Navigating adolescent CFS

Can a pill make a difference? December 29, 2011

Hello all. I do hope these post Christmas days find you comparatively well, happy and relaxed. We have had a lovely Christmas with my in-laws, and the sun has mostly shone which I adore! Our girl has had one lovely beach swim and we hope for more.. Forecast is good!

I wanted to update you all on the latest developments with doctor visits. As I’ve mentioned before, we’ve been waiting on a cardiologist referral from our CFS paediatric specialist that never turned up and our lovely GP suggested we go back to see the Clinical Pharmacologist we saw back in August as she knew he’d just prescribed Florinef (the blood pressure drug we’ve been keen to try) for another adolescent patient of hers. Actually, in person, he told us he thinks he probably prescribes more Florinef than anyone in the world…an interesting claim! As a clinical pharmacologist he says he’s come to CFS from a different angle. He treats many spinal injury patients who have similar blood pressure issues apparently….

Firstly, seeing him again was our Christmas miracle as the poor man stayed late on the final Friday before Christmas in order to squeeze us in and fielded a phone call about his ETA from his wife….and then went off to advise a junior doctor dealing with a dying man after us. So after all our waiting I felt very appreciative…especially as he prescribed the Florinef!!! Woo hoo! He described it as ‘the less effective drug to try’ and sent off the application for Midodrine which he says is more effective and I understand is often given in tandem with the Florinef. (Canberra has to approve dispensation of the drug he says because demand is not high here)

He went into detail again about building up exercise tolerance as being key to best results and I believe prescribed the Florinef after my blunt description of how our daughter simply refuses to follow a routine as it makes her ill afterwards. He could clearly see she needed chemical intervention to help her on her way. In summary this is what we learnt:

– lying down  for a period immediately after exercise helps her body return to a happy state sooner because while she’s exercising her muscles are pumping the blood for her and that stops when she stops…

– she would have felt particularly good when boogie boarding last month because she had a very tight wetsuit on that was helping her blood vessels constrict! (Unfortunately that wetsuit really is too tight to be comfortable so we need to get a new one)

– the doctor said ‘ this is a condition you will have all your life but you will improve around 18 years of age’ In my opinion this is because he believes Orthostatic Intolerance IS CFS.  (He doesn’t claim to know what triggers it) Is he right? I must ask him next time if that would account for inability to reproduce VO2 max output rates on a second day…..

– a few rapid squats when she feels bad (anything that pumps legs to chest basically) can help – and does, she has employed this frequently since seeing him and says it works.

– for those of you interested in the minute details of his attitude to Florinef: he doesn’t think excessive fluid and salt intake are essential, he strongly recommended not bothering with a gradual upping of dose from .025 but starting on .1  Our daughter heard my extensive discussion with him on this (including my tendering of Dr Rowe’s report and his perusal of it) and refused to start on one tablet because she was fearful of side effects (the disadvantage of debating these things during doctor visits) She took .05 for two days then one tablet yesterday. So far no change either way.

So, at least we are hopefully treating her main symptoms…’s very exciting! We have a follow up appointment on January 11th. I can’t tell you how glad I am that we got that appointment in before Christmas to give our girl the best chance of starting high school in her best possible health. Please please let the medication work……. We have started one minute on the exercise bike and will see how that goes. It makes sense to us that muscle strength is very helpful. I’m working on that myself too at the moment for other reasons!

Meanwhile it’s just lovely everyone being on holidays and everyone going at their own pace.


How’s life with at your place?



Cognitive impact of CFIDS December 12, 2011

Filed under: CFS Symptoms — parentingcfs @ 9:26 am

As I’ve discussed before, one of the major symptoms of CFIDS is something commonly known as ‘brain fog’. This, apparently, feels like a combination of  ‘having cotton wool in your head’, ‘feeling removed from everything going on around you’ and ‘ feeling the word is on the tip of your tongue but not being able to find it’ (Your additions to this description welcome at the bottom of the page) This is on top of the incredible fatigue of the body and whatever aches (in our case head and stomach mainly) are present that particular day. It appears likely this symptom is largely (?) caused by the blood pressure/heart rate issues prescribed in my previous post. It may also be a result of inflammation of the brain stem.

Anecdotally, brain fog seems to vary in severity with some people finding they have minutes or hours when things clear up again and they try to get as much done as possible whilst they can think.

This is a symptom we have had to think about a great deal in the last months as our daughter makes the change to high school next year.

Our primary school has been incredibly supportive and we will be FOREVER grateful to them. We were able to take all academic pressure off our girl and encourage her to view school as a place to go to be social and only manage as much work as she could. It was comparatively easy for us as parents to relax about this, once we got our heads around it, as we knew that she was already at a good academic level.

The reason next year has  had to be thought about particularly carefully is that back in May our daughter won herself a place in an academic class at a nearby high school. 2 weeks later she received the official CFIDS diagnosis. For the test she had to concentrate for an hour and a half, then had a break, then another hour. She has done nothing as academically strenuous as this since and finds it difficult to productively concentrate for long periods. And yet, when she produces work it is still of high quality. It’s her stamina that is affected, not her conceptual ability. Our specialist agrees there is no reason why she shouldn’t retain her place in the class.

We have had discussions with the school already about how our girl is going to manage next year. Accommodations that have been discussed are limiting subjects to 1 or 2 (I will be driving her to and from school as required..yay me!), cutting back the amount of homework required of her for each subject, flexible due dates, testing shortened or divided, permission to have her phone in class, eat and drink as needed and leave class when feeling particularly ill.

All of this is early days and we won’t even begin to see how it’s all going to pan out until February but I am doing my best to maximise the chances of her being able to continue attending school. I know there are things I will not be able to forsee.

Tomorrow is Orientation Day at the high school. It runs from 8:50am until 2:30pm. Our girl, who hasn’t been at school for longer than 2 and a half hours since June, would love to stay for the whole time. I wish she could. Only time will tell…..

I would love it if those of you who read my blog and experience ‘brain fog’ could explain the feeling to me some more…if you’re not feeling too foggy! The other night I was up all night with our geriatric dog (who is okay but now has a Valium prescription!) and had a bad headache the next day as well as being exhausted. I felt like every thought was an effort. I imagine that is somewhat like it feels…and it’s not good.

Hope your day is not foggy. : )


Orthostatic Intolerance testing December 6, 2011

Filed under: CFS Diagnosis,CFS Symptoms,CFS Treatments — parentingcfs @ 9:39 am

It is a year now since our girl’s first symptoms. In some ways this is a positive milestone. If the statistics work in our favour, we should only have 4 years maximum left of this to go…… She doesn’t really know this, we just say she could get better any day and try to keep things positive. What a pity they could be four such socially developmental years. Still, doesn’t help to dwell.

Actually we are in one of the more positive phases at the moment. She has been pacing herself well, managing her two hours of school four days a week and usually a little outing each day as well. I pointed out to her that it might be a good idea to try some recess time at school as well, to make it easier to deal with non class time next year (which she understands is important for establishing new high school friendships) and today is her second day of trying 15 minutes of recess. The warmer weather means she can spend that time sitting with her friends in the sunshine so it’s a little deceptive to think it’s a sign of any general improvement but it’s a good thing nonetheless.

Meanwhile, we have been waiting for the referral to a cardiologist to come through from our has been over three weeks now. I have called and left a message and was about to call again when our neighbour, also a physician, suggested we just ask out GP to do the in office test we wanted done. Brilliant…I was clearly having a moment where I couldn’t see for looking, to not come up with this myself as our GP had previously agreed to do the test on our son when he was displaying some symptoms last month.

Our lovely GP did do the test. It entailed our girl lying horizontal for 5 minutes, then standing upright, leaning back against the wall and keeping as still as possible for 10 minutes, then lying down again for 2 minutes. Heart rate and blood pressure are taken every minute from the 4th minute of lying down and the child reports symptoms. Some CFS sufferers can’t do this test without passing out in the first minutes of standing. Some can’t even get to standing.

Our girl was nauseous upon standing, then the first thing she mentioned was ‘tired legs’ two minutes later. At 3 minutes the GP and I could clearly see the blood begin to pool in her hands and lower legs as the became redder and redder and our girl said they were very itchy and uncomfortable for the last standing minutes. This discomfort was immediately relieved upon lying down.

The numbers we were looking for to diagnose POTS were a heart rate rise of 30 beats per minute or a rate of over 120 in the ten minutes of standing. The biggest heart rate jump for our girl was only 12 bpm however her heart rate reached 119 at 8 minutes, 121 at 9 minutes and  127 at the tenth minute. This immediately dropped to a heartrate of 64 when she lay down. Is it any wonder the poor child feels so ill?

So, what we learnt from this is what we have always suspected. A lot of our daughter’s symptoms are clearly caused by Orthostatic Intolerance. Her symptoms are not as extreme as others because she is not as orthostatically intolerant as others. All very clear to the lay mother here (there is possibly some scientific miscalculation on my part but the numbers seem to speak for themselves?)! Now to get to the cardiologist to get some fludrocortisone prescribed to see if that can improve things for her. I will fill you in when that happens. Meanwhile we continue to pour fluids and salt into her and it seems to be helping a little (?) Not always easy getting a nearly teenager to do what she should though, huh, what a surprise!

It does seem to me that this test (which was developed by the eminent Dr Rowe at John Hopkins and I can send to you if you’d like a copy) should be a standard procedure but, as I mentioned before, I am only a lay person in all this so I assume there is some reason it isn’t. I’m just very grateful our GP was decent enough to acquiesce to doing it so that we can move forward a little further, albeit at a snail’s pace. As demonstrated by the fact that it is a year since the first symptoms and we are still not on a treatment plan that is available if you look hard enough…. How can this be possible in the developed world?

I’ll finish up here… I think my longest post to date. We are in talks about next year with the high school at the moment. Will fill you in on that after the next meeting.

Thanks for reading. Hope you are having a good day where ever you are : )