My Brain Hurts...

I love going to the doctor. I say that in jest, but a lot of times it's not so bad and I end up getting answers to very valuable questions. Like today when we went to see Dr. I and I asked her what the steroids were actually doing when Siobhan was taking them (she's been off of them since the 9th). By the way, how's that for awesome mothering? I agreed to put my daughter on a big medication without knowing what it was actually for. Fail! Anyway, it turns out the roids are used as a high powered anti-inflammatory. Since the inflammation is through her whole body, you need something intense to quell it and get the inflammation to a baseline and then control it from there with other medications. Make sense?

Well, we found out today that the prednisone didn't do all it was supposed to do. In general, Dr. I was pleased to hear that up until we went to Portland, there had been improvement. But she was disappointed to hear that her ankle got so aggravated while out of town and that it hasn't improved much since we've been home. She was also displeased with the lack of improvement in her left knee-the one that started it all. So we're getting more aggressive...more steroids!

You may remember that we was taking oral prednisone along with her twice daily anti-inflammatory and then getting an injection once a week all the while getting a bunch of supplements. But the oral prednisone didn't do the trick. So we're going to take Siobhan in sometime in the next two weeks (TBD) to have injections of a steroid straight into two of her joints-her left knee and the right ankle. Huge bummer. We talked about it at our first visit and didn't want to have to go that route, but it seems like the only option at this point. We have to get her body to a point where things are under control and we can prevent any further joint deterioration. So while the steroids won't make it go away, it will really calm things down.

But then there's more questions....(1) How is it done? (2) What is the difference between this and her weekly injections? (3) What are the side effects? (4) How often will she need them? Here are the answers as best as I know them. (1) We'll take her to Primary Children's Hospital and they will put her under general anesthetic. Dr. I will then inject her right ankle and left knee. The bummer part of it is the anesthetic part. Yuck! Hoping for easy transitions on that front. But they'll so all her blood work at that time, which makes her next blood draw much easier on everyone involved! (2) Aside from the obvious that it's a different medication, this one will go directly into the anatomy of the joint. Her methotrexate shots only go into the top layer of fat in her arm. (3) The side effect of this steroid are considerably less than the prednisone and usually don't last longer than the first 24 hours. There's always the added risk of 'infection at the injection site ' (I feel like I'm giving a drug commercial) and there is the possibility of skin thinning, but both are rare and easy to deal with. (4) At this point, there's no way to know how often she's going to need the joint injections. It's a case by case situation. Some kids get one and never need one again, others have to get them every six months. We'll know more at her follow up appointment about 4 weeks after the shots.

Some upsides from the appointment....Dr. I gave us the go-ahead for Siobhan to participate in any activity she chooses. She kind of told us that the first time around, but she was very emphatic about it. Also swimming. Also, we are switching her twice daily anti-inflammatory liquid suspension medicine to a once daily pill of a stronger medication. It should help a lot more and we only have to give her medication once a day now. Yay! In addition, Siobhan is eligible for two research studies which is cool!

Anxiety...

So the meds, the pain, the swelling, pretty much easy to deal with (for the most part, we all have our days). With the meds, we just make sure to stay on our schedule and then we're done. The pain and swelling, well there's not much we can do, but a rice sock seems to help. The part of all this that's hard to handle is the anxiety. Siobhan hasn't gotten a full nights sleep since we saw Dr. W almost a month ago. We asked Dr. I about it and she thinks that it's anxiety. That tends to lead to sleepless nights for us too. She also started biting her nails. She went from having normal, cute 5 year old nails-aside from her thumbs which are jacked up from all the thumb sucking-to having total nubs.

Long story short, I don't really know what to do. I have no clue how to handle the nail biting. I know that people have put hot sauce or other things on nails to prevent thumb sucking but I don't think that's the answer. Since it's most likely something psychological, is it even something that I should be worried about? I don't know. The sleeping thing though, that is having an effect on basically everyone in the family. Carson and I take turns going downstairs to talk her back into going to sleep or letting her know that she can't sleep with us. When she cries, it wakes up Audrey. When she comes up to our room, she wakes up Ethan. Really, the only one immune to it all is Mr. Will because he can sleep through a bomb going off. Anyway, when you think about her not sleeping, a compromised immune system as a result of prednisone, and the fact that we've been sharing some sort of coughing sickness and we have a very unhappy (coughing) camper.

I don't know what to do....

We've tried a few things. Last night I did some yoga with her after a friend of ours, who has an auto-immune disease as a result of a botched H1N1 shot, told us that it has really helped him. So we tried, but there was a lot of yoga poses that she couldn't do because of her stiff knee (Child's Pose, the frog one). But there are a lot of yoga with kids videos on youtube. We also did some stretching which was nice. After that we did a massage and then to bed. Last night was better. Tonight, we didn't have time for Yoga and stretching as we were finishing up chores, but we did do a back rub which calmed her down. If it works, we'll go with that for a while.