parentingcfs

Navigating adolescent CFS

Everyone’s growing up. November 27, 2012

Filed under: CFS Diagnosis,CFS Symptoms — parentingcfs @ 10:36 am
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It often takes an incident to make you realise how much you have changed.

Today I took my 11 year old son to the doctor because he has been having a lot of pain down the backs of his legs. It’s not something his sister (with CFS) has experienced BUT:

1) he is almost the exact age she was when she first became ill

2) he is growing fast (as did she)

3) it is highly likely that our girl’s condition, whatever it is, includes, at the very least, a genetic predisposition (ie my genes + my husband’s genes + ? = perfect storm)

4) he has been experiencing occasional dizzy spells, headaches and near constant fatigue for over a year

so you may understand that we are a little concerned.

So perhaps you’ll also understand that when this GP, whom I like very much, said he couldn’t explain why our boy was having these pains (especially only in his calves and hamstrings) but that he wasn’t worried, I didn’t exactly feel relieved.

Two years of coming to terms with the fact that no one, even doctors, has all the answers and now I just breathe, say thank you and keep looking.

It’s not paranoia, it’s educated realism.

Anyone else have experience with this kind of leg pain, in both legs?

 

“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.

 

 

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.