The appointment went as I expected it to go. Everyone hopes I'll be updating with great news that Miss K's PJRT has magically disappeared and she is "over it", everyone hopes I'll be reporting that we've taken a huge step and decided to lower her medication doses or that we have talked about lowering doses or taking her off of the medications in the near future. I have to admit I really, really wish I could be telling you these wonderful things in my update.
The truth is, Miss K has not outgrown her PJRT and is not going to do so, at all, ever. Dr. P has been very optimistic in the past, he has given us hope that we could at least "talk" about changing her medications to lower or fewer doses in upcoming appointments but today he did not give us this hopeful news. Dr. P was very down to earth and honest today. He is still seeing Miss K's PJRT on her EKG's, this does not mean she is having SVT episodes, the existence of PJRT is not solely based on having episodes, it is also based on the P-waves on the EKG, and Miss K's P-waves show that she does indeed still have PJRT, that without her medications she would be having persistent SVT episodes without a doubt.
Since I made the hour and a half drive to her appointment in a horrible rain storm through a dangerous canyon with all 3 kids in tow today I decided not to let the appointment end after a short 10-15 minutes. I took the time, knowing we were his last appointment for the day, and asked him questions that have come up over the past year, I got to ask him a few questions I never thought to ask before having it brought up on our PJRT facebook page or other SVT sites I am a part of. I learned a lot today!
If you go to THIS web page it explains SVT very well in great terms that anyone can understand, it also shows a diagram of a normal heart and where the "electrical" impulses come from and are supposed to go through (diagram is below), a friend found this site a few weeks ago and shared, I'm so grateful for my SVT friends! This web page got me wondering why I didn't know exactly what PJRT was in the heart so I asked Dr. P about it today :).
Dr. P says PJRT is Re-entry SVT, Accessory Pathway (explained on the site referred to above). When a person has PJRT it means the electrical impulse from the Sino-atrial node will follow a path down and around the Right Atrium, under the Right Ventrical and up to the Atrio-Ventricular node and into the Right Atrium, following the path on the diagram above, a normal heart's pathway will bring the signal quickly into the Atrium just as the Atrium contracts with the heart beat, a PJRT pathway will bring the signal very slowly into the Atrium missing the Atrium's contraction, or delaying the contraction, causing the heart to overreact, or panic, and thus setting off the SVT episode. The Propranolol and Digoxin do not change this pathway or the electrical impulses speed, the pathway and impulse will continue in the same slow manner until an ablation is done to correct it. Instead, the Propranolol and Digoxin only keep the heart from overreacting, they keep the heart rate at a steady, slower pace most of the time even though the impulse is slow to enter the atrium. This slow impulse is what is seen on an EKG, the time interval between the R wave and the following p wave is longer than the interval between the p wave and the R wave that follows it. Dr. P mentioned that a lot of the time children are only tentatively diagnosed with PJRT because they can't determine exactly what type of SVT they are seeing without an Intracardiac Electrophysiology Study done (EP Study), where they send a catheter into the heart to see how the electrical system is working and find out what/where the Accessory pathway is, but sometimes, in rare cases, they can see, without a doubt, that the child has PJRT because of the P wave on the EKG. Dr. P has always said he knew without a doubt Miss K has PJRT but I never asked how before now, today he confirmed that Miss K was a "for sure, no doubt" PJRT case based off what he saw on her first EKG because her P waves were VERY wide, among a few other factors that made it a definite case of PJRT.
Today the hammer dropped. Any of my hopes were dashed completely. Miss K will be kept on her medications until a Catheter Ablation is done. Every time she gains a kilogram in weight (2-3 pounds) we will, without a doubt, be upping her medication doses whether she is having breakthrough SVT or not, Dr. P does not want her having episodes at all, and he assured me that if we are slack with dose adjustments she WILL have breakthroughs. When she is 5 years old we will talk about ablation options. He said it will be up to us as to whether she has the ablation at age 5 or if we keep her on medications longer and wait a few more years, either way she WILL be having an ablation done. He is confident that, even if we can successfully pull all medications and see no breakthroughs, she will end up in the ER with a severe episode and be put back on medications or forced to do an ablation so his advice is to have the ablation done as early as possible so we can rest easy as she grows and not worry about a sudden breakthrough. I personally don't want to get a phone call from my teenage daughter, or her coach/teacher, during a sport she is involved in telling me she is on her way to the ER. I want her to be able to participate in sports without stressing about a possible SVT attack.
So there you have it. Miss K is ALWAYS going to be on medications for her PJRT, until a successful ablation is done.
The best part of this appointment is that Miss K was a champ the whole time :), not one tear, no crying, no screaming. She let the nurse put the EKG stickers on her and the wires without a peep, she did poke her lip out and I saw a slight quiver but no crying actually happened :). She played and interacted with Dr. P, who couldn't believe how much she has grown since last seeing him. She was also weighed today, I am so proud to say that Miss K is now 22 pounds! She has gained 2 pounds in 3 months, this is a huge deal with this tiny girl :).
