parentingcfs

Navigating adolescent CFS

What we think’s worked for our girl…so far…Part 2 February 10, 2014

Filed under: CFS Treatments — parentingcfs @ 5:05 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.

G’day.

I’m absolutely thrilled to be able to tell you that our girl is back at school for 3 hours, 3 mornings a week. We are terribly, terribly proud of her and her determination but as we know too well no amount of determination would get her there if she hadn’t had enough improvement in symptoms.

Very difficult with this illness to quantify change but I’ll try!

What has changed?

-much less nausea

-slightly more energy

-less light sensitive (no longer lives in a darkened room)

-able to concentrate for around 20 minutes on written work. Sometimes 30.

So this post is about what, other than prescription medicine, appears to have helped our girl back onto her feet. Literally! These are in no particular order.

1) A large amount of self- determination. ie; me letting go as Mum and allowing her to decide what she could do, when. Forgetting about other people’s expectations. Accepting that ‘the norm’ for our child was not ‘the norm’ for everyone else.

2) Not always allowing her to be in charge. Yep, complete contradiction to the first one. Welcome to my constant second-guessing world!!! I know all you other carers out there know exactly what I mean. There are times when some firm encouragement is needed. Knowing when is not easy. As I’ve mentioned in previous posts I would invite a friend to visit without telling my girl this friend was coming. When she was at her worst if she had known she would have vetoed it. The anticipation of energy use would have drained her before she even got to the energy use she was worrying about! But keeping in touch with friends was very very important in the long game and that was what we were playing.

3) an excellent naturopath

4) an excellent psychologist

5) an excellent cranio sacral osteopath

These three professionals have played a very important part in our girl’s improvement to date. Not least because they were other adults she could talk to/rely on other than family.

6) our wonderful extended family. You know who you are. Thank you xx

7) our friends. As above xx

Our girl at her worst had no energy for different environments. But familiar places that she had visited many times with familiar people were occasionally doable and these outings, usually to dinner at family and friends’ , were literally sanity-saving. For all of us!

8) Good food and frequent small meals. Adequate hydration. We were not a family that ate much processed food. We did eat a lot of gluten. Our girl appears to be better on a low gluten diet…though I don’t know if it’s even possible for that to make a difference. We buy organic if at all possible and have cooked breakfasts most mornings. Greens are present at every meal..unless there’s blueberries. Then it’s blues! Dr Terry Wahls Protocol has been my baseline. If you don’t know about it, check it out.

9) Peppermint tea. Great for nausea. ’nuff said. ;)

10) Heat packs. I knew nothing about just how useful these could be for aches and pains until my child became ill. I lurrrrrrve them now.

11) Music. Our girl has listened to hours of music everyday since becoming ill. It has made life worth living for her.

12)Fun. Wherever and however possible. Laughter as medicine. Sometimes very black, very funny humour. We would have been lost without it.

13) Clothes shopping. See above. For about 12 months it was just about the only kind of fun she could handle. Go figure! (A complicated biochemical cause I suspect!) Luckily I don’t mind an hour or so at the mall so this was a way we could have fun together for the long period when she could only be on her feet for brief periods. It was the only exercise she got

14) Supportive schools. We have been extremely blessed with both the primary and high school. Our girl knew she was supported by all and that they understood just how ill she was and would not put pressure on her. Priceless.

15) Other parents’ experiences with their child’s illness. I have been lucky enough to be in communication with many wonderful parents who have given me all sorts of tips that have helped. Thank you.

16) Rest and time. The first was crucial. And yet often had to be balanced with some movement. I can’t explain to you how difficult that can be. The latter is the unknown. Our girl’s growth rate has clearly slowed. She is a 5 ft 9 beauty at 14. Perhaps her faulty vascular system is catching up a bit and leading to improved blood distribution and hence health? Ah, one day we will know the answers…

That’s all I can think of for now. Wouldn’t it be wonderful if this was my last post because things just continue to improve?! I sure hope it is. To all of you out there who have shared our journey, thank you. To those of you who are fighting a daily battle with this illness that has compromised your child’s life, you are amazing. To all, good luck and the wisdom to be kind to yourself.

xxx

 

 

 

 

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!

 

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!!!

 

 

 

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.

 

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.

 

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.

 

 
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