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Hi everyone -
My name is Stephanie and my daughter, Emma, is 16 months old and has been diagnosed with progressive HOCM. I'm a relatively new member here, and posted an intro message in the general forum about a month ago. I just recently realized I might be better off introducing myself here (duh!).
Emma was diagnosed at 5 months by a pediatric cardiologist after a heart murmer was detected by her pediatrician. At the time her condition was mild and the hope was that it would stay that way. Unfortunately her most recent echocardiogram showed a significant increase in the thickening of the septum and the obstruction caused by it. The cardiologist has started Emma on Verapamil in hopes that it will reduce the degree of obstruction; but we were told that this is a possibility, not a guarantee. I fear that she is headed for heart surgery, and I worry about even worse things. Everytime I go in to check on her when she is sleeping, the first thing I do is look at her chest to make sure she is breathing.
I am in the process of trying to get Emma in to see a specialist here in the Boston area, but it seems as though they don't have a lot of experience with children her age since this disease is very rare in young children. I go back and forth between feeling hopeful and in control of the situation, and defeated and overwhelmed. I'm sure you have all been there. Today is one of my overwhelmed days. I just want to make sure Emma is getting the best care she can.
I have heard from a couple of members in similar situations and hope to "meet" others. Thanks for listening.
Stephanie
My name is Stephanie and my daughter, Emma, is 16 months old and has been diagnosed with progressive HOCM. I'm a relatively new member here, and posted an intro message in the general forum about a month ago. I just recently realized I might be better off introducing myself here (duh!).
Emma was diagnosed at 5 months by a pediatric cardiologist after a heart murmer was detected by her pediatrician. At the time her condition was mild and the hope was that it would stay that way. Unfortunately her most recent echocardiogram showed a significant increase in the thickening of the septum and the obstruction caused by it. The cardiologist has started Emma on Verapamil in hopes that it will reduce the degree of obstruction; but we were told that this is a possibility, not a guarantee. I fear that she is headed for heart surgery, and I worry about even worse things. Everytime I go in to check on her when she is sleeping, the first thing I do is look at her chest to make sure she is breathing.
I am in the process of trying to get Emma in to see a specialist here in the Boston area, but it seems as though they don't have a lot of experience with children her age since this disease is very rare in young children. I go back and forth between feeling hopeful and in control of the situation, and defeated and overwhelmed. I'm sure you have all been there. Today is one of my overwhelmed days. I just want to make sure Emma is getting the best care she can.
I have heard from a couple of members in similar situations and hope to "meet" others. Thanks for listening.
Stephanie
Fortunately not any more.
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