My girls had their second infusion of Pamidronate one week ago today. Pamidronate is a bisphosphonate intended to help strengthen bones that are weakened by OI. We went to our local children’s hospital this time around, but I think in the future we will head back to the hospital with the nation’s leading OI clinic (in Omaha). We will also likely go there for Violet’s clubbed feet treatment, since the nation’s leading OI orthopaedic surgeon can likely do this treatment for her (more on this later)! These infusions will be given once every eight weeks until the babies are a few years old, and then the frequency will lessen to once every 12 weeks. They’ll receive these infusions for approximately five years. Prior to their first infusion, they broke a total of eight bones in 5.5 weeks. Since their first infusion, they have each broken only one bone (a femur). We are really encouraged by these results and hope our lucky streak continues!
Layla is in the first picture below. She did very well with the infusion. We have them insert the IV into their scalp in order to avoid anyone having to hold them down to insert an IV into, say, their arm (because a bone could break from the pressure). She obviously was not thrilled about having a needle stuck in her head, but she calmed right down after it was over. The first IV fell out, so they actually had to stick her twice! Poor girl.
Violet was much less happy about the whole situation. She cried inconsolably for at least 30 minutes after having her IV placed, and she started to make me paranoid that she had a fracture. (We have the option of having a port placed in their chests to help this process be less traumatic, but that’s not something to be taken lightly, so we’re in “wait-and-see” mode.) My dad joined me for the appointment because my hubby had to work, and Violet eventually fell asleep on him. When she woke up, she was all smiles, thankfully!
It takes a little over three hours for the infusion to be administered. Side effects can include flu-like symptoms, but thankfully our babies have not suffered from any side effects at all so far. We are very fortunate that this medication is available to them! The next infusion will take place around the first week of March, and with any luck, we will be fracture-free this cycle!