Navigating adolescent CFS

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…..


Possible timetable for high fluid intake for an adolescent with OI. October 12, 2012

Hi all

It’s a little difficult to post lately as we still don’t have any answers and our girl is missing out on more and more. She only leaves the house for appointments and to go with the family to houses of close friends generally. It’s sad but we haven’t given up. I feel very conflicted about how to continue using the current bandaid approach of western medicine  whilst combining it with the more holistic approach of so-called alternative therapies. Anyhow, I won’t ramble on about that just now but instead wanted to share something that may be useful.

The first treatment for a teenager presenting with OI symptoms is to increase fluid and salt intake. Simple to say, much more complex to integrate into the daily life of an unwell and hence unhappy adolescent. This year, thanks to the internet, I have been lucky enough to meet a few more local mothers struggling to parent this illness. We get together when we can to share ideas, recommend practitioners and generally work through the emotional roller coaster. One of these mums is a wonderful woman who has a daughter, now 20, whose life was severely affected by whatever this mysterious illness is. Just as her daughter got back on her feet, comparatively speaking as her life continues to be impacted by the illness, this mum’s son became ill. He is about to turn 12.

This mum has searched tirelessly for answers for her children. For other mums who talk to her, she is the most amazing resource and seems to keep an incredible amount of knowledge in her head! We are very lucky.

I continue to believe that communicating with each other and professionals is how we can help get this debilitating, cruel illness puzzle solved.

Enough introduction! I’m actually just here to copy and paste some practical ideas from this experienced mum. This is how she approaches the fluid intake bugbear!

“On waking, 200ml rehydrate solution immediately before standing up.

With breakfast and to take herbs, 250ml water/diluted juice. so we are on almost half litre before day is  starting.

We use measured sports bottles for the rest of the day, a 500ml and a 750ml. (have some really good ones we get online that flow wonderfully)

By 10.30, he has to finish a 500ml bottle water. (500ml less daunting than the bigger 750ml)

Then he has one 750ml premixed drink bottle of powdered gatorade mix,( + magnesium powder and carnitine) – has to drink this between 10.30 and

2pm – (easy to do at school while on lunch and recess, gulps it down in summer)

Refills the 500ml with water and has this by 4pm.

By this time, he has had over 2 l, so I feel pretty relaxed about what happens next, but generally, by bedtime, he has done daily total of 2.5l easily without feeling like he is drowning in water.

In summer, I will add in a bought bottle of gatorade if  hot and he has been exerting himself. Also make sure there is a lot of salt going in as we all do,  tons of water without the salt would, of course, make them worse. Always aim to load the salt in the morning. (I throw in a Berocca C many mornings too , it helps butchers broom absorption, but don’t like the additives in berocca, so still thinking about this one!) ”


See what I mean? Helpful stuff, huh?

How do you approach the fluid and salt intake issue? Does it come easily or is it a struggle?