Hair Loss

About 7 or 8 months ago I remember reading a post by a SVT mom talking about hair loss being linked with the use of Propranolol.  I never thought much of it since Miss K wasn't having hair loss issues, I felt bad for her but didn't think to remember that post.

Fast forward about 4 months and you find me crying over a clump of Miss K's hair.  I was taking a hair band out of her hair, I'm always gentle about this and the hair band was a soft no-pull one, but on this night a chunk of Miss K's hair came out with it.  It was perfect, it looked as though I had taken a pair of scissors and cut the hair in a perfect square.  There I was holding a lock of precious, sweet hair.

Fast forward another 2 or 3 months and you find me constantly dealing with hand fulls of hair each time I comb Miss K's hair, no matter if it is soft and tangle free or completely riddled with tangles and knots, no matter if it is wet or dry, Miss K's hair is coming out in clumps.  She has a bald spot in the front that I thought was just genetics, except that there was hair there one day and then the next there wasn't, but I didn't really notice how fast it had gone nor did I really remember there being hair there at all, now looking back at pictures I see that there was hair there at one time and there's really no reason for her not to have hair there now.

I finally realized something was up.  I got on all the facebook support pages I follow and asked around about hair loss being connected with either Propranolol or Digoxin, or maybe even a delayed side effect from Amiodarone, a long shot I know but I have been desperate to find a reason for her hair loss.  Most of the mom's that answered had never heard of hair loss being connected to any of the three medications.  But a choice few had heard of a link and were willing to share.  Turns out I found the mom who mentioned hair loss and Propranolol months ago, she verified that her daughter had a hair loss problem off and on while taking the Propranolol, she couldn't tell why some months were better than others but she could confirm that her daughter's Cardiologist admitted that hair loss is a side effect of Propranolol, uncommon and not well known but still a side effect.  Another mom commented that her daughter's Cardiologist also mentioned hair loss as a side effect of Prorpanolol.  After reading these comments I dug through some more websites looking for this side effect to be noted somewhere and, amazingly, I finally found it, a site that has hair loss listed as uncommon and not well known but it is a side effect of Propranolol.

I will, of course, be asking our own EP Cardiologist and our Pediatrician, and maybe even our Pharmacist, just to make sure this is really what's going on with Miss K.  I will update when I can.  I am almost sure the Propranolol is the cause but I also know that low Iron and a lack of certain vitamins and minerals can cause hair loss as well and seeing that Miss K is not the greatest little eater these could certainly be part of the cause.

7 Months SVT Free with a Twist...

Yahooo!!! We have made it to 7 months SVT free!  Such a great feeling!  And she even experienced a 3-4 day stretch of high fever (ranging from 102-104 degrees) with no other symptoms and made it through SVT free :).

On a bad note:

Miss K suddenly started having some off days a few weeks ago, she is a very active child full of mischeif on any normal day but a few weeks back she started having days here and there where she's listless, extra tired, begging to be held and snuggled, and has a huge lack of energy.  I'm used to a little girl who never sits still, but lately she has had a lot of days of curling up on the couch with her blanket and begging for a movie, her eyes say a lot about how she feels and during these times of listlessness her eyes say she feels off in some way.

I always pull out the stethoscope and my phone (with my Cardiograph app on it) and check her heart rate during these down times, my first thought when this all started was that she was experiencing SVT, I was quite wrong.  Usually during these odd moments her heart rate was below her normal range but not in a bad way, I just thought it was slow because she hadn't been active, that is until a week ago when I checked her heart rate to find her beating in the mid to low 50's.  Anything below 80 worries me with her, and until now she's never really dipped below the mid 90's, so 50's was scary.  I called the Cardiology nurse and asked her how low of a heart rate was too low, I let her know Miss K was in the mid to low 50's at the moment and I was a bit concerned.  She didn't seem too concerned herself though, which calmed me quite a bit, my main reason for calling was to ask Miss K's EP Cardiologist if he thought I should bring her in to see him at the 6 month mark or if he thought she was fine and we could wait a whole year like I had origionally planned.  The nurse was baffled by this question, I guess the charts in front of her showed Dr. P still wanted to see her every 2 months and I was 2 months late on fulfilling that request (I'm almost positive she was looking at Miss K's 2011 charts rather than 2012 and 13 charts), she refused to believe me when I told her we were on a 6 month schedule now and that I was given the OK to wait a year if I felt good about it.  I ended up hanging up with her strict instructions to call scheduling and get Miss K in for an appointment NOW.  I then called scheduling and told them Miss K needed to see Dr. P ASAP, they looked at her charts before bringing up the calendar and then the confusion began.  In their notes Dr. P had asked that we come in every 6 months, just like I told the nurse, they didn't want to schedule Miss K to come in until September.  I told them the nurse asked that we be seen ASAP so they told me they would call Dr. P themselves and ask him what he perferred we do.  I waited all afternoon and into the next morning to hear back from them, instead of scheduling calling me back I got a personal phone call from Dr. P himself.  This always worries me, Dr. P only calls me personally when there is something concerning he needs to talk with me about (except when we have lab work done and he's reporting the results, which he always does personally).  He was a bit concerned about the low heart rate, though he was speaking with me directly because he wanted to know when the last time we refilled her medications was, he wondered if we had been issued a bad bottle of Digoxin.  This was a good possibility since her listless moments started soon after we refilled her medications last.  He ruled out Digoxin toxicity over the phone when he read her chart and realized she has been on the same dose since last October, but he wanted to be 100% sure this was not the case so he asked me to bring her in for an EKG the next day as he was worried that she may be having some Bradycardic spells.  And knowing children like he does he told me he'd order a Holter Monitor to send us home with because EKG's only show what's going on at that moment and if the child is healthy and fine, or throwing a tantrum, we won't see what the issue is in other situations.

Somehow this was the perfect time to be requested to head down to PCMC.  We were already headed down there the next day to bring Baby Brother in for his first Urology visit (more on that below) thus making it easy for us to leave just an hour earlier and pop in at the Cardiology clinic for a quick visit with Dr. P.  Miss K just happened to be having one of her off days on this day, a good thing for Dr. P to see.  Things went downhill the minute we entered the clinic though (not in a bad medical way I assure you).  Miss K was terrified of the room, terrified of the exam table, terrified of the nurse, and even more terrified of the EKG machine and its "stickers" and wires.  When we laid her on the table she started screaming, the nurse had quite the struggle getting the stickers placed on her chest and belly as Miss K kicked and screamed through it.  We tried everything from snuggling her to encouraging her to touch and hold a sticker herself to putting EKG stickers on her baby doll (this only resulted in more terrified screams as she was afraid of what the stickers would do to her baby).  Finally the nurse decided she was part of the problem and she left the room for a minute, apparently this wasn't a big enough part of the issue as Miss K continued to scream and kick and still refused to calm down enough for us to get a good reading.  The nurse came back with a stuffed lamb and a sucker in hopes of calming Miss K down with bribery, it didn't work she refused both very adamantly.  I offered her snacks from the diaper bag but was also turned down, and she screamed harder when we got the bubbles out and blew a few for her.  We finally gave up and took what we could get, her heart rate was ranging from 120's to 140's during this tantrum.  Dr. P came in soon after the nurse printed a reading from the EKG machine and assured us he could not see any sign of Digoxin toxicity.  He felt she is probably fine and that maybe I was off with my counting of her heart rate or it was just some fluke that was nothing to worry about, he admitted though that maybe she has outgrown the PJRT just enough (but not completely) to maybe not need so much medication so we talked about lowering her dose on one or both the Propanolol and Digoxin after further evaluation.  But to ease my mind and to really be sure himself he still sent us home with a Holter Monitor fitted to Miss K.  She was not happy about that machine either, she screamed and kicked right out of my arms while the nurse was trying to get it all set up.  Somehow she forgot about it very quickly though and amazingly never really touched it through the 24 hours she had to wear it.

I sent the Holter Monitor back yesterday.  I have no idea how soon we'll hear from Dr. P with the results, Tomorrow is our state holiday (Pioneer Day) so unless UPS gets the packaged delivered today and Dr. P somehow gets a chance to read it today I will most likely not hear back from him until Thursday or Friday, this poses as a sort of problem though because we will be out of town camping up a canyon and won't have cell phone service so all I can do is hope he calls today or doesn't call us until next Monday.  I will keep you all updated with the results.

I promised an explanation about Baby Brother seeing Urology:

I mentioned in previous posts about Baby Brother being born with Hypospadias.  Our Pediatrician told us not to pursue it until he was nearly a year old because PCMC wouldn't let anyone do any surgery on a child younger than 12 months (unless it's life saving, of course).  I decided to go against him and called and made an appointment with Urology months ago, I knew it would be a long wait to get in and figured we should get the ball rolling now rather than later.  This past Friday was our clinic visit to see what the Urologist had to say about the matter.  We absolutely loved the guy, he was old and funny and full of information.  Turns out he much prefers to do the surgery at around 6 months old, and it's a mild, non invasive surgery so PCMC lets him do so.  We barely spoke with him 10 minutes when he was ushering us to his surgery nurse to schedule Baby Brother for his very first (and hopefully last) surgery.  He will be going in to have his Hypospadias corrected on September 6th.  To say I'm nervous would be an understatement.  I'm terrified of handing my baby over to be put under anesthesia and cut on.  The next 6 weeks are going to be nerve wracking for me, I'm going to have to try to stay busy to keep from thinking about it.

Interesting...

I recently got a bit curious about a certain possible side effect of either Propanolol or Digoxin in children.  Miss K is such a very tiny little girl, she has only gained 2 pounds in 10 months and is a bit on the short side.  I haven't been too bothered by this until recently since she was 15 months and weighed roughly 18 pounds and now, 3 months later, she is still sitting around 18 pounds I realized she was around that same weight at 12 months as well.  Seems a bit off to me.  Neither of her doctors have mentioned any concern about weight though.  So I tried looking up any possibilities of stunted growth while on either or both Propanolol and Digoxin.  I came up with nothing so far.  But I have asked other SVT momma's if they've noticed lack of growth in their children who are on these same medications, I'm waiting on answers and it may take a while.  But while researching tonight I came across something interesting that I have not found before.  I was on www.kidshealth.org reading about Propanolol when I came across this note:

Limit your child's use of caffeine and chocolate. Use with this drug (Propanolol) may cause nervousness, shakiness, and a fast heartbeat. **click here**


Well!  No wonder Miss K has episodes of SVT when she eats chocolate!  We have always just attributed it to the PJRT itself but never thought about it being because of one of her medications!  So mixing chocolate (or caffeine) with Propanolol can cause a fast heart rate.  That's just great, as if chocolate and caffeine naturally causing fast heart rate on it's own isn't enough we now have to worry about the medication aiding in this fast heart rate from chocolate lol.

So for those of you who read this and have a child using Propanolol be aware!  And for those of you who read this who are family or friends of ours please remember this and don't give Miss K chocolate or caffeine without asking us first!

HaPpY DaNcE!!!!

Miss K had a hard weekend.  She had a high fever for 3 days and was just miserable but had no other symptoms, we were clueless as to what she was fighting.  And as always, the fever caused SVT...twice.  We made it 2 weeks without SVT and we were so happy!  And then it ended with 2 episodes in 2 days caused by a fever.  I wasn't worried, didn't think I'd even count these episodes and certainly didn't plan on calling the EP Cardiologist to tell him about them.  But Saturday night Miss K had a suspicious lump appear on her leg, where she had recently gotten a vaccination shot.  I wasn't sure if it was her Chicken Pox Vaccine or the MMR Vaccine but seeing this made me quite sure that was the source of her fever for whatever reason.  We waited and watched Miss K through Saturday night and all day Sunday.  She happened to wake up Sunday morning fever free and feeling great!  But the lump was still there, bright red and suspicious looking.  Monday was much the same as Sunday but I decided to call her Pediatrician anyway, they got us in to see the physicians assistant early in the morning.  The PA was a bit concerned about the lump and the fever but when I told her about the SVT she grew the most concerned and opted to go chat with our pediatrician about what to do.  It turns out the fever and the red lump on Miss K's leg were related, it was a perfectly normal reaction to the MMR Vaccine and nothing to worry about.  But the pediatrician was very concerned about the SVT episodes.  He said that clearly the Digoxin was not working and that this weekend was a good trial run to let us know sooner, rather than later, that Miss K needed to be back on the Amiodarone ASAP before she caught a nasty virus.  Apparently there are a few really nasty cold and flu viruses going around town and he's seen way too many cases with extremely high fevers and horrible symptoms.  He was worried about Miss K dealing with actual symptoms of a virus as well as a fever and SVT on top of it all and predicted finding her hospitalized because of complications.  He ordered me to call the EP Cardiologist that day and tell him about our weekend.

So I worried.  And I called the EP Cardiologist as soon as we got home.  I also cried and stressed.  I was certain Miss K would be fine and that SVT with a fever was just her normal.  Something we can't control. Period.  But the pediatricians reaction had me doubting my instincts.

It took 2 days for the EP Cardiologist to get back with me.  He finally called me himself thank heavens.  His reaction:  Miss K is fine.  The Digoxin is working in his opinion, it's a great sign that we made it 2 weeks SVT free after such a long stretch of weekly SVT episodes.  The fever induced SVT means nothing to him.  He said it's to be expected with a PJRT child.  He did not need to be reminded that while on the Amiodarone Miss K was having SVT with fevers.  He feels that no matter what medication we have her on she will still have SVT with a fever and it's not something we can control at all.  He did mention that putting her on the Amiodarone would help to better control the SVT but he doesn't feel it's necessary, the risks of being on it far outweigh the risks of not being on it.

I cannot even begin to describe my feelings while I spoke to this wonderful man!  I instantly teared up hearing that he knew Miss K was fine.  It was such a relief to be told Miss K will not be hospitalized any time soon and that the Digoxin is more than likely working just fine.

I admit...I did a happy dance...a rather embarrassing happy dance ;o).  I'm glad I was all alone to have my moment of celebration so as to avoid being laughed lol :o).

Here's to a long weekend with family and feasting, worry free!  I hope everyone has a wonderful Thanksgiving full of family, friends and happiness!

1 Month...

...since Miss K was taken off of the Amiodarone and...

She has done unbelievably awesome!

Just a few short weeks after taking her off the medication we noticed some things different in her behavior and health, good things :o):

She is WAY less constipated (see Side Effects).  The poor thing has been so constipated since getting the Amiodarone and Propanolol into her system.  We finally had to resort to giving her Miralax for relief when the Prunes and Applesauce quit working :o(.  But within a few weeks of being off the Amiodarone she started having more regular bowl movements.  They are still not as soft as they should be for her age but they are not as hard and definitely not as painful as they used to be.  We have been able to cut the Miralax down to as needed instead of daily :o).

She is less sleepy!  It was so hard for her to transition from 2 naps a day to just 1 but we had to do it because she just wasn't going to bed at a decent hour at night while taking 2 naps.  While on the Amiodarone she just wanted to sleep, a lot.  Since taking her off of it she has been just fine with taking only 1 nap daily and going to sleep at a great hour for bed time :o).

She has been so much happier through the day, very hard to believe for this baby since she has ALWAYS been the happiest baby around but she has gotten HAPPIER.  We've had less crying and tantrums than before, and I completely attribute this to no longer being as tired as she used to be.

Within a week of being off the Amiodarone I did notice her heart rate went up.  She used to be in the steady 90's when resting/sleeping and around 105 BPM when active but after taking her off the Amiodarone her heart rate went to around 107 BPM resting/sleeping and around 110-115 when active.  And when she'd get upset/worked up while on the Amiodarone her heart rate always stayed around 105 BPM, now when she gets upset/worked up her heart beats quite a bit faster at around 125 BPM but this is FAR from being SVT in any way so I have not worried, it's actually more normal for a baby/child to have a higher heart rate while upset.  At first I worried but then I remembered something important from the beginning of our journey with Miss K...her EP Cardiologist was never truly satisfied with Miss K's heart rate before, he was a bit concerned about how slow it was and confided in us that it was either the Amiodarone or a combination of both medications that was making her heart rate so low.  Her QT Intervals were a bit long as well.  Since we haven't had an EKG since taking her off of the Amiodarone we don't know how her QT Intervals are now but it actually seems reassuring that her heart rate is faster now.  I feel her EP Cardiologist is going to be happy with how her heart is doing without the Amiodarone.

And of course having one less medication to give in the day is so much easier on all of us!  The fact that it is the most dangerous medication that she is no longer taking makes us even more happy about all of this :o).

We have an appointment to see her EP Cardiologist near the end of October.  It was supposed to be scheduled 1 month after her last one in August but they only had 2 appointment availabilities when I called, one in September and one in October, the October one just seemed more appropriate.  I wanted her to be off the Amiodarone long enough to show real results when we went back in and this will be the case going in 2 1/2 months after stopping it.  We are excited to see what the EP Cardiologist has to say.

Miss K is 1 Year Old!

I can't believe how fast time has flown.  My teeny, tiny 5 pound 12 ounce baby girl is now a chubby 17 pound 4 ounce one year old :o(, I love to watch her grow and change but I also just want her to stay little forever.  We feel so blessed for all the prayers we have had answered and all the love and support we have had from Miss K's very beginning.

In the past year we have dealt with a lot starting with Miss K's heart condition, her 4 days in NICU after birth, her 3 weeks in PCMC after her release from NICU, seizures, herniated umbilical, monthly and every other month Cardiology appointments, constant and painful blood draws, medication 4 times daily, Thrush, Yeast Infections, Eczema, constant constipation from her medications among many other minor side effects (see also Amiodarone Side Effects), and more.  But we made it through it all!  Through everything Miss K has always been happy and smiling, nothing can get her down!  She is our light, she brings so much happiness and love into our home.

So onto her Cardiology check up today :o).  Miss K's EP Cardiologist was impressed with her today, and he is happy with her progress.  He asked me if it was OK if we stopped giving her the Amiodarone, of course I responded with a resounding "YES!" and he laughed and told me to stop giving it to her.  We are supposed to keep what is left just in case but she does not need to take it anymore.  It will take at least a month for it to run out of her system completely and could take up to 2 weeks before we will truly know if she is done with it.  He says that occasional SVT episodes while off the Amiodarone, as long as they are short and she is coming out of them mostly on her own, are a good thing.  It will teach her heart that it doesn't need the Amiodarone anymore and hopefully help it to not depend on it anymore if it needs that help.  And NO BLOOD DRAW today (see Side Effects)!!!  We were so happy to just leave the exam room and be gone instead of heading down to the dreaded lab :o).

The EP Cardiologist also talked about taking her off of the Propanolol sometime in the next 6 months O_O.  He smiled and told me he completely understood when I told him "I'm more than fine with taking her off of the Amiodarone, I know she'll do great, but the day you actually are serious about taking her off of the Propanolol I'm going to be scared to death and may try to talk you out of it."  He said the parents who's child was in SVT 30 minutes to a day tops and never deal with it again are always a lot more eager to get rid of the medications than the parents, like us, who had to go through weeks in the hospital trying to get their child to stay out of SVT for at least a few hours/days.  He told me he understood my fears of ending up right back where we started, which really isn't my fear, I know that if she isn't ready to be taken off the Propanolol we won't end up in the hospital I'll just be on the phone with him getting the OK to start giving it to her again and she'll be fine once it's back in her system.  It's the fear of her having SVT period that makes me hesitate, I really don't want her going into it at all and knowing that the Propanolol is what is keeping her out of it makes me very hesitant.  But it is exciting to hear him talk about trying to wean her in the next 6 months after having him tell us that she will not outgrow the PJRT and that she will end up taking the Propanolol until she can have the Catheter Ablation at 45-65 pounds.

We have some great parties planned to celebrate Miss K's first birthday :o).  She is going to feel quite spoiled.  Tomorrow she will officially be a year old and we will have a small cake with her grandparents from both sides and a few really great friends who adore her.  This coming weekend we will have a HUGE birthday bash to really celebrate her birthday, and her big brother's who's birthday is in a mere 2 weeks, this party will be with my whole family.  And in 2 weeks we will have another HUGE birthday bash with Daddy's family to celebrate both Miss K's first birthday and her big brother's 3rd birthday yet again :o).

Just a little look back on how far we have come with Miss K:

August 8, 2011.  Just mere minutes after birth.  Those purple little feet and hands make me so sad.

About an hour after birth once they figured out why her coloring was off, now she's nice and pink though looking sad with all that stuff on her :o(.

Almost 24 hours old, still nice and pink and doing well :o).

6 days old and day 2 at home and doing great!

7 days old, hours after being admitted to PCMC.

One of the first days in PICU at PCMC.

PICU

Home?  You mean this isn't home?  And I get to see this place called "home" tonight?!?

Day 4 home from PCMC and nearly 1 month old.

2 months old.

3 months

Always smiling at 4 months

5 months, it's amazing how most of the time blogger will turn my photos for me but then just once it doesn't and I can't fix it.

6 months

7 months, her famous cheesy toothless grin.

8 months, one of my favorite smiles :o).

Our sweet 9 month old

Quite an energetic 10 month old

11 months, nearly 12 months.  Sorry, the pics end here since August has barely begun and all my photos are on the camera and not accessible right now.

Miss K's Eye Appointment

Miss K saw the Ophthalmologist for a follow up today.  It was a short and sweet visit thank heavens, especially after our horrible start to the afternoon.

I am ashamed to admit I had a "worst mom of the year" moment today :o(.  When getting out of the truck to head inside Primary Children's Medical Center for Miss K's eye appointment I somehow hit the "lock" button on my keys and left them on the seat, I was looking for my sling to carry her in and in my frustration of not being able to find it I shut the door her seat is next to and went around to open the other door only to find that it was locked, and so were the rest of the doors :o(.  Miss K was still inside buckled in her carseat and the keys were on the back seat next to her :o(.  I called Daddy in a panic asking him what I should do.  He had me try to open the back sliding window but it was latched shut and I was not strong enough to force it open, I got in the tool box and found a screwdriver to try forcing the window open but still couldn't get it.  We also have a slim jim in the tool box for such occasions but I have no idea how to use it so I wasn't willing to take more time working on getting in there on my own.  It was about 110 degrees outside and I could see Miss K was already getting flushed from the heat :o(.  I was parked on the far side of the building and it was quite the run, as fast as I could go, into the hospital to the security desk.  When I got inside I told the security lady that I had locked my baby and my keys in the truck, she didn't even hesitate as she got on her radio and yelled "there's a baby locked in a truck outside, get your slim jim and get your butts out there NOW!"  I told her I was sorry but I couldn't wait inside so I described our truck and where I was parked and ran back outside as fast as I could so I could watch Miss K from the windows and keep an eye on her.  I waited for about 3 minutes (though it seemed like FOREVER)  and the 3 security guards, including the lady from the desk, came running to our rescue.  It took them less than 1 minute to get the doors unlocked for me.  I was so grateful, the tears I held back through it all almost fell at my relief.  Luckily Miss K was only in that hot truck about 10 minutes before we got her out and she didn't start to panic and cry until just before security arrived to help, of course she was extremely happy to be rescued and turned out to be just fine, a bit red in the face from heat but otherwise fine.

Now on to the rest of the afternoon.  As soon as Miss K was rescued we ran in to her eye appointment.  The 1-2 hour appointment that I had anticipated turned into less than 30 minutes as they got Miss K back almost immediately and chose not to dilate her eyes since they had done that last time.  The Doctor was impressed with her yet again and reports that she is doing great and here eyes look perfect :o).  He doesn't wish to see her again unless taking her off the Amiodarone doesn't work and she ends up back on it.  I, of course, reassured him that this wouldn't happen and told him that as much as we liked and appreciated him we would be glad to not ever be back :o), he agreed.  (See Side Effects)

Then we had to head to the Pharmacy to pick up Miss K's medications.  Amazingly there was not a wait there either.  The pharmacist was still not able to explain why we're only getting 28 days out of a 30 day supply, they are baffled and couldn't tell me anything other than "hopefully this time it will stretch to 30 days like it should."  I'm not happy with them but there's really nothing I can do about it.  We left the pharmacy to sit in the hallway and give Miss K her Amiodarone since she hadn't had it in 2 1/2 days and I was instructed by her EP Cardiologist to get her dosed ASAP today when I picked up the medication.

I was amazed to be back home so quickly, we left home at 2:00pm and arrived back into town at 4:30pm.  It was a great thing though since I am still shaken up about locking Miss K in the truck in the heat :o(.

Miss K is 10 Months!

I can't believe our baby girl is turning 10 months this weekend!  Time sure flies, I just wish we could freeze them in time, or command them to stay the way they are forever and have them obey lol!

Miss K is a beautiful, always happy, always smiley, little flirt of a girl and we absolutely adore her for it.

We had her 10 month Cardiology check up today and it went VERY well.  She weighs 16.4 pounds with a cloth diaper on, so probably 16 pounds even.  I'm not happy about her lack of weight gain these past months but nobody else seems bothered by it so I guess she's fine.

Remember our missed Propanolol dose last month?  And her 4 SVT episodes in a short 2 week period?  Well, Miss K's EP Cardiologist was EXCITED to hear we had accidentally skipped a dose and that she had breakthrough SVT...say WHAT? yes I wrote that correct, he was excited!  I was quite shocked.  He was excited because it's really the only way to know if the Propanolol is doing it's job or not, also a great way to find out if it's the Amiodarone that's doing all the work instead.  He was very happy to hear that she experienced no less than 4 SVT episodes in the 2 weeks following the missed dose, this means the Propanolol IS doing it's job and that she IS 100% dependent on it and that the Amiodarone may not be needed at all.

We talked about our plan of action for the future.  Right now Miss K is taking 6 ML Amiodarone once daily, at one time this was a HUGE amount for her tiny little body but as of today it's now a very low dose.  They recommend 5mm Amiodarone per Kilo in weight, Miss K's 6ML dose is only 1mm per Kilo.  We will not be adjusting her Amiodarone dose, it's staying where it is.  Miss K's EP Cardiologist will be taking her off of the Amiodarone in August for sure, no question about it, he is dead set on this decision.  He has decided he absolutely does not want her to be on the Amiodarone for more than 1 year.  He is confidant we may start experiencing more SVT episodes monthly without it but as long as we can get her out of it ASAP and easily he is not concerned.  If Miss K's SVT episodes end up being more than we can handle then he wants to try putting her on Sotalol and Flecainide instead of Amiodarone, if this works then great but if not then he'll be putting her back on the Amiodarone.  Can you see me jumping up and down in celebration?  If not you should be able to hear me screaming with excitement because I am LOUD!

Because Miss K has not outgrown her PJRT and is most definitely having persistent episodes of SVT it is a positive thing that she WILL NOT outgrow her condition :o(.  2 months just isn't enough time for that and after 1 year it's not going to happen for sure.

The EP Cardiologist adjusted her Propanolol dose from 2ML to 2.8ML three times daily.

Miss K will be going back in to see the EP Cardiologist in August when he will take her off the Amiodarone.  She'll wear a Holter Monitor a month after that to see what her heart is doing without the Amiodarone and then we'll go from there.

Miss K got what may possibly be her last blood draw done today as well (See Side Effects).  The lab technician was great, she got the vein on the first try and the blood drawn before Miss K really got to cry.  It was smooth and easy and Miss K left with a bright green BandAid to match her green and yellow outfit she was wearing.  I'll update later after I hear the results from her EP Cardiologist.

Oh, and an update on my last post:
A day or two after I posted she popped out of her tired slump and became her happy little self again, actually a more happy and giggly little self than before.  I think she may have just been growing, or even more possibly fighting seasonal allergies.

Lots of great news today, it was a good day.  Among all of the great news I was happy to get to receive it alone with Miss K, we got lucky enough to get to leave Big Brother and all his distractions at home with his Auntie and Mommy was happy to have some quality alone time eating lunch out and going to the Dr. just Miss K and I :o).

Out of Sorts

This past week Miss K has been a bit out of sorts.  I know, I know if she were a perfectly healthy baby I would not worry in the slightest, I'd probably blame it on teeth or "just a stage" but with her PJRT I am bound to worry about EVERY little thing she does differently.

Miss K has been quite irritable.  She wants to be held almost 24/7, and wont even allow us to dare to leave the room without her no matter who is left in the room with her.  Now when she cries over something it very quickly escalates into frantic screaming and breath holding.  When she drops or looses a toy she's playing with she gets upset and almost inconsolable.  I could go on and on but I'd be here all day so I'll just stop there, you get the point she's constantly crying.

And she has been wanting to sleep more and more, to the point of just laying down where ever she is and just dozing off...very unusual for my sweet baby girl who insists on nursing and being cuddled and rocked in order to fall to sleep.  If she does make it to a normal sleep time she lasts maybe 5 minutes nursing before she's out like a light and I could drop her on her head in her crib and she wouldn't even notice, this coming from a baby who normally requires that I stand up ever so carefully without much noticeable movement and lay her down so gently she doesn't even feel the difference between her bed and my arms.  One morning this week she got up at her usual 8:30 time and nursed, but then fell asleep nursing and was out like a light again so I lay her back in her crib and left and she slept for another 45 minutes or so before she was up for the day, this is also not normal for her once she's up in the morning she's up for good until morning nap 2-3 hours later.

Getting her to sleep is the easy part, the only easy part in fact.  But once she's asleep I can't guarantee she'll stay that way for long, especially at night.  She has been waking at least twice in the night screaming frantically, Daddy or I have to dash into her room as quickly as our sleep befuddled brains will allow and pick her up before she gets too worked up and then we rock..and rock...and rock sometimes it takes 10 minutes and sometimes it takes 30 + minutes before she's out enough to be laid down again.  And naps are difficult as well.  She'll sleep maybe 30 minutes and wake up crying, she normally sleeps 2-3 hours each nap.  I know, this paragraph makes absolutely no sense after the last one about "wanting to sleep" right?  Go figure.  She is exhausted pretty much the whole time she is awake but doesn't sleep long when we put her down.

It has been a struggle getting her to eat her solid foods this week as well, a lot of gagging and choking on it, she acts as though it hurts to swallow or something.  I know you're probably thinking "well maybe you're feeding her something she just doesn't like", I can assure you this is not the case.  In trying to keep her happy I've only been offering her the foods she loves and gets excited about and she does get all excited about it at the first taste but then gags and chokes on the rest of it.

Last night topped everything though when out of the blue, seemingly for no reason at all, Miss K started screaming.  I was getting her stripped down for her bath and she got very upset.  Bath time is her most favorite time of the day...usually.  But last night she screamed through her bath, arching her back and kicking her feet and refusing to sit up at all.  Any time I tried to have her sit she'd arch her back and flip out, ending up laying on her back and screaming harder.  I struggled to get her bathed, lotioned and into her jammies as she flopped around like a fish on land and screamed at me.  It was so dramatic I was in tears myself and had started thinking we may end up taking her to the ER if we couldn't get her to calm down.  When she was ready for bed she finally quit screaming and just wanted to snuggle me, cuddling in closer than she ever has before.  I gave her some Tylenol and Gripe Water hoping one or the other, possibly both, would calm her for the night and help her sleep.  She woke up 2 hours later screaming and it took Daddy 30 minutes to get her back to sleep in her crib.  And then she was awake screaming at 6:45 this morning, 2 hours before she usually wakes up, it took me 10 minutes to get her to calm down enough to nurse.

My "mommy instincts" tell me something is wrong but I can't even begin to guess what that "something" is.  I'm SO relieved her next Cardiology appointment is only 5 days away.  I'm hoping they'll listen to me and check every possibility rather than give me the usual "ask your pediatrician" comment that I tend to get when I voice any concerns they feel may not be heart related.  There are so many possibilities with Miss K.  Her medications could be showing some side effects or she could be going in and out of SVT persistently without us knowing it, or it could be something completely un-heart related...I guess we'll find out soon, until then I'm going to hope she starts to act more normal and be more like her happy little self soon.

The Strange Life of Amiodarone

I think I really need to stop stalking the internet for information about SVT and medications...seriously, lately I'm finding more and more information that literally scares me to death.  My most recent finding is an article about Amiodarone.  I found it while trying to figure out what a skin rash caused by Amiodarone looks like.  As I've posted before Miss K has a chronic case of Eczema but a few weeks ago she had a breakout on her chin that turned into an infection.  After a visit to the Pediatrician I was not too concerned about it, especially after it cleared up within days with an antibiotic cream and Hydrocortizone.  This week she developed the same rash on her right elbow and it is now showing up on her left forearm and elbow as well.  I immediately started applying Hydrocortizone to the areas but it still has ended up looking like her chin did so I've started applying the antibiotic as well.  I'm not sure if I need to be concerned or not, I'm guessing it may be the sunscreen we are using that could be causing these rashes so I have stopped using it and switched to another and I hope it works.  Otherwise I am afraid she's starting to have a reaction to the Amiodarone, but in the back of my mind I can't help but think that the rash wouldn't go away with an antibiotic cream if that were the case, or would it????  So today I started researching again and found this article, there wasn't anything helpful about skin rashes but it was enough to terrify me about other side effects, seriously what am I giving my poor little girl?

Source:  http://heartdisease.about.com/library/weekly/mcurrent.htm

The strange life of amiodarone

By DrRich

Amiodarone is the most effective, and certainly the strangest, antiarrhythmic drug ever developed.  (Antiarrhythmic drugs are used to treat heart rhythm disturbances.  Click here for a quick review of heart rhythm disturbances.)  Anyone being treated with amiodarone should understand the idiosyncrasies - and the risks - associated with this highly effective drug.

The strange history of amiodarone in the U.S.

Amiodarone was developed in Belgium in the 1960s as a drug for treating angina, and was quickly released for marketing in most countries except the United States.  Doctors noticed that, in their patients placed on amiodarone, heart arrhythmias greatly diminished.  Clinicians quickly began using the drug to treat cardiac arrhythmias of all sorts.  Within a few years, word began filtering into the United States - amiodarone was a unique antiarrhythmic drug that was said to "always work, and had no side effects."  Both of these assertions, of course, proved false.

In the late 1970s, American doctors began obtaining amiodarone from Canada and Europe to use in their patients with life-threatening arrhythmias who did not respond to any other drugs.  The FDA sanctioned this activity on a limited basis, but the drug seemed so effective that literally hundreds of American electrophysiologists were soon obtaining the drug (one way or another) and by the mid 1980's tens of thousands of Americans were receiving the drug.  The Americans, as a group, studied the effects of amiodarone somewhat more rigorously than their overseas colleages, and here's what they found: Amiodarone was indeed far more effective at suppressing arrhythmias than any other drug they had ever seen, but it produces a bizarre series of side effects that doctors around the world seemed to have "missed."  By the mid 1980s, the FDA was essentially forced to release amiodarone for marketing in the U.S. - the foreign manufacturers of the drug threatened to cut off the American supply (having supplied free drug to thousands and thousands of Americans for more than 5 years,) and the American doctors impressed on the FDA what a medical disaster that would produce.  So, unlike any other drug in modern history, amiodarone became FDA approved without rigorous, FDA-approved randomized clinical trials.  The true breadth of amiodarone-induced side effects took more than a decade to uncover.

Why amiodarone is a strange drug

Amiodarone has several characteristics that make it unique. 

First, the drug takes weeks to achieve its maximum effectiveness.  This is because amiodarone is stored in most of the tissues of the body, and to "load" the body with the drug, all the tissues need to be saturated.  The typical "loading" regimen of amiodarone, therefore, is to use very large doses for a week or two, then taper the dosage over the next month or so.  It is not unusual to give patients 1200 or 1600 mg per day at first, and then maintain them on as little as 100 or 200 mg per day chronically. 

Second, amiodarone leaves the body very, very slowly.  It is not excreted (like most drugs) by the liver or the kidneys.  It is lost when amiodarone-containing human cells are lost - such as skin cells or cells from the GI tract, which are shed by the millions each day.  Thus, if it is decided that one needs to stop amiodarone, the drug remains in the body in measurable quantities for months and months.  The "half life" of the drug, in contrast to most other drugs, is measured in weeks instead of hours.

Third, because amiodarone is stored in many different kinds of tissues, it can produce side effects affecting many different organs.  Some of these side effects take months or years to develop, so it is never true that one can stop being vigilant. 

Fourth, amiodarone works through many different mechanisms, unlike most drugs.  It fits into two separate categories of antiarrhythmic drugs (Class I and Class III, for what it's worth); it acts as a beta blocker; it acts as a calcium blocker; it acts to dilate blood vessels; and it often acts to "block" the effect of thyroid horomone.

The strange side effects of amiodarone

One reason the side effects of amiodarone were not spotted for years was that they often take weeks or months to develop (unlike side effects from typical antiarrhythmic drugs, that usually appear within days).  Also, the kinds of side effects produced by amiodarone are not the kind that heart doctors typically expect with antiarrhythmic drugs. In any case, it took more than a decade for many European doctors to admit (even after the American medical literature became saturated with articles) that they had been missing some rather remarkable side effects.

Amiodarone commonly causes deposits to form on the cornea of the eyes - in fact, this occurs in virtually every one taking the drug.  These deposits often cause no visual disturbances, but not infrequently patients complain of "halo-vision," where looking at bright lights at night is like looking at the moon on a foggy evening.

Amiodarone can cause a very disfiguring blue-grey discoloration of the skin, generally in areas of sun exposure, and that gradually worsens over a period of years.  It is not clear that this "smurf syndrome" clears up when the drug is stopped.  In younger patients this side effect can be devastating.

Amiodarone often sensitizes the skin to sunlight, so that even trivial exposure can cause a fairly nasty sunburn.  People taking amiodarone must often cover the body completely when going out during the summer, especially in hot, humid climates.

Each amiodarone molecule contains four iodine atoms - so a typical dose of amiodarone provides far more iodine to the body than is needed.  It is thought to be the iodine that mediates the thyroid side effects of amiodarone.  The more common of these is hypothyroidism - low thyroid.  This, fortunately, is relatively easy to treat with thyroid medication.  But some patients develop hyperthyroidism - high thyroid - and this can be a real problem and a real challenge to treat. (They hyperthyroidism often does not respond to the "typical" treatment used for this problem.)

Amidoarone can cause liver toxicity, so liver enzymes need to be monitored periodically.

The most serious side effect of amiodarone is pulmonary toxicity - lung disease.  This comes in two flavors.  Amiodarone can produce an acute pulmonary syndrome that looks and acts just like typical pneumonia - sudden onset of cough and shortness of breath.  This condition usually improves rapidly once amiodarone is stopped.  It can occur within days of beginning amiodarone.  The second flavor is more insidious - it is a gradual, unnoticeable, "stiffening" of the lungs that both the doctor and patient can overlook until finally severe, probably irreversible lung damage is done.  This problem can occur years after the drug is begun, or as early as a few months after beginning amiodarone.

When should amiodarone be used?

If Satan were going to develop an antiarrhythmic drug, he would make one that suppressed arrhythmias very well (so people would want to use it,) had none of the typical side effects, but that had a host of atypical, relatively subtle, but ultimately dangerous side effects that doctors were likely to overlook.  He might not be satisfied with amiodarone, but would likely consider it a pretty good first approximation.

Amiodarone should be used for arrhythmias that are life-threatening or that are very disruptive to one's life, and for which there are no other reasonable therapies. Despite its drawbacks the drug has helped tens of thousands of patients, and has restored them to a nearly normal life.  When used appropriately, amiodarone can be a major benefit.

But because of the potential toxicity its use should be limited.  No doctor should blithely prescribe the drug, but should do so with reluctance, realizing that he/she is exposing the patient to long-term risks.  The doctor should, by prescribing the drug, be committing him/herself to being a long-term partner of the patient. He/she should carefully coach the patient on what problems to look for, and together they should be ever vigilant for the side effects of the drug. 

Eye Exam Review Letter

We recently received the review letter from the Ophthalmologist Miss K saw earlier this month.  I was impressed with the Dr. for making sure I received a copy for myself, and also relieved since he got one thing wrong, a very important thing...he sent a copy of the letter to a family Dr. who IS NOT Miss K's Dr., they pulled the wrong Dr. from their list.  Her Dr. is Dr. Larson, with an "on", they sent her letter to a Dr. Larsen "en".  Now I have to call the Eye Dr. tomorrow and ask them to please re-send the letter to her Pediatrician lol, yes I did lol because even though it's a bit frustrating it's also kind of funny in an ironic kind of way.  Most funny to me is this other Dr. Larsen "en" is probably wondering who the heck this (Miss K) is and why he's receiving this letter lol!  Anyway, here's the letter (I liked what it said so I'll share).

Dear Dr. Pilcher,

Thank you for referring (Miss K).  As you know, (Miss K) has supraventricular tachycardia (SVT) and it sounds like the exact cause is not known.  She is currently being treated with amiodarone and propanolol.

Her eye exam was normal without evidence of corneal verticillate or any optic nerve abnormality.  Indeed, she had excellent fix and follow vision, briskly reactive pupils, and a normal cornea, iris, lens, vitreous, optic nerve, and retina OU.  She was quite cooperative for her eye exam too.

I will screen her again in approximately 4 months to continue to follow her progress, but I do not see evidence for ocular toxicity.

Warmest regards,

David C. Dries, MD

My only other correction, not really a big deal and I'm not calling anyone about it though I will make sure at her next eye exam that I "remind" him about it, was his opening paragraph.  I specifically told him at her eye exam that Miss K has PJRT, a condition that causes SVT.  I find it odd that he didn't catch (or maybe didn't understand) what I said.  It's clear he's not in the heart profession lol!

So good to know exactly what he thought of her eye exam from his professional point of view :o).

Home 4-17-12 Miss K is 8 Months Old

Today was Miss K's 8 month Cardiology check-up.  I've been looking forward to this day for weeks, sometimes it feels like there is just WAY too much time between visits.

Miss K is now weighing 16.4 pounds and is 27 1/4 inches long.

Her weight has caught up with her Propanolol dose finally.  Her Cardiologist says she is now on a dose that would be considered the "starter dose" for her weight if we were just beginning the Propanolol for the first time, which means we have a lot of room to grow before we can no longer up her dose as needed.  If she has any future SVT episodes we will be upping the Propanolol before upping the Amiodarone.

He was concerned that she's still having periodic breakthrough SVT episodes, she obviously hasn't outgrown the PJRT since we're still seeing them, of course we knew this already.  He was happy to hear that she was barely in SVT before we caught it and got her out of it on our own.

He is not taking her off the Amiodarone as of now.  He's for sure leaving her on it for 2 more months, he said that if she has absolutely NO breakthrough episodes between now and then that he'd be willing to try taking her off the Amiodarone but he warned me that if she did have any SVT episodes after taking her off of it that they may be long and that we may not be able to get her out of them on our own.  He wants us to be prepared to be making ER visits with her if we take her off the Amiodarone before she's really ready.  He is still wanting to keep her on the Amiodarone until her 1st birthday.  He mentioned upping the dose since she's been on the same dose for over 5 months now but I talked him out of it since she's only having 1 or 2 episodes every 3 months.  He was happy to keep everything as it is, if we keep the Amiodarone at 6 ML and she makes it to her 1st birthday then he explained it would be easier to take her off of it because there would be less in her system to work out, we could know within weeks if she needs to go back on it instead of 1-2 months like normal.  I'm confident we won't be changing the dose of this medication any time in the near future if at all.

Her heart sounds great, the EKG went very well and her blood pressure is great.  Overall the Cardiologist was impressed with how happy and alert she is, all she did was smile for him the whole time.

And some of the best news we received from the Cardiologist is that I do not need to give Miss K the Propanolol every 8 hours any more, he felt bad that he didn't mention this at her 6 month check-up, she just needs to get it 3 times a day and if we need to go longer than 8 hours that is totally fine.  The Propanolol works best when spread out evenly in 8 hour increments but it's not a big deal to get off the schedule.  I am so relieved!  Putting Miss K to bed after we give it to her at 10:00pm and then waking her up (as well as myself) at 6:00am to give it to her again has really been wearing on both of us.  Miss K absolutely hates getting up at 6:00am, usually she only wakes up just enough to take the Propanolol and eat a little then she goes back to sleep for almost 2 more hours.  And she is always ready for bed around 9:00pm and therefore cranky and hard to please for that extra hour.  I'm so happy to be able to let her set the schedule now!  The Cardiologist's exact words "Oh heavens, please let her sleep!  She should be allowed to wake up on her own when she's ready, she can wait to take the Propanolol until then!", he's such a wonderful Pediatric Cardiologist :o).  Of course we'll still try to stick to giving it to her as close to 8 hours as possible to keep her from having SVT episodes but letting her sleep as long as she needs to at night will be heavenly.

We had lab work done to check her Thyroid and Lungs, just keeping a close watch to make sure she doesn't have any Amiodarone Side Effects.  I haven't heard back from her Cardiologist yet, we may get the results tomorrow if not this evening, I'll update this post when I find out!  (We got a call from Miss K's wonderful Cardiologist around 6pm, everything looks GREAT!  I love that he calls us as soon as the results come to him, no matter the time and no matter what he's doing)  Getting the lab work done was torture on our sweet baby girl.  The technician tried her right arm first but couldn't get the vain, and rather than stop after the first try she kept trying and trying...and trying until it had been over 5 minutes on that same arm, Miss K screamed the whole time with great big crocodile tears rolling down her cheeks.  I admit, I cried too, my tears were almost as big as hers.  I felt awful holding her down like that :o(.  The technician finally tried the left arm and found that the vein there was much better than the other arm, but Miss K didn't get to calm down much before I had to hold her down again and let the girl poke her yet again.  We had instant screaming and tears all over again, a lot more hysteric the second time around but she got the vein and the blood within a minute and we were done.  Miss K continued to cry crocodile tears for over 10 minutes after leaving the Lab :o(.  Her poor Daddy could hear her screaming from the waiting room through 3 doors :o(, he admitted after the first 2 minutes he was about to jump over the desk and come rescue his baby doll, he's such a sweet and wonderful Daddy.

 Miss K showing off her 2 BandAid covered Owies :o(.  I'm sad to say she is getting some scaring on both arms in these locations :o(.

Miss K is doing awesome, she's growing like a weed and changing way too fast.  She's adorably funny, cute as a bug and the clown of the house.  She brings a smile to any and every face whether it be family or a stranger in a grocery store, nobody can look at her without smiling.  Currently her most favorite person in the world is her big brother, she lights up like a fire cracker whenever he walks into the room, luckily he loves her just as much :o).  She is the biggest Momma's girl ever, nobody can take care of her like her Mommy, or so she thinks.

Eye Doctor...

Monday we went in for another eye appointment, this time with a different Ophthalmologist.  I felt we needed to see someone else since I wasn't satisfied with the first Ophthalmologist's opinion.  I liked the first Doctor, he was very nice and talked and flirted with Miss K and made us feel comfortable but I didn't feel he knew enough about Miss K's situation.  He also felt that I was there on my own fears and that I was overreacting about Miss K being on Amiodarone, even after I told him that Miss K's Cardiologist had sent us in.  I felt like his assessment was very short and more geared towards making me feel better instead of really checking for any possible signs that the Amiodarone may be affecting her eyes (see Side Effects).  When we left his office I decided to keep the appointment that we had previously made with another Ophthalmologist (when I had called to make the appointment they couldn't get her in for 2 months and her Cardiologist and I wished to get her in sooner, thus the reason we saw someone else).

The Ophthalmologist we saw this time was GREAT.  Turns out he knew the first Doctor we saw and he was kind of surprised I was getting a second opinion from him but after I explained that I did like the Doctor but I didn't think he really knew enough about the situation then he understood and was more than happy to do a second assessment.  He was great with Miss K and very fun to talk to.  He did a little more in depth assessment of Miss K's eyes and gave her a clean bill of eye health.  He was so much more understanding about our fears, he works in a Children's Hospital and sees the worst of the worst so he's a lot more careful about what he's looking for, he knows the absolute bad that can happen.  He also knows Miss K's Cardiologist so he knew I was there on "Doctor's orders" not my own fears.  He has requested we bring Miss K back in 3 months if she's still on the Amiodarone so he can keep a close eye on her, though he's not really concerned about Amiodarone side effects in her eyes, he says it's VERY rare in infants and small children especially if the child's family has no eye disease in the family, but like I said he's seen the worst of the worst so he's more than happy to watch her closely.

I'm so relieved to hear that her eyes are great, the Ophthalmologist was actually quite impressed (and I think excited) to see her perfect eye development, that makes a Mom fell great :o).

Story Time...

Since I don't have much to update about (always a great thing with Miss K) and it's been quite a while since I posted last I thought I'd share a few stories :o).

In January I had a lady schedule to come to my home for a workshop to learn more about Heritage Makers.  She brought a few friends along and we had a lot of fun talking and sharing life stories.  When Miss K woke up from her nap and came out to see everyone the lady asked if she had met us before, other than at the county fair where she had learned about my business.  I told her she looked familiar as well but I didn't know why, I assumed it was because I was remembering meeting her at the fair.  Then she asked how old Miss K was and commented on how cute she was, etc., as always her smallish size was brought up and I explained she had a heart condition, that's when the lady realized where she had seen us before, she asked if we had brought Miss K into the local ER before and I said "yes, she was in SVT at 280 BPM" and she said "I was the one who did her work up in the ER!"  Then she turned to her friends and said "this is that baby that came in last summer!  The one who scared us all to death!" and the other ladies, who just happened to be nurses at the same hospital as well, all said "yeah!  We remember that story!  You guys were sure she wasn't going to make it!"  Miss K has been quite the talk of the town since her scary SVT beginning!

About a month or two ago we were at Home Depot picking up some supplies.  At checkout the girl was so nice and talkative.  She saw the baby carrier in the shopping cart and asked if she could see the baby.  Our conversation went sort of like this (though for sure not word for word, lol):

Checker:  Boy or girl?
Me:  Girl (lifting the cover)
Checker:  Aww!  She's so cute!  And so tiny!
Me:  She's actually kind of chunky, almost 16 pounds!
Checker:  How old?
Me:  Almost 6 months.
Checker:  Awww, my baby girl is almost 13 months, I can't believe how big she is now, seeing younger babies always makes me miss the tiny baby she was.
Me:  Yeah, she was quite tiny to begin with.
Checker:  My baby was 5 pounds 14 ounces.
Me:  Wow!  My baby was 5.12!
Checker:  My baby was delivered via emergency c-section.
Me:  Mine too!  Her heart was beating too fast.
Checker:  My baby's was too!  Does your baby have SVT?
Me:  Yes she does!  Your's does too?
Checker:  Yes!  She was life flighted to Primary Children's last fall in heart failure.
Me:  I'm so sorry!  Is she alright?
Checker:  She's great, she's now on heart medications.
Me:  Our little one is too.

We held up the line of customers behind me while she gave me her Facebook name so we could be friends and keep up with each other.  Quite the coincidence to run into another SVT mom right here in town!  Even more crazy that her baby is not much older than ours.  It makes me wonder what is in the water here, lol!


We were in the Pediatrician's office last week to make sure Miss K's congestion wasn't moving to her ears or a product of an illness.  While there the Doctor we were seeing (her primary Pediatrician wasn't available early enough for us) asked what medications she was currently taking, as always when I told him she was on Amiodarone and Propanolol he was quite shocked.  I told him she had SVT and he got all excited, not uncommon lol.  He told me a crazy story about a baby girl who came in to see him last fall, she was all flushed and didn't look like she felt well at all and when he listened to her lungs and heart he was shocked to find that her heart sounded like a little humming bird it was beating so fast.  He realized this baby was possibly in heart failure and in his words "I took a deep breath and calmed myself before telling the mom that I thought she should probably take her baby over to the ER."  He then said that within minutes of her leaving the Pediatricians office life flight flew in and took the baby girl to Primary Children's, the baby was in heart failure due to SVT.  Turns out I'm pretty sure this baby he was talking about is the same baby who's mother I talked to in Home Depot!


We had to take Daddy to the after hours clinic to have a Strep Test done last week.  While there the Doctor (who was new to us, we had never visited him before) was curious as to why exactly we wanted a Strep Test if Daddy wasn't having for sure Strep Throat symptoms, we let him know Miss K had a heart condition and we needed to keep her as healthy as possible.  He completely understood and of course, being a doctor he wanted to know what her condition was.  We told him she had SVT and he immediately got curious.  He then asked, "wait, is she the baby that was in the ER here last summer?"  Lol, we definitely started to laugh and told him yes she was, he was amazed to see she seemed to be doing great.  I asked him if he was in the ER at the time and he told us that he was not, he had just gotten off shift in the after hours clinic when it was paged out to everyone.  Yup, Miss K was definitely the talk of the town.


Miss K is doing great :o).  Our next upcoming visits are in April, first to see another Ophthalmologist for a second opinion about her eyes (from Amiodarone side effects) just as a precaution to make Mommy feel better, then we'll see her Cardiologist a few weeks after for her bi-monthly checkup and then in May we'll have Miss K's regular well baby check for 9 months (wow, can she really be coming up on her 9 month mark?  Time goes WAY too fast!).  I feel great about how things are going and I'm confident these upcoming appointments are going to go very well for us :o).

A Visit with an Ophthalmologist

The eye center Miss K's Cardiologist referred her to couldn't get her in until April, her cardiologist wanted her seen ASAP.  I made the decision to get the name of a Pediatric Ophthalmologist from Miss K's Pediatrician instead, hoping they could get her in sooner, and was in luck, they were able to get her in within the week.  Today was the day.

I was a little nervous about seeing this Eye Doctor, I had no idea if he would know anything about the medication Amiodarone, or if he would know what he was even looking for.

Now that the appointment has come and gone I'm still not sure the Doctor knew what he was looking for, he knew quite a bit about Amiodarone surprisingly.  The appointment only took an hour, that was including waiting 30 minutes for Miss K's eyes to dilate, this seemed odd to me since the eye center her Cardiologist recommended said Miss K's appointment would take 2-5 hours???  The Eye Doctor took a few minutes to look at Miss K and then told me he didn't understand why I was there, he said she was too young for us to know anything about any side effects showing in her eyes and that he didn't think there was anything to worry about with her.  He then asked if I had any personal reason to have her seen by him, of course my only reason was because her cardiologist wanted her seen ASAP.  So this Eye Doctor's plan is to look up Miss K's Amiodarone ratios (her dose to weight ratio and the milligrams to milliliters ratio of her compound mix) and see what the clinical outcomes say about the possible side effects in the eyes, he said if there was anything relevant to Miss K's situation that he'd call me, otherwise she's fine.

Now I'm trying to decide if we can cancel Miss K's scheduled appointment in April with the other eye center or if I should keep it for a second, possibly more informed, opinion.  I'm not quite sure what to do...I really feel that Miss K's eyes are just fine, but I want to make sure my feelings are correct and today's eye doctor didn't really help me out here.

Home 2-7-2012 Miss K is 6 Months Old!

Miss K had her 6 month Cardiology check up today.  It went well so say the least...I'll leave out the whole complaint of it taking us over 4 hours to get through the visit and back home again, let's just say:  I thought taking her to the nearest center her cardiologist is in would take 1/2 the time as taking her to the usual place we go to, I was wrong it took the same amount of time, the only difference was we didn't spend 3 hours of our total time driving, but instead we spent that time waiting and waiting, not quite sure what's worse?

Anyway, on to today's results and decisions!

Miss K is doing great heart wise.  Her little heart was beating at 128 BPM today at her appointment, which is great :o).  My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).

We decided to keep her on the Amiodarone a little longer.  As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to.  So essentially it was my decision to keep her on it.  Those 2 SVT episodes last month really scared me into it.  But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY!  We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is.  I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes.  If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it.  As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.

Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist  to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).

All my concerns were considered.  Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.

Miss K CAN take Tylenol, thank heavens!  Now I can feel good about making her ear pain go away orally!  The numbing ear drops do work but I feel Tylenol would work better.

Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine.  I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).

I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow.  Hopefully this is nothing to be concerned about but we'll see!

I asked about antibiotic interactions with her heart medications.  The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol!  But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.

I asked about her Thrush issues.  This is something we've been battling with her for about 4 months now, it comes and goes.  We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again.  As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(.  She should outgrow it in time.  I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.

I asked about our method of giving Miss K her Propanolol.  She LOVES to spit this one out and refuses to swallow it.  One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason.  I was only concerned that there may be an ingredient that could interact with her heart medications.  The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!

My last, and biggest, concern was her Potassium levels.  In the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having.  They put her on Keppra just in case and asked that we have an MRI done a few months later.  When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system.  Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention.  It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off.  I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about.  When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work. 

Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).