parentingcfs

Navigating adolescent CFS

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.

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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.