parentingcfs

Navigating adolescent CFS

Thankful Thursday May 9, 2013

Filed under: General — parentingcfs @ 3:52 am
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In no particular order, today I am grateful for: (apart from the usual 2 arms 2 legs etc!!)

– an unseasonably warm, sunny day in Melbourne

– my supportive, self-disciplined and generally awesome husband and the fact that he has been at home much more than usual

– the way our amazing 11 year old son has calmly accepted that dairy is causing him problems and is carefully avoiding it without me having to expend any more energy on cajoling him (I think I may finally have the impetus to quit sugar…if he can do this when he loves milk, I can too)

– the way my daughter happily occupies herself for hours at a time and likes time without me (gives me a freedom that I would miss badly if it weren’t the case)

– the fact that my daughter is still doing well on midodrine and managing to get out most days (yay yay yay yay). Just hearing her well enough to have a shower right now makes my heart lift a little

– the wonderful primary school my kids went to who have been nothing but supportive and are running a fundraiser next Monday organised by my son

– the supportive head of junior school at my daughter’s high school

– my family and friends who listen and make me feel that I’m doing the best I can parenting this $%#&* illness, make me laugh and understand. You know not how important you are!

– the new friends I have made who are also parenting/living with this illness. Wouldn’t be without them.

– the fact that we were able to tell our son that scientists and doctors worldwide are working right now to work out how to stop his legs from hurting all the time and stopping him playing sport.

–  the delicious sweet potato mash with lentils and Japanese dressing that I just ate for lunch!

– the fact that I was eventually able to pick up a 3 month supply of midodrine yesterday despite initial refusal at the hospital pharmacy even though doctor had recommended. Going monthly has been a pain in the patoozie. Big win. Sounds small but big deal for me with current life logistics!

– Facebook! (location of many friends I would otherwise not catch up with at the moment and also others going through similar problems with children’s health)

– the family members who feed us on occasion, dietary requirements and all…..so so grateful for meals I don’t have to think about myself!

– good tv!

– the lovely blue earrings my husband gave me for our 20th wedding anniversary last December!

– and last but so definitely not least, the people worldwide who are not giving up on solving the puzzle that is ME/CFS

Lots to be grateful for huh?! What about you?

On with the day. One moment at a time.

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Dr Rosamund Vallings MNZM, MB BS April 29, 2013

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:26 pm
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Last weekend I was fortunate enough to attend a seminar given by Dr Vallings here in Melbourne.

Dr Vallings is a New Zealand GP who was a medical student in London in the 60s. Many of you will have heard of the epidemic at the Royal Free Hospital there in 1955 which is one of the known cluster outbreaks of Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome aka Royal Free disease. As a student, Dr Vallings “stood at bedsides” of the many hospital staff that remained chronically ill from this outbreak and studied this disease as a small part of her curriculum. In NZ her practice has become a beacon of light to many CFS/ME sufferers.

As she explained at the seminar, she decided to write her book “Chronic Fatigue Syndrome M.E. Symptoms Diagnosis Management” so that she could retire. In reality, the book has had the opposite effect, with her expertise becoming even more sought after by patients and colleagues alike.

I can thoroughly recommend the book. As you know I have been reading widely about CFS/ME since my daughter’s illness was diagnosed 2 years ago. Yet there is much in the book that is very helpful information for patients, practitioners and carers.

Dr Vallings talked for more than two hours (with a break for the poor CFS/ME sufferers in attendance in particular) and I felt we still only scratched the surface of her knowledge!

These are some of the things I learnt (or relearnt!) last Saturday: ( Whilst I do not have CFS/ME, my brain is older than it was and I don’t have a science degree. Any mistakes are mine entirely and none of this information should be taken as medical advice)

– The ratio of females to males affected appears to be more like 3:2 than the 5:1 previously believed.

– The severity of illness depends on the immune cascade

– Symptoms of relapse (and crashes) tend to mimic symptoms of the initial infectious trigger. ie; if the trigger was glandular fever/mono symptoms such as swollen glands etc will reoccur)

– In people with CFS (PWCs) the immune system is overactive and it is likely that the natural killer cells wear out.

– Slow gastric emptying is a symptom caused by the blood pressure issues. The bloating many feel after a meal is, in many cases, a result of food sitting longer than it should and being swollen by consumption of liquid, therefore it’s better not to drink too much at mealtimes….

– Fibromyalgia is likely (going?) to be renamed Central Sensitisation Syndrome shortly.

– Avoid too much Vitamin C as this stimulates what is probably an already over stimulated immune system.

– A rotational approach to food is best ie; eat food types on a 3 or 4 day cycle.

As far as the difficult area of exercise goes Dr Vallings had this to say:

No exercise results in a poor outcome

Too much results in a relapse

It needs to be regular and ,wherever possible, outside.

It needs to start at the level a PWC could manage EVEN ON A CRASH DAY. If that means wiggling your fingers and toes in bed, that’s where you start. If that makes you crash, try wiggling only your toes, regularly. If that fails, try stretching only.

Little and often is the key. (In my mind I call it stop/start exercise and count it when my daughter chases her little niece and nephew around the room)

PWCs must prepare before exercise and rest after.

And finally, build SLOWLY and avoid crash and burn (particularly difficult with teenagers!)

As regards supplements:

Of course she said be careful and sceptical.

She discussed Vitamin D, Omega 3:6 ratio should be 2:1 if taken, Vitamin B12 injections often helpful, magnesium, CoQ10 and D Ribose can help some.

And, for all my dear cyber and real life friends who are parenting this horrid illness, I’d like to reassure you that Dr Vallings reiterated that our precious young ones (we were particularly talking about onset around 11 years) are highly likely to recover. 🙂

There is more in her book and she spoke about much more. If you have any particular questions please ask in the comment section and I will answer if I can.

I’d like to end on a positive note. Dr Vallings said that in the first 20 years that she saw CFS patients very little research was done. Then there was 5 years when some was done. And in the last few years much has been done. She said something like 100 pertinent studies are published in reputable journals every 3 months at the moment. Don’t give up hope, she said. For at least some of the subsets, the answers are not very far away at all.

Here’s hoping she’s right.

 

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.

 

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. : )

 

 

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.

 

The joys to be found in poetry September 4, 2012

Filed under: General — parentingcfs @ 9:02 am
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I read this poem recently and have given a copy to my daughter. I feel it’s a beautiful reminder that we don’t always need to be going somewhere to be making the most of life. This post is for all the kids I know of doing it tough as life takes a path a little different to what they had expected…and to their parents. May you have days when you are well enough to enjoy the stillness. xxx

 

Leisure

What is this life if, full of care,
We have no time to stand and stare.

No time to stand beneath the boughs
And stare as long as sheep or cows.

No time to see, when woods we pass,
Where squirrels hide their nuts in grass.

No time to see, in broad daylight,
Streams full of stars, like skies at night.

No time to turn at Beauty’s glance,
And watch her feet, how they can dance.

No time to wait till her mouth can
Enrich that smile her eyes began.

A poor life this is if, full of care,
We have no time to stand and stare.

 

William Henry Davies