parentingcfs

Navigating adolescent CFS

Two and a half years…but who’s counting?! October 7, 2013

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 4:17 am
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Hi all

Apologies for my long absence. I have thought many times of my blog.

As all who know this illness know, there are so many unknowns that I find I’ve become a little fearful of reporting what’s working for my girl lest it be completely the wrong thing for your child.

Thus I hesitate (as always) to speak in absolutes. However, I know that many of the people who read this site are valued friends who may like an update and others are as aware as I of the inconsistencies and will mull over my thoughts as they are meant to be mulled over…just another ingredient in the pot of parenting cfs.

The thing is, you see, I have goodish news. And whilst one part of me wants to shout from the rooftops, most of me is terrified I will jinx things if I open my big mouth…

But, ‘A life lived in fear is a life half lived’, as we were reminded in that excellent 1980s Baz Lurhamm film “Strictly Ballroom”. 🙂

So here goes my cautiously optimistic rooftop shouting!!

A list of things that my daughter does now that she couldn’t last year:

Leave her bedroom every day for places other than the bathroom.

Regularly sit upright at the dining table for meals.

Leave the house just about everyday!

Joke around with her younger brother for more than minute without getting so tired from the effort that irritation quickly sets in.

Face social visits from friends with equanimity. (ie not almost paralysed with fear about the effort it will take or how ill she will feel afterwards)

Go for a short walk with me just because she can.

Look forward to family holidays. (previously the travel was too exhausting – low BP and flying don’t mix-  and the change in environment too much and hence exhausting)

And I’m sure there are many other things but….. I’m just busting to write the biggest and newest development…..are you ready….this is like huge…..you might need to sit down. Okay, here goes : SHE’S READING AGAIN!!!! And when our girl reads we are talking a book every day or two so we can really tell because we’ve had to add the local library back on our list of places to go as the budget was not coping with bookshop visits!!

So there now, after all my conscientious hesitation I’ve gone and got all excited and blurted it out!

I know that those of you with ill children will want to know if something particular has helped, and I feel your need deep in my heart, but I have allowed myself a tiny bargain with fate. You see, this Thursday, our girl will try to get to school for the first time since February.  It’s a huge deal for her and thus for us.

She suggested trying a maths class. I countered with “How about English?”. Her specialist said, “How about an elective and no homework?” !!

So this Thursday, all being well, our girl will go to school at the start of the day, watch a PE class and then do an art class. Then come home. And if that works she will try again the following week.  (And her parents will buy a massive bottle of champagne and drink it quietly so that our precious girl doesn’t know how much we care that she is back at school!! Because our hopes and dreams for her are the last thing she needs to think about.)

And if it doesn’t work out. … Well, we’ll take a deep breath, regroup and keep going. Like we always do.

Either way I will share with you the huge combination of things that MAY have helped our girl.

The thing is,  it could simply be that her growth spurt has slowed. We may never know.  Or next week, after months of improvement, it may all have gone backwards again and I will have no words of wisdom to share. I hope with every fibre of being that is not the case.

Please keep your fingers crossed for Thursday.

Smiling and waving somewhat frenetically!!!

 

 

 

Midodrine? April 27, 2013

Hi all

Just a quick post…is the plan!

Shortly I am heading off to a seminar about to be given by NZ Dr Rosamund Vallings. More about that after.

Wanted to share that our darling girl has been more active this week than she has been for ages! Has been out of the house EVERY day except one..and not just for a car ride.

Sun: helped friend get ready for dance competition

Mon: appointment

Tues: visited old primary school for 90 minutes and read/played with 5 to 7 year olds in their class!

Wed: bed

Thurs: 3 HOUR  visit from high school friends, including an hour out of the house.

Fri: 2 hours clothes shopping AND requested stop at playground with 4 year old cousin who we picked up on the way home!! Believe me, I couldn’t redirect the car fast enough!!

And today, Saturday, she has just gone on a quick car trip with Dad. This is sustained activity day after day that has been unknown for a a year now!!! Always hard not to get excited but must enjoy good times too. She’s also been working on Distance Education maths almost daily for 20 minutes.

Briefly I thought,’ooh recovery?’ then remembered we upped her Midodrine dose (a vasoconstrictor to help pump the blood back to her heart) from 2 pills twice a day to 3 pills twice a day and that probably explains it. But we’ll happily take a good week anyway we can get it 🙂

On a more sober note, our beautiful younger son (11) is displaying more and more troubling signs of similar problems to our daughter and just this morning we found that his heart rate too is jumping 30 bpm when he goes from lying to standing..a sure sign of orthostatic intolerance. Ho hum.  We’ve had to pull right back on sport as, apart from the fatigue, his legs are causing him terrible pain. This week he didn’t run the school cross country race…that he went through to district level in last year. So sad to see an 11 year old boy coming to terms with physical restrictions of his body that no one can fix. He was relieved to hear that doctors and researchers are working hard to help him right now all around the world. Indeed, just over the last 2 days there has been a huge FDA meeting in the U.S. with many fabulous people who are trying to help solve this mystery. Apparently one doctor said he tells his young researchers that CFS is the best field to get into because it is the most complex medical puzzle out there. Here’s hoping we can help our precious kids soon.

Anyhow, must get on with the day. Hope all is well with you.

 

RCH Specialist review appointment April 11, 2013

Filed under: CFS Treatments — parentingcfs @ 12:48 am
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I think, in the world of the CFS diagnosis, we have been rather blessed to have our specialist. Whilst she has not been able to offer us much in terms of treatments or explanations, she has the wisdom of vast experience. True, the lack of answers is incredibly frustrating but at the very first appointment this doctor told us one thing that has helped us keep our sanity and that was that our child’s social life must come first (before academic and sporting..although if any of these overlap it is ideal) I’ve written about this before but it’s impossible to overemphasis just how helpful this advice has been for us as parents.

In short, when your child is struggling to hold onto their ‘real world’ by their fingertips the temptation to think ‘school attendance above everything’ is great. And certainly, if your child has the energy to keep attending, study and socialise, or even just attend and socialise it’s a good way to do it. But when you take into consideration the child’s inability to sensory gate, let alone see the page in 20/20 vision it’s easy to understand why school attendance is so exhausting.

Our child recently told us, after struggling to attend once a week for months, that it was just too hard to be there now so no fun at all. And if a CFS kid isn’t enjoying school (most of these kids like studying when they are well and many love it) it’s time to look at other options.

So, our girl is no longer attempting to get to school but has started Distance Education maths with a view to staying out of school for the rest of the year if necessary. This has taken a lot of physical pressure off her body and has been the right decision for her at the right time.

Yesterday our girl came to her specialist appointment for the first time in 6 months. I had attended the previous two alone as she had been too unwell. ( I suspect this is the only illness where parents regularly rock up to appointments alone?! Certainly our specialist never betrayed surprise!) I was relieved to have her with me as I suspect the doctor was that I did.

Our girl left the appointment feeling good about all her choices. She had told her specialist that she was happy to no longer be trying to get to school for the time being but hoped to get back into it gradually next year. Also that she has regular visits from friends and from next term will be going to her old primary school, on the next block, for an hour once a week to read with the 5 to 7 year olds. The primary school is delighted she wants to be there and happy for her to come or not come depending on her health that day.

I still have my angry and sad moments. I wouldn’t be human if I didn’t. And sometimes I wonder if I should be angrier. But, for now, acceptance is serving my daughter well. I’m still looking for answers and following the research ..more about that later…

At this point my daughter is rarely in pain. Her main symptom enemies are bone heavy fatigue and nausea. If pain were a bigger issue we would not be accepting the status quo. Would not be able to.

Enough for now. Smiling and waving.

 

The baby March 21, 2013

Filed under: General — parentingcfs @ 4:48 am
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Once upon a time there was a girl who was so sick she couldn’t go to school anymore. Everyone knew that she would wake up one morning and feel well enough to go again but, in the meantime, the girl and her mum tried to fill the days with other things that were helpful and not too exhausting and, well,  just made her feel good and less like she was missing anything.

The girl had always been great with words. Before she got sick she often read a book a day but now she struggled to read one a month as it was just too hard to keep the plot lines in her head. She found that she could still write bits at a time though, if they were about things she wanted to write about and not too long. After she had to stop going to school ,she started putting some of her writing online. She decided to keep it very private so that no one she knew in the real world would know it was her writing. Except her mum – who was privileged enough to be shown some pieces and felt the honour greatly!

After 2 weeks the girl had 457 people following her ‘vignettes’! After 3 weeks she had 607! The girl was pleased that people liked her writing and the days seemed to go less slowly.

As the girl was very smart about her privacy, she had decided to use her unusual middle name as her pseudonym online. She started having conversations with some of the people who liked her writing. One day she woke up to find a special message. It said that a girl found her writing so inspiring that when she was given the chance to name her little sister who had just been born, she chose the girl’s pseudonym!! The girl was terribly ill and missing her friends BUT SOMEONE HAD NAMED A BABY AFTER HER BECAUSE OF HER WRITING!!!! What a day. The girl told her mum. Her mum asked if she could share the story on her blog as it was so special. The girl said yes.

I hope this made your day too. Best wishes to the new baby. May the name bring her much luck.

The End

 

The gift of kindness. January 21, 2013

Filed under: CFS Treatments — parentingcfs @ 9:05 am
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Hey all.

This is a post I promised back before Christmas and well, one thing led to another and now it’s a month later.

I wanted to share some lovely stories.

As you may know, our girl started high school last year. For the first 5 months she was able to attend everyday although she didn’t participate in sport. For some reason, late in second term, she started going downhill again and has been to school rarely since.

I could (and have!) puzzled through the reasons for the sudden change but that’s not what I want to write about today. Today’s post is about the generous spirits that one meets in life.

I will always be incredibly grateful that our girl got to experience those first 5 months of high school. It allowed the school to get to know her potential and personality and her to make friends.

Two of these friends have visited her several times since her health worsened back in June. The first time, they brought her a suitcase full of little presents and a card signed by the class with a piece of news about each person! Those of you with ill children will understand just how precious this thoughtfulness was. They never came empty handed and then, late last year, they called me to ask if they could throw her a surprise Christmas party as she had missed out on so much!!!!

These are 13 year old girls I must remind you…..how exquisitely heartwarming is this behaviour? I asked if they could keep the numbers below 10 and the party short and in mid December I took our girl over to one of the friend’s places where she was duly surprised! And again showered with presents!!!

While I had a cup of tea and chat in the kitchen, I caught occasional glimpses of our girl. At the surprise, she had tears of pleasure on her cheeks. After an hour, she said she wanted to try to stay for another half hour. And then another half hour after that. When she finally dragged herself into the car she was quietly radiating joy and utter disbelief that others would do so much for her. “I can’t believe they did all that for me,” she said. (As her doting mother of course it seems only natural to me but I may be biased!)

Is our girl special and kind like these girls? Yes, of course she is. Would she have thought to organise something like this if the situation were reversed? Possibly. Could I have bought this positive support (and the impact on her emotional and physical health) from her peers? Never in a million years. These interactions, when she is missing out on so very much, are priceless.

I am so touched by the generosity of spirit shown by these girls and other young people who have made a difference to my children’s lives. When our 11 year old son was struggling with bad muscle pain before Christmas his cricket coach (only 16 himself) quietly juggled fielding positions so that our boy could stay on the field as long as possible. Without being asked. Priceless. Priceless. ( On a side note the pains came up again the one time our boy played a lot of cricket these holidays but otherwise he’s been pretty comfortable as long as he stays hydrated and fed)

I hear from other heartbroken mums whose daughters and/or sons have been ill for many years, or whose peers have moved on to university/ jobs etc, of how isolated their housebound children have become. It’s terrible for the children/young adults and a further knife in the heart of parents who have watched so much taken from their child/ren already and are trying, day after day, to keep everyone’s hope alive.

Many of our daughter’s friends from primary school are the daughters of my friends so it’s easy for me to mention we need a visit. I make our house as welcoming as possible to anyone who wants to drop by unannounced. But to have our girl’s high school friends independently organise things to make her feel better..wow. As you can see I’m still in awe. Of course my daughter is a fabulous, wonderful person but sadly people get so busy in their own lives that she could be easily forgotten if she remains invisibly at home. I dare to hope this won’t be the case and I will do everything within my power to stop it happening.

Have you got any good stories to share about small (or big) kindnesses that have made a difference to your child? Or maybe you are the kind one yourself. If the latter, you are a peach! Know that a little of your time means so much to those who have endless days to fill.

Smile and wave boys. Smile and wave. : )

 

 

“Ignition” November 22, 2012

Filed under: CFS Treatments — parentingcfs @ 10:47 am
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For those of you interested in the cranial osteopathy we are trying, our therapist felt “ignition” today and from her excitement I could tell it was something good!

It basically is what it sounds like ie; the body has been idling and just barely chugging along but suddenly a switch is thrown and the energy starts pulsing properly! Well, something like that anyway!

It was our girl’s fourth session and apparently ignition was something the osteo had been waiting and hoping for. We may see a big improvement this week or it could continue to go in small increments…

The big news is (drum roll please) that our girl read a book on and off for an hour yesterday!!!!!!!!!!!!! That is HUGE as she has been unable to read for more than 5 minutes since July.

It’s impossible to tell if any one therapy is helping more than another. We are just so grateful to see her making some progress in the right direction!

Her current protocol consists of: prescription medication for BP issues and sleep, targeted clinical pilates, supplements prescribed by an expert naturopath, routine bed time and wake time, two minutes slowly on an exercise bike twice a week, one class at school per week, half an hour in sunlight each day and an animal protein and vegetable rich diet, twice weekly visits from friends….and as much laughter and pop music she can handle! Oh and eternal patience from her mother…ooops how did that slip onto the page???!!!!

Actually last week I cracked and had to walk away when she was being uncooperative about taking medication or something ..can’t even remember what it was about! Dad took over and I went away for the night with a girlfriend. Best thing I could have done! Aaah the poor kids, they are remarkable considering how miserable they feel. Tonight she was very nauseous and just looked at me with big eyes and  said, “Make me better Mum”. Such a relief to know she still thinks I can!!

Smiling and waving here again!

 

Barbara Arrowsmith Young November 20, 2012

Filed under: CFS Treatments — parentingcfs @ 8:49 pm
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Phew. It’s one of those weeks where it doesn’t seem possible that it is only Wednesday morning!

Completely off the point of this blog, Monday was AWESOME! (said in musical tones!) For those of you who know me you would know that I am fascinated by the new developments in neuroscience…specifically plasticity and what it means for children with learning difficulties that aren’t helped enough by what is currently offered.

Well, on Monday I was lucky enough to attend a presentation by Barbara Arrowsmith Young,educator extraordinaire and a big hero of mine. So humble, so inspiring.I won’t go on about the details but it really made my year! I can put a big tick next to an item on my life list! Afterward, a taxi didn’t turn up,so I also drove her and a colleague back to their hotel, which was so exciting I’m thrilled I managed not to crash the car!! (oh and eternally grateful that the car had been recently vacuumed!)  There are many areas of the brain that need to be engaged when: driving, trying to think of intelligent things to say, finding the way and dealing with an out of body experience!

Anyway enough on that! Monday was also a long awaited day as we had our first appointment with a naturopath who is renowned for her skill here in Melbourne. So our girl has a new protocol to follow that includes various herbs, some Chinese medicine pills and 3  x 30g minimum (preferably animal based) protein a day. I will tell you more when we see some results.

Last night I went to an information night at my daughter’s school. Bad idea. What was I thinking?? Turned out to also be a celebration of what the Year 7s had achieved this year and it brought home all that my precious girl is missing out on. I was lucky enough to have a pretty great time at high school and I so want that for her. Ah well, maybe next year.

Meanwhile she is certainly better than she was 6 weeks ago. She has had a few sessions of a very slow 2 minutes on the exercise bike these last weeks with no noticeable downhill slide so here’s hoping.

May your news be good news.