parentingcfs

Navigating adolescent CFS

“Better” June 24, 2012

Filed under: CFS Treatments — parentingcfs @ 7:14 am
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Today is the 4th day of taking the full gamut of potions and pills suggested by the naturopath/homeopath we saw last Monday.

On the second day (3rd if we count the first day where she took nearly everything) she got up and ready for school and I asked her how she felt. She replied, “Better”. Now, since she’d spent most of the previous two days in bed, she really just meant better than yesterday or the day before. However, as this word swam around and around in my head, I realised that the reason it had such an impact on me was that it was the first time in 18 months, with all the rollercoaster ups and downs, that our girl had chosen to use this particular word to answer that question. And I’m hypothesising that, previously, when she’s felt a little physically stronger, the mental cost of having such low seratonin levels has prevented her from using a word like this because it has a positive connotation.

So that was enough for a little extra bit of sunshine to start glimmering in my soul. Then the next morning, yesterday, she said to me, “I can feel the slump is over”.  Be still my beating heart!!!! Of course, her to-date 6 week winter slump may or may not be over, but hallelujah that she can express this optimism without her poor deprived brain tricking her into more Eeyore like thoughts!

So, very early days, but I thought I too would share this little bit of optimism with you. If we continue to get good results I’ll share information about the tonics she’s taking! : )

 

Seratonin June 22, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 4:35 am
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Honestly I’ve been reading and learning so much this last week I don’t even know what subject to blog on! So I’ll try to post a few times over the next week to catch up!

Our week has been rollercoasterish again. School for 2 periods Monday morning (There’s 5 per day), 4 periods Tuesday, no school Wednesday or Thursday (despite her desperation to get there she had to acknowledge she couldn’t do it and /or would pay later) and hopefully a full day of school today (she’s nearly made it!)

So the winter slump continues and continues to puzzle me. I like answers and am not good at giving up looking for them.

I also love the power of communication. A friend of mine started a rumour about the Prince after concert at the conference he was at recently. He did it just to see how long it would take for the rumour to get back to him.  🙂 It didn’t take long. This wonderful world of the internet has opened up communication enormously as we all know and, for chronic illness sufferers and their carers,  is such a sanity saver that we wonder how previous generations coped. And don’t tell me face-to-face support groups because then and now that is often just too hard for many reasons. And now, I can talk in cyberspace with a mother whose child is participating in a groundbreaking study in the U.S. and start looking into it as a way to possibly help my child before the study is even finished or published. It is this kind of unification and speedy dispersal of information (along with some fabulous and dedicated scientists) that is going to solve the ME/CFS puzzle.

Anyhow, I digress and must address that subject at length some other time!

Seratonin. Yes. For a while now I have been feeling that my precious girl was lacking a resilience that was caused by more than a lack of energy. No doubt she doesn’t have enough energy for tricky social interactions (and what social interaction doesn’t require careful steering when you are speaking of 12 and 13 year old girls??!!) but there’s more to it. I know I am her biased mother but our girl really is a lovely human being, extremely empathetic and kind…to others. Some of that kindness is lacking in the way she assesses herself. Yes, she’s practically a teenager so she sees many flaws in herself but…..  Anyhow,turns out her seratonin levels are so low they barely register. Who knew? Apparently this is not uncommon in ME/CFS sufferers. Do you think maybe this something that a doctor could have mentioned… I found out via Mr Google. Is it because doctors are scared that if they mention it we parents will think they are saying our child’s illness is psychological when we know it’s not? Maybe? Is it because they simply don’t know this ? I don’t know. Is it because the problem of dispensing the only tool they have…anti depressants..outweighs the benefits? What about some Vitamin D testing?? That can severely affect mood, right?

We are trying to boost our daughter’s levels with supplements now. Until now we have limited pill taking to the Florinef, salt and melatonin. And the odd dose of fish oil. This is partly because, prior to the Florinef addressing many of the OI problems, our girl couldn’t swallow much without gagging, however gamely she struggled. My heart bleeds just thinking of her gameness through all this now 18 months of illness.

I realise as I type this that there is a danger that someone reading this might think this discovery of mine means my beautiful girl’s illness is ‘all in her head”. Believe me, if that were the case I would be running with it and using every drug I could lay my hands on. This seratonin issue is again all linked in with the dysfunction of the autonomic nervous system and we are slowly slowly addressing as many parts as we can in an attempt to break into the cycle of illness that is circulating through her body.

I will post more about the supplements and other things soon. Meanwhile I’m interested in your experience boosting seratonin and Vitamin D if you have any? Oh and of course any other lovely comments you may have : )

 

Nerve Tension June 18, 2012

Filed under: Uncategorized — parentingcfs @ 6:08 am

Today we saw our wonderful physiotherapist/yoga therapist again.

In particular we wanted to explore the possibility of nerve tension issues.

The latest Research 1st article had given us some more information on what to look for. It’s really worth a read but I will very briefly summarise the points pertinent to today’s post.

Basically Dr Rowe of John Hopkins in the U.S., in continuing his search for answers to help the somewhat abandoned ME/CFS population worldwide, has set up a study to examine the hypothesis ‘that some form of neuromuscular dysfunction may underlie CFS, an understanding that might also help us understand the connections between hypotension, tachycardia and nerve sensitivity.’

This hypothesis has come partly from the observation that “the classic CFS symptoms (fatigue, cognitive fogginess, lightheadedness, etc.) often seemed to get worse after a physical therapy evaluation that strains muscles and nerves. Even raising the leg of someone who has this subtype of CFS can make symptoms worse, sometimes for up to 24 hours.”

As I may have mentioned previously, I have heard of a girl in the U.S. who has recovered substantially after physiotherapy under Dr Rowe’s guidance, where nerve tensions issues(amongst others) were addressed.

What we found today was that our girl has significant nerve tension in both legs and her right arm. Our therapist, M, was particularly struck by the lack of movement in our girl’s right wrist.

As you know our girl is of the tall, slim body type and has grown at a tremendous pace over the last 2 and a half years. M said that this nerve tension could be linked to growth, deconditioning or directly from the illness…if I understood correctly. I will send her a link to this post so that she can correct me if necessary! Whatever the cause our girl can do some very gentle exercises to help herself.

M had previously asked our girl to think of a goal. Today our girl announced her goal would be to be able to play piano again. She finds she gets too tired from sitting at the piano to practice adequately so has given up every time she has attempted to restart this beloved pastime. M has linked the nerve gliding exercises in with piano practise. Our girl is to practise for a minute or two until she feels ‘bad’ then lie down in various positions and with some different movements for 5 minutes, then practise again and chart it all to see how it goes. (Obviously the OI is something that is being addressed here too, aided by the Florinef)

It all makes sense to me and our girl seems to think it sounds ok so we will see. We will hope that our girl fits in to the subset that Dr Rowe says ” almost always stick with (this kind of) physical therapy because it makes them feel so much better.”

I sure hope we’ve, at last, found the RIGHT physical therapy. I’ve got a good feeling that this is another significant part of the puzzle. Dr Rowe is THE BOMB!

No doubt my precious girl would tell me off for attempting to use slang but I can think of no other words that adequately some up my gratitude and admiration for this doctor who has stuck by ME/CFS patients and continued to search for answers.

Hope you’ve found some answers for your life today.

 

 

Winterland crash and gentle gentle PT June 5, 2012

Filed under: CFS Treatments — parentingcfs @ 6:32 am
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Well my precious girl is home in bed for the 4th week in a row….. She’s been managing a few half days here and there but has been absent something like 70% of the time. The weather has changed and it’s possible her body is taking a beating from the viruses that are all around us. Her fatigue has worsened, her knees are sore and so is her stomach at times.

Her spirits are okay as, when she has made it to school, she’s still felt comfortable socially and she still pulled an 85%  in a maths test.

There’s no doubt her fluid intake has lessened considerably as the weather has turned cold so the Florinef does not have as much fluid to source and hence help her body retain. Today she is making a conscientious effort to get that water in so we’ll see. One litre down already! Let’s hope the next few days bring a bit of a pick up.

Yesterday our girl had her first session with our phsyiotherapist friend who is also trained in yoga therapy. M has been incredibly generous with her time…listening to me rattle on about what I know  about ME/CFS and what I wish I/we/the world knew over cups of coffee and sharing her understandings with me. It’s been so wonderful to have someone to chat with who has M’s skills, knowledge and empathy. She asked me for links to research and I bombarded her with 6 or 7 papers and yet still she smiles at me! As you can gather, I’m extremely grateful that yet another wonderful professional I know has been prepared to spend their precious time researching an illness so little understood, in order to help my child.

Yesterday M confirmed that our girl is NOT hypermobile. In fact she is pretty inflexible currently! Yesterday’s session consisted of some Q&A and a breathing session whilst lying prone and, at the end, extending her arms above her head. No more than 20 minutes. M is proceeding gently gently which is just perfect for us. She told our girl that any exercises could improve or worsen her condition, it’s a trial and error thing and everyone is different. By taking it gently we should be able to gauge which way we are going.

Today our girl has had a stomachache (one of the symptoms she gets when she’s overdone things) however it’s impossible to know if that is due to yesterday’s session or the fact that she was awake between 3am and 6 am last night. Or something else entirely!  Suffice to say we will be persevering with the (gently gently) physical therapy for now.

Those of you who remember our girl’s sessions with an exercise therapist last year and how much she enjoyed the actual sessions but just couldn’t persevere with the exercise without losing energy for school and life, and our experiment with swimming earlier this year may wonder why we are at it again. The thinking is that maybe the exercise/no exercise debate exists because the level of physical activity that many start at is simply too high. That some people need to start with very very minimal breathing and stretching exercises..possibly even with their limbs being supported for them??? Especially those with hypermobility??  And that this extremely low starting point is very difficult to a) pinpoint and b) believe is enough when before the therapist’s eyes the patient seems to be coping? Maybe the therapy ME/CFS people need is more like what people get for recovery from a stroke?

I’m really just rambling here. I have no scientific qualifications! Would love other’s thoughts.

May your day be full of chocolate and strong cups of tea with friends! Just like some of my favourite days! Oh and please let me know if meditation/yoga with a focus on breathing has helped you at all x