Son has heart murmur...what was the Dr. doing for 8 years?

[canwegosoon]

OK...little history.
One of my twins since birth has pooled water at his hands and feet. When he comes in from playing, he looks like he ran through a sprinkler. Since he was an infant I have asked his peditrician...is his heart ok? "yes it is fine".

Fast forward to last Sept., and my son is on his first visit to a Asthma/allergist. "So how long has your son had the heart murmur?" WHAT?

Go back to his peditrician...and he says nothing about it again!!! That is it- I am finding a new peditrician. I do the research, because my son has several other medical problems, and I am not going through this again. Finally get a new Dr, and go to first appointment. I tell her the history...she listens to my son's heart. "Yep, he has a heart murmur...he has to go to a Pediatric Cardiologist for evaluation" I knew it!!! Could some one please just explain what my old peditrician was doing for 8 years?

I am fully aware that murmurs are common, that many people lead normal lives with them etc....but this past March, DH wanted to take my twins on Mission Space....and I said no...not with a "possible" heart murmur. I am just so thankful I did not put my son in harm's way at WDW.
BTW- my son has had 2 surgerys...and it would have been nice to know for the surgery too.

 

[kdibattista]

Wow... how scary!!!

I know doctors aren't perfect but I was quite annoyed when my niece was suspected of having Downs in the hospital (now confirmed) and the doctor did not pick up what is now realized to be a hole in her heart. Heart problems are common (50%) in children with Downs so if they suspected it, don't you think they would have checked her heart a little closer .

 

[mrFDNY]

Hi all,

Just wanted to post this,to make you breath a little better and not worry so much.I too was born with a mummur it was said to be a severe one at that.From the first time i can remember,i had to take antibotics when seeing the dentist just for rountine exams,every time no matter what.I usually had no cavitiys,but his first question would be"did you take your antibotics" every time.At 18 i had a bright idea,How cool would it be to join the FDNY in nyc
?However friends and family and even some uncles that all ready worked for the FDNY told me they do a very big cardiac work up before they hire you and with "my problem" i was sure to fail.I ignored then and gave it a try,Out of 1,500 people tested on the written exam, i scored better than 1,230 and made the list.Then it was time for the "big cardiac workup" right before hiring.I passed with no problems at all and they too saw and found my heart mumor.I even rode mission space around 4 times,3 which were in a row.Good luck and i hope everything works out fine for you.Don't worry to much(easier said than done,with little ones)Yes,many,many people lead full and normal lives and mumors are very common these days.

 

[Southern4sure]

Pediatrician almost killed my oldest son twice. DS had poloricstynosis (SP) which is projectile vomiting. I made weekly if not 2/3 times a week visits begging that something was wrong. Ped. finally told me not to bring ds back unless he through up blood. What??? Next day I was back, saw a fill in ped, her first time seeing my son and knew exactly what was wrong. Immediately went to have an upper GI done and ds had surgery that night. I made an appt to see our ped the next day. We had a long chat and I told her exactly what I thought of her medical skills.

Second ped would not label DS as allergic to penicillan (sp). He had chronic ear infections so ds was always on medicine of some sort. This ped didnt think tubes were necessary..... Ds had a rash that kept spreading until he looked like a lobster. He was all swollen and his skin was like tissue paper when I took him in the last time he saw my ds....dr said he "might" be allergic..DUH! That was the last straw for me.

By the time he was 18 months old I quit using peds all together and used our family dr. DS#2 only saw a ped until he was 6 wks old then we started using our family dr. Best move I ever made with drs.

 

[Christine]

I understand how you feel.

My son is now 11 years old. We go to a large pediatric practice and we see different doctors so I can't even blame this one doctor.

Ever since my son started walking, I noticed that his left foot turns inward. Others noticed it too. I made a specific appointment to have this checked out. The doctor told me that it was because he had very lax tendons, flat feet, and that he was tall. He told me that as he got older, his tendons would firm up and his ankles wouldn't be so wobbly. This was all very common in children built like him. He thoroughly checked his ankles, knees, and hips. Every time I went to the pediatrician for anything, I would bring this up and they would poo-poo me and tell me he was "normal."

About a year ago, I started taking my son to a podiatrist because of his flat feet. He often gets pain in his feet when walking long distances. The podiatrist looked him over and immediately pointed out he inward turning foot when he walks. He told me that it was actually a problem in the way that his hip and leg were aligned and that it was "too late" to do anything about it. It should have been taken care of when he was 4 or 5.

This really ticks me off.

 

[DisneyAddict_M]

Wow. I was born with a murmur and it ended up closing itself up when I was about 12. The only thing I had to do differently was take medication before any dentist appointment. Other than that, it didn't affect my life at all. I had a mild one though (which is how it closed itself up).

 

[kdibattista]

Thanks for your story . My cousin's 3 year old son, however, is now scheduled for open heart surgery at the end of August so there is plenty to worry about... especially if not caught. I'm sure many people do lead "normal" lives but it doesn't mean we should not take it seriously.

Hi all,

Just wanted to post this,to make you breath a little better and not worry so much.I too was born with a mummur it was said to be a severe one at that.From the first time i can remember,i had to take antibotics when seeing the dentist just for rountine exams,every time no matter what.I usually had no cavitiys,but his first question would be"did you take your antibotics" every time.At 18 i had a bright idea,How cool would it be to join the FDNY in nyc
?However friends and family and even some uncles that all ready worked for the FDNY told me they do a very big cardiac work up before they hire you and with "my problem" i was sure to fail.I ignored then and gave it a try,Out of 1,500 people tested on the written exam, i scored better than 1,230 and made the list.Then it was time for the "big cardiac workup" right before hiring.I passed with no problems at all and they too saw and found my heart mumor.I even rode mission space around 4 times,3 which were in a row.Good luck and i hope everything works out fine for you.Don't worry to much(easier said than done,with little ones)Yes,many,many people lead full and normal lives and mumors are very common these days.

 

[Disney Doll]

Sounds liek your pediatrician dropped the ball on this one, since another physician seemed to find it pretty quickly and easily.

I had a heart murmur as a kid that my peds found. He sent me to Yale for evaluation by a pediatric cardiologist who didn't hear a murmur. The next physical with regular pediatrician found the same thing...a murmur. Sent me back to Yale for eval by a different pediatric cardiologist who did hear a murmur. They did watched it for 7 years, because there are some murmurs that are present right after birth that disappear as the child ages, but most of them are gone by age 7. At age 7, I had a cardiac cath, they found a quarter-sized "hole" in my heart and did open heart surgery. This was back in 1969, when open heart wasn't as common as it is now.

But, the first specialist missed it, when my regular pediatrician had heard it, so go figure.

 

[BeNJeNWaFFLe]

Be lucky it took your son 8 years to find out. It took me 16 years! During my first visit with my current doctor he kept listening to my heart more than normal. After a few minutes he told me a I have a heart murmur. Mine is apparently quite noticable too, yet my pediatrician never said anything. I had an echocardiogram done and everything is fine now.

I have mitro valve prolapse. I have to take antibiotics before a dentist appointment because they want to avoid bacteria getting to my heart valve. It would have been nice to know about this when I was younger and having a lot of dental work done. I'm lucky nothing happened then. Good luck to your son. Hopefully everything turns out fine.

 

[justhat]

A lot of murmurs aren't detectable unless you're specifically looking for one. My husband has a murmur, result of a bicuspid rather than tricuspid valve, and it wasn't found until he was 20yo. Only reason they found it then was that he was getting severe migraines and some of the work up they did related to his heart when they noticed a possible murmur. After more tests it was confirmed, but all he has to do for now is take antibiotics before going to the dentist. And he's a physician himself now and has ridden Misson Space without a problem (and countless other rides that have warnings for heart people). Of course, I don't think anyone should do those rides based on someone else's experience, and I don't even think he should ride them, but just wanted to let you know that it's not a guarantee that something will happen to you on those rides. Murmurs aren't really what they mean when they say people with heart conditions shouldn't ride, at least most murmurs anyway.

Same with my mom too, btw. She has had a murmur her whole life and didn't find out till she was 8 or 9. Now she's 60 and has never done anything for it, including the antibiotics prior to dental work and she's had tons of dental work. I mentioned the antibiotic thing to her but she said no dr ever told her about it.

If you really don't like your ped though, then I'd switch, but if it's just the murmur thing then I'd let it go cause lots of kids have them and go undiagnosed for years.

 

[Saxton]

His doctor may not have heard it. I had a congenital heart defect (actually 2) and my doctor never heard anything. Most of the time when I went to the doctor I had problems with asthma, allergies, etc. so he couldn't hear anything. I remember when I was in grade school we had to have 'physicals' (basically we lined up in gym and they listened to our heart & checked a few things) and the doctor mentioned something about a murmur. I told my mother and since she had one she wasn't really concerned. Then when I was getting ready for college I had to have a physical and the doctor finally noticed it so I had to go through a battery of tests. One of the problems was a very large hole in my heart. Large holes make less sound (think of holding your thumb over the end of a hose - the water will hiss but when you release your thumb the water just flows out) so when I had asthma problems or congestion it was very hard to hear. I had to have surgery but I'm a very healthy adult so don't panic. It could just be a situation where your doctor knew about it but wasn't concerned - like my mother's murmur. She's 77 and still doing fine. Take your son to the cardiologist and follow through with any tests they might suggest. I'm sure everything will be fine.

 

[canwegosoon]

Several posters have already brought up some great points. This same son has to also have 2 teeth taken out of his palette. So I will put that on my list for the Caridologist.

I am trying to stay calm about the murmur...he has been fine all this time...but it is the risk he might have be placed in, that upsets me.

The dr. did also ask if he had been on a lot of anitbiotics...luckily no.
Oh and MrFDNY...that's just amazing!!!

 

[Laurajean1014]

Consider yourself fortunate for finding the right dr. to find and confirm the murmur. It could have gone undetected for many years. My sister is 40 and up until about 2 years ago, she was detected with a murmur.

Don't dwell on what could have been - move on and enjoy your son.

 

[justhat]

I forgot to mention the my husband also played soccer throughout college, which required a decent medical evaluation, both by your own physician and also one who did the whole team. Neither of those drs ever found his murmur either.

 

[Blondy876]

I had a heart murmur that went undiagnosed for 12 years. I got a new Dr. when I turned 12 and the first time he listened to my heart he was very concerned. He sent me immediately for an ultrasound of my heart. It turned out that I have mitral valve prolapse. It's not too big a deal. I have to take medicine when I have surgery or go to the dentist Sometimes I have heart palpitations and can't catch my breathe. My family and I felt the same way you do. Why didn't my other doctor see it and what kind of risks did we take because we didn't know?

Good luck to you and your son. Thank God they found it now and can monitor it and you can take the necessary precautions

 

[disneymom3]

From what we have learned it's pretty common for them to miss a heart murmur but for 8 years seems pretty crazy. Our oldest DS has had several health issues as well. He was in the hospital several times before he was 2 months old. The time he was admitted at 2 months, his own ped happened to be the one doing rounds that week. The first day she came in, she said she thought she heard a murmur. Cardiology came in, did the required tests and yes he did have a murmur. I cannot even count the number of Drs who had listened to his heart in the previous weeks. She had obviously listened to his heart too at reg visits but the cardiologist told us that he was surprised she heard it. He said it was a hard one to hear and most Drs would have missed it. Apparently, since so many had!

I hope you get good news that calms you down after seeing the cardiologist. Good luck with it.

 

[The Mystery Machine]

Regular Pediatricians ARE NOT Cardiologists, Endocrinologists, Gastroenterologists, etc...!!!!
This is why I stress going to a specialist despite what your regular PED says.

My dd was born with a severe heart defect, so I got a crash course in "what doctor's & ER's don't know (be very scared at those)".

My dd had the best surgeon and top notch cardiologist at the time, who was doing a "new way" and now everybody does it his way. We were lucky to be directed to their team.
Since then I have seen "bad" ped. cardiologists and let me tell you, you really have to be careful out there.

The burden of your child's health rests on YOU, not your reg. ped. Trust me....

 

[canwegosoon]

Regular Pediatricians ARE NOT Cardiologists, Endocrinologists, Gastroenterologists, etc...!!!!
This is why I stress going to a specialist despite what your regular PED says.

My dd was born with a severe heart defect, so I got a crash course in "what doctor's & ER's don't know (be very scared at those)".

My dd had the best surgeon and top notch cardiologist at the time, who was doing a "new way" and now everybody does it his way. We were lucky to be directed to their team.
Since then I have seen "bad" ped. cardiologists and let me tell you, you really have to be careful out there.

The burden of your child's health rests on YOU, not your reg. ped. Trust me....

I totally agree...but with my insurance, my son's peditrician has to write out a referral. The referral to the Asthma/Allergist was done by another doctor in the same pratice(during a sick call). My son's regular peditrician was very conserative about seeing other specialists. Needless to say I am so glad I changed!!!!

 

[The Mystery Machine]

I totally agree...but with my insurance, my son's peditrician has to write out a referral. The referral to the Asthma/Allergist was done by another doctor in the same pratice(during a sick call). My son's regular peditrician was very conserative about seeing other specialists. Needless to say I am so glad I changed!!!!

I would fire them. I have before when we did have to get referrals.
Now we don't need referrals and we pay for that, but we go to so many specialists that we need ins. without referrals.

 

[misskrystal]

Since I was about 6 I've had a really bad cough and suffered breathlessness. For 6 years my Dr told me I had a chest infection and refused to do anything! When I was 12, I finally saw someone else who told me I had asthma. I suffered for 6 year because of him and now, with medication, I'm fine.

My Mum's going through the same thing with her Dr at the moment, too; everytime she goes with anything her Dr just says arthritis and gives her more painkillers that don't work.

As you might imagine, we're looking into other Drs.