parentingcfs

Navigating adolescent CFS

How did we get here? July 29, 2011

What is Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis/ME)? Aaaah the million dollar question. How I’d love to be able to give you a clear answer. It is generally agreed that CFS is an illness that prevents people functioning at their true potential for ‘a period of time’ , averaging 5 years in children…and in most adults for many years, sometimes the rest of their life. Our understanding is that our girl is likely to recover because of her age (11 at onset). Although some statistics seem to say otherwise….. We just don’t know when.

For a succinct overview of this condition in adolescents check out http://www.cfids.org/sparkcfs/2008/pediatricfs.pdf  from the CFIDS Association of America.

One paediatric case definition I’ve found is at www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-PaedCaseDef(LeonardJason).pdf  It’s a fairly lengthy document but on p.10 and 11  (I and II A-E) you’ll find the information. Be aware section III is talking about conditions that exclude CFS.

Another good explanation can be found at http://mcwpa.org/what-is-mecfs/ Scroll down to find information on the right about adolescents.

How is it manifesting in our girl?

Well the initial symptoms for our precious 11 year old was nausea that began in the evening when she lay down to sleep. It didn’t stop her sleeping but it was uncomfortable. It started just before the long summer holiday period 2010(Dec/Jan in this hemisphere) and looking back she probably did have less energy than usual but we didn’t really notice because we had a pretty relaxed summer.

February 7th was her first day back at swim squad and some laps into the session she got out because she felt extremely nauseous and exhausted. Squad swimming stopped for her from there on ..and in fact all PE classes too.

On the journey we have been on we have discovered that her symptoms appear to be linked to the fact that her heart rate and blood pressure are all over the place (orthostatic intolerance) so her body is constantly compensating for this. Before medication, just having a shower shot her heart rate up to 120 and gave her a stomach ache. What the doctors don’t know is why this has suddenly happened. Many people seem to get the CFS label after a bout of glandular fever (mono in US) or Epstein Barr Virus. Neither of these have shown up in our girl’s tests.

June 2011

Any amount of exercise (a short walk) makes her feel ill. She wakes up feeling no less tired than when she went to sleep. (Can you imagine??!!) She is nauseated most of the time. (Her stomach has become extremely sensitive to food) She has headaches daily. She often feels cold (sometimes hot) without reason and finds it difficult to get warm (cool). And oh the exhaustion. She used to get to school most mornings. She rested from 10:30 until 11:30 on a couch at school. She then participated in class again until 12:30, rested on the couch then I picked her up. Recently this has become 9 until 11:30 most mornings, then she comes home. Some days she can’t get out of the house. (And she isn’t as severely ill as some poor kids with this who can barely leave the house at all. Many adults too.)

You can probably see from the symptoms that this is a hard thing to diagnose and difficult to explain. Even as a parent seeing her everyday it was so confusing because she seemed so normal some of the time. The trouble is that people with these issues don’t realise they are overdoing it until hours or days later when their body just ‘crashes’ – sometimes for weeks and they can barely make it out of bed. And ‘overdoing it’ for our girl can be something as small as attending a birthday party or walking 4 blocks. We are still trying to work out what her baseline of activity is…ie: exactly what level of activity can she maintain without crashing?

In addition to all this in June she started saying she was finding it hard to concentrate and struggling to remember some words. This from a girl who read the whole Harry Potter series in Term 2 of Grade 2 and hasn’t looked back…until now.

Update Feb 2012 

Our daughter is back at school full-time thanks to a little pill called Florinef that helps increase her blood volume! We are over the moon as you can imagine. She’s not back to her old self but this is such a VAST improvement…… If you’d like to read the post where I talk about what’s worked for her go straight to this post.

Update August 2012

The Florinef worked well until late May. Gave her a great start at high school. Unfortunately for the last 10 weeks she’s been barely able to get to school and has only managed 1 and a half days of school in the last 3 weeks. We’re just about to start on Midodrine in the hope of getting her back to school.

Update March 2013

Unable to continue attending school. Started Maths via Distance Education but only managing 20 or 30 minutes every second day.

Update September 2013

Able to read a novel again!! Hallejulah!! Started back at school one lesson, once a week.

Update February 2014

Back at school for 3 hours 3 mornings a week. Able to concentrate in the first lesson but not usually in the second.

 

I started this blog for several reasons. There are no simple answers or explanations with this illness. Blogging about it means our family and friends can access the information I find out  and join us on our journey as frequently or infrequently as they wish. In addition I hope other parents of  kids with the CFIDS/ME/CFS/POTS diagnosis will find this blog and we, and our children, will all benefit from sharing our experiences. Lastly, and perhaps most importantly, the more chatter there is out there about this serious illness, the sooner we will find the answers. I hope you continue to visit and comment on this blog.

Thanks for reading and have a great day.

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7 Responses to “How did we get here?”

  1. Keena Says:

    I am so sorry to hear that your little girl has CFS. I too have CFS. I was diagnosed in 2003 at the age of 33. I will be praying for you and your family.

  2. Amy Says:

    Hi Annie,

    I have CFS. I was diagnosed in 2007 when I was fourteen. I am now eighteen and coping with the illness. I am so glad you are blogging about this. It has been such a struggle for me and I really empathise with what your daughter is going through – her story sounds so very similar to mine. It must be so awful to be so young. And so frustrating for you. I have found a couple of blogs talking about CFS today and it has really helped me to know, finally, there are people out there who know what I am going through. Thank you so much. Amy 🙂 x

    • Annie Says:

      Hi Amy! Thanks so much for leaving a comment and I’m sorry it’s taken me a while to get back to you. I’m so sorry to hear you also have this awful illness. I hope you’ve had some good medical help over the four years and that my blog was of some assistance to you. Best of luck and keep in touch if you feel like it. : )

      • Amy Says:

        Hi Annie 🙂
        The doctors haven’t really helped as much as they could have, bit of a sore subject really. But I have a new doctor now, so hopefully she will be of some support. It has just been Mum and I trying things out and seeing what works for me. I would love to keep in touch – just have to remember to read your blog! I have just started one about my ME/CFS to share my experiences and the little things that help me. http://ami-lou-theheartofme.blogspot.com/ – there might be some useful information on it 🙂 Amy x

      • Annie Says:

        I will check it out right now Amy! I have fixed some things on my blog so you could sign up to get my posts by email now if you’d like. Best of luck with the new doctor. x

  3. Caitie M Says:

    Hi there, I’m so glad to have found your blog 🙂 I am 22 and have had CFS since I my early teens, and reading your daughter’s story I can relate so much. Your blog seems highly informative, there’s lots of info here that I haven’t seen anywhere before. Thanks for sharing your story, and best wishes to you and your daughter 🙂

    • parentingcfs Says:

      Hi Caitie. I’m so sorry to hear you have been sick for so long. I hope you have had some improvement lately? Thanks so much for your comment, I hope you found some useful information on here. Gentle hugs from me.


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