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

 

 

 

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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.

 

Osteopathy October 24, 2012

Filed under: CFS Treatments — parentingcfs @ 10:36 am
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So… today we tried something very interesting. Sacro-cranial massage. This is one way to describe it :

“Cranial osteopaths are trained to feel a very subtle, rhythmical shape change that is present in all body tissues. This is called Involuntary Motion or the Cranial Rhythm.  The movement is of very small amplitude, therefore it takes practitioners with a very finely developed sense of touch to feel it. This rhythm was first described in the early 1900’s by Dr. William G. Sutherland and its existence was confirmed in a series of laboratory tests in the 1960’s and ’70’s.”

Yeah I’m not sure exactly what lab tests are being referred to. In fact this month I am teaching ‘critical analysis’ and my students would tear apart the vagueness of that test reference. At least, I hope they would, otherwise they haven’t been listening. Anyway I digress!

The visit came about as a result of listening to a friend’s stories about how this particular osteopath had helped her children.(Thanks again M!)  In particular, that when her 12 year old was particularly low last winter he ASKED to visit this osteopath! Hey, I’m always up for a personal recommendation when my kid is so sick. (Actually I pretty much only go by personal recommendations as the expertise of the practitioner is as important as the practice itself when dealing with an illness this complex) And, besides, it’s an outing! It took me a while to get our girl to agree to try yet one more thing but try she did – on the understanding that she would do it once to humour me and that would be it. Bless her she didn’t even complain on the way there, even though she was clearly exhausted from a long visit by friends yesterday.

The osteopath explained the practice as best she could and then our girl took her shoes off and hopped up on the massage table. Within minutes her body looked more relaxed than I had seen it since she became ill. She didn’t fall asleep but others do.

Afterwards, when she had agreed to another appointment(!), I asked her if she felt anything. Only when the osteopath touched her head apparently and then it was very gentle.

The osteopath said the best way to describe what she felt when treating my daughter was that her nervous system was functioning in separate parts, at different speeds, instead of in rhythm as it should be. Also that her body feels all out of balance from continual growth spurts (she is now 174cms by the way).

All very very interesting. Apparently some things should change after this first treatment but it usually takes 3 appointments for things to really start to shift.

There is no way my daughter would have agreed to go back again if she had been lying there bored with nothing going on for 30 minutes. She sure did look relaxed.

I’m hopeful and will keep you in the loop. Slowly slowly we are assembling a wonderful group of practitioners to give our girl the best possible chance of getting well sooner rather than later. Yay.

Have you had any experience with cranial osteopathy?

 

Midodrine October 23, 2012

Hi all

Just thought I’d better post an update before we add something new into the mix today!

Today is Day 11 of our girl taking 5mg of Midodrine twice a day. She takes one before she gets up..with a full glass of water or juice if she can manage it..then one 4ish hours later. It is not recommended to take one before bed as increased vasoconstriction whilst supine is not something we are seeking!

Has it made a difference?

I would have to say yes.

Her blood pressure is certainly on average higher than it was when she is upright. On the first day it felt strange ‘inside her head’. I suggested it was her brain saying, “Holy Cow where has all this blood come from..yippee!” She doesn’t find me as funny as find myself : ( Yes she is 13 now. Anyhow there are several indications that she feels a little better on this drug:

1) she takes it without complaint

2) she regularly eats at the table with the rest of us rather than asking for the food to come to her room

3) she has had either an appointment or more than an hour visits from friends pretty much everyday over the last week and has not crashed as badly as she would have previously.

4) she asked to go to the mall where she likes to shop last week!!!! We went for 2 hours and the crash was minimal.

All of these are very significant signs to the hovering parent!

Of course, we continue to see the physiotherapist whom our girl completely trusts. Last week we saw his colleague for the first time in 6 weeks and she commented on how much more our girl could do in the session. It was lovely to hear that as one doesn’t notice the small improvements so much when seeing her daily. Compared to the 35 degree leg raises done on the first visit, our girl’s legs can now be raised to a 90 degree angle regularly. (Not independently, the physio raises them, but the increased flexibility is important as it shows neural tension has been improved) Exercises are done at home but I do wish we had access to this kind of expertise and equipment on a daily basis….in an affordable manner. Our physio and the hospital are working together now so hopefully this program will become established. Please note this is not GET as it is misunderstood by most people, this is a carefully personalised clinical pilates approach that addresses neural tension.

Oh there is still no progress with school and the brain fog (or brain frog as a very sick girl in the UK calls it ..shout out to you N!) still stops her reading… a real sign of how ill she still is.

Today we are off to try something new. Sacro-cranial massage! I know! Sounds like fun huh?! Will fill you in later…..

 

Pass the next medication please? August 2, 2012

Saw the clinical pharmacologist (who prescribed Florinef back in December) this morning. It was our first trip since January.

Feel strangely reassured despite the fact he told our girl that her BP was going to be an issue until she was 25 ish….worst case scenario. Basically he said you just need to accept that this is reality and you are going to be able to get through school (not sure how at this rate!!) but not always do everything you want. He accepted my explanation that every time we try to introduce exercise school attendance suffers and also admitted that if he were me he would be taking his child to see anyone who might help too. However, he remains convinced that all our girl’s issues stem from her BP issues rather than the other way around.

He knew of the physiotherapist I’m taking her to see next week and that his theory is that nerve issues are the culprit. The CP said he thinks the theory is wrong but that he was very happy for us to see him as he has helped people with the exercise routines he’s developed. (More about this after our appointment next week. As I’ve mentioned before, our girl has clear nerve tension issues that we want to tackle in the hope it will enable her to do muscle building exercise with less payback.)

Anyhow, the upshot was that we are adding Midodrine into the mix of medications in the hope it will get our girl back on her feet. This is a medication that has to be ‘approved’ for dispensation in Australia still…because there has not been much demand for it. Yet. There may be a lot more soon as it was evident that our CP was seeing a lot more teenagers like our daughter as word is spreading.

So, we will probably give it a try. Our precious girl just wants to get back to school – as she told the doctor this morning.

So why do I feel reassured? I think it is because I feel less like we are being left on our own to muddle through and more like we have somewhere to go when things aren’t working? I also felt like all the right questions were asked this morning and things seemed manageable. In the meantime I’ll keep working on acceptance and don my penguin suit again. Smile and wave boys, smile and wave! : )

 

“Better” June 24, 2012

Filed under: CFS Treatments — parentingcfs @ 7:14 am
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Today is the 4th day of taking the full gamut of potions and pills suggested by the naturopath/homeopath we saw last Monday.

On the second day (3rd if we count the first day where she took nearly everything) she got up and ready for school and I asked her how she felt. She replied, “Better”. Now, since she’d spent most of the previous two days in bed, she really just meant better than yesterday or the day before. However, as this word swam around and around in my head, I realised that the reason it had such an impact on me was that it was the first time in 18 months, with all the rollercoaster ups and downs, that our girl had chosen to use this particular word to answer that question. And I’m hypothesising that, previously, when she’s felt a little physically stronger, the mental cost of having such low seratonin levels has prevented her from using a word like this because it has a positive connotation.

So that was enough for a little extra bit of sunshine to start glimmering in my soul. Then the next morning, yesterday, she said to me, “I can feel the slump is over”.  Be still my beating heart!!!! Of course, her to-date 6 week winter slump may or may not be over, but hallelujah that she can express this optimism without her poor deprived brain tricking her into more Eeyore like thoughts!

So, very early days, but I thought I too would share this little bit of optimism with you. If we continue to get good results I’ll share information about the tonics she’s taking! : )