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RE: HCM in infants

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  • RE: HCM in infants

    [RE: HCM in infants]

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

    Date: 10-23-02 15:00

    Hi everyone! I, too, am very sorry for Luke's passing. My Emily , who is now 2y/o, was diagnosed at birth with WPW AND HCM. We were very fortunate that Emily was a low birth weight baby (I had pre-eclampsia and placenta abrupto), in that when she was placed on a glucose drip, a heart monitor was standard procedure. If this wasn't done, I would've lost my precious Emily, as her heart rate went up to 325bpm. We thank God every day for this.

    As for genetic factors, I guess Em is a one in a million babe, as neither myself or my family (including past 2 generations) have/had any heart disease. My husband is free and clear, as is his family 2 generations back. As well, my husband and I have both had intense genetic testing to see about future kids. We have turned up clean, but our PC, as well as many other Canadian PC's stand behind the diagnosis of unknown genetic mutation (sounds like a horror flick!) and Emily, or rather her heart, was the result. I have Rheumatoid Arthritis, and was taking Plaquenil at the time I became pregnant. I didn't know I was pregnant until week 7 (After 7 surgeries and 2 IVF attempts, we were told to adopt, which we did), nor did I believe the first blood test. My rheumatologist does studies at Western University, London, Ontario, and has sugguested there could be a link between HCM and RA meds. I guess what I'm saying is this: the reasoning behind formation of HCM could be outside factors (as could be in our case). Many PC's here in Canada are determined that HCM is genetic, however Emily doesn't follow the rule. As for anyone who has dealt with the awful tragedy of losing a child from this awful condition, before having children, please consider genetic counseling. There are many conditions that HCM could've resulted from in which case you can make your decision. As for my husband and I, because of my arthritis and the fact that I take Methotrexate for it now has definitely made our decision easy to make.

    My Emily today is a thriving 2 y/o who is full of energy (wish mom was!) Her HCM, which is biventricular, hasn't increased in size since birth, we believe, thanks to her beta-blocker (Propranolol). She was placed on this to control the WPW (arrhythmia problem) and because it's kept the heart from overworking, the HCM hasn't had much of a chance to really increase. She will be having an ablation done to rid of WPW in January/2003, so I don't know what her HCM will be like. She's being studied significantly by Sick Kids in Toronto and London to see if her HCM increases as a result of being taken off the beta-blocker.

    Good luck to everyone, and while I don't get on the net everyday, I'm generally on it once a week. I've found a lot of information on this site, and my heart truly goes out to anyone with this disease. Take Care!!

    Michelle

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

    [RE: HCM in infants]

    Author: Lisa Salberg (208.47.172.---)

    Date: 10-23-02 15:03

    Thank you for sharing your Emily with us all, she sounds like a little doll. Best of luck with the ablation and let us all know how she makes out.

    All the Best,

    Lisa

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

    [RE: HCM in infants]

    Author: Robbyn (---.sympatico.ca)

    Date: 10-23-02 21:35

    Hi Michelle,

    I would be interested in any information you may have concerning RA, HCM and Plaquinel. My RA is in remission now, but I took Plaquinel for some time.

    Hope the Methotrexate is doing the job for you. I was also on that for a short time. Could you email me.

    Thanks

    Robbyn/Ontario
    NOTE: This is a post from the previous forum message board.

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