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.

 

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.

 

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.

 

The gift of kindness. January 21, 2013

Filed under: CFS Treatments — parentingcfs @ 9:05 am
Tags: , , , , ,

Hey all.

This is a post I promised back before Christmas and well, one thing led to another and now it’s a month later.

I wanted to share some lovely stories.

As you may know, our girl started high school last year. For the first 5 months she was able to attend everyday although she didn’t participate in sport. For some reason, late in second term, she started going downhill again and has been to school rarely since.

I could (and have!) puzzled through the reasons for the sudden change but that’s not what I want to write about today. Today’s post is about the generous spirits that one meets in life.

I will always be incredibly grateful that our girl got to experience those first 5 months of high school. It allowed the school to get to know her potential and personality and her to make friends.

Two of these friends have visited her several times since her health worsened back in June. The first time, they brought her a suitcase full of little presents and a card signed by the class with a piece of news about each person! Those of you with ill children will understand just how precious this thoughtfulness was. They never came empty handed and then, late last year, they called me to ask if they could throw her a surprise Christmas party as she had missed out on so much!!!!

These are 13 year old girls I must remind you…..how exquisitely heartwarming is this behaviour? I asked if they could keep the numbers below 10 and the party short and in mid December I took our girl over to one of the friend’s places where she was duly surprised! And again showered with presents!!!

While I had a cup of tea and chat in the kitchen, I caught occasional glimpses of our girl. At the surprise, she had tears of pleasure on her cheeks. After an hour, she said she wanted to try to stay for another half hour. And then another half hour after that. When she finally dragged herself into the car she was quietly radiating joy and utter disbelief that others would do so much for her. “I can’t believe they did all that for me,” she said. (As her doting mother of course it seems only natural to me but I may be biased!)

Is our girl special and kind like these girls? Yes, of course she is. Would she have thought to organise something like this if the situation were reversed? Possibly. Could I have bought this positive support (and the impact on her emotional and physical health) from her peers? Never in a million years. These interactions, when she is missing out on so very much, are priceless.

I am so touched by the generosity of spirit shown by these girls and other young people who have made a difference to my children’s lives. When our 11 year old son was struggling with bad muscle pain before Christmas his cricket coach (only 16 himself) quietly juggled fielding positions so that our boy could stay on the field as long as possible. Without being asked. Priceless. Priceless. ( On a side note the pains came up again the one time our boy played a lot of cricket these holidays but otherwise he’s been pretty comfortable as long as he stays hydrated and fed)

I hear from other heartbroken mums whose daughters and/or sons have been ill for many years, or whose peers have moved on to university/ jobs etc, of how isolated their housebound children have become. It’s terrible for the children/young adults and a further knife in the heart of parents who have watched so much taken from their child/ren already and are trying, day after day, to keep everyone’s hope alive.

Many of our daughter’s friends from primary school are the daughters of my friends so it’s easy for me to mention we need a visit. I make our house as welcoming as possible to anyone who wants to drop by unannounced. But to have our girl’s high school friends independently organise things to make her feel better..wow. As you can see I’m still in awe. Of course my daughter is a fabulous, wonderful person but sadly people get so busy in their own lives that she could be easily forgotten if she remains invisibly at home. I dare to hope this won’t be the case and I will do everything within my power to stop it happening.

Have you got any good stories to share about small (or big) kindnesses that have made a difference to your child? Or maybe you are the kind one yourself. If the latter, you are a peach! Know that a little of your time means so much to those who have endless days to fill.

Smile and wave boys. Smile and wave. : )

 

 

Cycling! January 5, 2013

Filed under: Uncategorized — parentingcfs @ 7:10 am

The view from the upward side of the roller coaster is so nice. I love it here. Can I stay? Please? Please? Although getting to the top and staying there would be even better!

As you can guess things are still going well here! Summer holiday time and all that so it is the time when things are most likely to be good….because of the weather and relaxed environment. Actually I don’t really know exactly why..just guessing!  However it’s far from guaranteed that our girl can do more at this time, especially after the terrible winter, so we are revelling in this (hopefully not temporary) improvement. (Power of positive thought and all that..from me not the gorgeous girl who is nearly always positive)

The big news is….drum roll please….that after the outdoor Christmas Day we haven’t really looked back. We’ve had a couple of necessary quiet days but she rallies quickly and has left the house more than she has in months.

And….wait for it…she rode a bicycle for two days when we were visiting our favourite holiday island!!!!!!! Like…. AWESOME!!!!! The second day was ridiculously hot and we tried to persuade her to settle for a short ride but no, she wanted to go to a different beach 5kms away, up hills. By the time we got there she was not in great shape. The whole two days we found frequent reasons to stop and insisted on rehydration but this ride really was too much. Anyhow, we lay in the calm, cool shallow sea for an hour and pondered our options. We were a little stuck. 39 degrees celsius and rental bikes. In the end our brave girl decided she could probably do it with her iPod music in her ears… And she did do it, luckily mostly downhill on the way back so lots of coasting (or gliding as she renamed it!)

The next day was a quiet one but no massive crash..at least from my point of view. I’m sure it was really important that we prioritised fluid and food the whole time, and had the BP medication and the new herb regime. Without any one of those I suspect it would not have happened. 

Anyhow, here we are 5 days later. Yesterday was a quiet day in, this morning we all went to see some old friends for a couple of hours. It is hot again today and our gorgeous girl has just decided she’ll skip the movie we’re off to see with her beloved big cousins shortly.  So I must rein in my enthusiasm and remember it’s all baby steps. Baby steps forward are just so welcome, I can’t tell you.

Shout out to our lovely friends the Barnies who hosted us this morning. Our girl seems glad she came and we all loved the catch up. Happy gardening and see you at the cricket! x

 

Update on what’s helping. December 26, 2012

Filed under: Uncategorized — parentingcfs @ 4:10 am

Well, here it is post Christmas and I have much to be grateful for. We spent Christmas Day by the river with extended family. My 11 year old boy spent most of his time in and out of a canoe and was as happy as the proverbial pig in mud. No mention of leg pain. Very very tired today but he has missed a bit of sleep these past few days so we’ll see. As I’ve said, dry needling from the osteopath has really helped him, he’s also been taking supplements.

Meanwhile our gorgeous girl came to the river despite the heat and lay on a rug READING A BOOK most of the day!!!

This beautiful day that our kids could enjoy was the biggest gift of all. I gave our girl more frequent midodrine than usual (we are in the process of increasing) and I’m fairly certain this is helping. She is also now had licorice root added to her other herbs and I’m sure this is having an effect too. Also the cranial osteopath we’ve seen has helped her body get a little more back into sync and the targeted clinical pilates has made her stronger. She seems more herself, despite the hot weather. My life seems to be an endless round of cooking nutritiously and making sure everyone has taken their tablets and potions! But I’m so happy to be able to help them and I know this stage will not be forever.

In a few weeks we’ll have to sit down and work out how she is going to approach the new school year. Does she think she can up school attendance from one lesson to two or three a week? Which practitioners does she want to continue to see (as she may prefer to use the energy the appointments take for school or social activities)? Would she prefer to trade me in for another mother? Oops how did that last one slip in?!! Parenting a sick teenage girl has to be one of the most beautiful and most confronting relationships there are! At least i know how she REALLY feels! Or do I??? Biggest gift i ever gave her and myself as we hit the teenage years… I do not need to respond to every comment or angry word..sometimes it is the most powerful message of all… ie let’s move on, neither of us needs to waste any more time on this discussion right now!

So that’s us for now. I feel hopeful again…the sunshine and Christmas cheer helps i’m sure. To all of you out there who are not on one of the top curves of the roller coaster today, my thoughts are with you.