parentingcfs

Navigating adolescent CFS

CFS Therapy Part 5 September 22, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 1:59 pm
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Another hour plus with our lovely exercise therapist yesterday.

In the car on the way I asked our girl what she would be answering when he asked her how her week had been symptoms-wise and she replied with a four letter word starting with ‘s’. This actually was good to hear – not that I would encourage her to swear at any time – but I knew then she wasn’t going to gloss over the reality! I’m always alert to this as she is the kind of kid who wants to make others happy and that’s something we’re trying to unlearn a bit.

The EP made me feel better as always. (Yeah he’s not just good for our girl!!! Also for her protective mother!) He agreed we would cut back on exercise this week and continue to try to work out a school and exercise level where she can work without getting worse. Unfortunately for this, but fortunately otherwise(!) school holidays start next week so we won’t be getting a realistic picture of whether the new schedule is manageable until school starts again.

Our girl wasn’t as sparkly as usual as she was feeling pretty low and she admitted today she was zoned out for a lot of yesterday’s session. I’m so thankful at times like this that although she has this illness whilst still a child at least she has someone around her who’s still inclined and has (made) time to look after her. And she doesn’t have to earn her own living….lovely Dad does that bit (I can’t work at the moment as she is home 70% + of school time). I read of young adults with CFIDS who’ve returned home to live with parents and other people who are out there trying to make it on their own…or, worse still, parenting others with their limited energy/concentration skills and whilst in varying degrees of pain. Hats off to you guys and may today bring some happiness in whatever form.

Looking back on the week I could see it had been a busy one, on top of the exercise and rather too busy weekend I had also forgotten about the evening trip to see Julius Caesar at the theatre…ooops. It made it unclear as to whether the crashing was from 15 mins on exercise bike or other activities.

New insights from the EP:

1) I mentioned how hard it was to know what was causing her to crash due to the possibility of the time lag being up to 3 days. He said some research had actually shown it can even take up to 5 days but…and this was really helpful…. he was fairly certain in our girl’s case the crashes were happening same day or within 24 hours. This confirmed both my daughter and my observations. It is just SO helpful seeing someone who has seen so many CFS cases (12 years experience) and can make statements like this. When I’m not torturing myself that she shouldn’t be doing any exercise at all I feel we are VERY blessed to have this expertise available! (It would be too simple if I wasn’t torturing myself about something!)

2) I asked his opinion of Florinef to raise/stabilise our girl’s blood pressure. We got into a conversation about licorice root which I am now going to see if we can add to the supplement intake whilst waiting for the next few weeks to pass. If I can find any form of  it  that doesn’t taste like licorice! Yep you guessed, the girl can’t stand licorice!

Yesterday before we went to the EP she did 15 minutes on the bike for the first time since Friday and she’s gone downhill again today after feeling slightly better yesterday. Although I never want her to feel worse at least this does seem to confirm that 15 minutes on the bike  is too much. We shall go down to 10 and see if we can get a baseline happening.

We’re slightly hampered in our ‘manipulations’ of her condition as her little ribcage is too small for any of the 3 heart rate monitors we’ve tried to sit snugly in the right place and get a reading! Will have to stick to manual readings (yes! in this day and age! surely there’s an iphone app????!) This will be a new skill for us but no doubt we will get very used to it! It’s just very unfortunate as it means I have to be involved with her activity when really we’re aiming for self moderating. ( And less scenarios where Mum may be told to back off , not more!)

Anyone know of heart rate monitors made for kids? I guess they must exist for hospitals…..

Hope the sun is shining where you are. Or it’s raining if you prefer that or are in drought!

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4 Responses to “CFS Therapy Part 5”

  1. Sue Jackson Says:

    So glad you have this kind of help and support available (for you as well as her!) and that you are monitoring her exercise/exertion closely. I’m the same way as you described your daughter – if I over-exert, I usually feel the effects start between 3 hrs and 24 hours after (though the resulting crash can last for days).

    Dr. Rowe isn’t thrilled with licorice root, just because he feels as a supplement it is unregulated – that means you are less sure of how much you are getting, whether each dose is consistent, etc. Since it has much the same effect as Florinef, he prefers the Florinef because its effects are well-known, well-studied, and the dose, quality, and amount are consistent and regulated. Just passing that along.

    I myself take licorice root (it comes in capsules – no flavor at all as long as your daughter can swallow pills!)) because I had no effect from Florinef (as is true for many adults). I honestly have never noticed much effect from it, but it’s so cheap that I’ve kept it up.

    Funny, I have just the opposite problem with heart rate monitors!! I have a Polar brand. The standard strap that comes in the package is a large, but you can order replacement straps. When my strap stopped working, my husband ordered me a replacement. He said there were two sizes, XS/small and med/XXL (what happened to plain old medium??). Since I am a relatively small person, I told him to get a small…big mistake! On its largest setting, it is still very tight on me! I bet it would fit your daughter perfectly!

    Here is the polar website where we ordered it:

    http://bookbybook.blogspot.com/2011/08/fiction-review-passage.html

    I think mine is the WearLink strap.

    here it is on amazon, and they seem to have lots of brands as well:

    http://www.amazon.com/gp/product/B000F7F64I/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B0007ZALHA&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=039YBV8CH7XEYKH77HD2

    Good luck!

    Sue

    • Hi,

      It’s such a steep and long learning curve re learning your body with me/cfs and everyone is a different. I guess my only advice would be that you can’t under-do it at this stage. For me the hardest part is finding this ‘base’ level and I definitely overestimated what I thought i could do.

      Good luck with your search for a base line and also for a child size heart rate monitor. I find mine so useful, especially in the mornings when it gives me an early warning of a good day or a bad day so I really want to encourage you on your search.

      I, like Sue, also use a polar brand heart rate monitor (after a cheaper I bought online crapped out) and it’s a bit big so I have sewed the strap so it double up and is a bit smaller which helps to hold it on tighter. But I guess the problem for you is the plastic moulded bit.

      Also pre-emptive resting seems to be really helpful. I now have a 30min rule. If I use the computer or read or watch tv (these are high energy/cognition for me at the moment) no matter how I feel I stop after 30mins and rest for 30mins with eyes closed listening to music or an audio book. (this works most of the time sometimes I’m not so good).

      Big hugs to both you and your daughter. It sounds like you are both doing a really good job of taking this seriously and both have great positive attitudes.

      xx Sarah.B

      • Annie Says:

        Hi Sarah. Big apologies for my delay in replying..I thought I had and then we’ve been away and I just realised I hadn’t..oops! Thanks for all your suggestions.You’re quite right the problem for us with the monitors is the moulded part. I’m getting pretty good at doing it manually though!
        Yes we use pre emptive rest a lot … had a fairly strict routine for a while but had loosened it up a bit now she’s got used to doing less. As always the juggle is between me trying not to ‘impose’ things but rather her understanding why it’s good to do things a certain way. Thanks so much for all your encouragement and support… I’ll pop over and visit you now : )

  2. Annie Says:

    Thanks for your great advice as always Sue. I haven’t achieved much on the CFS front today but will follow up the heart rate monitor tomorrow. Yes I hear what you are saying about licorice root.. I just felt it was a way to get started without waiting for the next doctor’s appointment.
    I heard from Denise. Thanks a lot for putting me in touch with her.
    Hope you have a good weekend. : )


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