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[Update from NASPE]
Author: Lisa (---.proxy.aol.com)
Date: 05-09-02 00:05
Hello to all,
I am writing to you from San Diego and the North America Society of Pacing and Eletrophysiology annual Meeting.
This morning before Sharon Bates and I set up the booth I attended a session entitled "The Spectrum of HCM in Pediatrics". The speakers included Dr. Jeff Towbin, Dr. Steven Lipshultz, Dr. Barry Maron, Dr. Marc Ovadia, Dr Robert Weintraub, and Dr Michael Silka
The general message from the session was that children with HCM have a much better prognosis then ever thought before. The risk of sudden death is lower then reported in previous reports, mostly due to referal center bias. This meaning all the reports and data had been collected from only 1 or 2 centers, these centers only see the sickest of patients, therefore the data is skewed to the negitive.
The incidence of sudden death in the very young was interesting, in the 1st yr of life the risk, in a study by Lipshultz, the risk was about 1.5% then it lowers significantly each year of life up to 10 years old. The risk increase again though the teen years.
The issue of defib. implant was discussed. while all agree it is a serious step and requires careful selection, it is an option that those children with one or more risk factor should evaluate this treatment option.
The topic of surgical treatment for obstruction was discussed and it is viewed a the standard of care for children who have not responded to medication. Interestingly 2 cases were presented in children who had prior surgury and had regrowth. In these 2 cases they attempted Alcohol Septal Ablation. These cases were met with a great deal of concern from those in attendance. While the 2 case did reasonably well it was the overwelming opinion that this procedure should not be done in children.
I will write more tomorrow night if I am awake!
The good new here is the reseachers are working hard for us and I will have some more updates soon!
All the Best!
Lisa
Author: Lisa (---.proxy.aol.com)
Date: 05-09-02 00:05
Hello to all,
I am writing to you from San Diego and the North America Society of Pacing and Eletrophysiology annual Meeting.
This morning before Sharon Bates and I set up the booth I attended a session entitled "The Spectrum of HCM in Pediatrics". The speakers included Dr. Jeff Towbin, Dr. Steven Lipshultz, Dr. Barry Maron, Dr. Marc Ovadia, Dr Robert Weintraub, and Dr Michael Silka
The general message from the session was that children with HCM have a much better prognosis then ever thought before. The risk of sudden death is lower then reported in previous reports, mostly due to referal center bias. This meaning all the reports and data had been collected from only 1 or 2 centers, these centers only see the sickest of patients, therefore the data is skewed to the negitive.
The incidence of sudden death in the very young was interesting, in the 1st yr of life the risk, in a study by Lipshultz, the risk was about 1.5% then it lowers significantly each year of life up to 10 years old. The risk increase again though the teen years.
The issue of defib. implant was discussed. while all agree it is a serious step and requires careful selection, it is an option that those children with one or more risk factor should evaluate this treatment option.
The topic of surgical treatment for obstruction was discussed and it is viewed a the standard of care for children who have not responded to medication. Interestingly 2 cases were presented in children who had prior surgury and had regrowth. In these 2 cases they attempted Alcohol Septal Ablation. These cases were met with a great deal of concern from those in attendance. While the 2 case did reasonably well it was the overwelming opinion that this procedure should not be done in children.
I will write more tomorrow night if I am awake!
The good new here is the reseachers are working hard for us and I will have some more updates soon!
All the Best!
Lisa