Hello all. I do hope these post Christmas days find you comparatively well, happy and relaxed. We have had a lovely Christmas with my in-laws, and the sun has mostly shone which I adore! Our girl has had one lovely beach swim and we hope for more.. Forecast is good!
I wanted to update you all on the latest developments with doctor visits. As I’ve mentioned before, we’ve been waiting on a cardiologist referral from our CFS paediatric specialist that never turned up and our lovely GP suggested we go back to see the Clinical Pharmacologist we saw back in August as she knew he’d just prescribed Florinef (the blood pressure drug we’ve been keen to try) for another adolescent patient of hers. Actually, in person, he told us he thinks he probably prescribes more Florinef than anyone in the world…an interesting claim! As a clinical pharmacologist he says he’s come to CFS from a different angle. He treats many spinal injury patients who have similar blood pressure issues apparently….
Firstly, seeing him again was our Christmas miracle as the poor man stayed late on the final Friday before Christmas in order to squeeze us in and fielded a phone call about his ETA from his wife….and then went off to advise a junior doctor dealing with a dying man after us. So after all our waiting I felt very appreciative…especially as he prescribed the Florinef!!! Woo hoo! He described it as ‘the less effective drug to try’ and sent off the application for Midodrine which he says is more effective and I understand is often given in tandem with the Florinef. (Canberra has to approve dispensation of the drug he says because demand is not high here)
He went into detail again about building up exercise tolerance as being key to best results and I believe prescribed the Florinef after my blunt description of how our daughter simply refuses to follow a routine as it makes her ill afterwards. He could clearly see she needed chemical intervention to help her on her way. In summary this is what we learnt:
– lying down for a period immediately after exercise helps her body return to a happy state sooner because while she’s exercising her muscles are pumping the blood for her and that stops when she stops…
– she would have felt particularly good when boogie boarding last month because she had a very tight wetsuit on that was helping her blood vessels constrict! (Unfortunately that wetsuit really is too tight to be comfortable so we need to get a new one)
– the doctor said ‘ this is a condition you will have all your life but you will improve around 18 years of age’ In my opinion this is because he believes Orthostatic Intolerance IS CFS. (He doesn’t claim to know what triggers it) Is he right? I must ask him next time if that would account for inability to reproduce VO2 max output rates on a second day…..
– a few rapid squats when she feels bad (anything that pumps legs to chest basically) can help – and does, she has employed this frequently since seeing him and says it works.
– for those of you interested in the minute details of his attitude to Florinef: he doesn’t think excessive fluid and salt intake are essential, he strongly recommended not bothering with a gradual upping of dose from .025 but starting on .1 Our daughter heard my extensive discussion with him on this (including my tendering of Dr Rowe’s report and his perusal of it) and refused to start on one tablet because she was fearful of side effects (the disadvantage of debating these things during doctor visits) She took .05 for two days then one tablet yesterday. So far no change either way.
So, at least we are hopefully treating her main symptoms…..it’s very exciting! We have a follow up appointment on January 11th. I can’t tell you how glad I am that we got that appointment in before Christmas to give our girl the best chance of starting high school in her best possible health. Please please let the medication work……. We have started one minute on the exercise bike and will see how that goes. It makes sense to us that muscle strength is very helpful. I’m working on that myself too at the moment for other reasons!
Meanwhile it’s just lovely everyone being on holidays and everyone going at their own pace.
How’s life with at your place?