parentingcfs

Navigating adolescent CFS

How did we get here? July 10, 2011

Filed under: CFS Diagnosis,CFS Symptoms — parentingcfs @ 1:44 pm
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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 at least a period of time and in most adults for many years. Our understanding is that our girl is likely to recover because of her age (11 at onset). We just don’t know when.

A succinct explanation (difficult to find!) for adult CFS that shows just how vague things still are can be found here.  www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html

The only 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.

My current understanding (and I’m certainly not a doctor) is that the research is showing that it is a serious and disabling neurological disease that affects, among other things, sleep patterns and the immune, endocrine and nervous systems. Stay tuned for changes in my understanding (and research developments)!

How is this 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 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. Much to her dismay she has not been able to get back in the pool since. Any amount of exercise (a short walk) makes her feel ill. She wakes up tired. She often has headaches. She often feels cold (sometimes hot) without reason and finds it difficult to get warm (cool). And oh the exhaustion. She gets to school most mornings because she knows it’s important. She rests from 10:30 until 11:30 on a couch at school. She then participates in class again until 12:30 when she rests again until 2pm. Most days she then finishes the day out and comes home to rest at 3:30. Some days she can’t make it past 12. Luckily for her she is in a good place with her school work and is already ready for high school. It takes a lot of the pressure off. Thank goodness because for our girl the CFS has precipitated her into some serious anxiety which is not uncommon with this illness. But that’s a whole other post!

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. She has been tested for around 15 other illnesses that have all been ruled out. Which apparently leaves Chronic Fatigue Syndrome, with the last box to be ticked being that the symptoms have persisted for 6 months. So here we go.

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