parentingcfs

Navigating adolescent CFS

The rest of her life starts now! February 8, 2012

Oh my oh my. This is it – the post where I get to write that modern medicine seems to have come through for my child!! Woohoo! The birds are singing, the sun is shining and I am smiling and laughing like there is no tomorrow. Only there is a tomorrow, and a tomorrow and a tomorrow and now my darling girl is much more likely to be able tackle each and everyone of them much like any other high schooler.

Why am I so elated? Well, as you probably know, we were finally able to start our girl on a daily dose of fludrocortisone (Florinef) on the 26th December just gone. This was a full 12 months after she first became ill. No one offered this alternative to us at any time, it was the result of knowledge discovered online (primarily through Sue Jackson’s wonderful blog) and our perseverance in seeking the prescription from someone who could give it to us. ( In our case a clinical pharmacologist, otherwise you probably need a cardiologist.)

What I knew prior to our girl starting the medication was

a)  97% of adolescents with CFS have blood pressure issues and our girl’s showed up when I asked our GP to do Dr Rowe’s in-office  20 minute test

b) fludrocortisone is used in the US for treating CFS with some success

c) the success rate is apparently low…around 25%…HOWEVER this takes in the whole gamut of CFS sufferers and fludrocortisone is MOST likely to work for younger people who are still relatively active

Ok, back to why I’m so elated (did I mention that??!!!) We had seen some significant improvement through January but knew the real test would come with school starting this week. And guess what??? She is just about through her 3rd full day of highschool…after not attending 1 full day of primary school for the last half of 2011!!!! She is tired yes but that’s to be expected moving to a new school of 1500 and learning the ropes. Yesterday she came home and proceeded to complete 3 hours of Maths homework. I could have strangled the Maths teacher with my bare hands as we are so concerned she will overdo it and relapse. However she plugged on quite happily and got up with a smile and a skip in her step this morning! Oh oh oh!!! You can only imagine the joy in our hearts and the mood in our house. Her dad has been sure to be working in Melbourne this week so he could help me navigate the potential minefield of the first week and so has been here to share the joy as well.

All my life I have been a cautious person and there IS a voice inside me saying ” Are you sure you want to write this post? It’s early days and she could overdo it.” but you know what? I’ve had to guard my emotions so much these last 12 months that right now I just want to scream it from the rooftops and leave next week to worry about itself.

Yes, we need to be careful. She does not have her complete life back for sure and we expect her to miss some school every week to ensure her body can cope with the new activity. She won’t do any sport apart from therapeutic exercise and no music lessons. However compared to the one or two subjects she was looking at being limited to before fludrocortisone, her life seems very rich indeed.

To all of you out there who have so kindly followed our progress, especially those of you who have commented, I send you the biggest possible thanks and hugs. If it were possible to have a party in cyberspace I’d sure be having one!

To those of you still struggling to get a ‘normal’ life back and/or find the answers for your child I wish you the very very best of luck (do investigate Orthostatic Intolerance in CFS if you haven’t already) and sure hope some of ours rubs off on you.

Hugs and kisses from a very, very, very, very happy mother!

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12 Responses to “The rest of her life starts now!”

  1. Sue Jackson Says:

    Hurray!! Woohoo!! Yeehaw!!

    We are so thrilled for her!! So excited that this first week of high school is going so well for you. And she’s even doing homework after school? Truly amazing!

    We are so, so, so happy for all of you.

    Believe me, I completely understand your joy – I have been there myself. I wish we could celebrate with you in person!

    Love,
    Sue

    • Annie Says:

      Thanks Sue! You were very restrained and didn’t warn me about possible pitfalls ahead! Our physician has sent me an email saying our girl will have times when her symptoms worsen and we need to try to manage her expectations…. Never mind, we’ll still enjoy this for now! Thanks again for pointing me in the right direction! I hope we get to meet one day! x

  2. Kath Says:

    Hi Annie
    We’re so very very happy for you and your darling girl, and would be partying with you if we were closer. I can’t imagine how difficult this past year has been for you all.
    Love to everyone in the family.
    Kath, Steve, Dylan & James xxxxx

    • Annie Says:

      Thanks for sharing our joy Kath! Hope the year has got off to a good start for you all. I am thinking I do need to party this weekend so we’ll just pretend you’re here! We’ll just save our own party up until we next get together! x

  3. Kerrie Says:

    Having a quiet little weep of joy for all of you Annie. xxxxxKerrie

  4. Love how blogging is helping you navigate part of this crazy journey you are on. So excited for both you and your girl. xxxx

    • Annie Says:

      Thanks Nic. I’m just so glad this blog is out there so that others may find the same solution for their child. Without the internet we wouldn’t have got this far this ‘quickly’ that’s for sure. Thanks for your help xo

  5. Jo Says:

    Oh, Annie! I, and so many others are rejoicing with you! I can’t begin to tell you how it warms my heart to think of your daughter getting so much of her life back. And to be able to begin high school on such a positive note is even better. ENJOY this time! I think you’re very wise to celebrate and not hold back. If there’s one thing this hellish disease has taught me, it’s that we must live in the moment and that we must BE PRESENT for our lives, no matter what the moment brings. There are always changes sure to come, some wonderful, some not-so-much…we can’t predict what will happen but if we spend time worrying about the “what ifs”, we may end up missing the joy of the moments that are right in front of us! Not to say that you shouldn’t be cautious about your kiddo’s activity level, that’s only common sense. But DO enjoy this time. I am SO, SO happy for you and your family! Sending big cyber hugs your way!

    • Annie Says:

      Thanks Jo. Big hugs right back at you. It’s been great seeing the influx of members to the Facebook group today. Together we will solve this thing!! Yes, being present is the lesson I’ve learnt too. Wishing so hard that you get some positive improvements for your girl soon x

  6. Pat Says:

    So glad to hear the good news about your daughter and the success with Flourinef. Wishing you the best! For what its worth…My youngest started with Flourinef and eventually ended up on a beta blocker as it worked for a while, but then not as well. So hang in there if you hit a bump in the road – there are many ways to help manage the OI.

    • Annie Says:

      Thanks so much for your comment Pat and for letting me know about Florinef and your daughter. I’m wondering if your doctor wanted your daughter to do gradually increasing, carefully monitored exercise and if so if she did it? It’s so difficult to know what to do! At the moment school is more than enough for our girl….


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