Saw the clinical pharmacologist (who prescribed Florinef back in December) this morning. It was our first trip since January.
Feel strangely reassured despite the fact he told our girl that her BP was going to be an issue until she was 25 ish….worst case scenario. Basically he said you just need to accept that this is reality and you are going to be able to get through school (not sure how at this rate!!) but not always do everything you want. He accepted my explanation that every time we try to introduce exercise school attendance suffers and also admitted that if he were me he would be taking his child to see anyone who might help too. However, he remains convinced that all our girl’s issues stem from her BP issues rather than the other way around.
He knew of the physiotherapist I’m taking her to see next week and that his theory is that nerve issues are the culprit. The CP said he thinks the theory is wrong but that he was very happy for us to see him as he has helped people with the exercise routines he’s developed. (More about this after our appointment next week. As I’ve mentioned before, our girl has clear nerve tension issues that we want to tackle in the hope it will enable her to do muscle building exercise with less payback.)
Anyhow, the upshot was that we are adding Midodrine into the mix of medications in the hope it will get our girl back on her feet. This is a medication that has to be ‘approved’ for dispensation in Australia still…because there has not been much demand for it. Yet. There may be a lot more soon as it was evident that our CP was seeing a lot more teenagers like our daughter as word is spreading.
So, we will probably give it a try. Our precious girl just wants to get back to school – as she told the doctor this morning.
So why do I feel reassured? I think it is because I feel less like we are being left on our own to muddle through and more like we have somewhere to go when things aren’t working? I also felt like all the right questions were asked this morning and things seemed manageable. In the meantime I’ll keep working on acceptance and don my penguin suit again. Smile and wave boys, smile and wave! : )