parentingcfs

Navigating adolescent CFS

Midodrine? April 27, 2013

Hi all

Just a quick post…is the plan!

Shortly I am heading off to a seminar about to be given by NZ Dr Rosamund Vallings. More about that after.

Wanted to share that our darling girl has been more active this week than she has been for ages! Has been out of the house EVERY day except one..and not just for a car ride.

Sun: helped friend get ready for dance competition

Mon: appointment

Tues: visited old primary school for 90 minutes and read/played with 5 to 7 year olds in their class!

Wed: bed

Thurs: 3 HOUR  visit from high school friends, including an hour out of the house.

Fri: 2 hours clothes shopping AND requested stop at playground with 4 year old cousin who we picked up on the way home!! Believe me, I couldn’t redirect the car fast enough!!

And today, Saturday, she has just gone on a quick car trip with Dad. This is sustained activity day after day that has been unknown for a a year now!!! Always hard not to get excited but must enjoy good times too. She’s also been working on Distance Education maths almost daily for 20 minutes.

Briefly I thought,’ooh recovery?’ then remembered we upped her Midodrine dose (a vasoconstrictor to help pump the blood back to her heart) from 2 pills twice a day to 3 pills twice a day and that probably explains it. But we’ll happily take a good week anyway we can get it 🙂

On a more sober note, our beautiful younger son (11) is displaying more and more troubling signs of similar problems to our daughter and just this morning we found that his heart rate too is jumping 30 bpm when he goes from lying to standing..a sure sign of orthostatic intolerance. Ho hum.  We’ve had to pull right back on sport as, apart from the fatigue, his legs are causing him terrible pain. This week he didn’t run the school cross country race…that he went through to district level in last year. So sad to see an 11 year old boy coming to terms with physical restrictions of his body that no one can fix. He was relieved to hear that doctors and researchers are working hard to help him right now all around the world. Indeed, just over the last 2 days there has been a huge FDA meeting in the U.S. with many fabulous people who are trying to help solve this mystery. Apparently one doctor said he tells his young researchers that CFS is the best field to get into because it is the most complex medical puzzle out there. Here’s hoping we can help our precious kids soon.

Anyhow, must get on with the day. Hope all is well with you.

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4 Responses to “Midodrine?”

  1. Marita Says:

    Good days are excellent. Good weeks are a treasure 🙂

    For whatever reason the week is good, I am glad.

  2. Jo Koehn Says:

    Great news about your daughter but so sad to hear that your son is experiencing some challenges. Hugs to all of you!


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