Breakthrough SVT Log...

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).


Starting to think...

the Amiodarone was doing a bit more good than bad for Miss K :o(.

We had yet another unexplained SVT episode last night.  It's always terrifying to pick Miss K up and be able to feel her heart practically beating out of her chest, I really doubt I'll ever get over the terrified Mom part of this!

We waited it out hoping that maybe, just maybe this once she might come out of it on her own but we didn't get any such luck :o(.  Her EP Cardiologist still does not want us letting her stay in it for more than 10-15 minutes at a time before breaking it using a Physical Maneuver.  I dreaded using the Ice last night so I tried blowing in her face, then hanging her upside down, when neither of these worked I told Daddy to get the bag of peas out.  But while Daddy was digging in the freezer I remembered another Maneuver the nurses had taught us, one I've never tried before because of Miss K's herniated umbilical, since that has healed I just forgot about this one.  This maneuver forces the person to "bear down", like they're trying to have a bowel movement or, in the case of a pregnant woman, like they're pushing a baby out during labor and delivery.  You gently tuck baby's knees in and then gently roll them up to their chest pushing gently, but firmly into their body.  Miss K went red in the face and cried out and then I released her, waited a second and listened to her heart and she was just fine!  I hope this one works the next time as well!

I'm getting nervous, Miss K is starting to have her breakthrough SVT more and more often and it's getting harder and harder to break :o(.  Hopefully we can stick to the Propanolol.  And hopefully we can make it 6 months before going back to the EP Cardiologist.  After last night I'm not setting my hopes too high though, we may end up scheduling an appointment within the next month or so if she keeps having more and more episodes.  And there is a possibility the EP Cardiologist might put her back on Amiodarone or he may suggest trying Flecainide, like we talked about a few months back.

We could sure use all the prayers we can get that Miss K will get out of this little "rut" and get back to being SVT free again, without help from more medications.


Miss K is 14 Months...

We had Miss K's 14 month Cardiology check up today.  It went great!

Her EP Cardiologist was concerned about her latest episodes.  Knowing Miss K was experiencing high fevers and missed 2 consecutive doses of Propanolol at the time she had 3 SVT episodes in one day made him feel a bit better, it's always good when we have a reasonable explanation as to WHY she was in SVT.  But the other two breakthrough SVT episodes she experienced, the one about a month ago and then Sunday's "fun" experience concerned him a bit.  He also isn't happy with the fact that nothing except the ice treatment is breaking the SVT, and that she has not ever converted back to normal rhythm on her own.  His first statement was "I don't want to put her back on the Amiodarone", to which I of course replied "NO!  We don't even want to think about that."  Upon discussion we decided Miss K really is just showing us that the Amiodarone is officially out of her system (click here)and that she has outgrown the dose of Propanolol she is currently on.  She has gained 2 pounds since the last dose adjustment so that makes perfect sense to all of us.

Miss K is now taking 3.2 ML Propanolol 3 times a day (up from 2.8 ML 3 times daily).  So much for hoping to get her down to twice a day instead :o(.  But the good news is the EP Cardiologist does not wish to see her again for 6 months, the longest stretch we have ever taken between visits!  This is a good sign :o), not to mention good for our budget lol.  Any concerns we may have in the next 6 months, or any new breakthrough episodes we feel need to be addressed can and will be done over the phone with him, as well as any dose adjustments.

My favorite part about this visit...the EP Cardiologists reaction when he first walked into the exam room :o).  Miss K was standing in the middle of the room with some toys and his eyes got big and a bit teary and he said "Oh my, is this really (Miss K)?  She has grown up so much!  She is getting big way too fast.  How old is she now?"  I told him she's 14 months, he replied "No way!  I just want to keep her little, I keep thinking of her as 9 or 10 months old, is she walking?!"  He was amazed when I told him she is indeed walking...and talking...and growing up way too fast.  He kept repeating that she was growing and changing way too fast for him and how sad it is that we can't just keep them tiny forever, he kept reminiscing about his first visits with her and how tiny and adorable she was, and of course he never failed to mention how adorable she still is ;o).  It's wonderful to have a Doctor who cares this much about his patients.

So much for our plans to take Miss K off the Propanolol in 6 months or so...Today the Cardiologist made it sound as though she may be on it for at least another year :o(.  This PJRT is really kicking Miss K's behind, They call it "persistent or Permanent" with good reason.


Breakthrough SVT...

...in Church!  Yesterday was not a very good day for us.

It's no fun dealing with SVT away from home but dealing with it away from home and in church is even less fun!  We weren't even in our own church ward (at home), we were visiting family for a baby blessing therefore attending church in Daddy's sisters ward, 2 hours from home.

The episode started about 10 minutes into the meeting, we have no idea what set it off all we know is when it started because she started screaming frantically for no apparent reason and I had to take her out into the hallway where she was pretty much inconsolable.  We decided to wait it out and see if she could convert on her own, seeing as we didn't have any ice bags to treat her (See Physical Maneuvers) and Daddy did try to blow in her face and then tried tipping her upside down out in the hall during the meeting and neither of these methods worked.  She was in SVT through the whole hour long meeting and not liking it, all her vitals stayed perfect but she cried and cried from pain :o(.

When the meeting was over we all headed over to Daddy's sisters house for a luncheon.  Daddy and I gave Miss K her afternoon dose of Propanolol in hopes that it might help break the SVT.  We waited 15 minutes, as long as we dared, but she was still in SVT.  So I broke down and asked my sister in law for a frozen bag of peas.  Daddy and I took Miss K into a quiet room away from everyone and sat down to do the ice treatment.  Miss K did pretty OK with it this time, it's so tough doing this to a baby that's old enough to get her feelings hurt over us doing something so mean :o(, she cries huge crocodile tears and is hard to calm afterwards :o(.  But it did break the SVT and she was great the rest of the afternoon.

I'm so glad she sees her EP Cardiologist tomorrow!  I have a huge feeling these past episodes have been a sign that the Amiodarone is truly out of her system now (click here), not a bad thing at all just that her body is now in a place where it needs to get used to working with just the Propanolol.  I think we may end up adjusting her Propanolol dose tomorrow to accommodate for the lack of Amiodarone as well as a bit of weight gain since her last dose adjustment.

I'll update again tomorrow!  Keep us in your prayers, we're hoping her EP Cardiologist doesn't think she needs to be on something new, or worse, back to the Amiodarone.