parentingcfs

Navigating adolescent CFS

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?

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4 Responses to “Possible timetable for high fluid intake for an adolescent with OI.”

  1. Sarah Wilson Says:

    Hi – I was just thinking that it has been awhile since the last post and wondering how you are doing. Really sorry to hear that H is still struggling. Ever since this illness started there have been ups and downs, and I know this down has been particularly dispiriting because recovery seemed so close, but there will be another up. I hope that it comes quickly. Thoughts are with you all. Love Sarah.

    • parentingcfs Says:

      Thanks Sarah. Lovely to hear from you. We had friends over for a BBQ last night and H enjoyed that. Lots of new things to try coming up. I’m sure we’ll get there. Looking forward to seeing you in a couple of months! x

  2. Netty Says:

    I have had CFS/ME (this time around) for 9 years – my OI was treated quite easily with sodium channel blockers – it is the channelopathy of the cells that causes Na to leak into cells, taking water in with it. This leads to thirst and a total body lack of potassium. I started out on Na channel blockers and K+, then after a year or so stopped the K+ (when the body stores were replaced) and now I take just the Lamictal twice daily. My sodium excretion is now normal and I have very few problems with OI. Hope this advice helps – first step is a 24 hour Na+/K+ urine excretion test.
    What specialist/CFS practioner do you see?

    • parentingcfs Says:

      Wow thanks Nettie!! On my dodgy phone at the moment but will look into this and get back to you. Ate you saying that you still have the lethargy and other issues still but no nausea etc??? My daughter is doing better( on midodrine) but I’ve been looking into cell related stuff especially sodium channel stuff. Thanks so much .


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