Congratulations !!!

[Guest guest]

;

I am so happy for you and your news! What a blessing.

I am also happy that you were able to re-assure and give Frishta some

advice.

Keep us posted .

Hugs,

~guin

Hi "frishtafarmand",

I'm so sorry that you must go through this with your

precious baby! On a bright note, at least you were made aware of this

condition in your son prior to something awful happening!

I was diagnosed with LQT1 in 2006 at the age of 24 after

two fainting spells. I was then given an ICD/pacemaker. My ICD had a

fractured lead in October, 08 and was then shut off. The pacemaker

portion still works. I have since seen the most amazing doctor at the

Mayo Clinic in Rochester, MN. He is a LQT specialist and he suggested

that I do some genetic testing. Because I did this, I no longer need

the ICD. There are different types of LQT and each one has different

options of treatment. My treatment is 40 MG of Nadolol daily. Also in

Feb, 09 I had Left cardiac sympathetic denervation surgery. This was

my choice because I didn't want to take a higher dose of the beta

blocker (Nadolol) that I was prescribed.

Of course, if I really wanted the ICD I could have the

lead fixed.

I am now 4 1/2 months pregnant and my child has a 50%

chance of inheriting LQT from me. I of course hope this doesn't happen

but know my child will be in good hands.

Best of luck to you and I wish you well on your journey

with your baby! If you have any questions about the genetic testing or

the doctor at the Mayo Clinic, don't hesitate to ask.

Thanks!

in Mpls, MN

From: frishtafarmand <frishtafarmand >

Subject: ICD for a 6 Month Old

Date: Monday, August 10, 2009, 4:31 PM

My 6 month old son has Long QT which is a disruption of

the heart's natural rhythm. He will be undergoing surgery to have an

ICD implanted on August 24th. I was just wondering if anyone else has a

baby with a pacemaker or defibrillator and what are your experiences as

I am very scared?

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