Anxiety over child’s health

[Shamrock24]

A few years ago my 13 year old son was found to have inherited a defected gene which can cause heart problems. His father (my ex husband - no contact now) has the gene and has a range of issues. He has a pacemaker fitted.
My son has some small abnormalities on his ecg but the cardiologist said if he didn’t have the gene then these things wouldn’t warrant any follow up. My son has yearly tests and check ups.

I am really struggling with anxiety regarding what might or could happen. I wake up feeling sick with worry. I can’t sleep properly because of it. I see scenarios in my mind of things that could happen and it’s effecting my day to day life. I check up on him constantly.

has anyone experienced anything similar? I’m struggling with how to cope but I really hate feeling like this.

Aww, that sounds really difficult. Can you have another meeting with the cardiologist to get more information. The main thing is, at least it has been picked up and your son will get check ups and treatment if required. There may also be a cardiology nurse specialist who can help you have all the facts, which can make it a little less scary.

We're not due to see the cardiologist again until next Summer. I asked lots of questions during the last appointment which were answered but as soon as we've left the hospital I've started to doubt what the Doctor said. I've emailed the cardiac nurses and I've spoken to a BHF nurse but I just feel like they're always being vague.
Everyone says if it was a worry then they'd be wanting to see him again sooner which I know makes sense but my brain isn't allowing me to stop worrying.

Hi, I read your previous post as well (my son has an atrial septal defect and thickening of the heart muscle which is being monitored, so I am on a similar pathway in a small way). I am sorry you are going through a rough time and it is totally understandable how worrying you are finding the current situation.

Would it help to take notes or to have someone with you at the next appointment so that you can refer back to what was said when you start feeling yourself getting anxious?

It sounds as though CBT techniques may be helpful for helping you deal with spiralling worries in the moment; your GP can usually refer you for this if you might find it of interest.

Do you have anyone who can come and give you a break?

I don't have answers but (many months after my son's diagnosis) I can say that the anxiety comes in waves and some days are better than others. CBT has been helpful for me in managing this but I think it unfortunately just does take a lot of time to grieve and come to terms after a frightening diagnosis. I wish you all the best and wish I could help more; hopefully someone will be along who can.