parentingcfs

Navigating adolescent CFS

Graded Exercise Therapy – Part 2 August 23, 2011

Filed under: CFS Diagnosis,CFS Resources,CFS Symptoms,CFS Treatments — parentingcfs @ 10:07 pm
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Graded Exercise Therapy

Our girl and her uncle at a sunny family wedding last year.

Saw an exercise physiologist today. 12 years experience working with CFS Graded Exercise Therapy programs. Very friendly, happy manner that our girl loved. If you ask her she’ll probably tell you that the best part of the whole session was when her mother waved her hands about as she usually does when talking (pick the language teacher!) and knocked a box of tissues and a small clock off the table. Yeah hilarious! I myself am obviously totally used to being a klutz as just carried on talking whilst replacing the items whilst the two others in the room fell about. Aaah at least I can still entertain!

Anyway, back to the matter at hand. The EP, as I’ll call him, had our girl totally captivated to the extent that the yawning started much later than it normally would have in a sit down 1 hour session! He totally got that the yawning would happen and from the beginning told her to get up and move about whenever she felt the need. I felt very reassured from all his questions that he understood where she was at and that he would listen to her and only encourage, not insist. After the fairly supportive clinical pharmacologist visit last Friday and the holistic approach of the EP today I feel more optimistic than I have in months.

So, what else did we get from today other than support and acknowledgement? Well, our girl now has a bright orange folder….great colour for easy locating! Her homework for this week is to fill in a chart with what she does each day on an hourly basis and colour in each hour depending on whether it was an easy, medium or difficult activity for her. She also has a few more forms to fill in with detailed questions about her fatigue, her emotions and her physical function. No instructions on activity yet. It seems to be a very comprehensive approach to finding out exactly where she’s at before any recommendations are made.

Have to say the chart reminds me of all those years ago when we did controlled comforting with her when she was waking hourly through the night at six months. I remember I was sick with sleep deprivation but hated the process and cried more than her I think! Having the chart was the only thing that gave me comfort as I could actually see the improvement. So I guess I can totally see where this chart is coming from.

Today I feel very lucky to live in a big city where we can find expertise like this. It’s somewhat irrelevant that it has taken since February to find someone this helpful and that it was only through my research that we got here now and not in several more months time, if ever. Let’s focus on the joy of now and hope like anything that this GET does produce what it promises!

Oh, and in a side note, it turns out that 2 minutes on the exercise bike was too enthusiastic a plan. We need to start with walking and swimming. Good to know.

I should also just mention that the EP found our girl’s symptoms interesting..he said a mixture of chronic fatigue and  some orthostatic intolerance. I was surprised that he found that notable…again we come back to the likely sub groups within the CFS diagnosis group? Anyway, the focus is on dealing with all the symptoms and not worrying too much about how she got them from what I can gather. He agreed that she has POTS (Postural orthostatic tachycardia syndrome) and said she’s likely to outgrow it, which was cheering.

Okay, I really must sign off now. A big thank you to all of you who are following our journey. I was really quite chuffed to see how many people had subscribed (you can easily do it by entering your email address above on the right and then you won’t need to check the actual blog to see if I’ve posted as every new post will come direct to your email.) You can’t imagine how much less lonely it makes all this to know people are reading. May your days be sunny and your chocolate delicious!

 

Graded Exercise Therapy….the leap of faith August 22, 2011

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 10:18 am
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So. I haven’t posted since the appointment on Friday because I wanted to digest the information and present it as correctly as possible.

A different bike from earlier days!

If you bear in mind that we first started visiting doctors in February about our girl’s fatigue and nausea, perhaps you can understand my interest in seeing the first doctor who has said, ‘this is what you need to do for her to improve.’ – since it is 6 months later. This is the doctor we saw on Friday, a clinical pharmacologist who I tracked down after thinking about Sue Jackson’s blog post .

This doctor is a big supporter of Graded Exercise Therapy (GET)… one of the treatments trialled and promoted in the PACE study published in The Lancet in March of this year. In summary, the study concludes that ‘Cognitive Behaviour Therapy and GET can safely be added to Specialist Medical Care to moderately improve outcomes for chronic fatigue syndrome’. Sadly only 60% of the studied cohort improved and the research findings have been subject to much criticism – as seems to always be the case when something is published about  this condition. However the reality does seem to be that some people have really benefitted from GET and the study did show that adverse reactions to GET were very rare. The researchers argued that previous negative results from GET were probably due to too much exercise being done.

There IS research out there that says CFS is clearly different to deconditioning. It seems to directly contradict what GET proponents assert – that treating the deconditioning that comes with CFS is key. Or maybe not? Maybe improving fitness..if it can be done and is done very slowly and carefully…is helpful whatever the actual problem with CFS?  Or perhaps it all comes back to the almost generally agreed thesis that there are subgroups within the CFS/CFIDS/ME classification? How are we supposed to untangle all this and ‘do no harm”? Good question. At the moment we have to go with the Lancet study as it shows very little adverse reaction to slow, careful exercise.

Sooooooooooo, we are still waiting to see anyone who can move us forward in a clinical setting but meanwhile we are going to start very gently with 2 minutes on an exercise bike each day this week, then if she doesn’t crash, amp it up by 10%. Very gently is the key phrase here. The theory made sense to us. The doctor stated that there is no doubt CFS is related to a blood pressure condition. Hearing our family history of tendency to faint and migraines that my mum and I share was enough for him not to hesitate that our girl would have blood pressure issues. (Didn’t test her though…interesting! Maybe didn’t want to make her feel more crappy) So maybe it IS all my fault after all!!! Obviously the doctor doesn’t know what changes the blood pressure ‘issues’ into CFS – the million dollar mystery – but he seemed strongly convinced of the benefits of GET overall. The scientist in our house assures me that in the biological sciences a 60% positive result on something – as shown in the Pace study – is very positive.

Unfortunately our girl was a little too interested in the exercise machines at the shop yesterday and though I shooed her off the bike after a minute or so she snuck in 5 minutes on a cross trainer while we were distracted and consequently feels rather dreadful today! Honestly. Do I have to watch a 12 year old every minute of the day??!!!

So she’s not at school and her little brother is in bed with a nasty cough that I am going to have to take to the doctor this afternoon due to the whooping cough incidents at the school… Ho hum. Another reason why school isn’t a great place for our girl to be right now. It is musical week though so there will be plenty of interaction with her peers this week. it will be interesting to see if she can push through as she intends. And if she does, how she copes with next week when I take her on a very special trip that was planned before we realised how sick she was. More about that in a later post!

Meanwhile the sun is shining here and the temperature is heading up to 20 celsius so despite the varied illnesses in the house….oh did I mention that Andrew is recovering from Opthalmic Shingles which we caught early thank goodness as it can cause blindness! – I’m a happy camper!

How’s life where you are? Enjoying the change in seasons? And, of course, any comments on GET and my conclusions welcomed.

 

 

 

Recovery from CFS Resources August 18, 2011

Filed under: CFS Resources,CFS Symptoms,CFS Treatments — parentingcfs @ 7:14 pm

I realise I have failed to mention the first resource that really helped me when our girl was finally given the CFIDS diagnosis…..2 and a half months ago now. It was Bruce Campbell’s Recovery from CFS document.

I revisited this document again today and am very glad I did. Apart from the hopefulness of his story, and the strategies contained within, the document also links through to some other recovery or improvement stories which I sorely needed to read. In the last few weeks I have met a few people who have known of an adolescent with chronic fatigue who is still living with it 10 or more years later. Interestingly each of these people seem to think their friend is a special case because they are still sick….and you can imagine where I go with this kind of anecdotal evidence….I want to know where all the kids who HAVE recovered are and why aren’t people telling me about them?!

I have been fortunate enough to hear from the sister of one of my best friends from high school, whose daughter was diagnosed with CFIDS at 8 and recovered 9 months later through the use of Reverse Therapy. This mother has been extraordinarily generous with her time, replying to all my questions and giving me a lovely solid example that a quick recovery is not impossible. Our girl is doing something similar to Reverse Therapy as I understand it. I call it joy therapy where we incorporate fun stuff into her days so that the focus shifts to what she can do/have, rather that what she can’t. Some of you may remember me going on about a book I read 2 years ago called The Brain That Changes Itself by Dr Norman Doidge. I was fascinated at the time by the new developments in neuroscience…called neuroplasticity in the book…and how we could use them to help children with learning difficulties. The book essentially recorded and explained some pretty amazing stories of how neural pathways can be retrained so that people can recover from strokes and other medical difficulties as well as covering some of the educational possibilities. It also talked about retraining the brain so that chronic pain isn’t felt. Amazing concept huh? Unfortunately it is still very early days with this stuff but the potential is massive and it’s clear the learnings in neuroscience are going to impact more and more on our lives…improving them…over the next decades. I am guessing, but I could be completely wrong, that the reason Reverse Therapy works for some people with CFS is because the brain is retrained in some way.

If you haven’t read the book, I highly recommend it. Fascinating stuff.

Our girl has also started a course of prolonged release melatonin – the hormone that occurs when we sleep – on the recommendation of our paediatrician to help her get to sleep. Last night she was asleep by 10 for the first time in 8 months. It was such a relief to know she wasn’t just lying there feeling miserable – and trying to help her with reassurance, special teas, heat packs etc. Her symptoms are often worse at night, I assume because her ‘normal person tiredness’ is there as well as the CFIDS fatigue? Who knows really? Only one test has been done on using melatonin with children as far as I can find out but it’s being used on critically ill children I know and many doctors seem to be prescribing it for CFS adolescents so let’s hope there’s no long term effects!

School musical 3 nights next week. Our girl helped write it so is supposed to go every night – performing 2 nights and bowing at the end each night. She is determined not miss the fun…
Meanwhile we have our OI test tomorrow…… and I’m hoping it won’t make her crash just in time for the musical!

What’s happening in your world?

 

‘School’s so hard Mum’ – the neurological impact of CFIDS August 15, 2011

Filed under: CFS Diagnosis,CFS Resources,CFS Symptoms — parentingcfs @ 2:25 pm
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Our girl has been a voracious reader since she first put vowels and consonants together. She read quickly…all the Harry Potters in Term 2 of Year 2…and mysteriously sometimes 5 books seemed to be on the go at once…something I’ve never been into. So you can imagine how much it hurts to hear her say that reading isn’t as much fun as it used to be and..horror… sometimes she has to read the same passage over and over. And that it is just so hard to concentrate in class.

Last night’s bedtime conversation was me reassuring her that everyone understands that she’s sick and it’s okay not to be able to finish work to her usual standard…just being at school is enough. Of course, it doesn’t matter what I say, she is the one having to deal with the frustration of having a brain that doesn’t work as it used to. Her whole school persona seems to be challenged by how she perceives her work in class….and she ain’t happy with the changes. What can I do but reassure?

The reassurance wasn’t enough to get her to school today but she was also a bit sniffly and her brother was staying home with a cold…. Sigh. Maybe tomorrow…. Actually, there is so much nasty stuff going around the school at the moment (including whooping cough that even immunised children are having to take antibiotics for) that it’s probably a good thing she’s barely been there in the last fortnight. Aah one looks for the upside!

The Young Action Online document “Guidelines for Schools” that comes out of the UK..thanks to my friend, April, for alerting me to the existence of this… states that ‘an adequate period of sick leave is essential at the the onset of this illness’. Shame I have no idea what an adequate period is…but I think we’re having it now! Then again maybe this is still the effect of the Uluru experience 2 weeks ago. Who knows?!

The good news is we were on a waiting list for the orthostatic intolerance test appointment and the surgery rang this morning to say we could come in this Friday rather than waiting to Sept 16th. Yay. I think.

 

 

Nutrition and CFIDS August 13, 2011

Filed under: CFS Resources,CFS Symptoms,CFS Treatments — parentingcfs @ 12:17 pm

As you may remember, right from the beginning, nausea has been a major symptom for our girl.

This illness has such an impact on almost every system in the body and the digestive system is no exception.

This latest big crash, after our Uluru trip, has seen the nausea return with a vengeance and start interfering with our girl’s sleep (delays her getting to sleep) and food habits again. So I thought I’d share some of the the things that work for us.

My gorgeous naturopath friend, Caitlin, alerted us early on to many of the  nutritional issues we would need to address to help our girl be as well as possible. The one we’ve been able to implement most easily is porridge oats with LSA for breakfast. Our girl can stomach that most of the time and it truly seems to give her boost. Most of the other points Caitlin mentioned are also discussed in this post.

Recently, a friend from school sent me through some notes put together by Melanie Reid, a South Australian dietician who has kindly let me link them to the blog. You can download the powerpoint here. http://sacfs.asn.au/download/CFSpowerpoint.ppt

In summary, Melanie covers the main issues I’ve become aware of, including the ones I’m particularly interested in; glucose levels, food sensitivities and supplements. I’ve previously read that many CFIDS sufferers become intolerant of various foods because of the impact of the illness on digestion. With our girl I’m particularly aware, sadly, of fructose intolerance (apples, pears, onions, leeks, honey, mangoes amongst others) and wheat related issues.

Our girl is 167cms and only 44 kilos, a lovely giraffe like her dad, and I have been finding it really hard to limit her food choices as I’m just so glad when she finds something she feels like. Luckily her body seems to be sending her very clear messages..and she listens to them mostly… although a few sugary products still creep in here and there! Again – there has to be some treats so long as she thinks it’s worth the impact on her symptoms.

Early on she discovered eating straight eggs makes her feel iller afterwards and after a period of craving them and mourning their loss, they have just been dropped completely – although still tolerated in baking etc. She used to love apples but obviously the fructose is a problem as those have been dropped now too. I noticed after we had wheat pasta for the first time in a while the other night she had a major stomach ache. So we go gently on, adapting where it seems to work. And trying not to run out of food types to eat!

As far as supplementing goes there seems to be a consensus that magnesium and omega 3(fish)oils are helpful. Melanie mentions this as well. Our girl used to have no problem taking tablets but the multivitamin supplements are beyond her these days. At the moment the only thing she can manage is the fish oil and I’m just grateful she can manage that.  I haven’t given up the quest for a more manageable multivitamin tablet but tracking one down is still one of the many things on my list of ‘things that might help and should be tried!’

Finally, an interesting note is that for the last few weeks our girl has been finding raw green capsicum helpful before bed to deal with the nausea! Not sure what that’s about but my dear naturopath friend Caitlin, tells me it’s to do with the enzymes helping her digestion (Did I get that right Caitlin?!)Last night she self -medicated with 3 raw mushrooms, some capsicum and 6 cherry tomatoes and had no nausea at all! Fascinating. We shall see how tonight goes. Hopefully she’ll be pulling out of the post Uluru crash soon and the nausea will abate a bit anyway…..

This is a massive topic and I will revisit it in posts to come. In the meantime I’d love to hear your thoughts.

 

CFS Research Resources August 12, 2011

Filed under: CFS Resources,General — parentingcfs @ 8:36 pm

Just wanted to let people looking for information know I have added a new link to my blogroll and subscribed to www.research1st.com a new website of the CFIDS Association of America which ‘is intended to become a one-stop shop for the most current and reliable information about CFS-related research being conducted by top-flight scientists worldwide.’

It’s great to have a place to go where all the latest developments are gathered together. The most recent link on their blog is to an article published in Nature Reviews Neuroscience where four doctors from different disciplines discuss some pertinent CFS questions and it made very interesting, if slightly depressing, reading.

You may also like to check out http://phoenixrising.me/ which gathers and discusses recent developments.

 

 

These four walls…. August 10, 2011

Filed under: General — parentingcfs @ 12:26 pm

New table arrived this morning. It fills me with a sense of achievement as we’ve needed one for ..really…years. However the main thing I notice right now is it’s such bliss to have something different to look at!

I’m finding myself rearranging furniture just to feel like I’m in a slightly different environment! On Monday I moved our bedroom around. At one point the bed thought it would resist me but I was so determined I found the strength somewhere…and my back hasn’t protested too much since ….so looks like I got away with it..yay!

Anyhow, for those of you spending a little more time at home than you would otherwise choose, and who are well yourselves, I highly recommend a bit of ‘faffing around’ with furniture! And I’m not the ‘faffing’ kind usually as many of you would know!

There is definitely a positive feeling that comes from walking into a room that looks slightly different to how it looks in your memory. In fact, I’m sure I’ve read several articles about the beneficial effects of changing scenes but not something I can put my finger on right now…..

My darling girl is still completely worn out. Asked to not go to school at all today so she’s tucked up reading. I’m very grateful to be seeing the paediatrician on Friday even though I know she will have nothing new to tell us. I feel that way about the specialist we will see in September too. Unless there are new developments (please please let there be) I really don’t see how anything will change. Still I’m very grateful for the medical back up.

Depressed myself throughly yesterday revisiting the American CFIDS Association website. They have an adolescent fact sheet http://www.cfids.org/sparkcfs/2008/pediatricfs.pdf that states that research shows only between 8% and 27% of adolescent sufferers recover fully while up to 48% improve. I know, I know I just shouldn’t read this stuff and I should be positive….and I am most of the time. I truly believe that this is temporary…just keep those statistics away from me! And, there really is such a movement, particularly in the States, to get some answers to this condition.

Anyhow back to the table! It’s the first Andrew and I have ever bought despite being married for nearly 20 years! (Yes, old friends and family 20 years!!) We’ve been lucky enough to have had various tables from family over the years and we’re very grateful but it was finally time! Oh and for those of you who don’t know her you can also see our wonderful Phoebedog in the photo…she’ll be 13 in December. Slow to move these days..until food or the lead appears then she’s suddenly a skittish pup again!