Sunday, August 15, 2010

Its not just growing pains!!!!!

And if I hear one more person tell me "My sister's boyfriend's cousin's best friend's ex-boyfriend's daughter had the same problem and it was just growing pains" or "It sounds like its just growing pains...rub her legs and give her some Motrin and she'll be fine" or anything like that, I just might loose it. I've had a kid with growing pains. I've sat up at night rubbing legs and giving Motrin. And yes, I know that growing pains hurt. I don't doubt that at all. But, I know that there is a big difference between growing pains and the pain Ella is in when she's having an episode or a bad day/night or whatever you want to call it. Anyone who has seen her when she's hurting will tell you that it is not growing pains. I've had EIGHT different doctors say its not growing pains. I know I shouldn't let it bother me. I know that people are just trying to be helpful and reassure me. But, its frustrating and annoying. I WISH it was just growing pains. I wish it was something that simple. But its not. Unless you've actually seen her in pain, you can't really get it. I understand that. I can sit here and say that she's in a lot of pain, or even that she's in excruciating pain. I can say that she can't put any weight on that leg or bend her leg without obviously being in a lot of pain. I can tell you that even once she's able to go back to sleep, she doesn't sleep well and every time she moves in her sleep, she cries out and wakes up from the pain. But, unless you actually see it, you can't really fully grasp it I guess. Its absolutely heartbreaking. And it really, really sucks! And no, as much as I wish it was, its not just growing pains. The doctors have given me several reasons why it cannot be growing pains. The main ones are that growing pains don't effect the joints (and her pain is always in one of her knees or her right ankle (its mainly been her knees, but she's had it happen to her right ankle a couple times) and growing pains only happen at night. They don't cause problems during the day. And Ella has had problems during the day. It usually starts after she's been sleeping a while (either at night or naps), which is one of the reasons they are thinking its probably arthritis. A couple of times she's started limping in the afternoon and then it gradually got worse and worse. Growing pains also don't cause swelling or cause the area to be warm to the touch. And while she doesn't always have noticeable swelling, the effected knee/ankle is almost always warm to the touch. I wish it was growing pains. I guess that might be why it is bothering me when people keep saying that's all it is...because I wish that is all it is. Its like a reminder that something else is wrong. I really don't know why its bothering me so much.

So, if you haven't guessed by the vent above, Ella is having a rough time again. Thursday and Friday she woke up in the morning and after her nap and was limping. She said her knee and ankle "felt funny" and hurt a little. She could still walk (with a limp) and it didn't slow her down. The limp gradually went away and I didn't think much of it. Up until then, it had been about 2 weeks since she had any problems. I'd convinced myself that it was just a virus or some fluke thing and whatever it was was over and done with and a thing of the past. Then when she started having problems I knew deep down that her problems weren't wasn't just some fluke thing that had come and gone and was over with. I just didn't really want to admit it. Then yesterday after her nap she woke up with a pretty bad limp. Within 30 minutes or so, she was in pain and couldn't walk on it. I gave her Motrin and she hung out on the couch for a couple hours. Then she was able to start putting a little weight on it and walk around some. It gradually got better. By the time she went to bed she had a little limp, but she was playing normally. Then around 4:00 this morning, I heard her crying. I went to get her and Lilly met me in the hallway. She said that the cat woke her up and then woke Ella up (the cat has been beyond obnoxious early in the morning lately!) and Ella got up to come get in bed with us and her leg is hurting and she fell. Sure enough, Ella was laying in her floor about 2 steps from her bed. She said her knee and her ankle hurt. They were both a little swollen and warm to the touch. We snuggled on the couch for a while and she said "Why does my leg keep hurting? I don't like it when it hurts". I kissed her head and told her I didn't know why it was hurting and I didn't like it either. I don't know why she's hurting and it stinks. I wish we at least had answers and knew what was going on. But we don't. And it stinks. After a little while I took her to bed with me and she fell asleep pretty quickly. She would cry out and woke up several times and I didn't get much sleep at all after that. She hasn't had a really bad night like that in a while. It was like a big slap in the face. Whatever is going on isn't a thing of the past...its still going on. So now we keep searching for answers. Her pediatrician had told me that she would be happy to refer her to a pediatric rheumatologist (since the rheumatologist she went to is a jerk...and admitted that he isn't very familiar with pediatric issues and there is a big difference between rheumatoid arthritis and juvenile rheumatoid arthritis (although we don't know that's what's going on...all signs are pointing that way, but it could be something else...we just don't know)), so I'm going to call the office tomorrow and ask them to do that. The closest pediatric rheumatologist is in Durham or Chapel Hill..but that's okay. Everyone agrees that it needs to be our next step in figuring all this out, so that's what we'll do. And hopefully we will be able to get some answers and hopefully some ways to help her and prevent it from happening. Its absolutely heartbreaking to see your child in so much pain so often and not be able to do much at all to help (warm baths seem to help more than anything else. When she's hurting she spends a ton of time in the bathtub).

I feel somewhat better now that I've vented like this :) There are a lot of people who are concerned and worried about Ella. I know there are a lot of people who are praying for her and praying that we will get some answers and some ways to help her and it means so much! I really do appreciate all the concern. And deep down I know that even the people who keep insisting that its just growing pains are just trying to be helpful and make me feel better and calm me down. I know I shouldn't let it bother me and I just need to let it go. :)

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