If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

My 8 year old daughter and HCM!!!

Collapse

About the Author

Collapse

HCMA FORUM ARCHIVE Find out more about HCMA FORUM ARCHIVE
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • My 8 year old daughter and HCM!!!

    [My 8 year old daughter and HCM!!!]

    Author: Nielen Dickens (---.otelco.net)

    Date: 04-25-02 00:07

    Hi,

    My name is Nielen Dickens and I have an eight year old daughter that was diagnosed with HCM when she was just four years old. My daughters name is Amber and she is a sweet little girl and means a great deal to me. The reason that we found out that she had the HCM is that she would come up to me and her dad and she would say my heart is beeping and by that she ment that her heart was beating fast and so that prompted us to take her to her Dr. and when the Dr. listend to her heart she heard a murmer and then she did an ekg and from there off to the Cardiologist and then the diagnosis of HCM and was put on a beta blocker called atenolol 25 mg. Now for the first two years Amber see her cardiologist once a year but last July when my Husband and I took her for her Cardiologist visit they found something new and that was that now with the HCM that she now has also Subaortic stenosis and Trivial aortic insufficiency and so they were going to do surgery on Amber and that was on a Friday which the echo appeared to show that Ambers Septum was thinner and that there was a ridge and so over the weekend the Cardiologist gave it more thought and talked with a his colleagues and decided to get an MRI done and so the following Wed. we took Amber for the MRI and on it it showed the septum to be thick all the way up and so he decided to wait on doing the surgery and that the best thing to do was just to watch her for now. So she seen him in Nov and it was the same and today we took her back and it was the same again but she has been having over the last few weeks very fast heart rates and also irregular heart rythem so they are sending a vent monitor so that way they can see what is going on with her heart. Now I can certainly tell you that it is heart wrenching to know that Amber's heart is not well but I will keep hoping and praying for her. Also my husband has HCM and two years ago he had a massive heart attack and the peramedics were able to revive him. Well if you have any sugestions I would certainly like to hear them.

    Sincerely,

    Nielen Dickens

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

    [Re: My 8 year old daughter and HCM!!!]

    Author: Glen (---.com)

    Date: 04-25-02 08:38

    Hi Nielen

    A term you use, Subaortic Stenosous is a term used when I was first diagnosed 30 years ago. My cardiologist says that name is no longer used and has been replaced by the HCM term, so as far as I know Subaortic Stenosous and HCM are one in the same.

    I am not familair with the term Trivial Aortic Insufficiency, but it sounds like an obstruction thru the valve which is consistent with HOCM, but I will let someone else comment re that as I am not completely sure.

    Are you using a cardiologist that is right up to snuff on HCM, not all of them are.

    It sounds like they are not quite sure how to proceed.

    Anyway good luck to you and especially your daughter.

    Glen

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

    [Re: My 8 year old daughter and HCM!!!]

    Author: Sarah Beckley (---.dialup.mindspring.com)

    Date: 04-25-02 13:51

    Dear Nielen,

    Please call the HCMA office at 973-983-7429 to find specialists for your husband and your daughter. It doesn't sound like they are seeing experts. Glen is exactly right about his take on this.

    Furthermore, since your husband has had a heart attack, he is at risk for another one. He should be evaluated for an implantable cardioc-defibrillator (ICD) that could save his life if he suseptable to ventricular fibrillation. I'm not saying he is, I'm just saying that it is very important to be properly evaluated by an HCM specialist to ensure that every precaution is being taken.

    If you leave a message with your name, phone, number and address on the office vm they will get back to you asap with suggestions.

    take care,

    Sarah

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

    [Re: My 8 year old daughter and HCM!!!]

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

    Date: 04-25-02 18:23

    Hello,

    Please call the office to schedule an appointment. Your husband and daughter should both be seen by specialists in the field of hypertrophic cardiomyopathy. The terms subaortic stenosis is in fact another term used to describe hypertrophic cardiomyopathy. I am concerned that the physician seeing your daughter may not have enough experience with this particular disease, please do not get me wrong I'm sure he is a well qualified cardiologists, but very few cardiologists have enough experience with these cases to understand the full disease spectrum.

    Our number is 973 983-7429.

    Best wishes,

    Lisa Salberg

    President

    HCMA

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

    [Re: My 8 year old daughter and HCM!!!]

    Author: Nielen Dickens (---.otelco.net)

    Date: 04-26-02 01:08

    Thank you very much for your support. I will call the HCMA tomorrow. We live in Alabama and I was wondering where one is located that would be near or in Alabama. I also was wondering if any of you have heard of Sibley Heart Center? After the overwheling ordeal of the possibility of open heat surgery my Husband and I decided to get a second opinion weather or not the surgery should be done and after eight months we finally got a copy of Ambers medical records and a copy of the MRI video tape that was done in July of 2001 and so we should hear from them hopefully within a couple of weeks. Do you know if they acually specialize in HCM?

    Sincerely,

    Nielen Dickens

    Thanks!

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

    [Re: My 8 year old daughter and HCM!!!]

    Author: Sarah Beckley (---.dialup.mindspring.com)

    Date: 04-26-02 10:08

    Dear Nielen

    Here is their web site: http://www.choa.org/cardiology/sibley.shtml. THey don't list HCM by name, but they do transplants and have ICD and arrhythmia clinics.

    You can give them a call and see if they have a couple people devoeted to HCM.

    Good luck,

    Sarah

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

    [Re: My 8 year old daughter and HCM!!!]

    Author: Paul Murphy (---.dsl.mindspring.com)

    Date: 04-27-02 12:18

    Hello Nielen,

    my daughter, age 12, is an HCM patient at the Sibley Heart Center (part of Children's Health Care) in Atlanta. We've been seeing Dr. Kenneth Dooley there since September, when she was diagnosed. There are I believe close to 20 pediatric cardiologists affiliated with Sibley and they have a weekly cath conference to discuss their cases. Dooley is well known in Georgia and was recommended to us by the head of cardiac research at Emory. I believe Lisa knows Dr. Robert Campbell at Sibley and thinks highly of him also. Campbell chaired a daylong conference last summer called "Parenting your heart child" at Emory that was very interesting, but contained no information on HCM. I've asked for HCM to be included for the next conference, which is scheduled for August 24, 2002.

    best wishes for you and your daughter,

    Paul

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

    [Re: My 8 year old daughter and HCM!!!]

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

    Date: 04-29-02 13:32

    hi.

    i also live in alabama. i have been diagnosed w/ hcm since i was 30. (by echo due to sudden death of mother at age 31). my son also has hcm. we are both folowed by uab (dr colvin for pediatrics and dr kay for adult.) i was in nyc earlier this yr. had an appt w/ dr mark sherrid and he concurred w/ the treatment we were both recieving.

    however my son is 19 and we plan to visit dr maron early summer for another opinion for him.

    best of luck
    NOTE: This is a post from the previous forum message board.

Today's Birthdays

Collapse

Working...
X