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(11 Posts)
PipinJo Wed 30-Jul-08 20:03:02

Message withdrawn at poster's request.

monkeyme Wed 30-Jul-08 22:28:47

I don't have it, but know a bit about it.It is normally diagnosed by ECG. (Specifically looking at the QT segment.) Treatment is usually either beta blockers or an ICD, if considered high risk this site has some good info

PipinJo Thu 31-Jul-08 21:50:32

Message withdrawn at poster's request.

triplets Thu 31-Jul-08 22:13:08

So sorry to hear this, but very glad that you have been dignosed and therefore helped. My husband and I both underwent tests for LQT and other sudden death syndromes last year, 13 years after the sudden and still unexplained death of our beautiful 14yr old son. As we now have triplets thru ivf we naturally have and still are concerned. The only people to listen to us were CRY and Dr Sanjay Sharma who is brilliant. He in fact wants to test our 10yr olds this year, which we must do, but at the moment we have another trauma to deal with as my husband was diagnosed with bowel and liver cancer in March. I so hope your 4yr old is all clear, xx

emma1977 Thu 31-Jul-08 22:23:57

triplets, how enormously sad- how on earth have you managed to cope with all of that?

triplets Thu 31-Jul-08 22:43:30

With great difficulty! Matthew was our only child at that time, its hard to imagine now how we have survived it all,its 14yrs ago and days like I had yesterday bring it all flooding back. I was 42 when he died and 46 when I had my trio, so at 56 and DH 67 we struggle. Then in March DH was diagnosed with cancer, they say its not curable but treatable. In the last 3 months it has been like a roller coaster, so many set backs, and now they have cancelled his chemo again as he now has a blood clot in his picc line arm. But we try and just get on with it, though at times like today I want to run away. Nothing stays the same though, so hopefully some luck will come our way soon!

emma1977 Thu 31-Jul-08 22:46:37

I'll keep everything crossed for you, your dh and band of 3.

triplets Thu 31-Jul-08 22:49:04

Thank you Emma, it all helps xx

AbbyLou Fri 01-Aug-08 08:34:27

How scary for you PipinJo. I know very well a family who have been affected by this in many ways. You have been very lucky to have had a child and not been affected. I hope tests for your ds are clear. If you need any help I could put you in contact with the family I know if you like.

PipinJo Sun 03-Aug-08 09:16:49

Message withdrawn at poster's request.

triplets Mon 04-Aug-08 21:53:46

I feel so much for you, its the most awful worry. My three should get up to see Dr Sharma this year, but its so difficult with Harry1s intensive treatment atm. They were actually seen by a paed cardiac cosultant just over 2 years ago, he found nothing abnormal. Sharma himself though said it was rare to find any symptems until rhe child is in their mid teens. I think once we get Harry back on his course of treatment I will press for an appt with Sharma to get the kids seen. Its just that realistically Harry`s treatment is going to take us to next summer without a break, life has been hell!

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