Pamidronate

Since Nick is now considered in the "danger zone" of OI it has started to make life more scary. Especially since he is walking now. If I could earn a nickle for every fall he takes daily I'd be rich, and fast! So with that being said it prompted me to start to really push for him to start on a medication called Pamidronate, also know as PAM in case some one my facebook friends have wondered. PAM is an infusion that he would get probably every 4-6 weeks. It takes around 4 hours to administrator. It won't completely stop him from breaking his bones, but will help him build more bone and mass so that he won't break as easily. Around the middle of October we took him to a doctor that specializes in giving kids this medication. This appointment was long awaited. Considering I scheduled it in June. I was very nervous about this appointment. Because we had been turned away from this medicine about three times in the past. Since Nick had a fracture in August, I believe it pretty much opened the gate for him to get a yes answer to start. Some blood was taken to make sure his vitamin levels are perfect because this medication takes a huge drop in calcium among other vitamins. Also, while we're talking about calcium. You should know that Nick doesn't lack calcium. He lacks collagen. Which is what give bones it's flexibility. I'm sure that his levels are normal, since he's fed fairly healthy. His hair and nails are growing at a normal level. Unfortunately I have been waiting for the blood work results for nearly four weeks. What was said to be only a two week waiting period. I have made several calls and no body has called me back. It's starting to get very frustrating. But I also wonder if since I haven't gotten a call that means his levels are normal. And won't need to start on a supplement.

I think Nick needs to start this medication soon. Because like many OI children he is starting on a 6 week break cycle. I'm certain that he has a fractured finger. I made the call to the Orthopedic doctor yesterday and he said that since it's not bothering him we could just continue with Motrin. He said we didn't need to make the long trip to Pittsburgh for an x-ray. As many of you know I refuse to take Nick to the emergency room for breaks that are not an emergency. It's just too much of a possible abuse accusation that we just don't need to deal with again! Going back to break cycles. Looking at the calendar it's been over 6 weeks since his last fracture. Something that is common to see in the OI world. I plan to call the doctor at Children's again tomorrow and explain to them (again) that we need to schedule this soon, before we're in for a serious break! We have been lucky that he has not suffered any serious breaks. Obviously any fracture is serious, but we haven't had to have anything set. When he fractured his clavicle that was probably the most serious of all his breaks. We were told that it would possibly need set, but he did not need to be.

I meant to post a blog about Nick's last fracture. The last week of August we took Nick to meet the Orthopedic doctor at Children's hospital in Pittsburgh. Let me say that the doctor and Nursing staff was top notch! They were just fantastic and very accommodating to us. Which really takes some of the pressure off us. When we went in they wanted some x-rays because it had been several months since his last set. The x-ray techs were super nice and allowed me to do all the positioning to take the pictures. Nick was awesome! I assumed he would be his normal "leave me alone" self, but I was shocked that he laid so still and let us hold an arm of leg still! If you know Nick, you'll know that is very rare! We took the pictures and went into another room where another Nurse pulled up his x-rays and asked if I wanted to view them? Of course I won't turn down a learning experience, so I started to view. He wanted to explain to me how to work the computer program to read the films. But I had already known how to do so because I had a copy of older x-rays at home on a disk. I took some pictures using my digital camera so I could upload and show my OI group. While doing so I noticed a fracture in his tibia (lower leg). I kind of did a double take! Because I was totally shocked to see this! Here I thought we were on a long break free cycle, he had been fracturing this whole time! I was totally flabbergasted because here he has a fracture, but never complained! He never stopped doing things like jumping up and down in his bed, or crawling, or practicing walking, or even during changes of clothes and diapers, did he ever wince to show that his leg was in any sort of pain. Even the Ortho doctor was shocked and said I can see that this is not a bother to him at all! It was a total bummer to me. Because I thought we were on this long stretch of being break free.....Did I jinx it by talking about it? It really depressed me. Because how could his mother not know something was wrong? After talking about it with my cousin and mom's in group I realized that this is just how kids are. And he didn't show any signs of distress so I shouldn't beat myself up over it so much.

That being said since he had the fracture in his tib and now the finger, he's again not showing signs of distress. He has a very high pain tolerance. He's gotten shots before without a wince. He's just a really tough kid. Which makes me some what proud and some what nervous. I have to wonder how many more fractures he has that we cannot distinguish because he is not giving signs. I wish I could buy an x-ray machine so I could see more clearly what is going on with my little boy. But for now I just pray that we keep on with out OI journey and he keeps being the tough kid he is, like the many, many other kids.

Thank you for reading my blog. I'll keep you updated on when PAM will be flowing! Happy thoughts for one stick! :) Farewell