parentingcfs

Navigating adolescent CFS

What we think’s worked for our girl – so far…. November 26, 2013

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 12:37 am
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DISCLAIMER: The following post contains anecdotal information and my thoughts. It is not meant to reflect medical advice pertaining to any other person.

For those of you who are only in touch via this blog, the news is good. Cautious as ever but good. As we come up to the 3 year mark of our daughter’s illness she is back at school once a week for 2 hours. This may not sound much but as she had been completely out of school for 9 months and barely attending for 8 months prior…well this is huge. And I smile about it every day.

I have so many things to write about pertaining to the last three years but this first post will only be about doctor – prescribed medicines that we feel have helped our girl get back to this stage after a terrible low point for several  months last year.

First, I would like to clarify that my daughter’s symptoms appear to me (and her BP doctor) to have all fitted neatly into POTS (plus PEM? or is that just part of the POTS for some?) ie clearly lack of vasoconstriction and hence inadequate blood delivery to the brain, gut and peripheries. What has caused the POTS is where there are disagreements globally. Clearly my daughter’s connective tissue is somewhat lax. Has it always been that way? Or have there been environmental contributors? More on that in the next post. She has the clicky joints common to hypermobility, but certainly not all hypermobile people are ill. And she belongs in an unusual but certainly present group known as ‘Stiff Zebras’ – ie they have symptoms of something known as Ehlers-Danhlos Syndrome but are  ‘stiff’ instead of ‘stretchy’. So many of the teenagers I come across with a CFS diagnosis are also hypermobile..it puzzled me that my girl wasn’t. It’s possible that her muscles stiffened to compensate for weak connective tissue in her joints….maybe?…..I know one doctor has mentioned it as a theory. (I remind you again that this is really just my ramblings!)

MEDICINES

So, taking the above into account, it is not surprising that the pharmaceuticals that have most helped our girl to regain at least part of her life are related to improving and stabilising blood volume and pressure. Florinef gave her 5 months at the beginning of Year 7 (last year) where she was attending school every day, doing very well academically though still unable to participate in sport. Most importantly she got to make friends at the start of high school here in Australia and those friends (and others from primary school) have been crucial to her well-being. Unfortunately, in May, Florinef suddenly stopped being ‘enough’ and she went rapidly downhill.

In November of last year our girl started on Midodrine (a vasoconstrictor). She takes a dose twice a day and it is very clear when the dose is wearing off as her fatigue and neurological impairment (usually first visible as irritability!) come back with a vengeance. She still takes a small dose of Florinef as well.

In our case, a melatonin dose in the form of Circadin has been an absolute blessing and enough to help her through the initial ridiculous issues with sleep. Without a dose she would be unable to get to sleep until past midnight, despite lying in bed in the dark from 8:30pm. It breaks your heart watching someone try so diligently to follow instructions..in this case in the form of good sleep hygiene..and not get any results…. I am so very grateful that Melatonin worked for my girl. She still takes it but also sometimes listens to sleep guiding meditations…and always listens to music. She has developed an ability to pick music that helps her sleep….

This is a good place to stop. There has been so much more than ‘medicine’ involved in this journey and all of it has been important but it deserves another post! (Plus I really must go on an ‘outing’ with the girl and get away from this computer!)

May your news be good news!

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4 Responses to “What we think’s worked for our girl – so far….”

  1. Sue Jackson Says:

    So thrilled to hear that she is still holding the gains! As you know, it was the same for my boys – treating OI was like a magic switch that got them back to living their lives.

    Does she have NMH as well or just POTS?

    I agree, the diagnoses can be confusing and tricky, and I have wondered the same things myself with Craig. From all the people I’ve talked to and met, it seems to me that the difference between “just” POTS or CFS that causes POTS is that CFS includes PEM and usually includes signs of immune dysfunction – recurring sore throats or swollen glands or feeling feverish. The teens I have met with just POTS and not CFS can exercise without crashing afterward – in fact, it really helps them. Just my two cents from what I’ve seen. Like I said, I still wonder about Craig – with Florinef he has no PEM…though he did have it before starting Florinef. And a cold can still knock him out for a week or more, so I do think there is some immune dysfunction – so my current conclusion is that yes, he does have CFS that caused the OI but certainly a very mild form. Ask me again next week – lol

    Anyway so glad she is doing well and going to school and maintaining that level of functioning – believe me, I know how huge that is!

    xo

    Sue

    Live with CFS

    Learning to Live with CFS is now on Facebook!

    • parentingcfs Says:

      ‘Just’ POTS, Sue. It’s likely there is some connection to EDS in her case Sue but, again, that doesn’t really clarify things does it! And yes our girl clearly belongs in the group with PEM. Her BP doctor says it’s almost half/half with the people he sees..ie: half of them helped by exercise straight away, half not. But he still wants her to aim for exercise. All the practitioners want exercise back in her schedule in whatever mild way but right now she is getting more than she was walking around school 3 times a week so it’s on the back burner for a little longer… Thanks for sharing my joy as always Sue. x

  2. Lesley Says:

    I’m really interested in your comment about clicky joints. All my girls have clicky joints, but the diagnosis of hypermobility seems to come from the Beighton Score, and they don’t fit that. No thumbs bending way back etc. One girl’s knees hyperextend. The one who is sick has stiff, clicky joints, PEM, and POTS. She at first got a CFS diagnosis (that was after a couple of years of doctors visits – I’m sure you know the drill) but when POTS was mentioned as a possible part of the CFS, everything fell into place. But since she can swim and not have PEM, I think she is “just” a POTSie. I do worry about my other girls. One has psoriasis; two have had episodes of extreme tiredness for no good reason, but have managed to bounce back. All have aches and pains and clicky joints. I worry about the possibility of Sjogrens as the cause, as the eldest has had dry eyes and mouth for several years. The one with POTS had a rapid growth spurt a few years ago, unusual horizontal stretch marks on her back, and then stopped growing when she got sick. She has now become very hungry and has put on lots of weight. I’m not sure what is causing that. We aren’t getting anywhere because doctors here aren’t keen on giving meds. But the more I read (and I read and read and read), the more convinced I am that meds are needed for recovery. She certainly isn’t going to pump that blood back up, on her own.

    I’m so excited for you and your girl, that she has managed to get back to school. That is our aim for next year. 🙂

    • parentingcfs Says:

      Thanks for your comment Lesley. Yes my girl definitely doesn’t fit on the Beighton score but our doctor says it can all just be internal….and hard to tell?! Yep another “CFS’ mystery! Sorry to hear you are concerned for all your girls. I hope the new contacts in NZ through the Facebook group can help you find some appropriate medical help. I have to watch my other child with fatigue too. I am following the Wahls Protocol with food as much as possible and hoping that food is medicating all of us somewhat…there is no doubt it can work wonders. Thanks for sharing our excitement and I hope to hear of improvements at your end soon. Hugs.


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