A child with WPW anyone??

Christy - posted on 01/14/2009 ( 14 moms have responded )

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My son has WPW. It was discovered in utero but not diagnosed until the day he was born. We've had a wild ride with episodes of SVT and trips to the ER to convert his heart to a normal sinus rhythm. Home remedies for converting his heart rarely work him. We check is heart rate 2 times per day, but often I can tell if he's in SVT by his mannerisms. Travis is now 2 1/2 and a very happy little boy. You'd never know he's been tormented so much. He'll have surgery when he is 5, but until then he is on Atenolol. Can anyone relate to our experiences.

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Jennifer - posted on 05/24/2013

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I realize this is an old post but I have some questions if any of you are still around. My daughter had her tonsils out in January and the dr noticed her EKG was not normal and informed me. We went to a cardiologist and found out she has WPW. I wish I could go back and ask all the questions in my head right now. It feels like a waiting game as she as never had a known issue and she may never. I have informed teachers and other family members about it in case something happens when I am not there. She turned four right after we found out so she really has no clue what is happening other then her heart does not work right.
What did you do during an episode of SVT? We were told not to call 911 and it should pass. But I am so nervous about it.
Also have any of your kids blacked out or fainted? How did you respond? How long did it last?
When I had my 20 week ultra sound they had found she had an arrhythmia, I had and ECHO done at 27 weeks and she was okay. Said that they are common and usually nothing. After she was born she had an EKG that came back fine. When she was three weeks old she had RSV and was admitted to the hospital and was hooked to a heart monitor no one said anything. I feel like so many chances and so much was missed.

Carrie - posted on 01/24/2009

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I was diagnosed with WPW when I was 17 years old. I played basketball and was a cheerleader and never experienced any problems until the end of my senior year in high school. I felt like I was having an asthma attack and couldn't breath. My mom thought that maybe it was just asthma and said if it happened again then she would take me to the doctor. I was walking out of the local mall and it started again and I felt like my chest was going to explode. When my mom took me to the doctor the ran the tests and the premature heart beat was almost missed, but one doctor who was diagnosed with WPW caught it and recommeded me to a cardiologist. That doctor put me on medication and they made me where a monitor to record when I had an episode. They then set me up with a doctor in Spokan, WA for a heart ablation. They said that the passage was very close to the valve and the risk was that they might have to put in a pace maker. Well all went well and they ablated the hole shut. All is still well to this day. The procedure took place in August of 1992. I am now 34, almost 35 years old. At the time I was the youngest person to have a heart ablation done. Live life to the fullest and cherish every minute you have with you son. It will all work out. My prayers are with you and your family.

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Kristina - posted on 05/10/2014

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Yes my daughter Maya has WPW syndrome as well and she too is 2.5 and has had since Nov 2013

Angela - posted on 03/04/2014

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Our son was diagnosed with WPW at birth (quite a bumpy ride the first 2 months of his life). He has responded well to the Atenelol over the past year (takes it every 8 hours). Doctors are wanting to start weaning him off of it now that he is a year old and has been episode free for a year. Has anyone else gone through the weaning off process? He has responded so well to the medication, I thought maybe we should keep him on it till he is old enough for the ablation; however, it would be nice for his little body to finally be medicine free for a change. Just wondering what others experiences had been. I appreciate your feedback, as our cardio appointment is end of the month and I don't know what to do. Thanks!

Kirsty - posted on 10/01/2013

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Yes similar story. My newborn has WPW SVT and was diagnosed in utero then emergency c section and flight to Children's Hospital in Vancouver from Nanaimo, BC Canada. 10 days in NICU. Several times to ER too since we;ve been home. Now 7 months and has had 2 normal ECG and he is being weaned off his Propanolol. Still on Digoxin twice a day. Possibility of ablation surgery in a few years. Extremely happy and easy going boy. He's my miracle after many years of trying for a baby.

Christy - posted on 06/23/2013

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First, yes, caffeine can definitely affect her heart rhythm and increase the risk of her going into SVT. Travis' heart was so sensitive that we even avoided him having too much chocolate!! Additionally, I hope they have warned you against using decongestants. They, too, can increase the likely-hood of SVT. They can abnormally increase the heart rhythm and cause the heart to slip into SVT. If our son had a cold, we depended mostly upon antihistamines [at night], saline, and humidifiers and breathe right strips. We didn't tell everyone b/c we didn't want to cause to much paranoia. His school definitely knew. He went into the nurse to have his heart rhythm checked in the middle of the day [and get his midday medication]. If he went overnight somewhere or a camp that lasted all day for multiple days, I would mention it; if he happened to say something about "his heart beating funny" to take it seriously and not simply dismiss it. They most important tools we found were awareness and communication--for HIM to recognize and be aware when his heart beat was not just fast, but "different". Then, for him to know that it needed to be communicated as soon as possible to the adult in charge (parent, teacher, etc.). Please, please feel free to ask any questions you have. I will do my best to answer from our personal experiences. He's doing so great since his ablation and are so grateful for the support we had that saw us through!!

Jennifer - posted on 05/29/2013

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Christy- thank you, her delta wave is short on every beat now. The dr said she did not know why it did not show earlier as it should of. She told me that my daughter can play sports which I as very glad to hear.
It is so uncommon I feel it is hard to find others that have gone through it. Her regular doctor really does not know much either.
Who do you tell about the WPW? As she gets older she is going more places without me and I worry when something happens for the first time she is going to be away from me.
We do not drink soda but I was wondering how would caffine affect her heart, could it send her into svt? Again as she gets older and goes to birthday parties there is a chance. She will see her cardiologist again in about a year, I just keep thinking of more questions.

Christy - posted on 05/28/2013

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Jennifer, it is definitely nerve-wracking when your child is in SVT and I can relate! There are many anomalies with WPW--the main one being that if the Delta wave in her heart rhythm is intermittent, a diagnosis of WPW can be difficult to catch if only periodic EKGs are done. It may not even have shown on the telemetry readings when she was on the monitor when she had RSV--the delta wave may or may not have even occurred. The more often the delta wave is present, the greater opportunity her heart has of going into SVT. If the delta wave is so rare in her heart rhythm, she has less of a chance of slipping into SVT. IF she does go into SVT, they are correct--you do not need to dial 911. First, note the time you detected the SVT rhythm (which can often be heard and felt EASILY by placing your ear to her chest). You can always attempt home remedies ("games") for conversion first: 1.) blowing hard through a coffee stirrer to move a "heavy" object or move a group of objects into a circle; 2.) "Superman"--while lying in her back, she pulls her knees into her chest. You then gently "sit back" on the bottoms of her feet. She takes a breath in and tries to launch you into the air. 3.) Last, you could have a "contest" to see who can hold a BIG breath of air in their lungs the longest. These are all ways to get your child to "bear down" and compress the heart muscle, which can convert it into sinus rhythm. If these methods do not work, also try having her drink a VERY cold glass of water. In the end, if her heart has still not converted, take her into the local ER or Children's ER and have them convert her heart. This is often done by an IV injection of adenosine. The hospital staff will likely jump on her treatment, skipping triage, and act quickly--do not let the alarm you. They move swiftly on all cardiac issues and do not often know as much about WPW. Being in SVT is uncomfortable and it always made my son feel fatigued, but the risk for long-term damage to the heart does not increase until after MANY hours in SVT (about 10-12 + hours). My son, in his 6 year history with WPW never passed out or came remotely close. As an infant we monitored him closely, as the delta wave was ALWAYS there. When it became intermittent at age 3, we checked him a couple times per day, but he became able to tell us that "his heart felt funny," as he had been taught to do. It can be controlled with low tier medications, if she even needs them. My son's WPW was very stubborn, so he continued them until ablation last summer. I hope you daughter has very infrequent SVT episodes or absolutely none at all!! You're right, it is scary as most unknowns are. I hope this information helps and your daughter lead a full and active life--she has every right to! =)

Heidi - posted on 05/07/2009

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My son was diagnosed with WPW at 3 1/2, He had the ablation at 4 and now he is 6. This week he had 2 episodes of his heart racing fast and him crying. Took him to the cardiologist and had an EKG & Stress test done which showed he was great. Now he has a cardiac event monitor for the next 30 days. He is very anxious and doesn't want me to go to work..Any Advice?? Dr is not sure what is wrong

Kirst - posted on 03/16/2009

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My daughter was diagnosed with SVT at age 4 1/2. She was put on Digoxin, but the SVT wasn't well controlled. When she was 5 she had the heart ablation procedure. It was very close to the v-node, but she was lucky and the doctor was able to get the pathway without any problems. She started kindergarten 2 days later. She was followed for a year and is not considered a heart patient any more. She is now 14 and barely remembers any of it. And as far as we can tell there have been no negative long term effects. She was seen at Rady Children's Hospital in San Diego. They were fantastic.

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Brooke passes away 9 months ago, April 12, 2008 she would have been 1 April 21, 2008 we buried her on that day.

Christy - posted on 01/22/2009

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Amy, 



I cried as I read your response.  My heart aches for you and for your family.  I can only empathize with your pain but I can assure you that God has written you on my heart and I will be praying for you.  I'm unaware of how long ago you lost your little angel, Brooke, but I know time cannot heal all wounds.  Sometimes, I feel a fear that we will miss one of Travis' SVT episodes and it will have tumultous results.  I just pray that God gives me discipline as his mother.  I have hope for his healing and will be anxiously awaiting the 5th birthday when we can, hopefully, put this behind us.  Thank you for your response, Amy.  God bless you and your precious family!!



-Christy Lindsey

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Our daughter was diagnosed hour after birth with Transposition of great arteries had open heart surgery at 6 days and had 6 SVT with WPW episodes in first week. She was on Propranolol and Flecanide. Brooke passed away 9 days before first birthday of a preventable death. Misdiagnosed at hospital had Bronchial pneumonia. Brooke was to have surgery at 4 yrs old to stop extra circuit in heart, SVT's.
Amy

Amy - posted on 01/16/2009

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Hello! I have a 9.5 yr. old with WPW. We didn't find it until over the Fourth of July this past year. He had had some Mountain Dew which we don't usually have and the caffeine triggered an episode of svt. He had three over that weekend, one that woke him in the middle of the night, but all stopped almost as fast as they had started so we weren't really sure if anything was going on or not, but went to the doctor on Monday to be safe. After several tests, he was diagnosed and started on Atenelol to control it since he was continuing to have svt's several times a week. We decided to do an ablation to correct it, but he is one of the 5% of people who's extra pathway is in a hard to reach area, it's too close to his hearts main electrical system, and his doctor tried hard to get it, but didn't want to damage the main system and have to do a pacemaker. SO, we are back on the meds and keeping a close eye on him and once he goes through a growth spurt, we will try it all again with the hope that as his heart enlarges, the two areas are further apart and they can get it. Your little guys sounds a bit more serious and scary! We were told that puberty can really intensify episodes, so that is always on our minds. We are lucky that so far the home remedies have worked for us for stopping the svt. Anyway, it's good to "meet" someone who's been there!!!

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