[Cleveland Clinic vs Dr. Maron?]

Author: John (---.buff.east.verizon.net)

Date: 01-06-03 18:59

Hello,

Can anyone give us some opinions on which specialist we should see?

Our daughter was diagnosed with HCM almost two years ago when she was in Kindergarten and 6 years old. We've been HCMA members since the week we found out. She is now going to be 8 next week. For the most part she has been asymptomatic except chest pains (tightness) off and on for the last month or so. Her local pediatric cardiologist has had her on 60 mg Inderal daily almost right from the start and we have seen no adverse reactions. We've had echos, EKG's, and holter tests done every 6 months. No arrythmias or obstructions.

Her cardiologist had sent copies of her films, etc. to Dr. Maron to review last summer. Basically we were told, yes, she has HCM, and we should consider having her see a specialist some time in the future. Well, I think the future is now, as her cardiologist is also saying he thinks we should get some expert help.

So, the issue becomes...Do we travel the 14 hour drive to see Dr.Maron (I know he is the most respected authority in the world on HCM) or do we travel 3 hours to the Cleveland Clinic as I have also heard wonderful things about them? Our family lives outside Buffalo, NY and it would be much easier if we were established at a closer specialist. On the contrary, a couple of bucks is totally irrelevant, if our daughter's life is at stake.

Can anyone help shed some light on the Cleveland Clinic's experience with young HCM patients or share your experiences with either facility? Your help is very much appreciated!

Best regards,

John Fridmann

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[Re: Cleveland Clinic vs Dr. Maron?]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 01-06-03 22:21

Dear John,

There are pediatric HCM specialists. To find out where they are, please call Lisa at 973-983-7429.

There are great HCM centers in NY and Boston, but I don't know where the pediatric guys are.

You should know that the HCMA policy is to _not_ simply post doctor names and phone numbers on the board but to talk to each person individually and find the doctors that will work best for them, which is not something that can be adequately accomplished through the message board.

Take care,

Sarah

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[Re: Cleveland Clinic vs Dr. Maron?]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 01-07-03 16:10

John -

You have 2 wonderful centers you are looking at. I do feel you will be in good hands in either case. Much is personal preference and logistics. I would suggest taking the route that is least stressful for all of you. I also suggest you plan in some time for a little fun regardless of where you go, kids need fun even when it is a trip to the doctors

Hope all is well and it is nice seeing you here on the board!

Lisa