Yesterday, on Day 11 of the little pill, our girl CHOSE TO WALK TO THE PARK! And………………..BACK!
There will be those of you reading this who will truly understand just how momentous an occasion this is.
We were there to meet some good friends and the kids played a huge game of hide and seek and other variants.. AND OUR DAUGHTER IS NOT CRASHED TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This is truly one of the happiest days of my life. I am trying to contain my excitement…..it’s not working so well. Any improvement is just so so welcome. She is certainly not back to 100% – her head is still foggy and her stomach sensitive but she is less tired. All this is most likely due to the 1 tablet of Florinef (fludrocortisone) she is taking every morning, along with salt tablets and copious amounts of liquid all day.
We see the clinical pharmacologist again next Wednesday. Perhaps with a higher dose she will have her life completely back? For now I am just happy to absorb the joy of the first improvement we’ve seen in 12 months. The question of why this pill wasn’t offered to us 6 months ago, and what else I can do to raise awareness, is for a later date. Suffice to say, our girl fitted the group most likely to be helped by this drug (according to information I read online out of the US) as she was young and still active (managing 6 to 8 hours of school a week) Also her onset was gradual and we have found no viral link in her case…….that’s not to say there wasn’t one. I just want anyone whose child has CFS and is reading this to know our back story.
May you all have a lovely lovely day. Hugs and kisses to all AND THANK YOU FOR READING! I will keep you updated.