parentingcfs

Navigating adolescent CFS

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.

 

Things I have learnt about mornings and food/drink. March 26, 2013

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:49 pm
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Life is nothing if not a learning experience! And these last 2 plus years have been all about learning for me. I’ve talked before about how I’ve learnt to live in the moment. I’m much better at just enjoying moments when I can and not worrying about the next day. Not perfect but much much better. But this post is about what I’ve learnt about how to help my daughter get through this illness. I thought I’d share with you and also see for myself how many things I am actually aware of. (Oh and yes, for those of you who know me, I AM procrastinating and really should be listening to a lecture on ECGs and cardiac rhythm..but it will still be there when I’ve finished this!)

Ok so what have I learnt?

1) The way my girl wakes up in the morning is rarely indicative of how she will feel for the rest of the day. I believe now that her struggle to surface and be positive about the day ahead is due to a) the topsy turvy cortisol situation, which means she hasn’t had the wake up hormone burst the rest of us get and b) lack of fuel to her body due to not having eaten or drunk anything for at least 8 hours. No decisions should be made about the day ahead until she has eaten and drunk and been awake for an hour, if possible.

2) If I can get her to surface enough to take her 2 midodrine pills the small amount of movement required for that (she usually keeps her eyes closed) and the vasoconstrictive effect of the medication will often mean she will be checking her Facebook on her iPhone within 10 to 30 minutes. (No computer allowed until she has been outside for 20 mins – strict but she’s mostly up to it. If even the laptop lure can’t get her outside I know it’s a very bad day) I wander in and out with some pretext or another until I am sure she is awake. (Very very rarely do I wake her after 8:30am. She herself is keen to stay on a regular schedule even though she sometimes doesn’t get to sleep (not bed) until after 12 )

3) At this stage, whether she is hungry or not, food must be supplied and, unless severe nausea absolutely prohibits it, must be consumed as soon as she can manage it. (see 7)

4) It is almost pointless to ask what she feels like eating and often counterproductive as just thinking about it can a) increase the nausea b) befuddle and irritate an already cognitively impaired brain that is struggling to function. Irritation with mum = resistance to eating.

5) If our girl’s appetite is particularly dodgy I try to provide 4 or 5 small dishes – just leftovers, cut up apple, yoghurt- and almost always something will appeal. (I know another mum who notices that if she can get her son to eat something, he will often eat everything! This sometimes happens with our girl too)

6) Whenever possible food and drink should be consumed no less frequently than every two hours through the day.

7) Peppermint and ginger tea are great for nausea and will almost always be accepted if nothing else is palatable.

8) A late night snack when she is lying awake trying to get to sleep seems to be a good rather than bad idea. (Helps blood glucose levels overnight? Not sure if effect would be extended enough?)

9) Food intolerances/food as medicine/ food as the cause of illness are all massive topics and not something I can explore here. a) not knowledgeable enough b) have no answers. Suffice to say the majority of food my daughter is offered is fresh, organic and wheat and dairy free. HOWEVER I have not had the heart (or courage or energy….) to impose dietary restrictions on a 13 year old. She knows my opinions and that I will wait for her to come onboard. She had very nasty abdominal pain after a rogue coca cola last month and I highly doubt that will be experimented with again. She is partial to a BLT when given the opportunity and hot chips never go astray. As much as possible I try to cook according to Dr Terry Wahls diet. Fantastically inspiring to watch.  Basically processed food out, fresh organic real produce (including as many green and coloured veg as you can cram in) in. It’s not rocket science. I know some who have identified glutamate intolerance. I don’t know enough about it yet to say how they affect my daughter. If she’s interested, we will explore it down the track.

10)Hmm I’ve forgotten what 10 was!!! If I remember I will come back and edit the post!!! If I don’t publish now, it will be another week!

Okay, that’s all for now. I started this post thinking I would talk about everything I’ve learnt about parenting this illness but realised that’s far too big a topic for just one post!

Please let me know if you have any other ideas on this topic. The above are only what I have learnt about MY daughter. By no means is this medical advice.

May today be a good day with you.

 

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. : )

 

 

Courage November 12, 2012

Filed under: CFS Treatments — parentingcfs @ 9:57 am
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Being a teenager sick with something that no one really understands requires such strength to deal with the never ending questions of your own parents, let alone health professionals. “How do you feel today? ” “Is your brain fog a little better?” ” What number would you give your nausea levels today?” “Are you hungry/thirsty?” “Are your legs throbbing or aching?” Then there’s the courage required to battle through the symptoms you are dealing with to have as ‘normal’ a life as possible. For some that may mean being able to get out of bed for an hour, for others getting to school despite feeling weak, sick and confused. I am so often moved to tears by the tenacity of the children I know who are struggling with health issues.

There is also a certain amount of courage that one has to find as a parent. I know there are parents who have had to find a lot more courage than I. However the courage I want to write about today takes the form of fronting up to the established medical system and daring to question established ways of doing..because they simply aren’t working for our children. It has taken a great deal of courage for many of us to question our trust in doctors and hospitals and to go ‘outside the system’ and past the double blind studies!

One of my friends recently pointed out how visiting good alternative practitioners with her child leaves her feeling hopeful and supported whilst leaving a specialist’s appointment most often finds her despondent and desperate. I have been hearing a little here and a little there and am hopeful that western medicine is starting to realise that there is much to be learnt from ‘eastern’ medicine and embracing a more holistic approach.  We are fortunate to see several doctors who completely understand why we seek answers ‘outside the system’ and yet there have been many times over the past two years where I have had to brace myself for the questioning looks and polite dismissal of any ideas not in that particular doctor’s immediate area.

I am not explaining myself very well. It is getting late and I am tired after a rather intense day at work. However I wanted to share with you an interview with child and adolescent psychiatrist Professor Graham Martin,an international leader in suicide prevention, educator, researcher, a sometime thespian, poet, mediator and black belt in Karate. In 2009, his life took a radical turn when he was suddenly paralysed, and the tables were turned – doctor became patient. He eloquently describes the limitations of our current medical system and what can be gained by embracing other options.

For all those parents and carers who have felt let down by the medical system and had to grit their teeth and accept that double-blind studies are not the only answer, this interview is for you. Enjoy it here !

 

Enough November 7, 2012

Filed under: CFS Treatments — parentingcfs @ 11:47 pm
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OUR GIRL WENT TO SCHOOL TODAY.

Did you catch that? Maybe I should say it again? OUR GIRL WENT TO SCHOOL TODAY.

Okay I think I have got that out of my system – for the moment at least…

First trip to school since early July.

One period. That was enough. She chose Maths because the teacher ‘gets it’. He is a new grandfather who replied to my heads up email , ” No concerns. I will look after her.” Sweeeeeet and exactly what she and I needed to hear!

And he did. The class had a small amount of set work but otherwise I rather suspect he let them socialise a little more than usual and just made it a very pleasant return for her. Now THAT’S a true teacher. Today, for one hour, the student’s life he could most make a positive difference to was my daughter’s – so that was the class aim.

And yes, socialising is super tough and exhausting for our girl but it was the right thing for this morning. And she says it was ‘really hard’ but she can’t stop smiling and says she was sitting in class hardly able to believe she was there.

This is the thing for now. For her to learn what is worth doing, even though it’s really hard energy wise, and how much of it she can do without feeling iller. She tells me she will go back the same time next week.

For those of you who have seen “Love Actually” (yes many viewings to keep my sick girl company) you may remember the scene where Keira Knightley’s character runs after Andrew Lincoln and kisses him, then runs back to her home. He pauses, smiles and says one word to himself. “Enough”

It is the perfect word for today.

 

NEW Royal Children’s Hospital Melbourne CFS clinic August 13, 2012

Oh my. I almost have to pinch myself to believe. This morning I have taken my beautiful daughter to a clinic filled with compassionate professionals who who were purely there to help us deal with the ME/CFS  mire as best we could. You know, the kind of clinic that other chronically ill kids get referred to upon diagnosis?

It is a new initiative that Dr Kathy Rowe (and maybe others that I don’t know of) have fought hard to get up and running. Funding is very limited as I understand it (surprise surprise) but it has been especially earmarked for this project – and there is research going on as well! Halle -bloody-julah!

The clinic operates Mondays and Fridays. This morning our girl saw an OT and physiotherapist mainly together, then the physio got her to do one brief exercise, took heart rate etc. After that we saw a teacher consultant who actually provided us with papers for a student health support plan. Crazy that this is the first time we’ve seen one in 18 months of illness. Also heard about the Education Institute where our girl is entitled to access 40 one on one tutoring sessions a year! Who knew?! I can’t tell you how it felt to have the resources, that other chronically ill children in Australia get, offered to us with the CFS diagnosis. This acknowledgement, whilst still in its’ infancy, means the world and I sure hope is a sign of thinks to come. It cannot come too quickly.

Our girl also had a 45 minute session with a young psychologist which she seemed happy enough about. The approach seemed very supportive and my 13 year old felt comfortable enough by this stage to be fine with me leaving the room. It was a great sign. After that we saw the rehabilitation doctor who is overseeing the clinic. He just got some of the medical details and had a little chat.

Then our girl filled in a psychological test to gauge where she is at. She found some of the questions hard to answer..natural modesty interferes with how one thinks one should respond to “I think I am smart’ for example! However she had no hesitation when it came to answering “I like to hurt animals” with a resounding NEVER! It gave us a few giggles (not the idea of hurting animals obviously) and she kept looking to me for answers and I had to remind her it was how SHE felt about the statement and herself, not me.

Things such as the psychological evaluation and some goal setting that our girl did with the OT (getting to school was the top of her list, as was being able to get out of bed everyday!) helps the team to evaluate outcomes. Science…we like that!

The team is meeting now to see what they can offer us. I suspect it will be participation in the Outpatient program (attendance once a week for 4 to 8 weeks) with the inclusion of our physiotherapist that we discovered last week. RCH does now also have an inpatient program that runs for 4 weeks. There’s a HUGE waiting list for the clinic already apparently and they’ve only been going 3 weeks. We feel lucky to have somehow got in so early.

The emphasis seems to be on helping our girl get a grip on how best to manage the illness in the long term (although she will recover) as well as improving what she can do in the short term.

I’m just so pleased to see such a service up and running at the Children’s. Now to keep the funding going.

I’ll let you know what we hear.

Big smiles!!

 

 

Physiotherapy Part 2 August 12, 2012

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 8:05 am
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For those of you who are interested our second visit to the physiotherapist also went well.

I asked more questions which he patiently answered and my girl did various pilates exercises. At one point, with the help of some equipment she raised her legs to nearly 90 degrees for the first time in over 18 months…..

She has continued to do the set exercise a little each day and has been getting up and showering every morning and had a few outings!!! All very exciting.

Of course, it’s very early days but she just might have pulled out of the several month long crash for whatever reason….I hope.

School as always is the test. However tomorrow we are going to a four hour clinic at the Royal Children’s Hospital. It is a newish set up. We will see an occupational therapist, a clinical psychologist, a rehab doctor, a physiotherapist and an education support person.

Such a long clinic is not ideal but having spoken to the coordinator now I can see it’s early days and they really are trying to get their heads around what they can do to help. My daughter was point blank refusing to go because the session was so long and ‘they can’t help me anyway’ (so sad to hear her say). However she spoke to the lovely coordinator on the phone on Friday and has declared her ‘an angel’ and feels that she will be understood and looked after and is happy to go. Terribly early start for us but hopefully will be worth it.

I’ll let you if I learn anything new!

Best wishes, smiles and waves! x