Monday, December 22, 2014

heart check

our sweet boy has a condition called Wolff Parkinson White Syndrome, (WPW). he almost diagnosed himself with it when he was 3 years old, and up till this school year we dealt with symptoms very rarely. but for some reason, coen has had a major increase in SVT (supraventricular tachycardia) since starting school. while the SVT is not life threating, it is very annoying and exhausting. his little heart will reach up to 190 beat per minute, and at times stay that high for 30-45 minutes. also up till now, we had to travel to Oahu to see his specialist. thankfully, in November the amazing Dr Bratincsak started a hilo clinc. this means that every 6 weeks we can see him right here on our island! hooray!

the highlights from our November heart check were:

1. the increase in episodes are likely related two things. the first is that children with wpw typically have a peak in episodes around 7-9 years old, so we may be seeing that peak a bit earlier. after the peak, things tend to quiet down and resurface again later in life. wpw in children is not life threatening, but in adults it is. this is why they plan to do an ablation procedure when he older. the second reason could be related simply to him growing. as the heart gets bigger, it is easier for the pathways to get confused, as they have more room to roam.

2. in the past we could stop his SVT within seconds by throwing him up into a handstand. but that stopped working the past few episodes, and the last episode he had lasted for 45 minutes before we were able to lower his heart rate. what we learned is that after 20 minutes it is going to be very unlikely that the SVT will stop on it's own. this is because we are fighting the increased adrenaline his body is producing in response to the high heart rate. since we have tested that 20 minute mark, and have seen an increase in difficulty to stop the SVT, Dr. B suggested that we have a one dose medication that we can give coen if an episode last longer that 20 minutes.

3. the episodes are totally and completely random. meaning that diet and other outside influences are not contributing to them. as a parent I wanted to link the increase to something that I could change. Dr. B said I would make myself crazy trying to find a connection. there just isn't one. we do know however that coen always has SVT early in the morning. this is due to cortisol levels being higher in the morning, and overall our heart rates are lower in the mornings. his heart takes advantage of the extra electrical pathway when his heart rate is lower, sneaking in that extra signal and then triggering the SVT.

we were so pleased with the appointment and are very thankfully to have such great care for coen. Dr B said that the way Coen handles all of this with such calm makes him think coen should be a pilot or a surgeon when he grows up. we agree.

snuggles with my boy after a 45 minute episode of SVT, are still snuggles. 

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