Just Looking for Other Mom's of Children with SVT

LaCee - posted on 03/29/2012 ( 3 moms have responded )

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My daughter is 7 months old, she was born full term via emergency c-section with an accelerated heart rate of 280 bpm. At 3 weeks old she was diagnosed with PJRT and put on Amiodarone and Propanolol to control it. I have been searching for other mom's with SVT babies since she was born but have had no luck, most community posts I've found have been over a year old and nobody responds. I'm hoping to connect with others going through this to chat with!



My daughter has a blog you are more than welcome to visit for the complete story and constant updates: www.thestoryofababywithsvt.blogspot.com

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SHARON - posted on 03/31/2012

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my son had stv after his open heart surgery but now hes doing better bout it... his doctors gave him digoxin and propanolol until he was 1... now at 2 1/2 his heart rate goes up but nothing compared like when he was two wks old (350)... i though but day by day we get through it ;) if u need someone to talk to im here i know how it feels to be alone at this w/o anyone bein able to relate to...

Taibah - posted on 05/16/2012

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Hi there, my son is now 6 and has PJRT in the av node. It was diagnosed at 7 weeks of age after a full term pregnancy. However they did dispute his heart beat at birth, unfortunatly this was overlooked. He has been on numerous drugs and wasn't diagnosed with PJRT till he was 2..... They initally thought he had WPW but as none of the medication was controlling the svt's and with the apparent lack of a P wave on the ECG reading, this is what gave them the insight into diagnosing him correctly.

We have had a tough few years with visits to A & E very frequently. Infact I'm writing this at his bedside in hospital. When he was younger his episode were very fast at anything up to 320 but as he has got bigger the rate obviously has lowered. The issue we are facing ... Or have been facing is that his medicine (beta blocker- atenolol). Has been hiding the svt...... He has and is at a seemingly normal 120bpm so to check manually his bpm, you would assume he was fine, however when placed on a ECG there is no P wave present, therefore indicating an SVT!! He is also taking an anti arrhythmic drug called flecinide. We are due to have a radio frequency ablation on the 25th of may and he is coming off his meds on the 18th. Im so afraid.... Equally of taking him off his meds for the week prior as I am the proceedure. However I am aware that it needs doing ASAP as the meds are not as effective as they once were.
I'm told pjrt is a rare type of svt and here in the uk not many people are aware or understand the condition so it's nice to find another mum looking for pjrt mummy's posting in the last year ;-)
I'm glad to have found you! Xxx

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Ashley - posted on 08/06/2012

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We found out that our son had SVT the day we went for the unltrasound to find out his gender. I had to go on heart medication to control it so we wouldn't lose him before birth. It was very scary. He was transported into Boston a few hours after he was born, and did not come home until he was about a month old. He is three years old now, and still has not grown out of it. It is very scary to go through, and I have a lot of support. It's not the same when they don't fully understand what we are going through. It is always nice to talk to others going through the same thing. The doctors are now talking about surgery when he gets a little bit bigger. Feel free to contact me. I'm also on facebook. I'm happy to know I'm not alone in this situation.

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