Navigating adolescent CFS

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.


4 Responses to “Things I have learnt about mornings and food/drink.”

  1. Elaine Says:

    I have more questions than answers. There are so many things to try with the diet but I beleive it has to be tailored which is why it is tricky. We are doing some of what Dr Wahls but avoiding other things too like fruit for now. Snack before bed should be carbs not protein? which again is tricky when gluten free

    • parentingcfs Says:

      Yes I know Elaine…so many questions and so tricky to manage without professional support. I usually give my kids rice cakes with avocado, lemon juice and salt as a bedtime snack. However sometimes Nutella is the only thing that will be accepted! We can only do our best, huh…

  2. Sue Jackson Says:

    Very interesting thoughts! What a great idea to try to collate all you’ve learned in one place.

    I am quite different – and Jamie, too – we both know what kind of day it will be the moment we wake up. And we both need at LEAST 9 hours of sleep a night and do better with 10, so we have to go to bed earlier – neither of us is able to sleep late in the morning – I think it has to do with melatonin? Sometimes I wake up feeling good and then symptoms creep in, but usually if I wake feeling good, it will be a good day. or, like today, I wake feeling achy and awful and know it will be a Plan B day!

    As for food, the frequent small meals is a good idea since most of us have hypoglycemia, but I find it hard to stick with in practice. I still usually eat 3 big meals a day – with an occasional small snack like a handful of nuts in between. I know I should try eating less at meals and spacing my food more evenly. Part of the problem is that morning is my only productive time of day so i don’t want to stop and fix an extra snack in the midst of it!

    Oh, and taking beta blockers at night before bedtime has revolutionized my mornings! Now I feel good as soon as I wake up and no waiting around for meds to kick in before I can do anything – it’s been great for both Jamie and I.

    Great list!


    Live with CFS

    • parentingcfs Says:

      Hi Sue!
      Isn’t that interesting about you and Jamie and sleep. I have learnt that my girl feels so bad on waking 95% of the time that the whole day will look miserable to her. But after food and drink etc, 80% of the time, she will be a different person. Very glad I learnt that! I think you and Jamie are maybe in a better place? (Especially Jamie these days!!!) No matter how early our girl goes to bed she does not get to sleep before 11. I suspect she could sleep all morning but not game to risk mucking up her circadian rhythm…have heard so many bad stories.
      As for food..I think this is where kids are lucky if they have someone looking after them…would love to bring you a snack too in the mornings!
      Makes sense that beta blockers allow you and Jamie better sleep. They are not recommended for younger kids right?
      Thanks for sharing your experience here. I hope soon my girl will wake up and know it’s a good day.
      Hope you’re feeling better……

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