parentingcfs

Navigating adolescent CFS

Rachel’s beach walk blog May 29, 2012

Filed under: General — parentingcfs @ 1:41 am
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http://www.lifesabeachwalk.blogspot.com.au/

Hi all. I’ve just discovered this blog about a wonderful woman called Rachel  who is raising awareness of ME/CFS by walking 700 kms along the NSW coast..just because she can now after  10 plus years of illness that started when she was 15. Always great to read something inspirational and there’s some lovely photos too.

She also (hesitantly) shares her recovery story. She states categorically that what worked for her may not work for others… hence the hesitance.  Interestingly what she does talk about is something that fits in with what we are exploring right now. Very interesting read.

Hope you enjoy it.

 

Phew! May 28, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 8:13 am
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I’ve been holding my breath a little these past weeks and it’s lovely to be able to exhale properly again.

Our precious girl had launched into her second term of high school in good form …well ‘new normal’ form anyhow. That is – permanently tired with various flulike symptoms but able to concentrate for extended periods of time and attend and enjoy school provided she didn’t do anything much out of school hours. And no exercise.

As I mentioned in my previous post, she suddenly crashed for no apparent reason in Week 6 and dragged herself to school a bit before succumbing to full on rest. Partway through this she developed full on stomach cramping that made her very miserable. My little heart was going pitter patter trying not to think this was a worsening of  ME/CFS symptoms. So perhaps you can understand why when, as my girl seemed to pulling up a little, my son developed a very sore stomach I crowed happily to my visiting sister-in-law that ” It’s all good because BB is sick now so it’s not CFS related” . Sadly what I didn’t realise was that my DARLING SON WAS IN THE ROOM WHEN I SAID IT! Not the most tactful thing I’ve ever done in my life as he didn’t hesitate to point out to me!

Luckily I seem to be forgiven (Hopefully he won’t need therapy later!) but it was a reminder to me to remember to check corners of the room before saying certain things!!!!

Anyhow, I was lucky as always to have the wonderful wisdom of other mothers to help me through the patch. So I now understand that it looks as if every now and then a virus will come along that will wipe her out a little more than most other kids and to make sure she rests, rests, rests at such times so she can bounce back…..no ‘pushing through’.

So today was our girl’s second full day back at school and my heart is glad again.

Sending some of that gladness out into cyberspace for you……..

 

 

Melatonin May 18, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 1:06 am
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Hi all.

My girl and I have had an sharp reminder of how carefully balanced her life is! Every 30 days I trot to the chemist to get the repeat melatonin (that controls her otherwise restless sleep) prescription filled. I could get it mailed in larger doses and really must get around to that! Yesterday I knew I needed to get to the chemist but we had one dose left of the short-acting liquid form of melatonin that we tried last summer. This was because our specialist wanted to make sure none of our girl’s morning fatigue was due to some of the prolonged release melatonin still being in her system. We had found that she had a more settled sleep with the prolonged release pills and they are small enough not to present a swallowing problem. Also her morning fatigue is no worse than any other time so the decision was easy (oh the delight of an easy decision!!)

Anyhooooooow…. it was really much more convenient for me to go to the chemist TODAY so I asked the precious girl if she would be ok with the liquid dose last night. She was fine with it and so that was settled. BUT at 6:30 am when I wandered past her room she matter of fact informed me that she’d been awake since 3am! She hadn’t connected the melatonin dots but I immediately did! In her usual positive style she stated that she might just do half a school day. I agreed ( as I always do to whatever she decides about school now – she is soooo conscientious I would be doing her a disservice to do anything else) Anyhow by 8am she was on the couch with her face the same colour as her white dressing gown and down to ‘maybe just the first 2 lessons’. I asked her if she thought she’d be able to absorb anything in the lessons? She saw my point and, as I write, is in bed, listening to music in the dark.  She’s never been a big daytime sleeper and anyway would be too scared it would interfere with tonight’s sleep if she napped……I’ve reassured her she’s made the right decision to stay home..which is the biggest gift I can give her.

She was really disappointed not to go today, is missing her friends and bored I suspect. She has been at home since Tuesday for no clear reason though I suspect a version of the virus I and her brother have had. In her case her immune system is on such high alert she generally doesn’t get some of the symptoms we get..she’s already got so many of her own that trump them perhaps???!!!

Anyway it’s the weekend ahead and let’s hope for a good school week next week. Plus this was the 5th week of an 11 week term so probably good timing for a break!!!

 

 

Another milestone…but as always, the caution…. May 8, 2012

Filed under: CFS Symptoms — parentingcfs @ 2:12 am
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It’s a sad state of affairs when you become so finely attuned to your child’s illness that you can pick from the smallest indicators that today is a bad day. In my case, I’ve discovered that my girl’s face takes on a slight opaque sheen. It’s handy to have picked this up but I wish it wasn’t necessary! Ah well!

Yesterday’s milestone was a trip home from school on public transport by herself! She enjoyed herself thoroughly once on the train and wandering back down our street. It was so lovely to see her sparkle. Of course, it took extra energy and the sheeny face was there this morning. “so hard to get up Mum” (this was when she’d already walked from her room to mine and lain down on the bed..not a teenage ‘my bed is so comfy and warm I’m not going anywhere!”) And I said, “Maybe today’s an at home day?” to which she replied ‘no no I must go” Me: “No actually, you don’t have to, remember? It’s okay to stay home” Her: “No I’ll be okay.” and off she goes. She has agreed to be picked up at lunchtime..unless she texts me that she’s changed her mind. We’ll see. She does seem to have gotten pretty smart at picking when to pull the pin. I am so very proud of her!!!!!! Sorry Mum explosion there!

Oh and by the way…she’s agreed to go dairy free and waved goodbye to cheese for now… : (

 

ME/CFS Awareness Week 2012 Seminar Melbourne May 5, 2012

Hi all!

A few people have commented about the lack of new posts from me. It’s due to the fact that as my girl is able to function well enough to attend school and is in quite a happy place I am able to be less obsessive about ME/CFS. It’s a liberation I don’t take lightly and a huge amount of my time is still spent reading and talking about the subject but I guess there is less need for me to vent online as I am not as sad and frustrated. Also my wonderful online support group now has 80 members and I tend to go there to vent.

So, why today’s post? As some of you will know May 5th to 12th is ME/CFS Awareness Week. May 12th was Florence Nightingale’s birthday. She is thought to have suffered with ME/CFS after returning from the Crimean War. I have just spent 4 fascinating hours at an Awareness Week seminar run in Melbourne, listening to doctors talk about diagnosis, treatment and outcomes. I went thinking that if I found out one new thing that would be enough. I found out a lot more than that.

Firstly the Opening Address was given by Linley Frame, an Australian Olympic medallist in swimming. Her speech moved me to tears. Her sense of loss regarding swimming was so very close to what my daughter has lost (without reaching the Olympic heights!) that I was profoundly moved. It is not the competition that she misses most it is the way of being. I believe Linley has only recently begun speaking about her ME/CFS and is now an ambassador for the illness for which I am extremely glad.

The Keynote Address was given by Dr Sonya Marshall-Gradisnik, a world-class immunologist from Bond University (though soon to move to Griffith, partly so as to be connected to a hospital where they plan to run inpatient trials……very very interesting and supportive stuff) Dr Marshall-Gradisnik has already published groundbreaking data about CFS and this month her latest research regarding biomarkers will be published. In summary, and forgive my lack of detail as I am dealing with a both forgetful and unscientific mind…my own I’m referring to!….the research further expands the knowledge that the natural killer cells our bodies need to fight viruses and tumours are both lacking in numbers and severely impaired in ME/CFS sufferers. One thing this explains is the bad reaction to vaccinations. (However the clinicians pointed out that each individual needs to weigh up the risks in not being vaccinated when travelling etc…ie: much worse to get HEP B than deal with the reaction…..) In addition, these cells are coded in our genes.  Critically, Dr Marshall-Gradisnik plans to do further research now, in partnership with Stanford based researchers in the U.S. on the hypothesis that we are dealing with an auto-immune disease.

Being privy to a not yet released paper was enough to make me already glad I was there, to also witness Dr Marshall-Gradisnik’s empathy and professionalism was a bonus.

Dr Donald Lewis, a GP specialising in CFS treatment in Melbourne, spoke next. If you are an adult looking for a CFS knowledgeable GP in the Melbourne area I’m guessing he’s the guy. He spoke with GPs in mind, giving tips on diagnosing and helping CFS sufferers. It was a comprehensive and detailed presentation that will best be captured when the seminar DVD is released (I’m making an assumption there as I saw there was one of last year’s seminar….). Dr Lewis viewed CFS as a tree. The roots were ‘a genetic predisposition + food intolerances’, when these roots were watered over and over again by stressors, you end up with the branches of OI, headaches, sleep problems etc. He also expressed this as an sensitive immune system being overstimulated continuously , for example by a food intolerance, until one significant event (eg, Glandular Fever) results in overload and ME/CFS. It made a lot of sense to us and highlighted what we have been aware of but trying to ignore whilst we enjoy our girl’s ability to attend school and function so much better. And that is that we have to work out the root cause of her CFS. As her dad is dairy sensitive and she has demonstrated sensitivity too, this will be where we will start until we get her tested. She chose to switch to soy milk months ago but refuses point blank to give up cheese so we have a challenging time ahead…especially as she needs to be able to make these decisions for herself and have control.

Dr Lewis also spoke about how the fight or flight response caused by production of adrenalin and , in CFS sufferers, oversensitivity to it IS THE SAME as an “anxious’ response and hence it is indisputable that ME/CFS is NOT a psychological illness but very clearly a physiological one. (But we’re all on board with that one anyway right!) He spoke about how people with ME/CFS have to become experts at managing stress and anxiety responses as their bodies are constantly under physical attack. Which confirmed what I have been telling my girl for months: ‘your body is tricking you into thinking there is something to worry about when there is actually not. It’s just a physical overreaction by your poor immune system’ or something along those lines. She also uses Rescue Remedy and deep breathing which works somewhat for her.

Our clinical pharmacologist, the amusing Dr Chris O’Callaghan spoke on Orthostatic Intolerance in isolation…ie; not specifically how it relates to CFS but what it is and why it happens and what can be done about it. As it is a major symptom for many CFS sufferers the talk was received with interest. Since we have already spoken in depth with Dr O’Callaghan there wasn’t much new here for us. He did however state categorically that exercise does NOT help all OI sufferers. (I think he said 50/50 but I can’t be sure)

After a tea break we then heard sleep specialist Dr David Cunnington talk about managing sleep and ME/CFS. As our girl’s sleep is under control thanks to magical melatonin (although a reminder to people that melatonin needs to be taken 12 hours before you mean to get up, which is a few hours before you actually go to bed. Our girl generally takes hers about 7 and then turns her light off at nine and is asleep by 9:30.) One thing Dr Cunnington mentioned which I wanted to pass on is that a) other sleep disorders can occur in people with CFS/ME b) they present differently and c) they have more impact because the body is already so sensitive. He particularly mentioned that a GP may ask someone if their partner says they snore and gasp/choke for breath while sleeping and if the answer is no the GP will say ‘not sleep apnea then’ when actually because ME/CFS sufferers bodies are so sensitive they will wake themselves (from sleep apnea) before these symptoms appear.

Dr Kathy Rowe, who we are lucky enough to have as our paediatric CFS specialist, spoke last to present her study that she previously presented in Ottawa and I have already discussed in this post.

All in all a very interesting afternoon. I spoke with a mum who attended this seminar 10 years ago and she said how much more positive she felt after today’s seminar. I felt the same. We are getting there. It’s just a slow process for those who are sick and their carers.

I’ve tried my best to report accurately on what I heard today but I will have missed much. My apologies to the speakers if I have misrepresented anything they’ve said and if, as a reader, you are particularly interested in any point please go directly to the research and practitioner. I may have got it wrong!