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.

Death of Nephew

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

  • Death of Nephew

    [Death of Nephew]

    Author: Kay Julius (204.184.29.---)

    Date: 11-11-02 12:51

    I have been reading your messages on line for several weeks now, but have yet to write in. With the death of my 10-year old nephew, Derek, last Monday, I feel the need to write. You all seem like such a close "family" and the support and the prayers from everyone is tremendous.

    Let me give you my family background before I ask my questions. My mom passed away 9 years ago at the age of 56 with Hypertrophic Cardiomyopathy. Since then, my brother, his children 10 (passed away on the playground at school) and his daughter 15 have also been diagnosed along with my sister, her son, 13. I have also been diagnosed along with my 3-year old son. My sister and I both have defibulators which were placed in March of this year. Since the sudden death of my precious nephew, the doctors are discussing defibulators for all in the family who have the disease as soon as possible. My question is what are the complications of placing a defibulator in a 3-year old? Does it have to be replaced later in life as he grows? How often are defibulators placed in children?

    They discussed putting a defibulator in my newphew, but they did a stress test on him in August and he passed with flying colors. This disease is so unpredictable it scares me to death. Of course, I would rather Brandon (my three year old) have the life saving device than not.

    I guess another question weighing on my mind is my six year old, Tyler. He had an echo about a year ago. As of yet, he does not have the disease. They did see somthing on the echo which suggests it may develop later in life. What is your opinion of having a defibulator placed in him also? He plays sports, but Brandon does not. Thank you for helping me through this tough time in my life. I do not see the doctor for my sons until next week and was hoping you could offer my some information before I go. Thanks again.

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

    [Re: Death of Nephew]

    Author: Zlata Janicijevic (---.dialup.mindspring.com)

    Date: 11-11-02 14:20

    I am so sorry for your loss. Please accept my condolences. I am sure that you will find your answers here, if not, you will be guided to those who do have the answers. Stay strong and peace be will you.

    Zlata

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

    [Re: Death of Nephew]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 11-11-02 16:09

    I am so sorry for your loss. God give you and your family the strength to move through this horrible tragedy. Please call Lisa at 973-983-7429. Your questions are all ones that need to be asked, but would most likely even challenge the experts. Lisa will be able to give you invaluable information that will help you and your family move forward with decisions after you have had a chance to discuss all with your doctors. Please continue to post on the message board, gain support from others here and take care of yourself. We all care and want to do what we can to help. Linda

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

    [Re: Death of Nephew]

    Author: Adam (199.88.72.---)

    Date: 11-12-02 00:10

    I am extremely sorry for the losses your family have endured. The fact that you seem to be staying so strong is a testament to your unwavering strength and character. Everyone here sincerely feels for you and your family. I must, however, also voice a concern with your post. Sudden death is a rare occurence with HCM (it occurs in less than 2% of HCM patients) and it is something that MAY (not necessarily) occur in family members of those who have suffered sudden death from this disease. I strongly recommend that no one in your family participate in strenuous athletic activities. There will always be some doctors out there that say it is okay to play sports even with HCM but they are in the minority and are generally not experts on the subject. I, of course, am not a doctor and am not an expert; however, I have a lot of experience with this disease and I know that the risk of sudden death should not be taken lightly if a family member has already died as a result. Please consider not allowing your son to participate in sports. I know you are aware of any risks but I just want to reiterate that we all hope nothing else happens to anyone in your family. I pray for you and your family and hope that you all experience great health and long lives. Good luck to you and know that everyone here feels for you and your loved ones.

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

    [Re: Death of Nephew]

    Author: Kay Julius (---.yhti.net)

    Date: 11-12-02 07:07

    Thank you for your email and your concern. The amount of support from my community and this site is tremendous and has helped me stay strong. My son that has HCM will not play sports. I have talked to his doctor about bowling and golf and he seems to think these are ok. What is your opinion on these sports? My other son has not been diagnosed. I have mixed feelings about whether to let him play sports. I don't want to take away his childhood by not letting him, but then I don't want to take any chances. Please know that I will not take any risks with my children. Thanks again for your concern.

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

    [Re: Death of Nephew]

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

    Date: 11-12-02 10:31

    Kay,

    I am sure you will get varied responses here. I also know that because of the suddenness of your nephew's death you are understandably cautious. I'll tell you a pediatric cardiologist told me once. She told me that although my kids screened clear at that time, even if they didn't, she wouldn't recommend curtailing regular kid activities and wouldn't prohibit them from playing sports until they were adolescents. She said that because that's when they start getting much more aggressive while playing and therefore run a greater risk of problems. All that being said, remember that it was just one doctor and we didn't have any incidence of sudden death in the family. Good luck and take care.

    Reenie

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

    [Re: Death of Nephew]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-12-02 11:00

    Again... I am sorry to hear of this loss... There are few words that will help ease the pain for your family... but know we are all here.

    You said one thing in this post that is making me worry a little... the doc said that your son shows signs that he may have te disease later.... this is not something that is possible. If there are any abnormalities, given your family history... there I would say it would be a diagnosis. I HIGHLY recommend the entire family get to a speciality center ASAP for a full evaluation.

    While defibs are great to protect against SD... there is more to HCM then SD.

    Regarding your son and sports... I would try to get his interests in other directions NOW... if he is diagnosed and has other interests to fill his time it may be a little easier for him later...if he is not diagnosed... it is still good to have interests other than sports...so it is a win win on that side. I hope and pray he is not diagnosed..but this sounds very odd to me.

    I wish you all the best...my thoughts are with your family,

    Lisa

    God Bless Derek

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

    [Re: Death of Nephew]

    Author: Kay (204.184.29.---)

    Date: 11-12-02 11:04

    My nephews doctor told them sports in which there was no continuous running was ok. Baseball was ok, but soccer, basketball, football was not ok because it was continous. Yet, my kids went to a different doctor and he said absolutely no sports. I asked about bowling he kind of frowned on it, but said he thought it would be ok.

    With the death of my nephew, I do not agree with what your doctor said or my nephew's doctor saying baseball was ok or sports was ok until adoloescents. I'm not criticizing your response, I appreciate the thoughts, but wanted to let others out there know that I don't think any sports is ok for someone with this disease. My nephew was merely "shooting hoops" and then took off running to get in line to go inside from recess. I would not consider this a strenuous activity. He had just had a stress test in August in which they raised his heartrate to 180 and he did fine. Then 2 months later he passes away suddenly.

    Thanks to everyone for listening. It really helps to be able to just talk to others who know what my family is going through. I have passed this website on to my family in hopes they will write in and find comfort too. Thanks again.

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

    [Re: Death of Nephew]

    Author: Kay (204.184.29.---)

    Date: 11-12-02 11:18

    Thanks, Lisa for the support. My whole family is seeing a specialist. I do come from a large family. I didn't mention before that I actually have seven brothers and sisters in my family plus 15 nieces and nephews. They have all been checked over the years, but I am encouraging them all to be rechecked if it's been more than 3 years since their last echo. I'm not sure what the doctor seen on the echo that he stated Tyler may have the disease. I will try to find out. He just mentioned that normally without family history what he saw would be ignored. But since the family history was there it could mean he has it and it may develop later in life. Tyler does get checked yearly. Thanks again for your concern.

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

    [Re: Death of Nephew]

    Author: Amy Williams (---.proxy.aol.com)

    Date: 11-12-02 14:05

    Kay,

    i am truly sorry for your loss. I and my son have HCM, and the thought of my son dying suddenly is too unbearable to imagine. I did have a thought in regards to your family. i am not an expert, but I work for the British Cardiomyopathy Association as a research assistant . In certain families with a high incidence of sudden death, it has been shown that the HCM is caused by certain mutations in the Troponin-T gene (Spelling?). often with mutations in this gene, the HCM can look moderate or even non-existant. However, these families seem to have a high incidence of SD. If the mutation in your family is a recognized one, a blood test would show who has the condition. However, HCM is caused be a number of gene mutations - 10 of these have been found - many more have not. In my familiy I don't know the culprit gene. I also don't know what kind of genetic testing is available in the US. Lisa would have that info.

    Best Wishes, Amy

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

    [Re: Death of Nephew]

    Author: Julie (---.cinci.rr.com)

    Date: 11-12-02 19:04

    Kay,

    I have a freind that has a daughter with an ICD. She is turning 7, but has had it for maybe a year plus or so. Her daughter does not have HCM...has other problems. I'm sure she would be happy to give you information about what she has gone through with a child with an ICD. We live in Ohio and I think her doctor is in Akron. Let me know and I will give her your e-mail address if you wish.

    Julie

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

    [Re: Death of Nephew]

    Author: Rhonda (---.sc.charter.com)

    Date: 11-12-02 22:03

    What was it specifically that they saw on the echo that suggested later development? I am asking because my 3 year old had a very minute amount of thickening at the top of septum and the doctor wanted to watch it very closely. Rhonda

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

    [Re: Death of Nephew]

    Author: Rhonda (---.sc.charter.com)

    Date: 11-12-02 22:04

    Kay-sorry-the previous message was for you! I am very sorry for the loss of your nephew.

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

    [Re: Death of Nephew]

    Author: Kay (204.184.29.---)

    Date: 11-13-02 09:10

    Thanks Amy for the information. I will talk to my doctor about this blood test. I love this site. Information from people "who've been there" is always helpful.

    Julie, could you please have your friend email me or write on this message board. I don't know if it's a good idea to place my email address on here. Is there a way to get it to you safely or my phone number? I appreciate the help. Maybe you could ask the questions to her and send through the message board. I'm just curious about complications and if it has to be replaced as he grows. Thanks again.

    Rhonda, I'm not sure what the doctor saw on the echo. I need to check into that. He just said normally what he saw would be ignored, but since the history in my family was there he wanted to check him yearly. Thanks for your interest.

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

    [Re: Death of Nephew]

    Author: terri (---.tribune.com)

    Date: 11-13-02 10:12

    Kay

    Yes, the ICDs have to be replaced when the battery wears out. I'm told the time varies. My 12-year-old daughter has HCM and got an ICD in September. We've been told anywhere between 5 and 8 years a replacement will be necessary. The surgery is supposed to be simpler the second time around.

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

    [Re: Death of Nephew]

    Author: Julie (---.cinci.rr.com)

    Date: 11-14-02 17:19

    Kay, If you want to post all your questions here on a new message and I'll forward them on to her. Her daughter just turned 7 and has had her ICD for almost half of her life.

    Julie

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

    [Re: Death of Nephew]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-15-02 12:18

    Hi

    As for the genetic testing, I don't think your local doctor is going to be able to help you. There is no standard test for HCM and there is only 1 researcher that we know of who is actively loooking/studying HCM genetics.

    You can e-mail Lisa with "genetic testing" in the subject line and include your name, mailing address, phone, family history and state your desire to have genetic testing and she can hook you up with them.

    take care,

    Sarah
    NOTE: This is a post from the previous forum message board.

Today's Birthdays

Collapse

Working...
X