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

 

 

 

 

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.

 

Dry needling December 5, 2012

Filed under: CFS Treatments — parentingcfs @ 5:53 am
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My brave boy just had 4 needles stuck into each of his legs!! Calf muscles. Hell it made ME wince just looking at it!

But afterwards he got off the bed and was like a newborn animal trying out his legs as if he couldn’t believe they were real. He’s happy to go back for another treatment next week so it must have made a difference for him to go through it again!

This was our first visit to this osteopath. She will work in tandem with the wonderful one doing cranial osteopathy on both our kids.

Remains to be seen if this treatment will only be a short term relief or may produce longer lasting changes.

I will keep you informed.

 

“Ignition” November 22, 2012

Filed under: CFS Treatments — parentingcfs @ 10:47 am
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For those of you interested in the cranial osteopathy we are trying, our therapist felt “ignition” today and from her excitement I could tell it was something good!

It basically is what it sounds like ie; the body has been idling and just barely chugging along but suddenly a switch is thrown and the energy starts pulsing properly! Well, something like that anyway!

It was our girl’s fourth session and apparently ignition was something the osteo had been waiting and hoping for. We may see a big improvement this week or it could continue to go in small increments…

The big news is (drum roll please) that our girl read a book on and off for an hour yesterday!!!!!!!!!!!!! That is HUGE as she has been unable to read for more than 5 minutes since July.

It’s impossible to tell if any one therapy is helping more than another. We are just so grateful to see her making some progress in the right direction!

Her current protocol consists of: prescription medication for BP issues and sleep, targeted clinical pilates, supplements prescribed by an expert naturopath, routine bed time and wake time, two minutes slowly on an exercise bike twice a week, one class at school per week, half an hour in sunlight each day and an animal protein and vegetable rich diet, twice weekly visits from friends….and as much laughter and pop music she can handle! Oh and eternal patience from her mother…ooops how did that slip onto the page???!!!!

Actually last week I cracked and had to walk away when she was being uncooperative about taking medication or something ..can’t even remember what it was about! Dad took over and I went away for the night with a girlfriend. Best thing I could have done! Aaah the poor kids, they are remarkable considering how miserable they feel. Tonight she was very nauseous and just looked at me with big eyes and  said, “Make me better Mum”. Such a relief to know she still thinks I can!!

Smiling and waving here again!

 

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?