Oh my oh my. This is it – the post where I get to write that modern medicine seems to have come through for my child!! Woohoo! The birds are singing, the sun is shining and I am smiling and laughing like there is no tomorrow. Only there is a tomorrow, and a tomorrow and a tomorrow and now my darling girl is much more likely to be able tackle each and everyone of them much like any other high schooler.
Why am I so elated? Well, as you probably know, we were finally able to start our girl on a daily dose of fludrocortisone (Florinef) on the 26th December just gone. This was a full 12 months after she first became ill. No one offered this alternative to us at any time, it was the result of knowledge discovered online (primarily through Sue Jackson’s wonderful blog) and our perseverance in seeking the prescription from someone who could give it to us. ( In our case a clinical pharmacologist, otherwise you probably need a cardiologist.)
What I knew prior to our girl starting the medication was
a) 97% of adolescents with CFS have blood pressure issues and our girl’s showed up when I asked our GP to do Dr Rowe’s in-office 20 minute test
b) fludrocortisone is used in the US for treating CFS with some success
c) the success rate is apparently low…around 25%…HOWEVER this takes in the whole gamut of CFS sufferers and fludrocortisone is MOST likely to work for younger people who are still relatively active
Ok, back to why I’m so elated (did I mention that??!!!) We had seen some significant improvement through January but knew the real test would come with school starting this week. And guess what??? She is just about through her 3rd full day of highschool…after not attending 1 full day of primary school for the last half of 2011!!!! She is tired yes but that’s to be expected moving to a new school of 1500 and learning the ropes. Yesterday she came home and proceeded to complete 3 hours of Maths homework. I could have strangled the Maths teacher with my bare hands as we are so concerned she will overdo it and relapse. However she plugged on quite happily and got up with a smile and a skip in her step this morning! Oh oh oh!!! You can only imagine the joy in our hearts and the mood in our house. Her dad has been sure to be working in Melbourne this week so he could help me navigate the potential minefield of the first week and so has been here to share the joy as well.
All my life I have been a cautious person and there IS a voice inside me saying ” Are you sure you want to write this post? It’s early days and she could overdo it.” but you know what? I’ve had to guard my emotions so much these last 12 months that right now I just want to scream it from the rooftops and leave next week to worry about itself.
Yes, we need to be careful. She does not have her complete life back for sure and we expect her to miss some school every week to ensure her body can cope with the new activity. She won’t do any sport apart from therapeutic exercise and no music lessons. However compared to the one or two subjects she was looking at being limited to before fludrocortisone, her life seems very rich indeed.
To all of you out there who have so kindly followed our progress, especially those of you who have commented, I send you the biggest possible thanks and hugs. If it were possible to have a party in cyberspace I’d sure be having one!
To those of you still struggling to get a ‘normal’ life back and/or find the answers for your child I wish you the very very best of luck (do investigate Orthostatic Intolerance in CFS if you haven’t already) and sure hope some of ours rubs off on you.
Hugs and kisses from a very, very, very, very happy mother!