[hcm in young children]

Author: Lisa (---.56.167.147.Dial1.Raleigh1.Level3.net)

Date: 01-16-02 23:00

My six-month-old daughter was recently diagnosed with hcm. So far she's doing fine but has been put on a beta blocker due to an obstruction visible on her echo. I'm looking for any information I can get on the condition in children as well as the name of anyone who specializes in treating children. Dr. Towbin in Houston has been recommended, but our insurance company would prefer somebody closer to home (NC). Would appreciate any info. anyone has. Thanks.

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[Re: hcm in young children]

Author: Ellen (---.parnj1.netplay.net)

Date: 01-17-02 10:51

Hi..

You should contact the HCMA office directly to ask for additional names. You can email them directly at [email protected] or call 973-983-7429. You will get a quicker answer if you call directly.

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[Re: hcm in young children]

Author: michelle (---.proxy.aol.com)

Date: 02-07-02 22:28

Lisa,

I have a one month old daughter who was diagnosed with hcm also. She is taking Inderal because of an obstruction. I learned about Dr. Towbin because of your message on this board and have called to speak with Dr. Towbin . He runs a clinic on thursdays at Texas Childrens Hospital in Houston. His phone number is 832-826-5600 and you should speak with sarah to make an appt. I am still waiting to hear back from her. I live in New York and have been to Mt. Sinai and Columbia presbyterian hospital. I am going for a third opinion as well. None of these doctors seem to know much about infantile hcm. I think I will travel to Houston to see Dr. Towbin when I can get an appt. Please e-mail me with any new information you might have. I know it is extremely difficult to learn that your young baby has a chronic disease because I am going through it as well. I will e-mail you also with any new information I get.

My thoughts and prayers are with you,

Michelle

[email protected]

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[Re: hcm in young children]

Author: Louis D'Aguanno (208.193.30.---)

Date: 03-05-02 13:03

Hi Michelle! I thought my wife and I were alone until now. I hope your daughter is doing well. We just had our fourth son on February 13th at Northshore University Hospital in Manhasset. He was diagnosed with Dandy Walker Variant and because of that was put through a lot of tests including an echocardiagram. The Pediatric Cardiologist said they have found thickening in the ventricle walls(3 times the normal size) and said he has HCM. We're going for a second opinion this Thursday at St. Francis in Manhasset. Did you try them as well? I've been trying to get answers as to what we should expect going forward, but like you said in your note nobody seems to have the answers. What exactly were you told about the possabilities? I would be very appreciative if you had any info to share. God Bless you and your family and best of luck. I can be reached at work at [email protected] or [email protected] after 8pm.

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[Re: hcm in young children]

Author: Lisa (---.dialsprint.net)

Date: 03-09-02 22:59

Hi parents:

We had two young children diagnosed with hcm and sadly their condition was quite severe and fatal. We saw specialists at UCLA and Columbia Presbyterian (our second son was treated there). My one piece of advice is to make sure your child is tested for other possible genetic disorders such as Pompe, Noonan, Mitochondrial and Fatty Acid Oxidation Disorders which all include hcm as symptoms. As you may have heard, cardiomyopathy in babies and young children is very unusual and it could actually be a symptom of another disorder. From our learnings, if it is a fatty acid oxidation disorder, a change in diet or addition of a drug (carnitine) could help stabalize or even in some rare cases improve the heart condition. Because this is such specialized information, alot of cardiologists don't know all the details about these disorders or which blood tests should be done. I recommend that you work with a geneticist as well as a pediatric cardiologist and even a pediatric neurologist depending on your child's symptoms. However, I do know that Dr. Jeff Towbin is well versed in all this and sits on the board for the pediatric cardiomyopathy registry.

I have much to share as we have been down this road two times. Feel free to contact me via email (I don't always check this message board) or tel (201-227-7015) if you need more info. I pray that everything will be ok with your child.

Lisa

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[Re: hcm in young children]

Author: wendy (---.proxy.aol.com)

Date: 03-14-02 03:51

Dear Lisa-

I read your message. I am very interested in any info you have to share. My daughter Mikahla was diagnosed with HCM . She is now 4 1/2 years old. She is taking inderol, lasixs and enalapril. She went until October of this year w/o any meds., only being followed by cardiologist. They have always told me up until then that we will just watch her and see what happens. To my knowledge she has never been tested for any of these other diseases. Can you tell me exactly what I need to know -as far as questions I should be asking the cardiologist- regarding these other tests. I am very confused about the whole HCM and am trying to find out as much as I can. The docs. have told me that Mikahla may eventually need a heart transplant. They have told me that there is no surgical correction for her myopathy as it is right and left ventricals. But they do point out the fact that she has gone this long w/o meds. What if any light can you shed on her illness. Looking for answers that perhaps cant be answered.... I am thinking of your two little ones. Thank you for being there for support.... Wendy