parentingcfs

Navigating adolescent CFS

The universe March 29, 2013

Filed under: Uncategorized — parentingcfs @ 2:12 am

Our girl woke feeling very sore and achey in her limbs this morning with a headache too.

It’s always a little scary when new symptoms present. Your mind races through everything that’s happened in the last 24/48 hours, thinking about possible triggers.

And always in the back of your mind lurks the ever present thought that there is something else wrong with her that has been missed. In fact, that last is essentially true as one knows exactly what is going on in her body. Which is why you think about the previous 24/48 hours in case some clues lie there so you might just might be able to stop it happening again.

The two lovely friends from high school came by yesterday and stayed for 2 hours. May have been a little long so I’m wondering if these new symptoms are from overdoing it. Usually our girl has a sore throat when she has overdone it but not so this time.

Anyhow I really just wanted to post to thank the universe as she is now at least propped up in bed watching the UK ‘Miranda’ comedy that a good friend lent us in the hope it would bring some laughter sometime when needed – and now our next door neighbour’s cat, a beautifully friendly marmalade boy, has wandered in and curled up on our girl’s bed. Isn’t that wonderful?

Hope today is a good day for you.

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Things I have learnt about mornings and food/drink. March 26, 2013

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:49 pm
Tags: , , ,

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.

 

The baby March 21, 2013

Filed under: General — parentingcfs @ 4:48 am
Tags: , ,

Once upon a time there was a girl who was so sick she couldn’t go to school anymore. Everyone knew that she would wake up one morning and feel well enough to go again but, in the meantime, the girl and her mum tried to fill the days with other things that were helpful and not too exhausting and, well,  just made her feel good and less like she was missing anything.

The girl had always been great with words. Before she got sick she often read a book a day but now she struggled to read one a month as it was just too hard to keep the plot lines in her head. She found that she could still write bits at a time though, if they were about things she wanted to write about and not too long. After she had to stop going to school ,she started putting some of her writing online. She decided to keep it very private so that no one she knew in the real world would know it was her writing. Except her mum – who was privileged enough to be shown some pieces and felt the honour greatly!

After 2 weeks the girl had 457 people following her ‘vignettes’! After 3 weeks she had 607! The girl was pleased that people liked her writing and the days seemed to go less slowly.

As the girl was very smart about her privacy, she had decided to use her unusual middle name as her pseudonym online. She started having conversations with some of the people who liked her writing. One day she woke up to find a special message. It said that a girl found her writing so inspiring that when she was given the chance to name her little sister who had just been born, she chose the girl’s pseudonym!! The girl was terribly ill and missing her friends BUT SOMEONE HAD NAMED A BABY AFTER HER BECAUSE OF HER WRITING!!!! What a day. The girl told her mum. Her mum asked if she could share the story on her blog as it was so special. The girl said yes.

I hope this made your day too. Best wishes to the new baby. May the name bring her much luck.

The End

 

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.