[HCM in infants and young children]

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

Date: 06-01-02 21:38

Hi parents: With Lisa's S. permission I'm writing a general message to all families that have a baby or young child under the age of 12 diagnosed with HCM.

I'm looking to meet other parents who are going through or have been through a similar situation as us. We had two sons under the age of 1 diagnosed with severe HCM. Sadly both died (our first undiagnosed of sudden cardiac arrest and our second waiting for a heart transplant). We've been working with the best pediatric cardiologists and geneticists. So far the cause remains unknown even after exhaustive genetic testing for metabolic, mitochondrial, and X-linked disorders.

We would like very much to get in touch with other families with young diagnosed children. As some of you may know, cardiomyopathy in very young children is extremely rare, and the progression of the disease can be different than in adults. We have asked many doctors for family referrals but due to confidentiality issues doctors cannot release names or contact families on our behalf. However, these doctors acknowledge that there are definately other families with young diagnosed children who do not fall under the typical profile of a HCM patient (in their teens or young adult years.) Therefore, we hope that by posting this message, some families willing to share information and experiences will come forward on their own

Thanks and hope to hear from some parents soon!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants and young children]

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

Date: 06-02-02 03:44

I am so sorry about your sons. Many of us in the HCM community have lost relatives to the disease, but I'm sure nothing compares to the grief of losing a child.

There is another forum you may want to look at, it seems to be mostly mothers posting. It is not as active as this one but you may get what you need from it. It is http://www.designsbydolly.com/hcm/support.html.

Kat

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants and young children]

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

Date: 06-02-02 15:39

Lisa,

I am glad to see your posting here and do encourange parents to communicate with each other... Those of you with little ones do share a unique situation, little understood in the medical community. The support and information you can share with each other is priceless. I am hopeful this message board will provide you with the link you need to find each other.

Lisa and I have known each other for a while now. I fully support her in her efforts to contact other families and possibly work together to help find some answers on a larger scale as to why these children appear to be/are so severely affected.

BEST WISHES,

Lisa Salberg

PS...Lisa give me a call I had an idea!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants and young children]

Author: lisa (---.dyn.optonline.net)

Date: 06-03-02 14:41

Dear Kat and Lisa:

Thanks very much for the information and your support!

Kind regards,

Lisa

Mom to Bryan and Kevin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants and young children]

Author: Suzanne (---.stic.net)

Date: 06-04-02 21:33

We have a 6 year old son with HCM - not on drugs, no pacemaker, etc...

He has an erratic EKG, very high voltage - doctor can't explain and doesn't think it relates. Any knowledge of that? He has been dx since 6 mos. Other 4 yr old son does not have it but is definitely congenital in my family.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants and young children]

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

Date: 06-05-02 23:57

I have a 5month old whowas diagnosed with obstructive hcm at birth because of a heart murmur. She is now taking Inderal and being monitored by ECHO every month. Next week we are taking her in for more blood testing because prior blood testing showed some elevated amino acids. I would like to speak with you regarding infants with hcm. My docor has told me this condition is very rare in infants as well. I will call Lisa Salberg and give her my name and number for you to contact me.

michelle

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants and young children]

Author: Jose Leano (164.109.144.---)

Date: 06-28-02 13:00

I appreciate the pain and uncertainty...

Our 1st son Joseph died suddenly in 1997 at 10 months of age due to HCM. No prior symptoms. His elder sister Jessica who is now 10 yrs old was subsequently diagnosed with mild HCM and is monitored annually. No meds for her at this time. Our pediatric cardiologist is from Children's Hosp Oakland CA and has been extremely supportive. We have 2 other kids (4 yrs and 18 months) who have been tested and are ok, to be monitored every other year. There is no clear prior history in either mine of my wife's families of HCM or sudden death.

I am so glad that this forum exists. When my son died 5 years ago this didn't exist and it was extremely hard to find anyone whom we could relate to, nor was there a reliable and rich source of information such as this website. I was silently hoping to read about a new drug or procedure that would cure HCM.