is hard enough to be prepubescent, without all this cr*p. Thanks so much for your help. Kymberli
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Hi,
There is a metabolic (mucle) disease specialist in Atlanta Georgia. People take their children there from all over the world. He is very very well known. Can you see if she had a metabolic panel done or a CPK test done? If not, that is the first step of seeing if a possible metabolic disease is present. It would be abnormal in most cases. Regular neurologists do not know much about metabolic disorders. There are only a few specialists in the USA for these diseases. You may want to check out the muscular distropy of america website which gives alot of information on all the different disease's, symptoms and local doctors. Read the symptoms...they have support groups where you can speak to other parents. Maybe some of them have had the same experience you are having with your daughter and they can tell you the tests to request. Heat can be a trigger of MD's. I agree that you really wont get good results at an ER unless the symptoms are apparent. A long wait, lots of money, for them to send you away with nothing. A mayo type clinic/hospital would be the best option if you were considering taking her to one. There are so many different things that can be causing her issues. Epstein bar virus can make a person feel fine one day then horrible the next. If you can find a very good pediatrician that will do anything you ask (like mine does), figure out the tests she has not had (lyme disease, CPK panel, EBV, etc....You should have copies of all her bloodwork) and have them run them. See if everything possible comes back normal. If they do then there may be something else going on...whether it is anxiety, depression, wanting attention, stress, its not really possible to know what your daughter is feeling especially when she has 5 other siblings. She may not want to create a problem by telling you how she feels. I am NOT saying that she is MAKING THIS UP. But, emotions and stress can affect your body in very negative ways for some. I am one of them. Keep us posted and I really hope you get answers soon, Melissa
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Her CK was low, which I read is the same as CPK. I may need to look that up again to be sure. That is why they are redoing it. You say that it can indicate metabolic issues, but others said it could be an indication of autoimmune issues. Hmm. It was my impression, and what I read, is that unless she was at risk for alcoholism or RA (as an adult), then low values mean nothing for a child. However, it also said that it was a measurement of the food to the muscles, or something like that. Again, I need to look it up again.
We have gone over all the psychosomatic possibilities, before we ever went back to the dr for the second time after the weekend. Her counselor was releasing all three girls, and only wanted to keep her because of the pain issues. I had gone over if there was something bothering her, and we went over that. She was very honest, IMO, and her reasoning, was that she didn't have any issues, and if she was going to have pain from stress, it would have happened over a year ago, when our world was turned upside down by the baby's health issues, and my son being placed in a treatment center, when all my kids are all very close. Well, until he became a teenager. LOL She has 6 siblings actually, and although we should probably talk more intimately, we are together all the time since we homeschool, and I just don't think that it is psychosomatic. I was a VERY stressed out teenager, and I never had pain from it. And, if I did, it wouldn't come and go, I don't think. She doesn't seem to have pain when things get crazy around here, as it is apt to happen with 7 young children. This all started when my son appeared to be getting better. He had one bad time right after, and he has been perfectly fine ever since. SO, sympathy pains are unlikely. I am not being defensive, believe me, I would love for it to be something that simple, as stress. We can do stuff to alleviate stress. IF this is something like MD, MS, Lupus, or RMSF that was left untreated too long, and there really isn't much we can do about it as long as we don't have a diagnosis (or not for a while anyway), and it is uncurable, then THAT is far less desireable. I probably have Fibro, and that only flares during stress. I know what that is, and how that feels. Fibro was crossed out already. She actually told the newer lady dr that she feels like her joints are being squeezed tight, and that is how her pain feels. She also said that as long as her legs are bent and no weight, the pain is nearly gone. Not sure if that indicates anything, but it was interesting to know. Numb legs for 4-5 hrs can't be psychosomatic, can it? The neuro issues make me doubt stress causing this the most. I wish we could just destress *her not so stressed lifestyle*, and have her pain free. I just read about a family of 15 that have no electricity, phones, or running water. Now THAT is a stressful lifestyle. They didn't grow up Amish or anything, but CHOSE to move there with 9 children. Now, THAT would be a lot to put on a kid. LOL TO each his own I guess. Kymberli
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