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I am so scared!

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  • I am so scared!

    [I am so scared!]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 10-10-02 19:47

    Hi all,

    Need to remind you all of this before I get to the main point of my post.

    My brother's son was diagnosed with HCM at the age of 5. He was being treated with meds, but passed away while running in phy-ed at the age of 7. My now 13 year old son was diagnosed with HCM 1 year later at the age of 5 also. He has severe HOCM. Had a myectomy at the age of 6 and an ICD implant at the age of 9.

    My sister emailed me today and asked my opinion on something. When I started reading what she had wrote my heart SANK big time!

    She has two boys, a 2 year old and a 2 month old. The 2 year old had a check-up today and the pediatrician's exact words were "he has a pretty distinct murmur here. Do you have any family history of heart disease?" They scheduled him for an echo with a "heart specialist" in February. I am terrified for her!

    I think I have her talked into changing this appointment and going to the pediatric clinic my son goes to. I sure hope so! I emphasized with her how important it is for her to get a well educated pediatric cardiologist familiar with HCM, and our family history. Not just any 'ol cardiologist! I also told her I thought waiting until February was ridiculous! I know she will get him in sooner at the clinic in Minneapolis! (Sure hope so anyway!!!)

    Just wanted to share my fears with you all. Your the only ones who understand how likley it is to be HCM and how frightning it is to think another child in our family might be struck with this!!!

    I will be a nervous wreck until his echo! Love that little dude to the max!

    Dolly (Andrew's mom)

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

    [Re: I am so scared!]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-10-02 19:51

    Your family will be included in my thoughts and prayers!

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

    [Re: I am so scared!]

    Author: Heather I. (65.247.157.---)

    Date: 10-10-02 21:56

    Oh Dolly. I will be thinking of you and your family. You'll be in my prayers. I know everytime the drs. listen to my boys hearts I am on pins and needles....... It is so scary.

    Heather I.

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

    [Re: I am so scared!]

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

    Date: 10-11-02 03:01

    Dear Dolly,

    Please direct your sister to this web site and encourage her to read the message board and the information about HCM.

    You are right, any of the major centers for peds would make room for him WAY before then. She should be running, not walking, to the nearest specialist.

    She can also call Lisa next week and make an appointment to talk, too.

    good luck and best wishes,

    Sarah

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

    [Re: I am so scared!]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 10-11-02 08:14

    Thanks all for the prayers and understanding of my fright for my nephew!

    You know what REALLY ticks me off?! My sister told this pediatrician/doctor last year about the family history of HCM in children. They attempted to do an echo. My nephew was about 13 months old then and wouldn't lay still, so they shrugged it off and said they would try it again in a year! I was SOOOOO upset about their "ho-hum" attitude with it last year already!!!! It was obvious to me that they had no knowledge about HCM or they wouldn't have passed it off. And apparently they didn't have anything in his charts about our family history, or she didn't read his chart, becuase she asked if there was a history of heart disease in our family! Grrr!!!

    I tried to gently pursuade my sister last year to go to the pediatric heart clinic our son goes to and have my nephew screend, but since her pediatrician had such an unconcerned attitude about it, and said it could wait a year, she didn't pursue it any further.

    And another sign to me about this doctor's lack of knowledge with HCM is having them wait 4 more months to have an echo!!!! He is only 2 years old and already has, in her words, "a very distinct murmur"!!!!! I think that is a red flag and deserves and URGENT appoinment!!

    Thanks again. I will keep you updated.

    Dolly (Andrew's mom)

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

    [Re: I am so scared!]

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

    Date: 10-11-02 14:49

    Dear Dolly,

    Hang in there. Have you e-mailed this url to your sister as a gentle hint?

    S

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

    [Re: I am so scared!]

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

    Date: 10-13-02 21:16

    Dolly -

    1. Your sister is likley adjusting to all this info and you need to give her a little room here.

    2. Yes, Feb. is too far off given your family history, but if you push too hard she may not respond...give her space.

    3. I know your scared, take a breath and know we are all here with you.

    4. get her online get her to the board...she will learn on her own, step by step like the rest of us.

    You are amoung friends and I hope all turns out well.

    Lisa

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

    [Re: I am so scared!]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 10-15-02 10:35

    Lisa,

    Thanks for your response.

    I wanted to say that all I have discussed with my sister at this point was that I thought it would be best if she switched to the ped. cardiology clinic in Minneapolis that Andrew goes to. (She asked my opinion) Rather then just a general cardiologist. His cardiologist does confir with Dr. Marron often. And I told her I was certain they would get her son in much sooner then February.

    All my fears and upset feelings I have only "shared" with you all here. (I basically did my "venting" here!) I know my posts sounded pretty frantic, but I have not pushed my sister in any way, or even shared any of my fears with her.

    She did get an appoinment with Andrew's ped. cardiologist for November 1st. I was pretty happy to hear that!

    I am not going to pass on any more HCM info to her for now. There is always the possibility that this is not HCM. Though I know the chances are high that it is. For now we just have to wait and see!

    thanks again everyone!

    Dolly
    NOTE: This is a post from the previous forum message board.

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