parentingcfs

Navigating adolescent CFS

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!!!

 

 

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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.

 

Things I have learnt about mornings and food/drink. March 26, 2013

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:49 pm
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Life is nothing if not a learning experience! And these last 2 plus years have been all about learning for me. I’ve talked before about how I’ve learnt to live in the moment. I’m much better at just enjoying moments when I can and not worrying about the next day. Not perfect but much much better. But this post is about what I’ve learnt about how to help my daughter get through this illness. I thought I’d share with you and also see for myself how many things I am actually aware of. (Oh and yes, for those of you who know me, I AM procrastinating and really should be listening to a lecture on ECGs and cardiac rhythm..but it will still be there when I’ve finished this!)

Ok so what have I learnt?

1) The way my girl wakes up in the morning is rarely indicative of how she will feel for the rest of the day. I believe now that her struggle to surface and be positive about the day ahead is due to a) the topsy turvy cortisol situation, which means she hasn’t had the wake up hormone burst the rest of us get and b) lack of fuel to her body due to not having eaten or drunk anything for at least 8 hours. No decisions should be made about the day ahead until she has eaten and drunk and been awake for an hour, if possible.

2) If I can get her to surface enough to take her 2 midodrine pills the small amount of movement required for that (she usually keeps her eyes closed) and the vasoconstrictive effect of the medication will often mean she will be checking her Facebook on her iPhone within 10 to 30 minutes. (No computer allowed until she has been outside for 20 mins – strict but she’s mostly up to it. If even the laptop lure can’t get her outside I know it’s a very bad day) I wander in and out with some pretext or another until I am sure she is awake. (Very very rarely do I wake her after 8:30am. She herself is keen to stay on a regular schedule even though she sometimes doesn’t get to sleep (not bed) until after 12 )

3) At this stage, whether she is hungry or not, food must be supplied and, unless severe nausea absolutely prohibits it, must be consumed as soon as she can manage it. (see 7)

4) It is almost pointless to ask what she feels like eating and often counterproductive as just thinking about it can a) increase the nausea b) befuddle and irritate an already cognitively impaired brain that is struggling to function. Irritation with mum = resistance to eating.

5) If our girl’s appetite is particularly dodgy I try to provide 4 or 5 small dishes – just leftovers, cut up apple, yoghurt- and almost always something will appeal. (I know another mum who notices that if she can get her son to eat something, he will often eat everything! This sometimes happens with our girl too)

6) Whenever possible food and drink should be consumed no less frequently than every two hours through the day.

7) Peppermint and ginger tea are great for nausea and will almost always be accepted if nothing else is palatable.

8) A late night snack when she is lying awake trying to get to sleep seems to be a good rather than bad idea. (Helps blood glucose levels overnight? Not sure if effect would be extended enough?)

9) Food intolerances/food as medicine/ food as the cause of illness are all massive topics and not something I can explore here. a) not knowledgeable enough b) have no answers. Suffice to say the majority of food my daughter is offered is fresh, organic and wheat and dairy free. HOWEVER I have not had the heart (or courage or energy….) to impose dietary restrictions on a 13 year old. She knows my opinions and that I will wait for her to come onboard. She had very nasty abdominal pain after a rogue coca cola last month and I highly doubt that will be experimented with again. She is partial to a BLT when given the opportunity and hot chips never go astray. As much as possible I try to cook according to Dr Terry Wahls diet. Fantastically inspiring to watch.  Basically processed food out, fresh organic real produce (including as many green and coloured veg as you can cram in) in. It’s not rocket science. I know some who have identified glutamate intolerance. I don’t know enough about it yet to say how they affect my daughter. If she’s interested, we will explore it down the track.

10)Hmm I’ve forgotten what 10 was!!! If I remember I will come back and edit the post!!! If I don’t publish now, it will be another week!

Okay, that’s all for now. I started this post thinking I would talk about everything I’ve learnt about parenting this illness but realised that’s far too big a topic for just one post!

Please let me know if you have any other ideas on this topic. The above are only what I have learnt about MY daughter. By no means is this medical advice.

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?

 

Physiotherapy Part 3 September 6, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 5:41 am
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Bit of a grim start to the day with our girl attempting to go to school but not quite getting there.

She is in quite a lot of pain with her right knee which is a new thing and almost certainly the result of the clinical pilates she’s been doing. However it doesn’t fill me with the usual worried ache in my stomach. That’s because I call the physiotherapist and they listen and suggest tweaking the routine in ways that make sense to us and we feel someone who knows what they are doing is really listening to our girl’s body. Such a relief.

So, still no school, but today and yesterday many of her symptoms have been absent or less troublesome…just the knee throwing a big spanner in the works right now!

Off to RCH clinic tomorrow.

I am exploring meditation possibilities at the moment too, so do write in if you have any suggestions please!

Hope life is going well in your corner of the universe.

 

 

 

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.

 

Frustrated ‘fixer’ mother. August 22, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:28 am
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We tried rest, didn’t work. We tried medication, worked for months then abruptly stopped working. We tried exercise, she got worse. We tried rest, she got worse. Now we’ve finally found someone who can do a very careful strengthening routine with her…and this week she’s worse again. If you haven’t lived this you cannot understand how it feels when your 13 year old doesn’t want to see another clinician because ” They don’t know anything. They can’t help me.”

I now know I’m a fixer. I can’t accept that I can’t find an answer to my daughter feeling too unwell to go to school or have any kind of active life. And yet, after nearly 2 years, acceptance is becoming my greatest friend…it protects me from the agony of false hope. I would do anything to help my child and here I am where there is virtually nothing I can do except love her, feed her and let her do anything she’s up to.

I’m getting pretty angry about the lack of attention and funding this illness has received to date. This morning I sat there watching her make herself swallow medication and wondered at the immense responsibility I have for this life as I daily make decisions on what she takes/eats/does with absolutely no evidence-based guidebook. The responsibility comes with parenting of course, you never know the cards you will be dealt. But most people get a little more research thrown their way when chronic illness rears its head.

I’m, of course, hoping this week’s sore throat, dizziness and weak legs is due to a virus and not the gentle pilates. But am I kidding myself? Whatever the cause we’ve eased back off the ‘exercise’ for the moment again. (Exercise in this case is lying on the floor with her head raised slightly and raising and dropping her arms. Seriously. Do you get what I’m saying?  This wipes out a child who used to do 50 push ups plus other exercises then swim for 90 minutes.)

Anyhow, I just needed to vent. My girl can still get out of bed, mostly. We have a roof over our head and enough money. We have loving extended family and great friends. If spring could just come…..