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.
parentingcfs 
Great news… will keep fingers crossed for continued improvement! Much love to you all xx
Thanks Tracy! So exciting! x
Great, fantastic to have some good news š I’m keeping my fingers crossed for Harriet.
I tried florinef and it didn’t seem to help (I think it typically works better in teens with me/cfs) and I ended up with low potassium levels. Which wasn’t a problem just something to keep an eye on. (there is lots of potassium in bananas).
Thanks Sarah! Yes I had heard about the potassium. Our doctor says he’s never heard of potassium defiency causing health issues but I will also talk with our naturopath. Meanwhile I am encouraging the eating of bananas….. Hope something begins to work for you soon….it’s the sadness in all this…I want to cure everyone! Thanks for following our news x
I’m so excited for you both š
Thank you Marita for your generosity in sharing our joy. May 2012 miraculously bring similar miracles to your children. Autism is a field where developments are long overdue. You may be interested to know that there appears to be an overrepresentation of engineer and IT parents amongst kids with Chronic Fatigue Syndrome. – as I believe is similar with autism? Best wishes for the year ahead : )
Fantastic news Annie! We’re all sending our love and positive thoughts. Hopefully you’ll be able to take a celebratory holiday to Perth so we can give you real hugs! Miss you, T.xx
Thanks Tanya! Yes very very exciting. Hope we get back to Perth for a visit soon too! May 2012 bring wonderful times for the Smoothy/Carter clan x
So happy for all of you Annie. Add my fingers to the crossed list as well! Let me know if you two feel up to morning tea in the next week or so?
xK
Hi Kerrie! Thanks hon. We are having some quiet time after Sydney…she’s dreadfully tired again so I’m desperately hoping we haven’t undone all the good by doing too much too soon….but that can’t be possible can it? Hopefully just a reaction to a busy weekend. Would love to catch up for morning tea. Will be in touch later in the week xxx