3.12.2014
Having Something in Common with a Celebrity
If it's true I really hate that she's absolutely not a person that I could ever approve of my daughter admiring, but it would be so great if Miss K could say "I have a heart condition in common with Miley Cyrus!" and be proud of it...http://www.nowmagazine.co.uk/celebrity-news/549387/miley-cyrus-s-heart-condition-means-her-next-party-could-be-her-last
3.04.2014
A Cardiolgy Visit
Miss K got to visit her EP Cardiologist, Dr. P, for her 6 month follow up :).
The appointment went as I expected it to go. Everyone hopes I'll be updating with great news that Miss K's PJRT has magically disappeared and she is "over it", everyone hopes I'll be reporting that we've taken a huge step and decided to lower her medication doses or that we have talked about lowering doses or taking her off of the medications in the near future. I have to admit I really, really wish I could be telling you these wonderful things in my update.
The truth is, Miss K has not outgrown her PJRT and is not going to do so, at all, ever. Dr. P has been very optimistic in the past, he has given us hope that we could at least "talk" about changing her medications to lower or fewer doses in upcoming appointments but today he did not give us this hopeful news. Dr. P was very down to earth and honest today. He is still seeing Miss K's PJRT on her EKG's, this does not mean she is having SVT episodes, the existence of PJRT is not solely based on having episodes, it is also based on the P-waves on the EKG, and Miss K's P-waves show that she does indeed still have PJRT, that without her medications she would be having persistent SVT episodes without a doubt.
Since I made the hour and a half drive to her appointment in a horrible rain storm through a dangerous canyon with all 3 kids in tow today I decided not to let the appointment end after a short 10-15 minutes. I took the time, knowing we were his last appointment for the day, and asked him questions that have come up over the past year, I got to ask him a few questions I never thought to ask before having it brought up on our PJRT facebook page or other SVT sites I am a part of. I learned a lot today!
If you go to THIS web page it explains SVT very well in great terms that anyone can understand, it also shows a diagram of a normal heart and where the "electrical" impulses come from and are supposed to go through (diagram is below), a friend found this site a few weeks ago and shared, I'm so grateful for my SVT friends! This web page got me wondering why I didn't know exactly what PJRT was in the heart so I asked Dr. P about it today :).
Dr. P says PJRT is Re-entry SVT, Accessory Pathway (explained on the site referred to above). When a person has PJRT it means the electrical impulse from the Sino-atrial node will follow a path down and around the Right Atrium, under the Right Ventrical and up to the Atrio-Ventricular node and into the Right Atrium, following the path on the diagram above, a normal heart's pathway will bring the signal quickly into the Atrium just as the Atrium contracts with the heart beat, a PJRT pathway will bring the signal very slowly into the Atrium missing the Atrium's contraction, or delaying the contraction, causing the heart to overreact, or panic, and thus setting off the SVT episode. The Propranolol and Digoxin do not change this pathway or the electrical impulses speed, the pathway and impulse will continue in the same slow manner until an ablation is done to correct it. Instead, the Propranolol and Digoxin only keep the heart from overreacting, they keep the heart rate at a steady, slower pace most of the time even though the impulse is slow to enter the atrium. This slow impulse is what is seen on an EKG, the time interval between the R wave and the following p wave is longer than the interval between the p wave and the R wave that follows it. Dr. P mentioned that a lot of the time children are only tentatively diagnosed with PJRT because they can't determine exactly what type of SVT they are seeing without an Intracardiac Electrophysiology Study done (EP Study), where they send a catheter into the heart to see how the electrical system is working and find out what/where the Accessory pathway is, but sometimes, in rare cases, they can see, without a doubt, that the child has PJRT because of the P wave on the EKG. Dr. P has always said he knew without a doubt Miss K has PJRT but I never asked how before now, today he confirmed that Miss K was a "for sure, no doubt" PJRT case based off what he saw on her first EKG because her P waves were VERY wide, among a few other factors that made it a definite case of PJRT.
Today the hammer dropped. Any of my hopes were dashed completely. Miss K will be kept on her medications until a Catheter Ablation is done. Every time she gains a kilogram in weight (2-3 pounds) we will, without a doubt, be upping her medication doses whether she is having breakthrough SVT or not, Dr. P does not want her having episodes at all, and he assured me that if we are slack with dose adjustments she WILL have breakthroughs. When she is 5 years old we will talk about ablation options. He said it will be up to us as to whether she has the ablation at age 5 or if we keep her on medications longer and wait a few more years, either way she WILL be having an ablation done. He is confident that, even if we can successfully pull all medications and see no breakthroughs, she will end up in the ER with a severe episode and be put back on medications or forced to do an ablation so his advice is to have the ablation done as early as possible so we can rest easy as she grows and not worry about a sudden breakthrough. I personally don't want to get a phone call from my teenage daughter, or her coach/teacher, during a sport she is involved in telling me she is on her way to the ER. I want her to be able to participate in sports without stressing about a possible SVT attack.
So there you have it. Miss K is ALWAYS going to be on medications for her PJRT, until a successful ablation is done.
The best part of this appointment is that Miss K was a champ the whole time :), not one tear, no crying, no screaming. She let the nurse put the EKG stickers on her and the wires without a peep, she did poke her lip out and I saw a slight quiver but no crying actually happened :). She played and interacted with Dr. P, who couldn't believe how much she has grown since last seeing him. She was also weighed today, I am so proud to say that Miss K is now 22 pounds! She has gained 2 pounds in 3 months, this is a huge deal with this tiny girl :).
The appointment went as I expected it to go. Everyone hopes I'll be updating with great news that Miss K's PJRT has magically disappeared and she is "over it", everyone hopes I'll be reporting that we've taken a huge step and decided to lower her medication doses or that we have talked about lowering doses or taking her off of the medications in the near future. I have to admit I really, really wish I could be telling you these wonderful things in my update.
The truth is, Miss K has not outgrown her PJRT and is not going to do so, at all, ever. Dr. P has been very optimistic in the past, he has given us hope that we could at least "talk" about changing her medications to lower or fewer doses in upcoming appointments but today he did not give us this hopeful news. Dr. P was very down to earth and honest today. He is still seeing Miss K's PJRT on her EKG's, this does not mean she is having SVT episodes, the existence of PJRT is not solely based on having episodes, it is also based on the P-waves on the EKG, and Miss K's P-waves show that she does indeed still have PJRT, that without her medications she would be having persistent SVT episodes without a doubt.
Since I made the hour and a half drive to her appointment in a horrible rain storm through a dangerous canyon with all 3 kids in tow today I decided not to let the appointment end after a short 10-15 minutes. I took the time, knowing we were his last appointment for the day, and asked him questions that have come up over the past year, I got to ask him a few questions I never thought to ask before having it brought up on our PJRT facebook page or other SVT sites I am a part of. I learned a lot today!
If you go to THIS web page it explains SVT very well in great terms that anyone can understand, it also shows a diagram of a normal heart and where the "electrical" impulses come from and are supposed to go through (diagram is below), a friend found this site a few weeks ago and shared, I'm so grateful for my SVT friends! This web page got me wondering why I didn't know exactly what PJRT was in the heart so I asked Dr. P about it today :).
Dr. P says PJRT is Re-entry SVT, Accessory Pathway (explained on the site referred to above). When a person has PJRT it means the electrical impulse from the Sino-atrial node will follow a path down and around the Right Atrium, under the Right Ventrical and up to the Atrio-Ventricular node and into the Right Atrium, following the path on the diagram above, a normal heart's pathway will bring the signal quickly into the Atrium just as the Atrium contracts with the heart beat, a PJRT pathway will bring the signal very slowly into the Atrium missing the Atrium's contraction, or delaying the contraction, causing the heart to overreact, or panic, and thus setting off the SVT episode. The Propranolol and Digoxin do not change this pathway or the electrical impulses speed, the pathway and impulse will continue in the same slow manner until an ablation is done to correct it. Instead, the Propranolol and Digoxin only keep the heart from overreacting, they keep the heart rate at a steady, slower pace most of the time even though the impulse is slow to enter the atrium. This slow impulse is what is seen on an EKG, the time interval between the R wave and the following p wave is longer than the interval between the p wave and the R wave that follows it. Dr. P mentioned that a lot of the time children are only tentatively diagnosed with PJRT because they can't determine exactly what type of SVT they are seeing without an Intracardiac Electrophysiology Study done (EP Study), where they send a catheter into the heart to see how the electrical system is working and find out what/where the Accessory pathway is, but sometimes, in rare cases, they can see, without a doubt, that the child has PJRT because of the P wave on the EKG. Dr. P has always said he knew without a doubt Miss K has PJRT but I never asked how before now, today he confirmed that Miss K was a "for sure, no doubt" PJRT case based off what he saw on her first EKG because her P waves were VERY wide, among a few other factors that made it a definite case of PJRT.
Today the hammer dropped. Any of my hopes were dashed completely. Miss K will be kept on her medications until a Catheter Ablation is done. Every time she gains a kilogram in weight (2-3 pounds) we will, without a doubt, be upping her medication doses whether she is having breakthrough SVT or not, Dr. P does not want her having episodes at all, and he assured me that if we are slack with dose adjustments she WILL have breakthroughs. When she is 5 years old we will talk about ablation options. He said it will be up to us as to whether she has the ablation at age 5 or if we keep her on medications longer and wait a few more years, either way she WILL be having an ablation done. He is confident that, even if we can successfully pull all medications and see no breakthroughs, she will end up in the ER with a severe episode and be put back on medications or forced to do an ablation so his advice is to have the ablation done as early as possible so we can rest easy as she grows and not worry about a sudden breakthrough. I personally don't want to get a phone call from my teenage daughter, or her coach/teacher, during a sport she is involved in telling me she is on her way to the ER. I want her to be able to participate in sports without stressing about a possible SVT attack.
So there you have it. Miss K is ALWAYS going to be on medications for her PJRT, until a successful ablation is done.
The best part of this appointment is that Miss K was a champ the whole time :), not one tear, no crying, no screaming. She let the nurse put the EKG stickers on her and the wires without a peep, she did poke her lip out and I saw a slight quiver but no crying actually happened :). She played and interacted with Dr. P, who couldn't believe how much she has grown since last seeing him. She was also weighed today, I am so proud to say that Miss K is now 22 pounds! She has gained 2 pounds in 3 months, this is a huge deal with this tiny girl :).
2.14.2014
2.08.2014
CHD Awareness Week
Please visit our page "My PJRT Sisters and Brothers" above, for the next 7 days I will be sharing a spotlight on a PJRT child we have met in the past year :).
http://thestoryofababywithsvt.blogspot.com/p/my-pjrt-sisters-and-brothers.html
http://thestoryofababywithsvt.blogspot.com/p/my-pjrt-sisters-and-brothers.html
2.07.2014
Did YOU Wear Red Today?
Miss K, Big Brother and Little D wearing their red to support CHD Awareness!
2.06.2014
A Small Favor
Hello family and friends :)
Did you know tomorrow, Friday February 7, 2014 is the first day of Congenital Heart Defects Awareness week?!? It came up fast, I almost forgot to remind everyone!
I have a favor to ask of all of you.
Could I PLEASE, PLEASE, PLEASE get each and every one of you, including your children, to wear RED tomorrow all day? I would really, really appreciate it! When asked why you're wearing red (teach your kiddos to tell their teachers and friends), tell them you are wearing it for a family member/friend who has a Heart Defect and you are honoring her and helping her spread awareness about Congenital Heart Defects. Let's spread the word for more research!
This is REALLY important to me, I would LOVE to see a picture of your families wearing red tomorrow, if you get a moment would you snap a picture and send it to me? Or tag me on Facebook if you can :). PLEASE PLEASE PLEASE PLEASE help us out and wear RED tomorrow?
Thank you from the bottom of my heart :).
Did you know tomorrow, Friday February 7, 2014 is the first day of Congenital Heart Defects Awareness week?!? It came up fast, I almost forgot to remind everyone!
I have a favor to ask of all of you.
Could I PLEASE, PLEASE, PLEASE get each and every one of you, including your children, to wear RED tomorrow all day? I would really, really appreciate it! When asked why you're wearing red (teach your kiddos to tell their teachers and friends), tell them you are wearing it for a family member/friend who has a Heart Defect and you are honoring her and helping her spread awareness about Congenital Heart Defects. Let's spread the word for more research!
This is REALLY important to me, I would LOVE to see a picture of your families wearing red tomorrow, if you get a moment would you snap a picture and send it to me? Or tag me on Facebook if you can :). PLEASE PLEASE PLEASE PLEASE help us out and wear RED tomorrow?
Thank you from the bottom of my heart :).
1.04.2014
1 YEAR SVT FREE!!!!!
The holidays got me distracted, Miss K's official 1 year SVT free date was actually December 22, 2013. We decided to get Christmas and New Year's over with before we celebrated this wonderful milestone with our little girl.
Tonight we had a "1 Year SVT Free" party for Miss K. Just something very small, a quickly tossed together cake and a small group consisting only of our little family, my parents and my sister and one of my brothers. Nothing special other than the cake, which did not turn out the way I wanted it to due to a bit of bad luck this evening starting with Daddy using the wrong box cake (I had called him from the store and asked him to get it mixed and ready for me to bake when I got home, he grabbed an angel food cake rather than regular yellow cake from the pantry lol), then when I got home I realized the gel pen I bought was clear rather than colored so it barely showed up on the pink frosting. But it was all more than worth it seeing Miss K's excitement over the giant PINK heart cake and the candle she got to blow out :) not to mention the cake and cherry chocolate ice cream were delicious anyway :).
Just 6 more months...all we need to do is make it 6 more months SVT free. In a little more than 6 months Miss K will be 3 (wow, makes me want to cry), if she has been SVT free for 18+ months her EP Cardiologist wants to talk about lowering medications to see if she still needs them. We have her 6 month follow up scheduled for March 4, we'll learn more about "the plan" then. I pray we will be able to tell him she has been SVT free for 14+ months when that date comes. I'm so proud of our beautiful little girl and all she has been so strong through!
Tonight we had a "1 Year SVT Free" party for Miss K. Just something very small, a quickly tossed together cake and a small group consisting only of our little family, my parents and my sister and one of my brothers. Nothing special other than the cake, which did not turn out the way I wanted it to due to a bit of bad luck this evening starting with Daddy using the wrong box cake (I had called him from the store and asked him to get it mixed and ready for me to bake when I got home, he grabbed an angel food cake rather than regular yellow cake from the pantry lol), then when I got home I realized the gel pen I bought was clear rather than colored so it barely showed up on the pink frosting. But it was all more than worth it seeing Miss K's excitement over the giant PINK heart cake and the candle she got to blow out :) not to mention the cake and cherry chocolate ice cream were delicious anyway :).
12.31.2013
Amiodarone and Grapefruit
I know Miss K has not been on Amiodarone for over a year but recently the use of Grapefruit while taking Amiodarone was brought up on our Living with PJRT facebook group and it brought me to researching it a bit. I remembered when Miss K was on Amiodarone that our EP Cardiologist told us not to give her Grapefruit or any products of Grapefruit while she was taking it, I just listened to him and never gave it to her but I didn't ever look into the reasons why. Below you will find the smallest bit of research I was able to do on the subject, I only hope it is helpful to someone :).
In light of recent confusion about Amiodarone and Grapefruit I have be researching it hoping to help those of you who are still giving your babies Amiodarone :). All in all everything I found was full of words and talk that anyone without a medical degree could never fully understand lol, but I did find one, just one, very dummied down explanation about ingesting Grapefruit or any product of Grapefruit while taking Amiodarone. Here it is, I hope it helps your understanding!
Grapefruit juice appears to completely inhibit the metabolism of amiodarone to its major active metabolite, increases the AUC of amiodarone by 50% and increases the peak serum level by 84%, which may lead to toxicity. However, the effect of amiodarone on the PR and QTc intervals is apparently decreased, possibly due to reduced levels of the active metabolite.
Further study is needed. In the meantime, it may be prudent to suggest to patients that they avoid grapefruit juice.
http://www.medpill.info/amiodarone-and-grapefruit-juice-10176.htm
The studies I read said that in males it harms the testicles and in all patients, male and female, it can harm the urinary tracts and kidneys and the Grapefruit lessens the Amiodarone's effectiveness.
I hate the internet, research can be quite tough for me here lol, if anyone can find anything to read about this that is less confusing than what I found please feel free to share it in the comments here with a link to the site you found it on :).
In light of recent confusion about Amiodarone and Grapefruit I have be researching it hoping to help those of you who are still giving your babies Amiodarone :). All in all everything I found was full of words and talk that anyone without a medical degree could never fully understand lol, but I did find one, just one, very dummied down explanation about ingesting Grapefruit or any product of Grapefruit while taking Amiodarone. Here it is, I hope it helps your understanding!
Grapefruit juice appears to completely inhibit the metabolism of amiodarone to its major active metabolite, increases the AUC of amiodarone by 50% and increases the peak serum level by 84%, which may lead to toxicity. However, the effect of amiodarone on the PR and QTc intervals is apparently decreased, possibly due to reduced levels of the active metabolite.
Further study is needed. In the meantime, it may be prudent to suggest to patients that they avoid grapefruit juice.
http://www.medpill.info/amiodarone-and-grapefruit-juice-10176.htm
The studies I read said that in males it harms the testicles and in all patients, male and female, it can harm the urinary tracts and kidneys and the Grapefruit lessens the Amiodarone's effectiveness.
I hate the internet, research can be quite tough for me here lol, if anyone can find anything to read about this that is less confusing than what I found please feel free to share it in the comments here with a link to the site you found it on :).
11.19.2013
11 Months SVT Free
I should be jumping for joy, happy as ever, smiling ear to ear, joyous, etc., etc., etc....but I'm NOT. I was all those things last month, and the month before, and the month before that. Each month SVT free is a huge accomplishment for this little girl, don't get me wrong I am EXTREMELY grateful for these past months and I pray with everything I have that we can keep this streak going. So why am I so down about it?
A little more than a month ago a fellow PJRT mom made the decision to take her 4 year old PJRT daughter off of all her medications, she had been SVT free for over a year and they felt it was time to see how she did on her own. Almost 6 weeks went by of nothing but good news, I admit, I got my hopes up for her and for Miss K. Any time a child is considered to have outgrown their PJRT I get my hopes up for Miss K's diagnosis. Almost 6 weeks of thinking we had more hope, another PJRT child had most likely outgrown her condition. Almost 6 weeks of no medications and her sweet mama breaks the news that her sweet little girl had been taken to the ER via ambulance having a severe SVT episode. She was put back on her medications and sent home stable, a few days later she was taken to the ER yet again having a severe SVT episode, her medications were adjusted and she spent over 12 hours in the ER as they watched her closely to be sure she would be OK, she was sent home on a higher dose of medications than what they had ended almost 6 weeks before. My heart broke. This terrified me. We are a little more than 6 months away from the date her EP Cardiologist said he would remove all medications if she stays SVT free until that date. What if she follows the same fate this little girl did?
Earlier this week another SVT mom made note in our facebook group that her 3 year old, who has been SVT free for over a year but, like Miss K, is still medicated, had her first SVT episode and was rushed to the hospital. Her medications had to be adjusted and she still had yet another SVT episode a day later. This mama had been hopeful, like us, that her daughter had outgrown her SVT and they had plans to take her off of her medications in the next month or so, now it is apparent she still needs the medications and at a higher dosage.
These two very recent experiences have completely dashed my hopes. I've always felt that we are walking on egg shells, so to speak. I've always had the possibility of an SVT episode on my mind, though pushed back as far as I can hoping I am wrong. Hearing about other children, who are 1-2 years older than Miss K, having such unexpected breakthrough SVT after so long being SVT free is a huge slap of reality right to my face.
Miss K is doing great. She's still experiencing moderate hair loss occasionally, and that's the weird part it's only occasionally, I've begun to think her iron levels may be dipping from lack of proper eating when she gets into her little eating issues and being on the Propranolol during these eating issues and iron dips makes her body take a harder hit than normal which is probably why she looses a lot of hair for a week or two and then stops for a bit. She has a cold right now, nothing serious just the sniffles and a bit of congestion, she fevered yesterday but only just a bit sitting around 99.8 degrees, a bit more tired than usual but otherwise seems fine.
IF Miss K makes it to 1 year SVT free we will be having a big party for her, no matter how long she may or may not stay SVT free, a year is wonderful and I want to make sure we celebrate it. I will not let reality's slap to the face stop me from keeping up hope, she has beaten a lot of odds and shown her EP Cardiologist that she is a very special little girl from day one, maybe, just maybe, she will be that different case that actually has outgrown her PJRT.
A little more than a month ago a fellow PJRT mom made the decision to take her 4 year old PJRT daughter off of all her medications, she had been SVT free for over a year and they felt it was time to see how she did on her own. Almost 6 weeks went by of nothing but good news, I admit, I got my hopes up for her and for Miss K. Any time a child is considered to have outgrown their PJRT I get my hopes up for Miss K's diagnosis. Almost 6 weeks of thinking we had more hope, another PJRT child had most likely outgrown her condition. Almost 6 weeks of no medications and her sweet mama breaks the news that her sweet little girl had been taken to the ER via ambulance having a severe SVT episode. She was put back on her medications and sent home stable, a few days later she was taken to the ER yet again having a severe SVT episode, her medications were adjusted and she spent over 12 hours in the ER as they watched her closely to be sure she would be OK, she was sent home on a higher dose of medications than what they had ended almost 6 weeks before. My heart broke. This terrified me. We are a little more than 6 months away from the date her EP Cardiologist said he would remove all medications if she stays SVT free until that date. What if she follows the same fate this little girl did?
Earlier this week another SVT mom made note in our facebook group that her 3 year old, who has been SVT free for over a year but, like Miss K, is still medicated, had her first SVT episode and was rushed to the hospital. Her medications had to be adjusted and she still had yet another SVT episode a day later. This mama had been hopeful, like us, that her daughter had outgrown her SVT and they had plans to take her off of her medications in the next month or so, now it is apparent she still needs the medications and at a higher dosage.
These two very recent experiences have completely dashed my hopes. I've always felt that we are walking on egg shells, so to speak. I've always had the possibility of an SVT episode on my mind, though pushed back as far as I can hoping I am wrong. Hearing about other children, who are 1-2 years older than Miss K, having such unexpected breakthrough SVT after so long being SVT free is a huge slap of reality right to my face.
Miss K is doing great. She's still experiencing moderate hair loss occasionally, and that's the weird part it's only occasionally, I've begun to think her iron levels may be dipping from lack of proper eating when she gets into her little eating issues and being on the Propranolol during these eating issues and iron dips makes her body take a harder hit than normal which is probably why she looses a lot of hair for a week or two and then stops for a bit. She has a cold right now, nothing serious just the sniffles and a bit of congestion, she fevered yesterday but only just a bit sitting around 99.8 degrees, a bit more tired than usual but otherwise seems fine.
IF Miss K makes it to 1 year SVT free we will be having a big party for her, no matter how long she may or may not stay SVT free, a year is wonderful and I want to make sure we celebrate it. I will not let reality's slap to the face stop me from keeping up hope, she has beaten a lot of odds and shown her EP Cardiologist that she is a very special little girl from day one, maybe, just maybe, she will be that different case that actually has outgrown her PJRT.
10.24.2013
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.
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.
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