Pediatric Aortic valve issues

I am a concerned mom of a little boy who is 9 years old who was born with a bicuspid aortic valve with mild aortic stenosis and mild to moderate aortic insufficiency.  He was started on Enalapril 2.5 mg twice a day.  He was taken off it in August becasue he had feeling that his heart was slowing down,, felt dizzy and short of breath.  Since he has been off the medication he has been feeling better.  He does complain of feeling a little tired and Short of breath.  He currently is playing hockey and has only complained of feeling tired recently and we have noticed that he plays at the level of the other kids for the first 10 minutes and then is much slower for the rest of the game. As a parent I worry about him and want to know how i am suppose to know to be concerned with him?  I have a tendency to worry about him and watch him closely.  He has had alot of complaints in the past 2 years of various types of chest pain that have been decreased to muscle wall pain.  i just don't know when I should take him to emerg or not?  
Just want to know if you can give me a pep talk and give me some more information.  His last ech measurements were LVIDd 5.0 cm, LVIDs 3.3cm, asc Aorta 2.7 cm, LVPWd 0.70cm, LVPWs1.1 cm, IVSs 1.0 cm, IVSd 0.70cm, RVDd 2.0cm, Ao V2 max; 202 cm/sec
Ao max PG: 16mmHG
Thanks for your time.

Thanks for your valuable time.  

[grendslori]

Have you talked to his pediatric cardiologist about all of this? If your PC felt that it is necessary, he would have restricted your son's activities; something PCs generally don't do. Your son is entering a time in his life where his friendships are going to play a major role in his life so it is important for you to 'let him go and allow him to be active with his friends'. If you don't, the results can be devastating. Chest pains due to heart disease in children is extremely rare because those forms of heart disease lack blood flow to the heart muscle walls; usually they are the Cardiomyopathies or in simple terms: muscle disease of the heart. Often times children will describe the feeling of palpitations as chest pain; they don't like the feeling. Usually the pain comes from muscles in the chest and not the heart itself. I know what you are going through, as do the vast majority of mothers on this forum, it's hard when you don't know what to expect. Talk to your PC, sit down with him and explain how you feel and the fears you have. Take my word for it, you certainly would not be the first mother to cry on a PCs shoulder! Stay on the forum, there's a lot of good people on here willing to support you. Take care!  

[delvalle6]

I see that your son has mild stenosis and mild-mod sufficiency with his BAV. I totally understand what you are going through. My son is just a year younger with BAV, moderate stenosis and severe insufficiency.
It's tough to know when to take your boy to the ER.  I'm no doctor, but these are the signs I look for when evaluating my son.
1. Pallor- does he look really pale-- are his lips/fingernails blue?
2. syncope- is he passing out? collapsing?
3. lethargy- not just tired, but exhausted and disinterested
4. Shortness of breath

Everything else I call the advice line before I do anything.  If my son were having any of the above symptoms (depending on the degree) I would call an ambulance.

I have learned to listen to my instincts- not the emotional panic, but that deep down feeling--you know what I'm talking about.
If you think your son's condition is progressing, talk to his cardiologist, tell the Dr. that you believe your son needs to be re-evaluated.
I can tell my son needs more medical attention now because he's really clingy, his twin won't leave his side, even our dog, Phoebe, curls up with him more. (Phoebe is primarily my oldest son's pet) It's hard to gauge what symptom you are seeing vs. what symptom you are afraid to be seeing. - This is a great forum, but you may want to supplement it with www.valvereplacement.com since a valve replacement may be in your son's distant future.

[shel1234]

Thank you for your great support.  I do appreciate your feedback and I am planning to stay on this forum.  I find it really helpful.  I have not resticted my sons activity right now.  i try to listen to him and he lets me know if he isn't wanting to do things.  i just noticed lately, and maybe it is because of Christmas that he is more tired and lays around on the coach watching TV more than normal.  he does play hockey and is able to keep up with that right now.  I guess I din't really realize where my sone was at until they started him on BP meds and i didn't get alot of information with it.  I guess I am learning to be better prepared when I go to his cardiology appointment and that helps also. Sometimes i wish we lived in a bigger place so that my son could meet other children who have the same issues and see that it is OK.  He sometimes gets frustrated and asks why he has all the problems.
Thanks again.
Have a great dat

[grendslori]

If you find yourself behind your bedroom doors at night crying over your son's heart problems, that would be totally understandable; the thing is it's so much harder to "put a poker face on" in front of your son. Remember that sick children play off of their parents (especially their mother) sympathies and fears. Their symptoms can become much worse. You should never be the one to restrict your son's activities, but instead encourage him to be active with his friends. I can tell you having raised a daughter who spent her childhood years and teen years dying from heart disease, that if your son cannot stay active with his friends, those friends will eventually leave him behind and his life will be pretty lonely. You need to really sit down with your PC (Pediatric Cardiologist)and find out EXACTLY how significant your son's heart problem really is and what kinds of symptoms are significant. CHD is something that occurs in 1 out of every 100 births; it's that common and out of every 100 babies born with heart problems approxiately 95% of those babies/children, a pediatric cardiologist can help to live a normal life. The other 5% need transplants in order to live. Odds are in your favor here. I understand your fears for your son; I used to watch my daughter walk off to school and wonder if she would be alive to come home that night and I wondered if every birthday and Christmas was to be her last. I definately agree with the above posted who wrote about following your instincts; they are your greatest asset as a mother and as the saying goes: no one knows a child better than it's mother. There's a lot of truth to that!