Mystery pain

I am driving home from work Thursday evening and about to pick Sydney up from school when I get a call from Doug, "Get ready to head to the ER. Jenson is screaming in pain and pointing to his right leg saying "leg hurts". He won't stand or walk."

I literally had just posted the "perma-grin" blog entry, so to say this call was a major drag and change of events is an understatement.

I head home and Doug has given him some pain medicine which is helping as he's no longer screaming in pain. He tells me, "Mommy, leg hurts" and points to the lower part of his right leg. He has a couple other times when he crys out in pain, and still won't walk. I call the on-call oncologist. She says if he's not screaming in pain she recommends bringing him in first thing Friday morning to the clinic. We're more than happy with this advice as we have no desire to go to the ER and pick up any other germs from there if we don't need to.

Doug sleeps in Jenson's room and gives him pain medicine a couple times during the night. Jenson still says he has pain and won't walk or stand in the morning either. We're hoping it's not another massive bone lesion causing the pain. Please let it not be a massive bone lesion in his leg.

We arrive Friday morning at the oncology clinic. Our oncologist happens to be the one working the floor that day (Yay!). She of course wants to do x-rays. I tell Doug I'll take him (given Doug is pretty fried already from night duty). X-rays are no fun. Lots of screaming and crying... the best part is when they are done.

The results come back pretty quick. It's the best news we could have hoped for as there doesn't appear to be another large bone lesion in either his leg or hip (apparently leg pain can sometimes be caused by an issue with the hip), there isn't a major pocket of infection, and he doesn't have a fracture that is visible on the x-rays either.

The bad news is they don't know what is causing the pain. It could be his new chemo treatment as vincristine can apparently cause significant bone pain, it could be we had tapered down his prednisone from 20mg to 15mg and apparently that can cause "prednisone withdrawal" which can include bone pain and muscle pain, or it could be a hernia. Our doctor tells us to keep a close eye on him, give him medicine for any pain, and to basically watch and see what he does. He does at least stand for her in the office (which is definitely better than no standing) but refuses to walk.

We head home. I decide to put him down like I normally do when we get out of the car, and he walks! He walks for a while in the afternoon and later complains of the leg pain again so we give him more pain medicine. The pain comes on and off during the night, but does seem to be the most intense about 1-2 hours before his next prednisone dosage.

Saturday morning he and Sydney are so happy to have a day to play and for us to be home with our family. They have a blast playing inside and outside, and Jenson is walking all over. The leg pain isn't totally gone, but definitely seems better.

At this stage we're leaning towards "prednisone withdrawal" symptoms and really hoping that is what was causing the pain.

Histiocytosis is such a mystery. And the mystery continues...

Kristin