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2003-kaitlyn diagnosed w/innocent murmur, no defects, now 2008, has 3 l...
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2003-kaitlyn diagnosed w/innocent murmur, no defects, now 2008, has 3 leaky valves?

1st let me tell our story.  My middle child, Kaitlyn, was born June of '06.  At her 6 month checkup, Dec '06, the dr. (one of about 6 that rotate) made the comment "I see she still has her heart murmur.", well this was actually the first time i had heard about it.  having heart defects in my family, i started freaking out.  They scheduled her to see a cardiologist from the louisville area who comes to murray and the appt went good.  she had an echo, ekg, and the dr. checking her from head to toe.  they told me that it was an innocent murmur and just to bring her back when she turned 3.  2003-took her back to the same cardiologist, they done a repeat of tests, and the dr said it was still innocent, and released kaitlyn as a patient.  Kaitlyn weighed 5 lbs. 14 ozs. at birth.  at 3, she only weighed about 22 lbs. and had been diagnosed with failure to thrive.  moving on to present 2008-Kaitlyn had just turned 8, weighed in at 47 lbs.  we switched pediatricians so we wouldn't have to travel so far, my oldest and kaitlyn catch any and everything thats going around, anyway, new dr. saw kaitlyn and of course listened to her heart, for about 10 min.  and said she still had her murmur (I did know this time, everytime she had a checkup i would ask and she always had it), well, dr. poppins wanted to have it checked since it had been 5 years and he said her murmur was very loud.  at least a grade 3, systolic ejection murmur, coming from base of heart.  
so we go for an echo, they find:
mitral valve regurgitation-trace, tricuspid valve regurgitation-mild, and pulmonary insuffciency-mild
so we go to a different cardiologist and they do another echo, and ekg, and she tells me that everything is fine.  nothing to worry about.  don't ever need to see a cardiologist again...the same words as the first cardiologist.  I had the report from the first echo and there was nothing at all mentioned about any problems with the valves, and I called them to make sure there was not any notes in her chart that might have mentioned any of this and they told me that it was not seen during any of the previous echo's done between 2000-2003.  I had already told this to the '08 cardiologist and shown her the report that i had, before she told me that everything was ok.  
I know that pediatric cardiologists see alot of kids that have severe heart defects, and that kaitlyn's is a minor thing, but is it really too much to ask her to come back in a couple of years to recheck or at least have repeat echo's done?
I mean, within 5 years, she went from innocent murmur no defects in any valves to now having 3 out of the 4 having trace to mild regurgitation.  Am I over-reacting, or does it seem like a real concern to you guys?  Also, she has other problems that have "no real reason", such as:  pain in her knees and recently her elbows, with no swelling or redness, she gets short of breath especially when she's active or when she lays down to sleep, and she has had chest pain a couple of times.  Any input is very appreciated, anyone with any experience with these valve problems i'd love to hear from you.  please any advice is needed at this point.  thanks again.  crissy
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306245_tn?1244388567
My little guy has had a tricuspid vavle leak and from what his doctor said that everyone has one at one point in their lives and it is noting to worry about they will come and go. I wonder why her murmur would be getting louder unless she was sick or did running around before she went to the doctors and I feel that people know their kids better then anyone else and  if you feel something isn't right then you keep going.go with your gut instinct
I can't say why she is having pain in her leg and arms, she might ahve something else going on. like RA(junior version) something else.
I hope things go well and you can get to the bottom of things.
Don't stop until you are comfortable with your gut feelings. It has taken me close to 5 years to FINALLY have the doctors know that something is wrong. Most doctors, specialist knew like asthma docotr and ENT even speech therapist see it however it is the cardiologist.
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Avatar_f_tn
thanks, I'm trying to get all the info straight as far as with the drs. she has seen so far.  after all this time i now know how important it is to keep up with medical records, and i'm on my way to getting it right.  like i said before, i was not told that kaitlyn had a murmur when the drs first heard it so right now, i have no idea exactly how old she was when they 1st heard it, all i do know is that it was sometime before she was 6 months.  i started looking at kaitlyn's echo report, i did get a copy of this, and was just curious about something.  here's what it says...

indication: murmur
BEA:  0.00m2
UPI:  transmission
Limit Indicator:  >25 and <=50  (this one gets me, does this mean age?  over 25 and less than or equal to 50???  if that's the case, then something is really off-
2-D Complete:  **-**-** GT     LIMITED

anatomic evaluation:  
LA Dim: 30 ; normal limits: 17-27mm              LVDD: 41 ; normal limits:  24-36mm
AO Dim: 19; normal limits: 13-22mm              LVSD: 27 ; normal limits:  nothing listed
LA/AO: 1.6;1 ; normal limits: 28-1.2mm          %FS::34  ; normal limits:  25-42%
RVDD:  12  ;  normal limits:  4-15mm             Septum: 5 ; normal limits:  5-7mm
LVPW:  6  ; normal limits:  5-7mm

Hemodynamic Evaluation:
Valves:  AI:0, PI: MILD, MR: Trivial, TR: MILD
nothing listed under vessels or shunts,
other finding just has
RCA:                                        LCA:
Pul Annulus                              AO Annulus

Doppler Echo:
under velosity of:                        under Gradient:
LVOT vel:  nothing listed             nothing listed
AO    vel:   1.2 m/s                     nothing listed
dese? vel:  1.2 m/s                     nothing listed

nothing listed under:  mpa vel, br pa vel, pda vel, vsd vel, tr vel, or rvsp vel
  
conclusions:
normal biventricular systolic function, trace mitral regurgitation, mild tricuspid regurgitation, and pulmonary insufficiancy.  atrial septum is not well seen.  soppler of aortic arch and descending aorta within normal limits.  no pericardial effusion.

some of the letters are not well seen,  the copy i received was a fax, any questionable letters or numbers i put a question mark beside...
if i was not suppose to list these here i do appologize,  if by chance you, momtofourboys, or anyone else knows how to explain some of this please do so...thanks again...crissy

mom to:
Brooklyn  11-21-98
Kaitlyn     06-23-00
Aiden       06-16-06  and  my furbabies, Boxers bowser and miley, their 6- 3wk old pups, tyson american bulldog and prissy, our sheltie...
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Avatar_f_tn
i am 21 and have tricuspid and mitral valve regurgitations. I also have a very loud heart murmur. When i was little i was told i did not need to see a cardiologist because most people grow out of the valve problems and murmurs during puberty. I recently went back and i still have them. However they say most people, especially girls tend to grow out of them. That may be why they are telling you not to take
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Avatar_f_tn
sorry my comment got cut off. That may be why they are telling you not to take her to the cardiologist. Also the chest pain or shortness of breath while being active is often caused because with the backflow through the valves. It does not allow the blood to flow as fast as it usually would when she is exercising. If you were to tell her doctor about it he/she may be willing to give her a note to not do anything to stressfull in P.E. such as running the mile. I had to do that because i experienced chest pain while running. I hope this helped.
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Avatar_f_tn
I think I would wait a year and have her retested. I found it interesting that there were areas not listed on the echo. Also the fact that she has joint pain ( I am not referring to 'growing pains which affect the long bones of the body) I'm talking about JRA (Juvenile Rhuematoid Arthritis. Have you paid attention to her joint pain? EXACTLY where the pain is located? (My daughter had JRA and severe heart disease requiring transplant) Some of what you wrote, hit a cord.
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Avatar_m_tn
I am not a doctor.

In the echo world, the pulmonic, tricuspid and to a lesser extent the mitral valve are all expected to leak a little bit.  That's just the way people are built.  The only valve that shouldn't leak is the aortic valve, and from reading the report it doesn't.  They rate the leakyness of the valves on two scales, but we will go with the one that your  cardiologists are using.  The scale goes from none to trace to mild to moderate to severe.   For trace and mild leaks on the three valves (the aortic being the exception), there is nothing to do for them and she can live without echos for a long while.  If there is a moderate leak or a severe one, then closer monitoring and perhaps intervention would occur.
   Your baby has had 5 echos if I'm reading correctly that are normal.  Normal function includes trace and mild regurgitation for the three out of the four valves.  Not every cardiologist explains that and they just assume that non-doctors know that, when obviously they don't.  If the aortic valve leaked at all, which it hasn't according to the reports, then that would be something to watch too.
    If there was something to go wrong with the valves, it would have happened already.  The other syptoms (symptoms) you describe I can't help you on.  On the chest pain and shortness of breath, since the heart has been ruled out as a cause of trouble, they may have to look in other areas to see if they can help her.  In most cases, if the chest pain is sharp or stabbing, it is usually not cardiac related.  I hope this helps clarify some of you issues, though it certainly doesn't take care of all of them.
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