parentingcfs

Navigating adolescent CFS

So far so good this week… July 27, 2011

Filed under: CFS Treatments — parentingcfs @ 2:01 pm
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Well, for those of you who clicked through yesterday you would have noticed a title with no post here. Wish I could tell you what happened but I can’t as I don’t know. Will attribute it to the new mysteries of blogging and continue!

A quick summary of what I wrote about yesterday:

1) Our girl is having a good week. Half days Monday, Wednesday and probably today. Full day Tuesday. Full days are witnessed by me with mixed feelings as they can cause her to crash and not make school for the rest of the week which is what happened last week.

2) I’ve given her total say in how much school she does. Tuesday I went at lunch as instructed by her and she said she wanted to try to stay for the afternoon provided she could call me if she wanted. I said yes and skipped gaily off to have a life…ooops did I say that? If the last weeks are anything to go by giving her control helps her immensely. I suppose I would have been starting to learn this lesson around now anyway, as she gets older, but really it’s a completely different ballgame to having a well kid.

3) The reality is that when even the experts can’t agree on the best treatment for CFIDS – except maybe the importance of sunshine and keeping up socially – how on earth can I insist on her doing anything? I thought I had already got to this place but then there was that morning early last week when I really encouraged her to go… I don’t think I would do that anymore. Of course I can’t ignore that how I was feeling that morning probably influenced my decision. I think I’ve accepted better now the temporary hiatus to having any kind of plans for myself that can’t be changed at the last minute.  Quick cuppas at the local cafes with friends and family are a lifeline right now. Really grateful for everyone’s support.

How’s your week going?

 

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Orthostatic Intolerance & adolescent CFIDS July 25, 2011

Filed under: CFS Diagnosis,CFS Resources,CFS Symptoms,General — parentingcfs @ 9:30 pm

A week or so ago I started investigating something called Orthostatic Intolerance (OI).

My interest was initially prompted by Sue Jackson’s statement, on her wonderful blog http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html,  that research has shown that 95% of people with CFIDS suffer from OI.

OI apparently takes many forms but basically for CFIDS sufferers it involves unusual rises in heart rate (postural orthostatic tachycardia syndrome -POTS)  and/or drops in blood pressure (known as neurally mediated hypotension – NMH) when in an upright position. Out of interest we popped a heart rate monitor on our girl straight after she got out of the shower and sure enough her heart rate had jumped to 130 just from that exertion.’Very uncontrolled testing,’ my engineering husband points out – but nonetheless of interest. No wonder the poor kid feels like she’s recently done a marathon most of the time–because she has!

Upon further reading I became very interested and somewhat excited. Why? One simple reason. If our girl has OI ( as shown by testing under slightly more stringent conditions than mum leaping around with a heart rate monitor!) we can DO SOMETHING ABOUT IT and it’s likely to make her feel a whole lot better. Now that’s exciting! (More on what we can do in a later post or you can find the links through Sue’s blog above.) It’s still only treating the symptoms – can’t treat the cause when we don’t know what it is!- but it may be a start.

Long story short, we now have an appointment with a clinical pharmacologist who will be able to test our girl. Of course the appointment is not until September and funnily enough (yeah laugh or you’ll cry stuff) it falls on the Friday of the same week we finally get to see the CFIDS specialist! However if I’d waited around until we saw the CFIDS specialist we would probably have been waiting another 2 months after that for the testing!

So I’m learning to be proactive in my support of our girl and our paediatrician  is being very supportive. I emailed her last week asking for the tests and she had us come in the next day for a quick impromptu appointment just to check blood pressure and heart rate so she could write the referral. Makes a world of difference to have support like that. Of course the referral says ‘mother has requested’ the tests. I have to deal with being ‘a squeaky wheel’ as I explore all avenues in the quest to improve our girl’s situation! And based on the evidence available this looks like a pretty good avenue. We shall see. Whatever the test shows, we shall all emerge from this experience stronger and with new skills! Well at least with an understanding of words like orthostatic!

Have you had to be a ‘squeaky wheel’ on your child’s behalf?

 

Go Cadel! July 23, 2011

Filed under: General — parentingcfs @ 1:06 pm

Not CFIDS related but we’re loving the Tour de France!!!! I’ve really got into it the last few years, partly because I get to sit on a couch in the middle of a grey Melbourne winter and look at the beautiful SUNNY French countryside and some extremely fit men! Shame it’s such a terrible timezone issue for us… very envious of those of you in Perth who get to see it all by midnight (and those of you in Europe – well!). Andrew stayed up until 2am again last night. I’ve been surviving on highlight packages as I just haven’t been able to stay up past 11:30pm …but tonight I’m going to try! Fingers crossed! ; )

Update 25th July: YAY CADEL!

 

Things she says that break my heart…..

Filed under: CFS Symptoms — parentingcfs @ 12:53 pm
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We’re being as positive as possible these days…. Things like not talking about the illness in front of her, not asking her how she feels yet, of course, being open to listening at any time. ( Every evening she still fills out the record sheet but that’s the only time it’s really been brought up the last few days, unless we’re at the doctors)

Sometimes she will quietly say things  that encapsulate so beautifully how she feels that I kind of have to save the words up to process later.

Thursday “What if I get so tired I fall asleep and – bleugh – I die?” (It was the ‘bleugh’ that did me in, it was a kind of fatalistic, popping noise)

Yesterday “I really like driving. Not driving driving, being the passenger. Because I can go places without using any energy.”

I’ve debated whether to place these comments in the public domain but they give such valuable insight into how it feels to be twelve and have CFIDS that I’ve decided to go ahead.

I’d love to hear what your child has said that helped you understand how they feel.

 

Specialist appointment brought forward! July 21, 2011

Filed under: General — parentingcfs @ 9:23 am

I received a very welcome phone call from the Centre for Adolescent Health yesterday saying that our appointment has been moved from Oct 13th back to Sept 12th! Still a while away but everything helps! : )

 

Wednesday follow up…

Filed under: CFS Symptoms,General — parentingcfs @ 9:19 am

Oh and for those of you who are interested, our girl made it to 1pm at school then her teacher called to say she’d been resting the whole late morning session so I just went and got her……..

Last night she came into bed with me at 3am with a stomachache and fell back asleep after an hour or so. These stomachaches have been increasing in frequency and severity it would seem. The headaches are a daily feature too.
Of course I had chosen to stay up stupidly late last night (something to do with relishing the ‘aloneness’) and after our girl fell asleep the dog wanted to go out, then took her sweet time coming back in….you get the picture. So I’m a little weary today!

Our girl hasn’t made it to school today. Her little brother, who has been home the last 2 days with a cold, struggled to come to terms with not being able to stay home too. He was definitely well enough for school though and reminding him that if he had CFIDS he wouldn’t be able to do any of the sport he loves seemed to balance the unjustness of the situation for him. Phew, another morning negotiated….

And should our girl be at home today? I DON”T KNOW because I’m not inside that poor body but I do know I have to listen to her because her having a sense of control does seem to be key to conquering this….

 

Quack.com or Reading Online July 20, 2011

Filed under: CFS Resources — parentingcfs @ 11:42 pm

My husband made me laugh hard last night which is always a lovely gift to receive!

We  were talking about my fear of looking neurotic when it comes to talking to our wonderful doctors about what I’ve learnt from online sources. He pointed out that it’s not like I’m reading quack.com!

That appealed to my sense of humour and encapsulated exactly what I am battling with when I read online.

I try always to read about CFS as carefully as possible, preferably from medical sites only although there are some wonderful exceptions. Since I’ve just spent the last 2 months teaching an English course that involved establishing what makes a source credible I feel reasonably qualified to do this….. never a certainty with me! The wonderful exception to the medical sites I talk of is Sue Jackson’s blog.http://livewithcfs.blogspot.com/ Not a medical site but as a chemical engineer in a previous life her information is very carefully considered and laid out and has been incredibly helpful to me.

Occasionally I will cite non-medical links but I have always carefully read these to ensure as much as I can that they are  linked to valid research and as balanced as possible. However the fact remains that I myself am not a doctor so any information provided on this blog is not medical advice!

So, as always, my wonderful husband made me think about something, feel much better about it and gave me a good laugh at the same time!