Just back from our visit to the clinical pharmacologist.
Our daughter has now been on one tablet of Florinef, salt tablets and constant fluids for 3 weeks.
As you know I’m pretty much dealing with a teenager here so I was as interested as the doctor to hear how she answered his questions!
In summary, she said she’d improved when first on the Florinef but now felt a little plateaued. The other interesting gauge was that she felt she could probably manage half a day of school now – up from the 2 hours she was doing before. (Of course we won’t be able to trial this until she starts high school in February)
At home, she rates the days from 1 to 5 depending on the severity of her symptoms, with 5 being given to the worst days. She hasn’t had any 1s since she became ill 13 months ago and no 2s for a very long time. Most weeks involve at least three or four 4s and 5s. So the fact that she has been almost constantly a 3 for 2 weeks now is a great sign the Florinef is helping! So exciting!
After speaking with us the doctor suggested our girl stay on the same dose of Florinef for another 2 weeks when we will report back. He hopes there will be continued improvement on this dose, otherwise is talking of adding in the Midodrine – rather than upping the Florinef dose. Must check with him why that is.
Last weekend we spent in Sydney as the children wanted to see the Harry Potter exhibition and Andrew was working there on the Monday. Our girl was able to do a lot more walking than we normally would have expected and, although I was worried that she had overdone it, she bounced back quite quickly within 24 hours of our return. Thrilling!
She’s definitely feeling better than three weeks ago as I am seeing frequent flashes of teenage behaviour that only happens when she’s feeling less in need of my goodwill!! Irritating but SO much better than watching her wilt.
So we’re optimistic that high school will start on a positive note – which is just the most uplifting feeling. I’m even beginning to think about what I’m going to do with my life again…although that’s still a little premature!
Whilst we are privileged enough to be quietly celebrating at our house, some of the other families I know in my beautiful online support group are going through really tough times. To them I extend my immense gratitude for their friendship and all my best wishes that their children, too, will see improvement soon. Some of them have been ill for years, others about the same time as our girl but with much more severe forms of the symptoms: passing out, vomiting,intense migraines, aching all over. The only thing tempering our joy in our girl’s improvements is that we can’t spread it to these kids too. This illness still needs our attention, far more research needs to be done and more education of the medical community. There seems to be a lot of pockets of information out there in the scientific community that never quite seem to connect together to form a global reaction to this condition.
Meanwhile we carry on taking it day by day here with more joy and gratitude in our hearts and I breathe deeply as my beautiful girl flexes her teenage muscles! And hold my breath that things will improve more so that she can truly become a teenager with all that that means!
May your day, too, be joyful in some way.
parentingcfs 