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7 week old nephew with HCM

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  • 7 week old nephew with HCM

    [7 week old nephew with HCM]

    Author: Holly (---.systems.cogeco.net)

    Date: 09-16-02 19:45

    Hi,

    I am completely new here, but have an urgent need for info. Our nephew was just diagnosed yesterday with HCM, and his condition is very serious. I have a few questions, and any help would be greatly appreciated.

    1. Kyle is currently at Toronto Sick Kids Hospital, does anyone know of its reputation for treating HCM...who/where is the best place for treating infants with HCM.

    2. At first the Dr's said he would require a heart transplant, but now they are saying that they have to make sure this isn't affecting any of his other organs or muscles ( I am hearing much of this info 2nd hand) does this make sense...none of the literature I have read mentions anything about this.

    3. Are there any new, revolutionary treatments or studies out there that may be of help to us.

    4. I have read everything on the HCMA website, is there any sites dedicated to pediatric HCM that may be useful.

    Thanks,

    Holly

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    [Re: 7 week old nephew with HCM]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 09-16-02 20:14

    Holly,

    I'm sorry to say that I don't know the answers to any of your questions, but I am sure others on this board do know at least some of the answers you so desperately seek. I'm just posting to let you know that I am thinking of you and your entire family as your nephew goes through this. Sending good thoughts and prayers your way:

    Reenie

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    [Re: 7 week old nephew with HCM]

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

    Date: 09-16-02 21:10

    Dear Holly,

    I'm very sorry about your nephew's condition. When they say that they can't transplant until they know if other organs are effected only makes sense if he has something else and -not- HCM. There are other conditions that cause enlarged hearts. I'm not trying to confuse you, but what are they basing their diagnosis on?

    Is HCM already in the family?

    Please call the office at 973-983-7429 to talk to Lisa about pediatric heart centers and the latest research. I don't know of any pediatric HCM web sites. There is no cure for HCM. There are a couple procedures that will reduce the septal wall's thickness, but there is nothing to shrink an enlarged heart or to thin the outside walls.

    HCM in babies is very rare. HCM almost always shows up when you are in your teens and twenties, with some late onset popping up too.

    I'm also sorry I don't have any exciting info for you, but do please call the office to talk to Lisa in person.

    best wishes,

    sarah

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    [Re: 7 week old nephew with HCM]

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

    Date: 09-17-02 21:08

    Hi Holly,

    I'm sorry to hear of your nephew, as I'm sure you and your siblings have heard much of. My 25 month old, Emily, has HCM AND WPW (WPW is an arrythmia problem, which isn't good for HCM) We go to Sick Kids in London, Ont.

    OHIP (for Americans, that's Ontario Health Insurance Plan), as you probably know, has decided it would be "best" to shut down Paeds Heart Surgery in most centres, leaving only Sick Kids in Toronto and Ottawa the only places for most paeds heart surgery. The good part about that is the best PC surgeons have accumulated in these centres. We're facing surgery for Emily - myectomy and cardiac catheterization for WPW. We're waiting for a date to be set. I thought this was the most awful thing for us, as we're in Zurich, and can reach Sick Kids Toronto easy in 3 hours driving 120kms. I'm not thrilled about being so far away, but I've been 10 times reassurred that Toronto Sick Kids is the best for babes needing surgery. I've heard a great deal about the care of babies and the families, and the support and aftercare is supposed to be outstanding.

    If you're close to Toronto, give them a call. I've heard of a support group ran from Kitchener for kids with HCM, with the opportunity for kids like themselves to meet with each other, as well as support for parents. Direct your questions to the Paeds unit there. It's great and they take the time to talk with people 'like us' with many concerns and questions.

    Take care, and keep in touch. I'm sure I speak for everyone when I say we'll be praying for you!

    Michelle

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    [Re: 7 week old nephew with HCM]

    Author: Holly (---.systems.cogeco.net)

    Date: 09-17-02 22:49

    Hi Michelle,

    Thanks for your info, and I'm sorry about your daughter. I hadn't even heard of HCM until Sunday, but now feel for everyone who suffers from it. I had some further questions for you, if you don't mind.

    1. What age was your daughter when she was diagnosed with HCM.

    2. Did they ever consider a heart transplant.

    3. Did they do a muscle biopsy to see if it had 'spread' (this part I don't understand)

    Kyle is at Sick Kids in Toronto...so I guess he is in the best place here in Ontario...although this disease seems so rare, I wonder how often they treat kids with it.

    Do you have any more info on the HCM group in Kitchener, any contact that you could put us in touch with?

    I appreciate your help with this.

    Holly

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    [Re: 7 week old nephew with HCM]

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

    Date: 09-18-02 11:17

    Holly,

    If your nephew is 7 weeks old and they are looking for other organs with failure/problems they are likely ruling out forms of medibolic disorders. If they rule out these medibolic disorders and it is straight HCM, they have options. One is transplant, others depend on how he is showing the disease, surgury, meds, even devices. Go slow... let his mom and dad know of the HCMA and we can get then on the right track medically - support can be found at the hospital they are at now... it need not be HCM specific they have cardiac support groups for parents..

    that will help at this point.

    Let us know if we can help.

    Lisa

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

    [Re: 7 week old nephew with HCM]

    Author: Krista Donnelly (198.76.142.---)

    Date: 09-18-02 12:40

    Hi Holly,

    There's a new website up on pediatric cardiomyopathy at http://www.childrenscardiomyopathy.org/

    It's got a lot of information laid out in a logical fashion. This site does talk about all the different forms of cardiomyopathy (dilated, hypertrophic, restrictive) but they're careful to let you know which type is being talked about. There's also a lot there about the metabolic disorders that may cause HCM.

    I'm also very interested in what information the doctors used to diagnose HCM in your nephew. My son Seamus died at the age of 6 weeks in June. In the intensive care unit, they discovered his septum measured 7-9 mm (and told me that normal was 4-6 mm). They're also conducting testing for metabolic disorders. The exact cause of his death is still unclear - he had seemed healthy and I woke up one morning to find him not breathing. His septal measurement may be a clue that he had an arrythmia caused by the myocardial disarray of HCM. But, I still don't know yet.

    I hesistated at first to mention Seamus because I don't want to unduely alarm you. Every case is different. I hope for the best for your nephew!

    Krista Donnelly

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    [Re: 7 week old nephew with HCM]

    Author: Shayne (192.76.86.---)

    Date: 09-19-02 10:08

    My younger brother was diagnosed with HCM when he was 8 months old. He had surgery at the Medical College of Ohio in Toledo. (not a transplant) He's now a 17 year old teenager. He's on med's and has a lot of physical restrictions, but has led a pretty normal life. Everything's not all doom and gloom, people can develop this at an early age and still be "ok".
    NOTE: This is a post from the previous forum message board.

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