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!

 

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.

 

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.

 

Florinef vs licorice root March 6, 2013

Hmmm, you may have noticed a lack of posts recently. I have started studying some human physiology on line and I am so busy remembering terms like adrenergic synapses and equilibrium potential that my head is reeling and my time a little more limited. However here I am to update you on where we’re at.

Firstly, school. Just too exhausting and no fun anymore. The school has been fantastic as always and happy to go along with whatever our girl wants. It’s impossible to explain the difference this makes to our stress levels. I am so grateful as I hear some awful stories about lawyers having to get involved in the US. Anyhow, our girl is going to try Distance Education Maths. It will hopefully give her some sense of progress as there are so few other ways for her to mark the passing of time these days.

Secondly, medication and supplements. Last Friday, on the recommendation of our highly qualified naturopath, we began an attempt to remove Florinef from our girls medications in the hope that the licorice root she is on will give her enough support to counteract the Florinef lack. I have come to believe that licorice root has other properties..particularly related to gut health…that make it a very important supplement for our girl and it’s inadvisable for her to be on both Florinef and licorice root.

I would say we are seeing a negative impact already, with increased fatigue and sense of unwellness, some headaches and stomachaches. I remember when she began Florinef she responded to it positively very quickly and I think her body is now responding to its’ gradual withdrawal equally quickly. I am in contact with our naturopath and we have another appointment next week. The doctor who prescribes the Florinef and Midodrine that our girl is on is aware of our decision and told me that he prefers Florinef but when it doesn’t work for people he suggests licorice root.

The cranial osteopath we have been seeing has been getting some terrific results with our girl, increased energy and sense of wellbeing (Though not enough to get her back to school- yet). I’m sure it’s the movement of all the body fluids but that’s a very lay opinion! So we’ve been on an upwards path and now we’ve thrown this in the mix. Ho hum.

I will try to post again soon to let you know how we go.  If we need to go back to the Florinef we will. I’m not going to go into a discussion of the different chemical actions of Florinef and licorice root as I am certainly not qualified but rest assured this is not a decision that has been taken lightly!

Which reminds me I saw a great T shirt the other day that advised  “Live lightly, think deeply.” Nice. Even nicer was our daughter’s choice of t shirt on a shopping trip a few weeks ago. It reads “My life story will be a good one.” She says it’s empowering. She’s awesome.

May today be a good day with you.

 

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?

 

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 !

 

RCH CFS Clinic Part 3 August 24, 2012

Filed under: CFS Resources,CFS Symptoms,CFS Treatments — parentingcfs @ 5:56 am
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Our girl woke up with a little more energy today which was good timing as it was Royal Children’s Hospital day!

For a start, going to the hospital is so much nicer now it is in the new building…money well spent I say. Also our girl got to have both parents along this time…you know how much teenagers LOVE that! Nah, it was all very cosy… she doesn’t see enough people at the moment to be too cheeky with the ones who hang around!!

Anyhow, feel great about the hospital clinic again. It turns out that the physio we are seeing at the hospital is good friends with one of the physios our girl’s been working with so all very easy to work together. So the physio session was a discussion of that, a breathing session for our girl…6 deep breaths in a careful position with chin dropped…and a 5 minute shoulder massage!! (Jealous me??? Ok maybe a tiny bit!) The physio says our daughter’s shoulder muscles are incredibly tight. Are your children’s? It was suggested the breathing exercise could be used in class to perk herself up. Deep breathing is certainly something I see as very helpful in helping our girl return to full health. She has breathed very shallowly since she became ill….and of course used to breathe beautifully as a swimmer. That changed overnight.

After that we had a brief session with the lovely Occupational Therapist who gave us some forms to fill in about sleep patterns and daily activity. We have done similar work with the exercise therapist last year and it was very beneficial…it was just the exercise part that wasn’t quite right for us in that situation.

Then we had a half hour break so we could get some lunch and give our girl a rest from concentrating. After lunch our girl had half an hour with the psychologist and then her dad and I did. It was all very supportive eg “Do you have any concerns about…?” etc.

It’s so NICE to have professionals telling you you are doing the right things AND helping you try to make things better. I really do feel like we have a team by our side at last! EVERY child with this diagnosis needs access to a group like this. I’s not everything but it’s a great beginning.

Hugs to all and do tell me if you notice your child’s slumped posture and if their shoulders are very tight? The physiotherapist says posture IS an issue for all of them.