Bisphosphonate Therapy

We were so excited when Noah got his cast off after having his fractured leg, but unfortunately we were a little over excited, as an x-ray showed that his fracture actually hadn't healed properly yet, despite being in a cast for over two months.

Every 6 months or so we see a specialist who deals mostly with children with Cerebral Palsy.  When I showed him the x-ray he pretty much freaked out (and freaked me out!) saying that his leg still hadn't healed and that he shouldn't be swimming at school because his bones are so fragile (he could tell just by looking at the x-ray and seeing how thin they were) that he could get a broken bone, just by being handled in the pool.  Noah's physio and OT were with me at the appointment and they both told me to come back in the next day and they would make Noah a backslab for his leg. It was a pain to have it on again, but it was much better than a full cast as we could take it off to shower him.

We have been discussing whether Noah needs bisphosphonate therapy with his paediatrician, but the doctor also said that there was no need to wait another 6 months to have another bone density scan done, as just having three fractures and seeing how thin his bones are on an x-ray is enough evidence to have it done.  Bisphosphonate therapy increases the bone density and to have it you need a lot of evidence to justify it.  I'm not sure whether it's because of the cost of the drug, or because of the side effects of it, but I'm thinking it must be both.  The pharmacist at the hospital gave me some information about the medication and in the USA the cost was over $1000! It's no wonder the government want a lot of evidence to show that you really need it. Noah couldn't have it until the statewide medical council had actually met and approved it for him.

With the pharmacist I pretty much had to sign my life away.  Noah couldn't have it unless I signed a piece of paper to say that I understood that there may be long term side effects and it hadn't been tested in children yet.  It's always scary having to make big decisions and not knowing the consequences of it, but I just knew that Noah couldn't keep going on getting fractures, so felt like we really had no other option. I told the pharmacist that unfortunately for us we don't really need to look very long term as Noah has already exceeded his life expectancy. 

On Friday we headed into hospital to have the IV infusion done. I was expecting that it had to run over a few hours, as I was told that it was a half day admission, but the half day was spent just waiting for things to happen, which is always the way when you are in a busy hospital. 

We were lucky to have one of our favourite nurses looking after Noah for the morning, and we had lots of visits from all the nurses who knew us so the time went very quickly. Once the doctor finally got the canula in (Noah is very hard to get a vein from), we only had to wait for another 20 minutes while it ran through. 

We were sharing a room with three other people, and we were very glad we didn't have to spend the whole night in there with them - or one in particular.  We are usually very lucky and get a single room, but there was no need this time when we were only in for a few hours.

I don't really know much about the medication, but we were told that Noah 'may' experience a few side effects including having cold/flu like symptoms, swelling, puffiness, fever, and vomiting etc.   Noah is on so many medications that I have stopped looking at the side effect list that comes with them, as it just worries me too much, and I didn't really expect that he would actually get any short term side effects from it.

When his treatment was finally over, we were excited to go and visit Simone and her little man 

who finally has a gorgeous name - Flynn Charlie Stephen. 

At 4am the next morning, Noah woke up with a high temp, wanting to vomit and having lots of seizures.  The next morning his face was also very puffy and also his eyes.  We dosed him up with panadol for the day, but the following day things were the same, so while visiting Simone (again! I'm sure she's sick of me!) I thought I'd pop into the kids ward to see what they thought. They asked me to bring Noah up as they really wanted to check him out, so I headed back up to the kids ward with him.  They didn't seem too worried about him but gave him another med to try to get rid of some of the fluid, but he is still the same today. 

It's awful seeing him feel so unwell, especially when he was feeling really well before the treatment.  Hopefully it will only be another day or so and he will be feeling okay again. Fingers crossed that the side effects will all be worth it, to have strong bones again.