parentingcfs

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…..it’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?

 

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4 Responses to “Can a pill make a difference?”

  1. Sue Jackson Says:

    Hurray!! So happy for you that you finally got to see someone who could prescribe OI meds! That’s great news!

    As for dosing, 0.1 mg is still quite low. Dr. Bell and Dr. Rowe (no offense to your pharma. but I suspect Dr. Rowe has prescribed more Florinef lol!) both recommend gradually building up until you see a positive effect. For Jamie, he saw no effect at all until he got up to 0.2 mg per day, then it was like someone had flipped a switch. And the salt and fluids make a HUGE difference – the Florinef can’t help your body hold onto extra salt and fluids unless they are present. If Jamie skips one of his bottles of Gatorade, he can really notice a difference.

    Midodrine is very commonly used with Florinef (or sometimes on its own). Dr. Rowe and DR. Bell suggest starting with Florinef, working up to 0.2 mg, then if that isn’t enough on its own, to try to add midodrine. The Florinef alone worked so well for both Jamie and Craig that they never even tried midodrine, but I know lots of other teens (and adults) who take it, either alone or with Florinef.

    You hit the nail on the head – CFS is more than OI…and exercise intolerance is proof of that. Also, OI is caused by CFS – dysfunction of the immune, endocrine, and autonomic nervous systems. That’s why treating by increasing blood volume (via salt, fluids, and Florinef) usually helps. Midodrine works differently – it is a blood vessel constrictor, like certain decongestants (Sudafed, etc.) You can get similar effects with compression garments (like a wetsuit!). A teen friend told me to try Spanx – will have to try that when I get back home!

    Similarly, anything that dilates blood vessels makes OI worse – heat, alcohol, for instance. Hot tubs are like Kryptonite for CFSers!

    Sorry, I didn’t mean to babble and lecture…just trying to answer some of your questions. It’s great that you found someone there who understands OI and can prescribe – we can’t wait to hear how Harriet does! Remember, be patient….it can take a lot of trial and error to find the right meds and the right doses, and we are all different.

    Enjoy the rest of the holiday week –

    Sue

  2. Cheri Portelli Says:

    Fingers crossed Harriet feels some improvement soon on this medication xx

  3. Jen Says:

    Annie, so glad to hear that you have received the Florinef. It’s actually wonderful to hear that Harriet is an active part of the decision-making when it comes to her treatment. This is one area of her life that she may still control, so good for her! (Although I know it makes it a little more difficult for you.) I agree with Sue that the fluids and salt are essential (and can’t hurt). I hope and pray that you see some positive results from this new medication. My best to the both of you!

  4. Keena Says:

    thank you for keeping us posted….I pray that all goes well for you and your daugther…


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