I have a feeling there's going to be a lot more SVT in the near future. Rather than post and re-post about each and every one of them I'm just going to add them here as they happen, no worries I'll date them :o), this IS a journal for me as much as an update for all of you so keeping track is very important to me.
Friday, October 26:
Miss K had another SVT episode :o(. We have not missed any Propanolol doses and she has been getting the new dose of 3.2 mL 3 times a day for a little more than a week. The SVT was, yet again, unexplained :o(. We're not sure how long she was in it before I caught it, she had been spending the afternoon/evening with Daddy while I worked my day at the boutique. Daddy doesn't know how to tell when Miss K is in SVT and he never catches it on his own. I don't know how to explain how I know she's in SVT, she doesn't show any real physical signs that are for sure "I'm in SVT" signs. She just seems off to me, a bit out of sorts. And she is normally crying for no apparent reason, just wining and moping around carrying her blanket. She also does this when she just plain doesn't feel well but somehow my "mommy instincts" can pick out whether she is in SVT or not when acting like this. When I got home I could hear Miss K crying in her room while getting a diaper change, Daddy came out with her completely baffled and told me she was refusing to eat her dinner and that her diaper was clean and dry, he didn't know what was wrong. I took her from him and just knew to check her heart. She was in SVT and she actually sat still long enough for me to count it out, it was over 200 BPM. Luckily the physical maneuver that makes her bear down worked on the first try and then she was fine, tired but fine. This is turning into a once a week occurrence lately :o(.
Sunday, November 4:
Miss K had another SVT episode IN CHURCH! And this time I was paying attention and figured something out...temper tantrums can cause SVT! She was being insistent on playing with a Crayola marker but she only wanted to play with it, not color and she kept pulling the lid off and drawing on her pretty little dress so I took it away. She tried to throw a huge tantrum and got so worked up it just threw her into SVT. I knew she was in it when she went from near tantrum screaming to painful crying :o(. I carried her out into the Mother's room and checked to make sure I was correct in my thinking she was in SVT, once confirmed I did the "bear down" physical maneuver, it took 2 tries this time :o( I hope that's not a sign that it may stop working in the future :o(. She was fine the rest of church, other than being extremely tired because of the time change, in her mind it was nap time but we still had an hour left of meetings so she really gave us a hard time. Looking back on the last SVT in church episode I realized that it was the same situation as today when she went into SVT, she was upset over having something taken away and started to throw a huge tantrum when her screaming turned to cries of pain.
Friday, November 16:
Miss K has been taking 1.2 mL Digoxin twice a day with 3.2 mL Propanolol 3 times a day for 4 days now. Her EP Cardiologist told us if there was going to be any change in the frequency and duration of her SVT episodes we would notice within 3 days or so, a week at most. I don't think I'm going to call in tonight's SVT episode though. Miss K started running a low fever last night and woke up this morning with no change, it stayed around 99 degrees Fahrenheit all morning but this afternoon it went up to just over 100 :o(. Miss K is well known for having SVT with high fevers so I am attributing tonight's episode to that. She cried "that cry" as she went into it and then she was just fussy and a bit whiny, she wasn't doing anything to cause the SVT, it just happened out of nowhere. We let her stay in it for about 15-20 minutes before making her bear down to stop the SVT. Daddy got to try it this time without my help or instruction and was very pleased he was able to get her out of the SVT without me :o). I really hope this episode was truly caused by her fever. I know she shouldn't be having any at all, fever or not, but how can we think a high fever isn't going to cause SVT with a PJRT child when everyone's heart rate is quite a bit faster than normal when they are fevering? We're still on the lookout for more episodes though, we check her constantly throughout the day. I'm happy to say we made it over 2 weeks without SVT this time and with her running a fever it just makes it more believable that the new medication "cocktail" may actually be working.
Saturday, November 17:
I'm sitting at the Boutique, where I put in occasional shifts, when my phone rings...it's Daddy calling to tell me Miss K is running a fever again, about 102 degrees Fahrenheit :o(. We have no idea why she's running a fever these past two days, why is it kids do this on the weekends when they can't see their doctor? So anyway, he then continues to tell me that she went down for nap just after 1:00pm and he went in to get her up at 4:00pm, she didn't want to get up and was trying to go back to sleep so he checked her heart to find she was in SVT :o(. He doesn't know if she went into it before, during or waking up from her nap so we have no idea how long she was in SVT before he made her bear down to break the episode :o(. This makes me nervous. I'm still sure it's the fever causing the SVT, we DID have 3 episodes in one day the last time she had a fever so 1 episode every day that she's fevering isn't much of a surprise to me. But now I'm trying to remain calm as I try to decide if I need to call the EP Cardiologist on Monday and let him know what's going on. I know he'll want to know that she's having SVT but I don't know if he'll consider these episodes something to worry about or not since she's running a high fever. I just wish we knew WHY she's running a fever, teeth are always an option but I don't think that's very likely right now as she's already gotten all 4 new molars, I think she's done with teeth for at least a few months. Here's to praying I'm not back on here any time soon to report more :o(. Keep praying with us that we can keep her out of the hospital!
Thursday, November 22:
Yes, Thanksgiving day :o(. Actually it was in the evening. We were at my parents for the holiday. Miss K decided to throw a temper tantrum for her Grandma and it caused SVT. It was good timing in a sense, but also bad seeing as it's been less than 5 days since her last episode. So Grandma got to put her ear to Miss K's chest and hear what SVT sounds like in her, the first time in over a year since Grandma or Grandpa has heard her heart beating too fast. I also got to show Grandma and Grandpa how to help Miss K bear down and break the SVT episode. The next time I speak to the EP Cardiologist I'll ask him what he thinks about her temper tantrums causing SVT. It's not all the time, just certain tantrums she throws when she's extremely ticked off about something, this doesn't happen very often, actually so far it's only happened in church and now at Grandma's lol.
Tuesday, November 27:
Another one :o(. And we have no idea why. We also have no idea when she went into it. I have had a very busy and distracted day, one of those days where the kids do whatever they want and make a huge mess of the house and I don't even notice, as long as they are playing and happy and not bothering me or hurting anything. So sometime this morning during the chaos of the kids happily terrorizing the house and me being distracted with my work Miss K went into SVT. Daddy came home for lunch around 12:30, he wasn't home long when Miss K started wining and begging to be held, but still wining even while being held. We thought she was just hungry since she hadn't eaten much for breakfast and it had been 3 hours since then but when I'd ask her if she wanted to eat she'd just wine some more instead of signing "eat" like she usually does. I put my ear to her chest and heard the quick beats of SVT :o(. She came out of it instantly with the "bear down" physical maneuver. I'm concerned since it's only been 5 days since her last episode, they seem to be happening more and more frequently. Her EP cardiologist wasn't concerned the last time we spoke but I feel he just might be concerned if I called again...I'm not sure if we should wait a bit longer or if we should see if she just needs a dosing adjustment. I'll keep everyone updated on what we end up deciding. Until then hopefully I won't be back on this thread posting another episode anytime soon :o(.
Saturday, December 22:
We very nearly made it 1 month episode free! But this illness Miss K has ruined it for us. She did so well for the first 3 days but suddenly couldn't handle it any longer. This morning she had another SVT episode, her fever is pretty low, low enough to be nearly non-existent. Yesterday she started pulling on her ears and crying, I hoped it was not an ear infection, I was way too sick to really pay much attention to her behavior through the day and didn't get her in to see the Pediatrician :o(. This morning with the SVT episode and the tugging on her ears combined I decided she needed to be seen, ear infections tend to cause SVT with her as easily as a fever does. So as of right now Daddy has Miss K over at the After Hours Clinic getting her checked out. I hate that I am too sick to take her myself. I had to write a note listing everything Daddy needs to mention to the Doctor while there so that he doesn't forget anything important and so that she can be treated correctly for her situation. I only hope it all goes well! One of my biggest worries is that her heart rate is most likely a lot higher than they are used to seeing in a child her age so I told Daddy over and over as he went out the door that he needed to tell them that as long as her heart rate is below 200 BPM she is fine and does not need the Emergency Room, I hope they listen to him! I will update on what the Doctor says when Daddy and Miss K get back...
*Update: Daddy and Miss K came back with a prescription for Amoxicillin for Miss K. Her ears were quite a bit red, not enough for them to normally treat immediately but with Christmas in a few days they are treating her so that we don't end up in the Emergency Room with her in lots of ear pain. The doctor also told Daddy that Miss K is quite dehydrated :o(. We were doing well getting her to drink but, having this flu myself I know, water doesn't taste all that great so she is refusing it. I got pedialyte but she only drank half the container and got tired of that taste, we offered her gatorade and she didn't like it :o(. So after going to the doctor and finding she is indeed dehydrated we broke out the apple juice, we're watering it down so she's getting at least some water in her. Knowing she's dehydrated enough for a doctor to make note of it lets us know that's why she had SVT this morning, dehydration can cause it as well. So now our drug cocktail is a very long list daily for the next 10 days! Propanolol 3x a day, Digoxin 2x a day, Tamaflu 2x a day, Amoxicillin 2x a day, and Tylenolol and Ibuprophine as needed as well as Little Remedies Honey Cough Elixer as needed. Poor kid is stuck taking medications all day long! Though after a long afternoon nap and having started the Amoxicillin as soon as she got home she seems to be on the mend already :o).