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.
Showing posts with label Hair loss. Show all posts
Showing posts with label Hair loss. Show all posts
11.19.2013
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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