parentingcfs

Navigating adolescent CFS

CFIDS Paediatric Specialist visit September 13, 2011

Filed under: CFS Diagnosis,CFS Symptoms,CFS Treatments — parentingcfs @ 6:12 pm
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Almost 9 months after our girl’s symptoms first started, we finally saw a paediatric CFS specialist yesterday!

Why did it take so long?

Well, primarily because one of the boxes that has to be ticked to diagnose this condition is that the symptoms have been present for 6 months. Some documents state it should be only 3 months in children but, as with so many learnings about CFIDS, that is either not known or not agreed upon by all practitioners. Our girl was diagnosed on June 1st which was about 6 months after the nighttime nausea began and 4 months after the symptoms of all day nausea and fatigue really started to impact on her life. She’s relatively lucky from what I read, some children (and adults) are not correctly diagnosed for years, due partly to the lack of awareness amongst doctors (generally no fault of their own) and the elusive nature of some symptoms.

After the diagnosis we had to wait for an appointment to become available with one of the two specialists in Melbourne. We were originally given October 19th but with a back up call from our paediatrician the appointment was moved up to yesterday.

What did we learn?

Yes, our daughter has CFIDS/CFS.

Yes, she needs to limit her activity level. The best way for her to do so is by planning her week according to 4 central concepts. In order of importance: social, academic, physical, commitment to attend. We loved that social was first as it reinforces what we’ve already observed and decided.

Yes, she needs to increase her intake of fluids and salt. If the nausea does not decrease after one month she can be referred to a cardiologist who will test her (and medicate?) (I’d already tried to get this done but practitioners are very keen for us to try fluids and GET before medication. Will continue to take this advice unless can see no progress by October 13th.)

Yes, melatonin (for sleeping) is a great thing and should be continued.

The physician recommended our girl take anti-migraine medication, a nightly pill, to see if we can make the daily headaches disappear. Our girl is reluctant to do so as she argues the headaches are not severe. No final decision made yet.

Yes, we’re probably in this for the long haul. Andrew asked the recovery question and we were told 4 to 5 years is average. No surprises there.

It’s important to weed out the ‘busywork’ at high school, choose the subjects and teachers you like and do them only. If she is a managing a 50% school loading by the end of this year, that is the percentage of high school classes she should attend. (She is managing about 33% currently)

There are some great visiting teachers who will be her advocate at school and support her at home. We have just submitted an application at school actually.

Generally quantity of schoolwork managed is affected, not quality. This answered my question about whether having accepted a position for her in an academic class, that she sat the test for back in May, was a mistake. Hopefully not.

Graded Exercise Therapy is, as we already knew, certainly not the miracle cure but as our girl likes the sessions and the exercise physiologist actually embraces a similar approach to the 4 concepts above (and doesn’t push) it’s okay to continue.

The majority of people who get CFIDS are of Irish and Scottish descent and often redheads or blondes!

How did our girl feel about the appointment?

Our girl wasn’t in the room when we discussed the 4 to 5 years or the schooling issues as we thought it would not be beneficial for her to hear the answers. As it turns out we’ve told her about the schooling answer since it was we wanted to hear but not the time answer. She will come to that in her own time if necessary. I believe she already has some idea as affirmed by her least favourite comment made by lovely people trying to help…. I will share that with you tomorrow! Anyhow as far as she goes the appointment just served to confirm most things for her, she already feels believed and, I hope, supported and she is finally learning that everyone is saying, “You don’t need to strive to do everything. Pick what’s really important and what you can manage and do that. And enjoy it. And that’s enough.”

How do we feel?

Aah grief. I’m still processing it all but feel like I am getting to a better place in terms of acceptance. Think my Masters had better stay on the backburner for a while but who knows. One day at a time. Incredibly grateful as always that it’s a changed life, not a lost life and that I can be around for her. Curious to see how this affects the teenager/Mum relationships over the years to come!

Andrew? Hmm, forgot to ask him directly before he disappeared off to the US for a very hectic week but he certainly appreciated the hour and a half the doctor gave us and feels, as I do, that we are doing the best we can….

Thanks for reading. Let me know your thoughts in the comments section below if you feel like it and have time ……..

 

 

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2 Responses to “CFIDS Paediatric Specialist visit”

  1. Hi, thanks for your comment on my blog, I thought I’d have a quick look at yours 🙂

    It breaks my heart that your daughter is suffering from this disease, I find it hard enough to cope with at 26 and can’t imagine how hard it must be for her at 12. (to be honest I can barely remember being 12, now that’s scary).

    Two things that helped me straight away, not to get better but to find my limits are: wearing a pedometer and a heart rate monitor.

    Recording steps taken each day is complementary to GET, you can see what ‘exercise’ you are doing already everyday and try and match the payback to the activity to help find a base line. I for example, at the beginning of my illness would get a 3 day grace period before post exertional payback symptoms kicked in which made it hard to figure out initially.

    The heart rate monitor also is handy because it is a measure of how well you are without having to think about it. I know if I look down and my pulse is 150 then I should really stop whatever I am doing and rest till it comes down. Also it is good to see how a medication affects this eg. I think the edronax I was on raised it so coming off it has been beneficial.

    I don’t know if you are on Facebook, but there is are really supportive and informative groups on it which post info about me/cfs and services/resources in oz. Feel free to friend me, Sarah Bellany. 🙂

    Best of luck to you both

    xx
    🙂 Sarah

    • Annie Says:

      Sarah, my daughter has just devoured all your blog posts and plans to write to you tomorrow so thanks as it’s really great on a number of fronts (no. 1 it’s not just boring Mum saying supplements, heart rate monitor etc are a good idea! – she wants to listen to me but it’s just easier to also hear it from someone else!) We both found your posts very entertaining as well as informative – you have a nice writing style! We particularly enjoyed the LargeDad stories told with such affection.
      Hope tomorrow is a good day.
      Talk soon. Annie


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