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Joined: Tue Nov 08, 2005 10:47 am
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I do not know if you remember but they thought that Laine may have passed away from Long Q-T Syndrome, Well they had told us to start that the tests will take a while to come back (about 6 months)
We have been waiting waiting and no news.
When Cort was born the poor Neonatoligist was so worried as she has been trying to get us answers aswell and also for her own self as she has been very deeply affected by her passing as she was at Edens and had this need for all to be ok with Laine (if you understand which I am sure you all do)
Well she had tried lots before and while we were in the unit to get some more answers which she has not been able to get, she has been in contact with the coroners, with Cardioligists and some other people who I forget who they are.
Well... Today she was ale to tell me that the tests have only just been sent to Denmark to be run!
She was not too happy that it has taken so long but is glad as I am too that it has finialy been sent, But who knows how long till we get answers.
But Cort was tested for it and will be retested in 3 months and it looks ok to say he is not effected by it.

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Tue Jan 22, 2008 9:15 pm
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Pardon my ignorance but what is Long Q-T Syndrome?

Am glad that Cort isn't effected by it.

I hope you don't have to wait too long for some answers hun ((hugs))

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Wed Jan 23, 2008 11:07 am
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Long Q-T is a heart condition where there is basically a prolonged pause between the q and the t of the heart (that is as simple as I can put it but it is a lil more complicated than that)and more or less can cause a heart attack and instant o2 deprivation.
It is often picked up in people who faint heaps and a pace maker or beta blockers are put in place to prevent death from it.
It is a new test to tell after death that that was the problem, and Laines heart shows signs of arrithmea (so do not know how to spell that word...strange beats)

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Wed Jan 23, 2008 2:55 pm
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so will you have to wait ages for Corts results to come back like Laine's or will they put a rush on them?

it is also soo cool that you have a dr who knows your history and is onto it in regards to Cort's care.

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Wed Jan 23, 2008 3:11 pm
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Carley, I have just come here to update but saw you last post, Poor Maisie (pead) knows our history so well cause she was the Dr who was called to Eden's resuss, was Laines pead and is Corts one too.


Ok

So on Tuesday I took Cort to see Maisie and she had results back from Denmark (very odd to know part of my lil girl is on the other side of the world)
Well of the 6 genes that they can test for they have all come back clear of LQTS but it says that that does not mean it was not the cause as there are many more genes that they can not test for yet that are involved in it, They also go on to say that there is a chance that another cardiac problem may be the cause and have adviced that we (Ian, Kita, Cort and I) undergo further genetic testing to rule out other heart conditions.

Cause of everything else going on right now which I will update in general I have decided I would rather let it rest for a while as we have more important things to deal with right now, well not more important but stuff that we need to deal with now not later.

So for now and the final death cert can now be issued, Laine passed away from SIDS.

They have asked to keep the samples they have to use as further genetic testing becomes avaiable

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Thu Aug 28, 2008 1:38 pm
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I'm glad you finally have some closure Lisa, it has been a long time coming :bighug: :bighug: :bighug:

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Thu Aug 28, 2008 2:46 pm
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Ditto to Queenbee. Nice to have alittle closure.
Hugs hun

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Fri Aug 29, 2008 11:19 pm
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Lisa it is so good that you now have some answers to your questions, and I can totally understand you prioritsing your commitments at the moment.

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Sat Aug 30, 2008 11:30 am
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