We posted 11 July "Restrictive Cardiomyopathy and Q10"
We spoke of our challenge with our seven year old daughter Paxton ,who was diagnosed in May this year with Restrictive Cardiomyopathy (RCM) following CHF and pericardial drain.
Thank you everyone who responded. You were great.
Thank you too for your thoughts and good wishes.
We understand not everyone has had the sucess they had hoped, our good wishes go out to you.
A special thank you to Vickie Speer Barts.
Vickie has posted previously on this board. We found Vickie a great resourse who has had some tremendous sucess.
We spent 3 weeks non stop researching CHF /Cardiomyopathies /options which lead us to Q10.
Our goal was to obtain the best possible understanding for ourselves. Not just of the condition but more importantly for us was being able to call on the resourses of as may people as we could ,through the net. For us thats from the bottom of the world in New Zealand.
The network on which you are reading this has been a tremendous help. Leading us to many other extremely useful sites for research.
Its been a little over 3 weeks now since we started Paxton on Q10. 100mgs twice daily with food.(in addition to her regular Meds of Warfarin 1mgs Frusemide 20mgs Spironolactone 25mgs)
We made the Q10 decision ourselves based on our understanding of its usefulness reported in published research by various cardiologists. ( even double blind studies) Including that done over quite some time by Dr Peter H Langsjoen M.D. FACC.
Our own cardiologists before they are able to endorse Q10 are comming to terms with the published research that we were able to supply them.
We felt were unable to wait their endorsement.
waiting became unacceptable to us based on the comfort we obtained for ourselves from our own research. Our comfort is such that not only Paxton but we also, are taking Q10.
It is early days yet.We live each day as it comes and thank god for it.
But what a difference Q10 has made.
Paxton has increased her exercise tolerance being able to walk now 300 mts or so.Previously walking across the road was a challenge. She is now back at school part time, and is singing and humming those songs that happy kids do.
Something that we have not heard for along time.
We were able to establish pre Q10. Cardiomyopathy specific stats as a benchmark . We are not due for follow up with cardiologist and echo's for a couple of months, It will be interesting to compare stats.
We will update on progress when those stats are to hand.
In the mean time, we felt we should post this to encourage others. Not just to do the research for you own specific condition using this site as a launch platform. But,with that research to make informed decisions for yourself and to take action on the options you have for your own situation.
We discovered through the net there are choices that could be considered cutting edge . This has allowed us to speak freely with our cardiologists and with the ability to communicate on equal terms.
Should a consequence of RCM cause a sudden end to our quest.
We will always be thankful that through the help of many people.
You ,your god and Q10 have helped us and Paxton to see more sun rises and sunsets together.
Until we post again.
Enjoy the power of knowledge from other people,and choices that gives you.
With much appreciation.
Noel Desiree and Paxton
In Beautiful New Zealand.
Posted on Jul 28, 2003, 11:54 PM from IP address 203.97.2.243