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Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

Any heart knowledgeable people out there?

(8 Posts)
Johnnymax Fri 17-Jan-14 01:20:47

I would really appreciate if anyone could offer any help on this. Background - my 14 yr old daughter has been having regular check ups for a heart condition - hypertrophic cardiomypathy. Over the years we've been told she's not yet showing any signs but on the last appt the doc was very ambiguous with her ecg/echo/ stress test results. I managed to briefly look at the echo report and noticed the number 1 alongside MR and TR and other letters. I can only presume this referred to mitral and tricuspid regurgitation etc. Also a few years ago she had a prominent q wave on ECG which apparently subsided ( not sure of the latest findings though) and after a holter had 5 episodes of VE ( which I can only presume means ventricular ectopics)

When I look at all these symptoms they all shout out HCM and yet I am still being told she is not showing any signs. I understand that possibly a child might show one of these symptoms but not have any structural heart damage but surely more than one are too many indicators of HCM. I feel bloody pissed off that I'm not being told of their concerns with my child. I can only presume she's not showing all the indicators for a diagnosis but at the same time I feel it unkind to suggest everything is all okay, only for us to attend a check up in the near future to be told that HCM has developed. Is it the norm to keep parents in the dark or have I, with all the results that I described, jumped to a conclusion?

InSpaceNooneCanHearYouScream Sat 18-Jan-14 15:18:25

Does she actually have HCM or is she just being screened due to family history? If she has the condition then it might be quite normal to have a few irregularities without it meaning that the HCM has become a problem. Remember cardiologist are experts with sort of thing- they usually know what they're doing

Johnnymax Sun 19-Jan-14 01:24:53

I'm not suggesting that her cardiologist doesn't know what she's doing. That's not it at all. I just would rather have honesty with regards to the information that my daughter is showing potentially obvious signs to the disease rather than saying everything is all okay. No, she doesn't yet have the disease and therefore shouldn't be showing any irregularities at all.

InSpaceNooneCanHearYouScream Sun 19-Jan-14 13:50:23

What I'm saying is the consultant is very unlikely to tell you everything's fine if it isn't. They tend to paint the blackest picture if anything. I had tests for cardiomyopathy myself- I was told I did not have the thickened wall which indicated HCM.

Johnnymax Sun 19-Jan-14 18:39:32

I would have thought as well Inspace. I really hope so.

Auriga Sun 19-Jan-14 18:47:22

Rather than squint at the echo report and try to work it out, I suggest you tell your GP that you saw some of it, it worried you, and you'd like an explanation of what all the terms mean.

If necessary you could get an appointment at the cardiac clinic for one of the doctors or nurses to explain exactly what they're looking for, what the normal limits are and what her results mean.

Johnnymax Sun 19-Jan-14 20:38:43

Sound advice. To be honest, I've calmed down a bit since my OP. I understand why a Dr wouldn't jump to a diagnosis of HCM if my dd is not yet showing all the indicators. Why alarm the parent unless there is a definite diagnosis. I'm just so worried for my dd and pray she never gets this damn disease. At times my worrying mind takes over, I start googling all the symptoms and connect it to HCM, even though I have no real clue on the normal limits, well only what I've managed to find from google, and I know it's just best to leave that well alone.

MyICDiscalledsparky Tue 04-Mar-14 21:24:12

I have HOCM and my children were tested regularly too. Now they have found my mutated gene and the children were tested for it and found not to carry it so they have stopped having any tests at all. I have an ICD and had an alcohol ablation a few years ago to get rid of the thickened tissue. My Dad and grandma both died of the disease, my Dad when he was 37 and my Grandma in her early 60s.

The cardiomyopathy association is a great source of information if you have any questions. They have a dedicated nurse who you can ring up anytime and ask any questions you want too.

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