parentingcfs

Navigating adolescent CFS

What we think’s worked for our girl – so far…. November 26, 2013

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 12:37 am
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DISCLAIMER: The following post contains anecdotal information and my thoughts. It is not meant to reflect medical advice pertaining to any other person.

For those of you who are only in touch via this blog, the news is good. Cautious as ever but good. As we come up to the 3 year mark of our daughter’s illness she is back at school once a week for 2 hours. This may not sound much but as she had been completely out of school for 9 months and barely attending for 8 months prior…well this is huge. And I smile about it every day.

I have so many things to write about pertaining to the last three years but this first post will only be about doctor – prescribed medicines that we feel have helped our girl get back to this stage after a terrible low point for several  months last year.

First, I would like to clarify that my daughter’s symptoms appear to me (and her BP doctor) to have all fitted neatly into POTS (plus PEM? or is that just part of the POTS for some?) ie clearly lack of vasoconstriction and hence inadequate blood delivery to the brain, gut and peripheries. What has caused the POTS is where there are disagreements globally. Clearly my daughter’s connective tissue is somewhat lax. Has it always been that way? Or have there been environmental contributors? More on that in the next post. She has the clicky joints common to hypermobility, but certainly not all hypermobile people are ill. And she belongs in an unusual but certainly present group known as ‘Stiff Zebras’ – ie they have symptoms of something known as Ehlers-Danhlos Syndrome but are  ‘stiff’ instead of ‘stretchy’. So many of the teenagers I come across with a CFS diagnosis are also hypermobile..it puzzled me that my girl wasn’t. It’s possible that her muscles stiffened to compensate for weak connective tissue in her joints….maybe?…..I know one doctor has mentioned it as a theory. (I remind you again that this is really just my ramblings!)

MEDICINES

So, taking the above into account, it is not surprising that the pharmaceuticals that have most helped our girl to regain at least part of her life are related to improving and stabilising blood volume and pressure. Florinef gave her 5 months at the beginning of Year 7 (last year) where she was attending school every day, doing very well academically though still unable to participate in sport. Most importantly she got to make friends at the start of high school here in Australia and those friends (and others from primary school) have been crucial to her well-being. Unfortunately, in May, Florinef suddenly stopped being ‘enough’ and she went rapidly downhill.

In November of last year our girl started on Midodrine (a vasoconstrictor). She takes a dose twice a day and it is very clear when the dose is wearing off as her fatigue and neurological impairment (usually first visible as irritability!) come back with a vengeance. She still takes a small dose of Florinef as well.

In our case, a melatonin dose in the form of Circadin has been an absolute blessing and enough to help her through the initial ridiculous issues with sleep. Without a dose she would be unable to get to sleep until past midnight, despite lying in bed in the dark from 8:30pm. It breaks your heart watching someone try so diligently to follow instructions..in this case in the form of good sleep hygiene..and not get any results…. I am so very grateful that Melatonin worked for my girl. She still takes it but also sometimes listens to sleep guiding meditations…and always listens to music. She has developed an ability to pick music that helps her sleep….

This is a good place to stop. There has been so much more than ‘medicine’ involved in this journey and all of it has been important but it deserves another post! (Plus I really must go on an ‘outing’ with the girl and get away from this computer!)

May your news be good news!

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Two and a half years…but who’s counting?! October 7, 2013

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 4:17 am
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Hi all

Apologies for my long absence. I have thought many times of my blog.

As all who know this illness know, there are so many unknowns that I find I’ve become a little fearful of reporting what’s working for my girl lest it be completely the wrong thing for your child.

Thus I hesitate (as always) to speak in absolutes. However, I know that many of the people who read this site are valued friends who may like an update and others are as aware as I of the inconsistencies and will mull over my thoughts as they are meant to be mulled over…just another ingredient in the pot of parenting cfs.

The thing is, you see, I have goodish news. And whilst one part of me wants to shout from the rooftops, most of me is terrified I will jinx things if I open my big mouth…

But, ‘A life lived in fear is a life half lived’, as we were reminded in that excellent 1980s Baz Lurhamm film “Strictly Ballroom”. 🙂

So here goes my cautiously optimistic rooftop shouting!!

A list of things that my daughter does now that she couldn’t last year:

Leave her bedroom every day for places other than the bathroom.

Regularly sit upright at the dining table for meals.

Leave the house just about everyday!

Joke around with her younger brother for more than minute without getting so tired from the effort that irritation quickly sets in.

Face social visits from friends with equanimity. (ie not almost paralysed with fear about the effort it will take or how ill she will feel afterwards)

Go for a short walk with me just because she can.

Look forward to family holidays. (previously the travel was too exhausting – low BP and flying don’t mix-  and the change in environment too much and hence exhausting)

And I’m sure there are many other things but….. I’m just busting to write the biggest and newest development…..are you ready….this is like huge…..you might need to sit down. Okay, here goes : SHE’S READING AGAIN!!!! And when our girl reads we are talking a book every day or two so we can really tell because we’ve had to add the local library back on our list of places to go as the budget was not coping with bookshop visits!!

So there now, after all my conscientious hesitation I’ve gone and got all excited and blurted it out!

I know that those of you with ill children will want to know if something particular has helped, and I feel your need deep in my heart, but I have allowed myself a tiny bargain with fate. You see, this Thursday, our girl will try to get to school for the first time since February.  It’s a huge deal for her and thus for us.

She suggested trying a maths class. I countered with “How about English?”. Her specialist said, “How about an elective and no homework?” !!

So this Thursday, all being well, our girl will go to school at the start of the day, watch a PE class and then do an art class. Then come home. And if that works she will try again the following week.  (And her parents will buy a massive bottle of champagne and drink it quietly so that our precious girl doesn’t know how much we care that she is back at school!! Because our hopes and dreams for her are the last thing she needs to think about.)

And if it doesn’t work out. … Well, we’ll take a deep breath, regroup and keep going. Like we always do.

Either way I will share with you the huge combination of things that MAY have helped our girl.

The thing is,  it could simply be that her growth spurt has slowed. We may never know.  Or next week, after months of improvement, it may all have gone backwards again and I will have no words of wisdom to share. I hope with every fibre of being that is not the case.

Please keep your fingers crossed for Thursday.

Smiling and waving somewhat frenetically!!!

 

 

 

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.

 

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. : )

 

 

Dry needling December 5, 2012

Filed under: CFS Treatments — parentingcfs @ 5:53 am
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My brave boy just had 4 needles stuck into each of his legs!! Calf muscles. Hell it made ME wince just looking at it!

But afterwards he got off the bed and was like a newborn animal trying out his legs as if he couldn’t believe they were real. He’s happy to go back for another treatment next week so it must have made a difference for him to go through it again!

This was our first visit to this osteopath. She will work in tandem with the wonderful one doing cranial osteopathy on both our kids.

Remains to be seen if this treatment will only be a short term relief or may produce longer lasting changes.

I will keep you informed.

 

“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.