hello

Use this discussion board to address concerns or to find support from others with the disease.

hello

Postby mandy26 » Fri May 27, 2016 6:06 pm

Hello.

I found this group as I searching the internet for information on Brugada. Here is my situation. My son's uncle has been diagnosed with Brugada. The other uncle pasted away suddenly in his early 40's. they believe that he might have had it. There is a history of heart disease on this side of the family. His grandmother also pasted away in her sleep from a heart attack, she also had a quadrupal bypass in her early 40's. Now here is the problem. My son's father refuses to go get tested. He is not on speaking terms with the remaining brother and sister. This makes it difficult because the family members are 2nd relatives and not first. So they will not do any further testing on my son. They did do and ECG when he was 10 1/2 years old. Other then that I was told that was it. My sister in law informed me that all the grandchildren in BC were tested and continue to be followed up. The only problem here is that his father refuses to get tested. Any feedback, suggestions are welcome.
Thankyou
mandy26
 
Posts: 1
Joined: Fri May 27, 2016 5:54 pm

Re: hello

Postby Chas » Wed Jun 01, 2016 5:24 pm

Hi Mandy and welcome to the forum.

Sorry you have had to waite so long for a response. The forum was hit by massive amounts of spam some time ago and this appears to have stopped some people visiting the forum. Hopefully others will share their views in time.

I sympathise with your problem. I am someone who likes to know, so had myself tested, but I can understand those who choose not to. Unless your husband and son have had a confirmed episode, even with a positive result, they would be considered "low risk", and it is current practice not to offer an ICD because the risks (infection, broken leads, false shocks) are thought to outweigh the benefit. So the only thing they could do would be to avoid known risk factors (see www.brugadadrugs.org), which they could do anyway. For some people the potential worry from a positive test and affects on insurance etc is worse than not knowing.

Apparently a childs ECG only stabilises when they are "older" but I am not sure where the threshold is? Screening at 10 1/2 years may not be conclusive so a recheck later may be worth considering. I know from personal experience that opinion between doctors can vary so it may be worth seeking a second opinion, but try to make sure that you are referred to a cardiologist with experience with BrS. (Check the list of doctors for members recommendations.

Please note that we are not doctors on this forum and any opinions and recommendations should be check with your doctors.

Chas
Chas
 
Posts: 249
Joined: Wed Aug 13, 2008 11:22 am
Location: UK


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