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. 

almost home.

our trip back to the island was a bit spread out. it was exhausting but so worth it. we changed our plans last minute and ended up in Portland for a day. this gave us a chance to venture around our old stomping grounds and even have lunch with the ever so darling caryn. we also visited wes' old office and drove through our old neighborhood. it was a very nostalgic experience. we really enjoyed our time living in vancouver. a lot. and it was great to see so many friendly faces.

the captain on southwest had the flight attendant bring coen a Shirley Temple. she told him that the captain said, "that a captain always buys another captain a drink."

 

we spent the night with mike, shanny, and norah and it was just so fun. little norah was very unsure of all our chaos. 

then we headed to honolulu for an overnight. coen needed to see the pediatric cardiologist, so we scheduled his appointment on our was back. it was also the perfect reason to camp out at aunty mary and uncle deans house. always good coffee and company.

the dr appointment went very well. we really like the specialist and coen likes him too. what was interesting about this visit is that the dr said that it is very likely that coen has had episodes of wpw since he was an infant, and that now is kind of the "vacation" period. he is not likely to experience episodes over the next few years. when he gets a bit older we plan to have the procedure to fix the wpw. but thankfully that's still a ways off.

we managed to fit some fun into our short visit with a trip to the aquarium and the lego store. man i wish i had invented legos. and aquariums for that matter.

wolff parkinson white syndrome

early in march coen was telling me that his heart was bumping really fast. of course i thought it was nothing, or maybe that he was having a little anxiety, but he was persistent. he wanted to go to the dr,  so i complied. his heart sounded good at the pediatrician, but she sent us on for an ekg and by golly, the kid was right. he has a condition called wolff parkinson white or WPW.

 

 

let me (or rather, the mayo clinic) explain:

 

Wolff-Parkinson-White syndrome, or WPW syndrome, is the presence of an extra, abnormal electrical pathway in the heart that leads to periods of a very fast heartbeat (tachycardia).

 

so now what? well, coen seems very relieved that we are all tuned into him. i am sure these episodes were very scary for him, but now that we all know what it is, he is coping much better. he had to wear a 24 holter monitor a couple weeks ago, and he thought it was so super cool. we now have an event monitor that we carry with us to record the episodes as they happen. this afternoon he is having a echocardiogram, and tomorrow morning he and i are flying to oahu to meet with a pediatric cardiologist that comes over from san diego every couple months. we will know so much more after talking to him. 

 

i can't even begin to tell you how proud we are of coen for being tuned into his body and able to tell us that something wasn't right. not to mention, i am so glad we responded to him. listen to your kids, they may be pulling you leg most of the time, but you never know.