Sorry to hear of your cardiomyopathy.
Congratulations on the birth of your baby.
A boy or Girl?
Our cardiomyopathy experience relates to our almost 8 year old daughter Paxton being diagnosed with Restrictive C.M following C.H.F in May this year.
We researched the various forms of cardiomyopathy to gain an understanding and the treatment options.
A good starting place we found to understand the various forms was.
www.heartcentreonline.com
and
www.med.umich.edu
Links and your search engine will provide you all manner of sites.
To understand treatment options.
In addition to Paxtons usual meds of Warafrin 1mg daily Frusemide(Lasix)4mls daily and spironolactone 5mls twice daily.
We researched for published literature in medical Jnls.
We used Entrez-PubMed for our search.
We were able to narrow our focus to coenzume Q10 as researched over quite some time by Dr P Langsjoen.
Refer abstract: Int J Tissue React.1990:12(3):169-71.
A six year clinical study of therapy of cardiomyopathy with coenzume Q10.
That may be a useful place for you to start.
In addition of interest to us was research done with long chain fatty acids N3 and N6. (as in EPA in omega 3 fish oil.) In particular that reported from France in 1994.
With regard to control of ventricular arrhythmia and in lessening impact of muscle damage following myocadrial infarction.
We posted on this board 11 July seeking experience of others with Q10.
We were fortunate to recieve amoungst the may replies
one from Vickie Barts.
Who I see has also responed to yours.
Vickie has a tremendous resourse of experience which may have relevance to your case.
We posted an update this board 28 July.
We have been able to make direct contact with Dr Langsjoen who has been most helpful in sharing his cardiomyopathy research.
In addition to Paxtons usual meds we have her on 100mgs Q10 twice daily with food and 2.5gms enhansed omega 3. As in coromega (see www.coromega.com)
WE have found significent improvement with Paxton since we commenced this programme.
Good luck with your research and until we speak agian:
Enjoy the beauty of the sunrise and sunsets and the power of sharing in experiences of others
From New Zealand
Noel Desiree and Paxton.
Posted on Aug 31, 2003, 6:39 PM from IP address 203.98.50.22