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.

HCM and kids

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

  • HCM and kids

    [HCM and kids]

    Author: Emily's Mom (---.hay.net)

    Date: 07-23-02 08:50

    Hi everyone!

    I'm looking for support on the web with regards to kids and HCM with or without WPW (Wolfe-Parkinson-White Syndrome) I used to be logged in at a site, Designs by Dolly, but I can't seem to find it.

    I find your information informative, however I need more related to children.

    Any help would be much appreciated!!

    Thanks, Michelle

    mom to Emily - 2

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

    [Re: HCM and kids]

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

    Date: 07-23-02 10:56

    Hi Michelle,

    Welcome to the board. I also just found out that my two youngest boys, 11 and 13, have mild HCM. So far they don't have a lot of symptons and are not on medication. But it is scarry because they are very active in fact they are both ADHD. I also have HCM and found it out in 1993. I had them tested back then but they didn't show anything.

    Just wonder if you noticed Dolly's posting on this board. If you click on the blue name on the top of her posting you can get her e-mail and e-mail her to see if she still has the site.

    Dora J.

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

    [Re: HCM and kids]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-23-02 15:15

    Dear Michelle

    There are a lot of parents with HCM children here. I think you will find a lot of help.

    How is everyone in your family doing?

    Please feel free to call the HCMA office at 973-983-7429 to get on the mailing list and to talk to Lisa bout anything too personal for the board.

    take care

    Sarah

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

    [Re: HCM and kids]

    Author: Darcy (---.mc.net)

    Date: 07-23-02 15:46

    Dear HCM Parents,

    My 8 year old has severe hypertrophic cardiomyopathy with a septal muscle of 2.8. He is asymptomatic and is leading a fairly normal life. Recently, I recieved a call from or cardiologist wanting us to consider putting in an internal difibulator due to the new research on preventive measures for sudden death. I am looking for any families who have a child with this device or anyone familiar with this procedure. I appreciate any help!

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

    [Re: HCM and kids]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-23-02 15:58

    Dear Darcy

    Please call the HCMA office at 973-983-7429 to talk to Lisa about ICDs in kids and the standard protocols for it and to find a doctor who specializes in this area.

    take care

    Sarah

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

    [Re: HCM and kids]

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

    Date: 07-23-02 15:48

    My daughter had her ICD implanted when she was 16 - and it has been a life saver on two occasions. Being safe is always the best decision. Call Lisa and she will explain the procedure and recommend the best doctor in your area.

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

    [Re: HCM and kids]

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

    Date: 07-23-02 16:15

    Hi everyone (especially you marleen!!)

    Welcome to the site Michelle and I hope you will find the support you seek though the many many other parents who use the board. Children with WPW are different then Kids with HCM, however the arrthymia issues are in play for both of them.

    How old was your daughter when she was diagnosed? how is she being managed now? and how are YOU doing through all of this?

    Best to all!

    Lisa

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

    [Re: HCM and kids]

    Author: Emily's Mom (---.hay.net)

    Date: 07-23-02 17:12

    Thanks for the reply and support!

    Emily was delivered emergency C-section after my 6 week long pre-eclampsia started to become toxic. It was found during the section that the placenta was almost completely broken away,which accounted for Emily's birth weight. She was 5lbs 2 oz and 17 inches. The first 12 hours were great,but blood sugar came back low,so Emily was taken up to the special paeds unit for a glucose drip. Fortunately, she was placed on a heart monitor as routine. Then at 36 hours, Emily developed SVT's, 325bpm. ECG showed WPW. HCM was diagnosed 3 mos later, after an ECHO at her PC appt.

    Emily is doing great,she's a wonderful bundle of energy for a 2 year old. She's small for her age, but has reached every physical hurdle, and cognitively, she's dong great, too. (she knows her ABC's and can count to 10, and talks in understandable sentences.

    As for me, once I got passed the point of waking 2-3 times every night just to make sure she was still alive, and started appreciating what's in front of me, it's been better. It's very hard knowing that her HCM future isn't the greatest. I went through a long period of blaming myself, as I have Rheumatoid Arthritis, and was taking Plaquenil 6 weeks into the pregnacy before I realized I was pregnant. (Emily was a large surprise after 4 surgeries to open Fall. tubes, and 2 IVF attempts) Once I understood the 2 syndrome/diseases, I've been able to be more at piece. Neither HCM or WPW are in my or my husband's family. Metabolic Genetics haven't picked anything up, either, so that leaves us to idiopathic.

    Thanks again for the support, it really helps to know others are out there like Emily (me too!).

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

    [Re: HCM and kids]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-23-02 17:19

    Hi

    Please don't think that HCM is a death sentance. It is not. It is very rare to find it so young, but it is possible to live a full life with it. Have you and your husband had echocardiograms to confirm that you don't have any HCM? I would, if you haven't already.

    take care,

    Sarah

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

    [Re: HCM and kids]

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

    Date: 07-23-02 17:25

    Hi I guess I misunderstood I missed the fact that Emily had both WPW and HCM. You mention the fact that she is small, has she been checked for Noonan's? I have heard many cases in which WPW and HCM were the 1st diagnosis only to find as the child grows that it is really HCM with conduction (electical) abnormalities that mimic WPW. They are treated the same so it is really like splitting hairs.

    DO NOT blame yourself!! this is a genetic disorder NOTHING you did made this happen, you are as much to "blame" for the HCM as you are to "Blame" for the color of her eyes, hair or her cute little smile! ALL PARENTS READ THIS AND COMMIT IT TO MEMORY PLEASE!!!

    We hope to see you on the board often and please do not forget to send you mailing address to the HCMA so the we can send you an information kit. You can email us at the address on the top of the webpage.

    Best to ALL!

    Lisa

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

    [Re: HCM and kids]

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

    Date: 07-23-02 17:36

    FYI - I spoke to a young man this past week who was diagnosed at 2-3 weeks old... he is now 25 years old and doing very well. Just thought you would want to know!

    Lisa

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

    [Re: HCM and kids]

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

    Date: 07-27-02 23:08

    I also have a child who has been diognosed with Hypertrophic Cardio Myopathy and WPW, as well as Congenital Musculas Dystrophy. He is now 6 mos. old his name is Matthew. I know very little about any of the diseases my team of doctors have diagnosed him with, but I am learning as much as possible. I feel very overwhelmed by all of this. Matthew is my fourth child. He has 3 older brothers, ages 11, 9, and 5. who seem to be very healthy. My doctors have not wanted to test any of them for HCM as of yet which I find odd. I am wanting to make sure that Matthew is getting the best care from his doctors.

    Matthew was carried full term, and I had a normal pregnancy, at two mos. my pediatrician heard a murmur and referred me to a cardiologist, whom at that point told me that he was sick and needed further testing. We spent 4 days at St. louis Childrens Hospital, and found out his diagnosis.He is now on 6ml of Atenolol a day and is doing fine. I am concered that of what the future holds. My doctors tell me that his heart conditions are of great concern, and that time will tell with the Muscular Dystrophy.

    I need as much information that I can get to benefit him. I sometimes feel that the doctors know more than they tell me. Are there specific questions I should be asking. He does not see his cardiologist now until September.

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

    [Re: HCM and kids]

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

    Date: 07-28-02 12:49

    Kathy,

    Sorry to hear of the diagnosis of your son Matthew. I know you must be overwhelmed with all the information and it sound like you are doing a good job looking for information to help your son.

    I would recommend that you do have your other children screened, more so for the "better safe than sorry" appoach. Some doctors are still under the misconception that a child must have a murmur to have HCM, and this is VERY wrong (ony 20-30% of those with HCM have murmurs).

    I would recommend a visit to a specialist for Matthew - As you may have read in othe postings I do not do this on the message board, ,so please call the office and I will be happy to get the the information.

    My best wishes are with you and Matthew .

    Lisa Salberg

    HCMA

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

    [Re: HCM and kids]

    Author: Millie (---.26.123.177.Dial1.Philadelphia1.Level3.ne)

    Date: 10-03-02 07:46

    Dear Emily's mom,

    I was searching for something on the site and came across your email. My son, Jeremy, was diagnosed with HCM and WPW at 7 years old. I'm sure by now you know what both the disease and syndrome entail. Jeremy's cardiologist is also an electrophysiologist (one who specializes in the electrical conduction of the heart) Obviously, the WPW was a threat as it caused erratic heartbeats which complicated his HCM. With this said, WPW can be almost "removed" through an catherization ablation - - where they burn the additional pathway(s) found. It is a tedious procedure where the doctor inserts a catheter in the groin area and is then guided through x-ray machine help until he gets to the targeted area. He was under general anesthesia, so he was fine. Sometimes there is a chance of returning, however, we were told (and so far it has been true) that if the syndrome returns it would be within the first three months. Jeremy is 10 now and no signs of WPW.

    I'm not sure whether there is a waiting for maturity period because your daughter is only 2 years old, but there is something that can be done about WPW. I would, of course, also see a specialist. You'll also want, in my opinion, an EP/cardiologist to do this procedure. Also, you'll want to ask him/her how many they have done. Good luck! I'm interested to hear of your latest developments since your original email was back in July. Take care!
    NOTE: This is a post from the previous forum message board.

Today's Birthdays

Collapse

Working...
X