New to the group, new to matters of the heart

[RozyMama]

My 7 week old was just diagnosed with Wolff Parkinson White Syndrome.  It was very unexpected! Took him into the ER Monday night because his heart was racing and his color was bad, he really had us scared.  The triage nurse listened to his heart for about 3 seconds before hauling us off to the critical care trauma room, yelling for help on the way.  They had him hooked up within seconds and his hr was 256.  They covered his face in ice and it zapped him right out of it.  From there it was a whirlwind of IV attempts, bloodwork, X-rays, EKGs and an echo.  He had a few more brief SVT episodes on the telemetry monitor overnight so they started him on Atenolol.  EKG showed a delta wave so they gave the WPW diagnosis. 

He'll be on Atenolol until he's old enough for a catheter ablation unless he outgrows the SVT episodes.  I know there are far worse diagnoses and far more invasive treatments so I count my blessings.  But I can't help but feel scared, sad, totally lost. I'm not one to get all dramatic but this has shaken me up!

I'm here for support, friendship, and shared information.  I want to know I'm doing everything I can to keep him healthy and safe.  If you have a child with WPW, reccurrent SVT, or a child who takes Atenolol I'd love to hear your experiences.  Thanks and I look forward to getting to know all of you!

[Evana]

Oh my gosh!!!  My daughter has W-P-W too! I finally met someone with it. 

We had a much different experience. She has had 2 open hearts and other health problems. In Jan this year, I found Jaycee pale, lethargic and had a heart rate in 240s. We had a heart montor/O2 montior..otherwise I may not have noticed the heart rate. Shes 5 years old but nonverbal so couldn't tell us what was wrong. She was given 2 doses of a drug to pull her out of the episode. We weren't sure how long she had been in it. It was very scary...crash cart on stand by and everything!   i have been through a lot with Jaycee but that was very scary! You were/are right to be shaken up.  Jaycee's WPW was weird because of the age when it developed.

She was on captipril (a beta blocker) until her ablation was performed in May. They thought they got it but 1 month later...it showed back up on the follow up EKG. I'm told that only a small percentage need more than one ablation. And if it's going to return it almost always returns with the first few months after the ablation. She had another ablation in August and that one took care of the problem. We are actually going to the cardiologist next week to make sure everything is still ok.   Feel free to message me if you have a question.

[RozyMama]

Thank you Evana for sharing!  I am so sorry you had such a scare with her and she's had such a tough road, but I hope the second ablation was a success.  Did they find a second pathway, or did they just re-ablate the first pathway?

[Evana]

They re-ablated the first pathway. When is your baby able to get an ablation done?

[RozyMama]

I'm not sure yet.  It sounded like they wanted to wait a few years.  :-\  I obviously don't want it done before it's safe, but I hate the idea of him being dependent on medication when there's a relatively simple procedure that could fix this.