[My 5 month old has HCM]

Author: Laura Smith (---.bardstowncable.net)

Date: 11-06-02 09:52

It has been a while, but wanted to give an update. Autumn's (my 5 month old daughter) cardiologist has sent all of her records to Barry J. Maron at the Minneapolis Heart Institute. I think I read somewhere that Lisa Salberg wrote a book with Dr. Maron. Can you give me some input, the heart board met last week and said with all their years combined they have never seen a worse case of HCM. Autumn's gradiant is 150, can someone explain to me...how bad is this exactly? To see Autumn you would never know anything is wrong, she is very happy and healthy looking baby on the outside.

Thanks,

Laura Smith

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[Re: My 5 month old has HCM]

Author: Lisa Salberg (208.47.172.---)

Date: 11-06-02 15:47

Laura - It is likely that she will need a myectomy. Dr. Maron is a great person to evaluate the case. He should be able to point you in the right direction. There are some people here on the board who had surgery at very young ages and are grown adults today...and doing well.

Gradient is not the disease...it just means that the blood is not able to leave the heart...reduction of gradient is very successful in kids and adults. Did they tell you what her heart wall measurements were?

Just because it is the "worse case" these guys had seen does not mean it is really "bad"...this is a rare condition and they have likely not seen many cases to compare it to.

All the Best,

Lisa

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[Re: My 5 month old has HCM]

Author: Laura Smith (---.bardstowncable.net)

Date: 11-06-02 16:18

Lisa,

These number are off the sheet the cardiologist gave me.

LA Dim: 19

AO Dim: 16

LA/AO: 1.17:1

LVDD: 23

LVSD: 7

%FS: 68

Septum: 9-12

LVPW: 9

AO vel: 6.07 m/s

Gradiant: P=147

m=61mmH

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[Re: My 5 month old has HCM]

Author: Lisa Salberg (208.47.172.---)

Date: 11-07-02 11:55

Septum 9-12 thats a big range... are they refering to the normal range or her range?

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[Re: My 5 month old has HCM]

Author: Lisa G. (---.proxy.aol.com)

Date: 11-08-02 12:14

Laura,

I was in your shoes this time last year, and just wanted to offer encouragement and understanding. My daughter, Ellen was born with septal hypertrophy in June, 2001 and diagnosed with HCM a few months later. Like Autumn, she's always seemed perfectly healthy. We've had her on propranolol since the diagnosis, and the "moderate" obstruction she had early on is now gone. She's now 17 months old and doing great -- but I know how hard it is to live with the unknown, especially when it's your child is involved.

Getting an opinion from Dr. Maron is a great move. One of my greatest frustrations has been finding doctors who are up to date on HCM, especially in children-- and knowing whose advice to take. We took Ellen to see Dr. Jeffrey Towbin in Houston when she was 7 months old and received lots of reassurance and helpful information. We've also been in contact with Dr. Maron's office about Ellen and the rest of our family. Our genetics have been hard to pin down as I have an uncle who had HCM but I don't seem to have it, at least not yet. My other two children are also clear so far.

Best of luck to you. If I can ever provide a sympathetic ear, feel free to contact me. My e-mail is [email protected].

Lisa

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[Re: My 5 month old has HCM]

Author: Amy Williams (---.proxy.aol.com)

Date: 11-08-02 18:24

Laura,

My son, Andre was diagnosed with HCM (non obstructive) at 4 months. I was told that his HCM was severe. He is now a very healthy 7 year old. I have to keep him from participating in competitive sports, but apart from that, and taking medication he is just like any other kid his age. Because HCM is so unpredictable, we do not know if he will get worse, stay the same or improve as he gets older. So far his heart has grown and his thickness has remained the same - which is good. Your daughter is in good hands. I wish you luck and I will be thinking of you. Please feel free to email me.

Amy