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.

 

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!!

 

 

Just breathe August 7, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 11:19 pm
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Starting to accept our girl isn’t going back to school anytime soon. The bed rest required by the illnesses of winter and the return of nauseous and intense fatigue have resulted in deconditioning that has eroded any strength she had. Terrible cyclical impact of this illness.

Our focus now will all be on getting her stronger and continuing to tinker with medication to try and get her feeling well enough to get her back on her feet again.  We will try to get her stronger by yet again trying to establish a baseline of activity that does not cause her to crash. Feel more tired immediately after yes, but not so that she can’t do the same activity the next day.  Before, we found any additional activity affected school attendance but since there is no school attendance to affect now….

If you could only see how determined our girl is to get better. She’s been quietly putting herself to bed earlier and earlier in the hope that will make her feel better in the morning. (It hasn’t helped….even with the rest that comes from lying there longer trying to get to sleep, even with the medication. She hasn’t complained – she rarely does – I just know from passing her room) And just now she’s done reclining leg exercises and a squat…yes just one from the girl who used to do 50 push ups etc. It’s exhausted her so much that when I asked her if she held on to something to do the squat she couldn’t remember. This is a cruel illness. How brave is it to do something hard , that makes you feel terrible, that only ‘might’ make you better?

On the upside, we are seeing a physiotherapist today who has experience with CFS and should be able to give us more guidance with exercises, which we can then take to our physiotherapist whom our girl trusts.

We also have an appointment with the new team at RCH next Monday. Our girl is currently struggling to see the point of attending the session. She’s beginning to reach the point of  “Please, no more false hope.” This morning she said, “It’s horrible when you realise this isn’t going to go away anytime soon.” As always, her maturity has helped me too move on. I really want to get her to see the team though. Even if we only learn one thing it will be enough. I am puzzled by the logic behind scheduling a 3 and a half hour clinic starting at 8:30am for kids with ME/CFS though. Makes you wonder before you even get there…..

So, in conclusion, she may be not able to do all the things she once could and is missing out on so so much,but…..and it’s a very big but, she is still funny, kind, brave, ours and still here.

Bit of a teary smile today but a big wave!

 

 

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……..

 

 

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… : (

 

This week, in a (rather large) nutshell…. October 28, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 8:33 pm
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Well, it’s been a full on week here in CFS land, both personally and on a research level.

Firstly, our girl has been crashed all week after getting to her school fete last Saturday and a Year 6 competition day Sunday. She understands her illness well enough now that she knew she was going to feel sicker if she attended the weekend events but she was determined to do it. The fete is always a highlight of the student calendar and, whilst she didn’t get to run around like a maniac as in previous years she did catch up with friends, do some activities and make some purchases. From an hour after we arrived she would come back to see me at the stall I was helping with and say, “I don’t want to go home.” Pretty clear her body was telling her one thing while her heart told her another.

Sunday’s activity was a solar boat racing competition. It was because of this team competition that our girl’s routine has involved Thursday and Friday afternoons at school, as this has been when the groups were working on making their boats. Our girl’s group of 4 seemed more interested in their costumes than the actual engineering aspects but they sure fooled us as, in the end, their boat got through to the top 16 in the state. Very exciting. Then, to make the exertion of the day even more worthwhile, their poster entry won them an invitation to write a 500 word essay to win a cash prize! Their faces were comical as they heard what they’d won but the idea of cash seemed to impress them! As our girl was the main author of the poster (and I remember the effort it took her to put it together coherently, vividly) this was a lovely confirmation for her that the quality of her output is still fabulous even though she hardly ever writes extended pieces anymore……….

Anyhow, not sure if the essay will get written since, as I mentioned, the price for all this activity has been a huge whack of exhaustion, increased nausea and headaches and school has not been on the cards. Thankfully we are about to embark on a 4 day weekend due to that most Victorian of events…the Melbourne Cup! Tonight, at dinner, our girl breathed a sigh of relief and said,  “I’m so excited.”

Upon enquiry she elaborated, “Because I don’t feel guilty about not being at school.”

I replied, “That’s great. You shouldn’t feel guilty. You’re SICK” , breathing a sigh of relief myself that she was finally going easier on herself.

“No, no,” she said, ” because it’s the WEEKEND.”

Aaagh. Poor sweetheart. I’ve tried and tried to make being at home and not school as natural and comforting as possible and yet still she tortures herself with what she SHOULD be doing….

Anyhow, and I can see this is going to be a long post – apologies, my CFS week has been dominated by two other new developments. Firstly, in exciting news, Norwegian doctors have had a breakthrough with a cancer drug that seems to have helped a significant percentage of CFS sufferers in a recent trial. You can read about it, if you haven’t already, on the Research 1st website. Any news on probable treatments is extremely welcome as I am ‘meeting’ more and more people whose lives – and those of their families – have been severely blighted by this illness.

Which brings me to my last main bit of news. The wonderful Sue Jackson, whose blog Learning To Live With CFS is simply the most fabulous source of information, has set up a Facebook group for parents of kids with CFS and it’s been wonderful (and sad) meeting many other great parents who have become dedicated carers for their teenage and adult children at a time when our children would usually have been branching out and moving away from us. This group of motivated, caring and supportive parents is a beacon of light in a fairly lonely world and if anyone reading this is in need of support as they parent their CFS child I strongly recommend clicking through to Sue’s blog above and joining us.

In related news, I’d like to make special mention of a parent called Jo who stumbled upon my website whilst searching for anything on adolescent CFS and wrote many lovely comments on my blog in her excitement at finding someone going through something similar to her. I was able to point her in the direction of the support group and she is a very welcome addition. Jo’s arrival warmed my heart… I too stumbled around in a wilderness of no information for a while and it is one of the reasons I decided to blog. Hope your day is going as well as can be expected, Jo. : )

So that’s the week that’s been. Ups and downs just like everybody else. Any news in your world?

 

“It’s just not my time Mum” October 19, 2011

Filed under: CFS Treatments — parentingcfs @ 9:48 pm
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cfs therapy

I love my daughter to bits.

This afternoon she and I sat in the exciting spring sunshine (never guaranteed here in changeable Melbourne) watching my son training for his beloved sport of cricket. The under 14s were training also and my daughter was identifying the boys from her class, in a sort of roll call fashion, to me.

Perhaps thoughtlessly, I was moved to comment that it must be tough for the boys we know with CFS not to be there, training.

My gorgeous girl looked at me, astonished, and said, “Mum, you just don’t get it do you? We’re all right about it. We get it’s just not our time right now.”

Then she smiled her beautiful smile and carried on, ” That’s why it’s so exciting to hear other people’s news like (some class gossip she told me yesterday) because nothing’s happening for us. So we like hearing about others.”

Now I’m pretty sure the boys don’t actually feel like that but ,wow, I sure am glad she does. Even if it’s only temporary. And I’m going to keep colouring in those colouring books with her and okaying trash tv because we must be doing something right. Or maybe it’s all just due to her enormous heart embracing her world in the best way possible.

You have to love the way sunshine makes us feel. x