eparkwell
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eparkwell, October 3,  2018  12:52am EST

3.5 year old daughter with Bicuspid Aortic Valve. Use of Losartan?

Hi,

My daughter is 3.5 years old and she was diagnosed w/ BAV at 20 weeks gestation. She gets yearly echo's right now, but at most recent appointment, our cardiologist noted some mild changes and suggested possibility of starting Losartan in the future. Has anyone had experience with their young child taking this medication- and if so- what have been pros/cons? I cant find much research on benefits but our doctor had indicated that it can help prevent further progression of leakage. He also said that she could need valve replacement surgery (30% chance) in next 5-10 years- this terrifies me. Any words of support/guidance greatly appreciated! 

5 Replies
  • AmbassadorDN
    AmbassadorDN, October 3,  2018  5:00pm EST

    Welcome, eparkwell!

    My heart goes out to you as I can only imagine the fear you have for your little CHD Warrior! While my experience is nothing at all like yours, perhaps I can give you a bit of insight through my experiences with CHD.

    I was born with mitral valve regurgitation and my parents and I were told that surgery was in the future, but not likely until I hit retirement age. I was 30 when I had my first surgery, a mitral valve repair, and have had two other valve replacements in the last two years. When I was born, though, I had a heart attack. My pediatric cardiologist put me on a small dose of liquid digoxin which is used to treat heart failure (since I was in heart failure at the time.) I was on that for about two years, with no side effects, and I didn't need any heart medications again until my early 20s. I'm now in my 40s, and I have lived a pretty normal life (aside from 4 heart surgeries in 11 years' time). With all that being said, your daughter can live a normal life in spite of her CHD.

    Many strides in heart valve surgery--even heart surgeries alone--have been made since I was born in the 1970s. Your daughter may need surgery as a child, a teen, or even like me, not need surgery until adulthood. Keep working and partnering with your daughter's pediatric cardiologist. Keep abreast of current treatments for CHD. If you notice any worrying symptoms, let your daughter's doctor know as soon as possible. Above all else--and I know, easier said than done--try not to worry. Kids are very resilient, and should your daughter need surgery sooner than later, I'm sure she'll bounce back just fine. One of my best friends, also a CHD'er, had her first valve replacement at 17 years old and went back to school within three weeks. My most recent surgery at age 42 was last November, and I didn't return to work until August this year. 

    Please keep us posted, and feel free to ask away!

    To Heart and Soul Health,

    Debra

  • Jenny123
    Jenny123, October 4,  2018  1:43pm EST

    Hi, sorry to hear about your daughters troubles, my 3 yr old daughters heart condition is very different to yours so I wont pretend to know anything about it but I know how hard it can be on the parents. I worry about the condition and the side effects of treatment all the time. I am constantly in a state of worry. I hope you get the answers you need and someone will have experience with this drug. My daughter is on beta blockers and anti arrhythmia meds since birth and thankful the side effects have been minimal and manageable to date. Surgery is so scary I can't bare to think about it. I'm sorry i have no wisdom to pass on but I wanted to write back to you to let you know I will be thinking of you and your little girl so please keep us posted. 

    Warm wishes from across the pond

  • MedicMom
    MedicMom, December 11,  2018  12:12am EST

    Best wishes for you...my little one is on an ACE inhibitor. Losartan technically is a different category of medication but the two kind of do the same thing as far as working to keep the body from making something called angiotensin II which, after a few more steps, results in blood pressure going up. So, if the meds stop that, then we get the desired effect of lower blood pressure. My son had a coarctation of the aorta repair and still has some hypertension from that plus an anomalous and one constricted pulmonary vein that also contributes to the problem. 

    ACE inhibitors like my son takes can cause a dry annoying cough in a lot of people and when that is too much they will sometimes put them on a med like Losartan or one from that family. I know that both also have some diuretic effects and after my son takes his meds he often wets through his nighttime diaper way before the night is through and I wonder about future impact on potty training. My biggest worry is just the unknown...my dad as an adult does dialysis because he was on one of the meds several years ago that did harm to his kidneys and was taken off the market eventually. Then again, uncontrolled hypertension does harm too. I even worry about things like will we find out it causes cancer? Will my son be one of those that suffers erectile dysfunction as a side effect later in life? Women who are pregnant are advised that these meds can cause birth defects. I don’t want him to have to deal with anymore considering he will already probably be the only kid he knows dealing with taking meds like that...just know that doctors always do a risk/benefit analysis when they prescribe meds but you are certainly not alone in your worry. 

  • BL1970
    BL1970, January 22,  2019  2:19pm EST

    Eparkwell,

    Welcome to this site. I recently joined and have found this site wonderful! 

    I am an adult child of three open-heart surgeries. I am now 61 years old. I had my first open heart surgery for an aortic stenosis that developed when I was 2 months old. The first surgery was WAAAAAY back in 1968!!! I was 11 years old at the time.

    FYI the dinosaurs were extinct by then, however the tools used for heart surgery WERE from the stone age. But hold on, this story has a happy ending.

    In 1968, the chances of surviving such a surgery were based on odds-I was given a 50/50 chance. At the time, heart surgery was frantically trying to save more lives with better tools; the advances in cardiac care has absolutely skyrocketed!

    The surgeries you find on any site in this forum were only dreamed of 40, 30 years ago. I might go as far to to remark that looking toward possible surgery is probably more scary for you as for your child, and these emotions are valid-its what makes us human.

    In '72 I had open heart for an aortic valve replacement, but it was a bad model, and so I was recalled like a Ford Pinto.

    So, four years later I had another open heart, this time with a good valve, and it has kept on ticking for 41 years.

    Just another fact that I hope brings you comfort.  40 years of more research, gifted surgeons and technology again streaks forward. In '68 I was in the hospitalized for six weeks. Now, after most heart surgeries, the average stay is 3, maybe four days.

     

     

    I do not have adequate information about Losarton, but I Do have some words of wisdom regarding your now almost four year old.

    Since my very first surgery and other later ones, I never received any couselling, psychiatric or otherwise for the trauma that is common for almost any patient of heart surgery.

    I learned that children and young adults who do not have the chance to get counselling (for comfort, support, encouragement etc.,) are likely to suffer from PTSD, depression, and trauma.

    I suffered through every one until just recently, when I fianally reached out to professionals and entered a two-month intense therapy situation that has since left me a stronger, happier person who finally feels comfortable about my bodyand my valve. 
    So Eparkwell, I have become an avid advocate for patients, parent, caregivers etc., to ask for and recieve conselling

    and comfort from the psychatric side of such surgeries before, during and after surgery.

    I also reccommed that your child become a part of the conversation : let her see the operating room, show her diagrams and with as much comfort as you can. I am not saying one has to be jubilant about it, I think its important to keep your child in the loop.

    As an 11 year old I would have been intriqued, and would have felt I was a PART of things. Instead I was scared out of my mind.

    Much Peace to you and yours, remember that this kind of surgery is traumatic, but with the above information, it can be part of a jouney

     

     

     

     

     

     

     

     

  • JOJO16
    JOJO16, March 4,  2019  11:05am EST

    AHH the bicuspid aortic valve, I have 5 children and 3 of them were born with CHD, my two daughter BOTH have bicuspid aortic valves, one also has a coarctation or the aorta, and the other with a small VSD (resolved) my youngest son was born with with a large VSD/ASD that required open hear surgery at 6 weekd old, (doing great). As far as my two daughters that both have bicuspid aortic valves they have only had yearly echos and monitoring, though they will both need valve replacements in the years to come. They have been patients at the Boston Childrens Cardiology team for years (as of course is my son). I'm not sure where you are but I was informed that Children's hospital just performed the FIRST valve replacement WITHOUT open hear surgery in recent years.They are the leading research hospital in this department. When the time comes for your little one to have this procedure, and if your able to, you might want to check this out. I understand the terror that comes with the words "open heart surgery" especially when it comes to your child. ut, as horrifying as it is, if your child does need this, children come through these surgeries pretty well. But if your looking for a possible alternative, this may be something to explore. I dont know the medically requirements or any particulars. Hope this helps you, Good luck to you and your little one.

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