anyone with experience of long QT syndrome or similar (cardio)?

[mummypig]

We paid for a private ECG to check if this was the cause of ds2's seizures and it showed prolonged QTc. So I am now going back to the GPs to ask (for the third time) if they could refer him to a paediatric cardiologist. I feel that this potentially very serious cardiac condition is far more scary than him having epilepsy, so if anyone has been in this situation I would appreciate any words of wisdom. Thanks

if the 24hour period is up, then just take it off and leave it. and return to the hospital. dont fiddle with it or anything

thanks misdee, very quick reply

Hello mummypig,
Can`t help with the monitor, but I have spent 14 years trying to find out why my healthy son collapsed and died in my garden. He was 14 and never ill, yet died instantly. We have no medical explanation. Since then we have had triplets, they are now 10. Last year I contacted CRY, Alison Cox, told them our story. In a few weeks my husband and I were up to Lewisham hospital to see Dr Sanjay Sharma, the expert on SDS, long qt etc. He spent 4 hours testing us, found nothing, which means we did not pass anything onto Matthew, but also means we do not know why he died. Now there are three more siblings, Dr Sharma has asked us to have them referred to him this year to check them. They have already had ecg and echos done by a paediatric cardiologist here, all fine. According to Sharma though, sudden death syndromes do not always show up until the child is mid teens, so we live in constant fear. LQT though can be detected at an early age. If if you are in any doubt, I can honestly recommend Dr Sharma, they would see you quickly and they do not charge. Will think of you, xx

oh triplets I really feel for you and I hope nothing ever does show up for the sake of your kids, but it must be so difficult living with the worry about it, and no diagnosis, especially as they near adolescence. Thanks for the recommendation although I hope we never have to follow it up.

On the positive side, since last weekend the falls have pretty much stopped happening (previously they were about 8 to 10 times a day, so it was quite worrying). Anyway this backs up his good ECG result yesterday, so maybe it just took a while for his new anti-epileptic medication to kick in. He did have one 'jerk' while the holter was on so hopefully that will show up when they analyse the tape.

Thanks all

I have HOCM and am in high riosk category for sudden death because of an obstruction and my 13 yr old ds has been tested and is so far in the clear.It is better to know tbh as then you can be on medication which is a life saver HTH and don't worry too much.mummypig I am the only one in my family with this although the type of cardiomyopathy i have is identical in features to the familial one.I think teh knowledge of these conditions is still in its infancy which is a worry in itself

My GP done one of many ECG on me and it showed a LQT, but he thinks it might be connected to the anxiety meds I take, so I have to come of these over the nxt few wks, BUT still he just sent me on my way.
If he said a Long QT should he not done something about it rather than say nothing......I do suffer with Panic Disorder so it actually made it worse since he has said..