Navigating adolescent CFS

An update September 21, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 3:54 pm
Tags: , ,

A quick update before we head off for our next appointment with the exercise physiologist.

Our girl’s been crashed for a while although not too badly from what I can tell…..

She’s managed school except for Monday just gone, after she did a little too much on Sunday I suspect. She spent 2 hours with her little cousins and a friend in the morning, then went to a festival for an hour in the afternoon, then a birthday party for an hour. I suggested she didn’t go to the festival which only served to encourage her to add a new phrase to the list of comments she doesn’t like, “I think you should stay home and rest.” ! (It’s irrelevant that I was probably right!)

Not having as much energy as she would like to spend time with her 3 year old and 1 year old cousins who, luckily for us, live just a couple of blocks away is one of the impacts of this illness our girl feels most greatly so I guess Sunday fits into the category of tiring but worth it and sometimes it just has to be that way.

Tuesday morning I made the prospect of school more exciting by acceding to a request to purchase a DVD of Pirates of the Caribbean 1! She has just discovered this movie and is watching it (and the sequels) every time she gets tv time at the moment!

We have made a concerted attempt to make increased salt and fluids as attractive as possible by stacking the pantry with pretzels, chips and soda water. (She is not an overeater so this is not as dangerous as it sounds!) There is actually juice in our fridge and often more than one type! We also explained very carefully to her why she needs to stay hydrated and consume more salt and we seem to be having more success. No clear signs that it is making her feel better yet. We’ll give it another 3 weeks before we start pushing for Florinef which seems to work for some adolescent CFS sufferers.(Right now I’ve just unplugged her from the tv and unwisely reminded her to drink at the same time  – why do I fall into that trap??!! Hopefully she’ll return to a state of equilibrium before we leave the house…)

As for the exercise she has just done 12 minutes (gently) on the bicycle for the first time since Saturday. She feels her crash comes from school attendance and not the exercise which is interesting…and confusing as always. We shall see how this next week goes….

Thanks to all you lovely people who are still / have started reading about our journey. I treasure all your support and love the comments x



6 Responses to “An update”

  1. Annie you are doing such a great job. Will be in touch soon!

  2. Sue Jackson Says:

    You are right – sometimes it is impossible to tell what causes a crash…though I often drive myself crazy trying to figure it out!

    I have read studies showing that post-exertional crashes often don’t peak until 2-3 DAYS after the exertion, so that makes it even more difficult. Are you and she keeping a daily log? That can really help a lot. Maybe I already told you about this? If not, remind me, and I can tell you how I keep ours.

    Yeah, for me, a festival is a killer – too much time on my feet. But you are right…sometimes it’s worth the crash. I hope the rest of this week goes well for her!


    • Annie Says:

      Yes thanks Sue, the exercise physiologist still has her keeping a detailed log, another reason why I feel he is such a great help. I raised the 2-3 days thing with him yesterday and he said that in our girl’s case he would expect a same day or next day crash and that has been her and my observation too.(But we never rule out the other possibilities. I know one of the other boys we know is definitely a 48hr plus crasher.) I must admit it’s great dealing with the EP who has clearly seen so many kids like her. Anyhow , must write a post about the latest visit before time gets away from me. We are about to start a 2 week school break here and Andrew is home for the next ten days straight so exciting times! I’m off to see a Japanese film called Norwegian Wood tonight which has had critical acclaim. Looks a little bleak but it’s based on a classic book so worth a shot! I’ll let you know how I find it. : )

  3. Tanya Carter Says:

    Hi Annie, Both Greg and I are still here, following your posts and thinking of you all often. We’re rather silent when it comes to posting comments, only because we read your posts via email and tend not to get around to following the links to post comments.
    Excuses aside, keep up the fantastic job Annie, you’re amazing.

    • Annie Says:

      Thanks Tanya (and Greg) Lovely to hear from you and thanks so much for reading. You’ve already been on such a big journey of your own I know you must have a pretty thorough understanding of what all this is like. Hope your beautiful eldest girl is travelling well…

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s