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[Son's yearly screening]
Author: Sherry (---.mis.prserv.net)
Date: 06-22-02 11:20
We took lil' Tomy to his yearly screening on Thursday (20th). The EKG was normal, no changes from last year. The murmur is VERY PROFOUND, as the cardiologist stated. But, believes it to be a functional murmur.
After viewing the ECHO, he asked for another view to ......complete.....the test, wanted a picture of the aorta. After the additional views..........this is what I was told............. "Thomas's........ EKG.......has no changes, His...... murmur..... is very profound..... (yet functional)....., and he has a....... "little" hole....... in between his artria's. Kind of like, when in utero.
It doesn't seem to be causing any problems now. So, we aren't going to put any....... "restrictions"........ on him at this time. There isn't any anatomical, hypertrophy, or electrical changes at this time. We will follow up at his screening next year.
OKAY!..............I had my husband diagnosed with HOCM (17 mo. ago). Been through all the tests, ablasions, and the surgery. Dad's doing okay for now. Actually tells me yesterday morning that he believes his obstruction is back AGAIN.
Our son has asthma .....severe from 2mo of age until 4 yrs. been doing well except for a few flare ups this year. Had diagnosis of the murmur at 2 mo. of age, every doc mentions it along the years. But none seem to be concerned. He will be 6 yrs old in October. Doesn't seem to have any symptoms of HCM. Does complain of feeling bad occasionally and lies down..........never really says why he feels bad.
I've already requested a copy of his office notes, EKG"S and ECHO reports and tapes. They will send them as soon as they come out of dictation next week. In a post from Lisa........she mentions looking at kids under 10 seperate from kids 10 and over. Where do I go from here? With my husband I have done well on getting done what needs to be. But this is a new area for me with the lil' guy. I don't feel comfortable waiting for nexy year!
Please give me any input ya'll can come up with. Looking forward to your responces. Keeping everyone and their loved ones in our prayers.
Sherry
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[Re: Son's yearly screening]
Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)
Date: 06-22-02 16:43
Dear Sherry
If you call the HCMA office at 973-983-7429, you can get the name of a pediatric HCM specialist to take your son to, which it sounds like he needs from whay you report.
I'm also concerned about your husband. You say he is okay, but that he thinks his obstruction is back. That doesn't sound ok to me. Is he seeing someone the HCMA recommended? If not, it may be time for new doctors for the both of them.
I'm sorry you have a lot to deal with. Hang in there.
Sarah
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[Re: Son's yearly screening]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 06-23-02 11:46
Sherry -
#1 take a deep breath.
#2 lets look at the facts - your son has had no changes in his ECG, he shows no hypertrophy, yet he has a murmur.
#3 murmurs have many different causes - one of which is a hole in the heart such as you have explained.
#4 NOT every murmur is caused by HCM even in an HCM family.
#5 If you are not comfortable waiting a year ask the dr to be seen in 6 months.
now as for your husband -
there is no way to tell if his obstruction has returned with out an echo and a vistit to his doctor. Bring him in ASAP if he is feeling worse and have him evaluated...do not wait around and let him feel bad without knowing the reason.
Now for YOU... remember it is important to take care of yourself in all of this...get rest, eat well and remember to have some fun (laughter is really the best medicine)
all my best,
Lisa
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[Re: Son's yearly screening]
Author: Schrece Davillier (---.proxy.aol.com)
Date: 06-24-02 17:52
Dear sherry,
Hang in there. I know it can be hard and sometimes and frustrating. The care for you and your family is very important.Stay on the doctor's . Sometimes if your docotor does not give you the answer you want you have to change doctor's. I had to be very persistence with my son doctor to get him his first echo. The doctor first did the ekg and then decided to do the echo. The second year they told me he did not need another one. But once again I was persistence and it was ordered. I change his doctor. My son is 14yrs old and play football. My sister died of HCM so I want my son's to have an echo every year. You keep up the good work and keep your spirit up because your husband and son need you God Bless.
Schrece
Author: Sherry (---.mis.prserv.net)
Date: 06-22-02 11:20
We took lil' Tomy to his yearly screening on Thursday (20th). The EKG was normal, no changes from last year. The murmur is VERY PROFOUND, as the cardiologist stated. But, believes it to be a functional murmur.
After viewing the ECHO, he asked for another view to ......complete.....the test, wanted a picture of the aorta. After the additional views..........this is what I was told............. "Thomas's........ EKG.......has no changes, His...... murmur..... is very profound..... (yet functional)....., and he has a....... "little" hole....... in between his artria's. Kind of like, when in utero.
It doesn't seem to be causing any problems now. So, we aren't going to put any....... "restrictions"........ on him at this time. There isn't any anatomical, hypertrophy, or electrical changes at this time. We will follow up at his screening next year.
OKAY!..............I had my husband diagnosed with HOCM (17 mo. ago). Been through all the tests, ablasions, and the surgery. Dad's doing okay for now. Actually tells me yesterday morning that he believes his obstruction is back AGAIN.
Our son has asthma .....severe from 2mo of age until 4 yrs. been doing well except for a few flare ups this year. Had diagnosis of the murmur at 2 mo. of age, every doc mentions it along the years. But none seem to be concerned. He will be 6 yrs old in October. Doesn't seem to have any symptoms of HCM. Does complain of feeling bad occasionally and lies down..........never really says why he feels bad.
I've already requested a copy of his office notes, EKG"S and ECHO reports and tapes. They will send them as soon as they come out of dictation next week. In a post from Lisa........she mentions looking at kids under 10 seperate from kids 10 and over. Where do I go from here? With my husband I have done well on getting done what needs to be. But this is a new area for me with the lil' guy. I don't feel comfortable waiting for nexy year!
Please give me any input ya'll can come up with. Looking forward to your responces. Keeping everyone and their loved ones in our prayers.
Sherry
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Son's yearly screening]
Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)
Date: 06-22-02 16:43
Dear Sherry
If you call the HCMA office at 973-983-7429, you can get the name of a pediatric HCM specialist to take your son to, which it sounds like he needs from whay you report.
I'm also concerned about your husband. You say he is okay, but that he thinks his obstruction is back. That doesn't sound ok to me. Is he seeing someone the HCMA recommended? If not, it may be time for new doctors for the both of them.
I'm sorry you have a lot to deal with. Hang in there.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Son's yearly screening]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 06-23-02 11:46
Sherry -
#1 take a deep breath.
#2 lets look at the facts - your son has had no changes in his ECG, he shows no hypertrophy, yet he has a murmur.
#3 murmurs have many different causes - one of which is a hole in the heart such as you have explained.
#4 NOT every murmur is caused by HCM even in an HCM family.
#5 If you are not comfortable waiting a year ask the dr to be seen in 6 months.
now as for your husband -
there is no way to tell if his obstruction has returned with out an echo and a vistit to his doctor. Bring him in ASAP if he is feeling worse and have him evaluated...do not wait around and let him feel bad without knowing the reason.
Now for YOU... remember it is important to take care of yourself in all of this...get rest, eat well and remember to have some fun (laughter is really the best medicine)
all my best,
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Son's yearly screening]
Author: Schrece Davillier (---.proxy.aol.com)
Date: 06-24-02 17:52
Dear sherry,
Hang in there. I know it can be hard and sometimes and frustrating. The care for you and your family is very important.Stay on the doctor's . Sometimes if your docotor does not give you the answer you want you have to change doctor's. I had to be very persistence with my son doctor to get him his first echo. The doctor first did the ekg and then decided to do the echo. The second year they told me he did not need another one. But once again I was persistence and it was ordered. I change his doctor. My son is 14yrs old and play football. My sister died of HCM so I want my son's to have an echo every year. You keep up the good work and keep your spirit up because your husband and son need you God Bless.
Schrece