How much excercise can kids do before collapsing?

[gijanet]

Sorry I didn't see this sooner.

Sorry I didn't see this sooner.

I second Lyn. I think I would get a second opinion. Most of the larger pediatric heart centers will give you one for no charge. This would provide some peace of mind for you and get you some of those answers that you need and desire.

I also wanted to add that your son should probably not push it physically. Katie's defects are quite different, but her PC has stressed quite adamantly that Katie is not to try and keep up with the other kids, that she is not to push it. Katie is very, very active, but she has very little endurance when it comes to prolonged physical activity. She understands that it is perfectly okay for her to walk when the other kids are running in PE. It is probably best that your son not try and push it at this point. I know he is disappoiinted and distressed by this physical decline. Just try and reassure him that after he does have his surgery, he will will be able to do things again that he may not be able to do right now. I, too, understand the desire to delay the surgery as long as possible hoping to put in a larger valve to limit future surgeries, but it sounds like y'all are getting close to the stage where it's about time. We tried a repair first in order to do that but it didn't hold up due to her myxomotomous valve tissue and the severity of Katie's defective valve. If it is any comfort, she was only 4&1/2 and they were able to place a small adult size valve.

Keep us posted and get that second opinion. Hugs. Janet

 

[Alex B]

Hi There,

I remember when I was 6 and started getting symptoms and was told that I should "take it easy", my parents were worried about me but surgery didn't seem like the right response. The prognosis for me was to restrict my activities but continue without any operations/medications until it hit SEVERE as tested on the Echo. I was moderate for about 6 years as it slowly got worse. Then I did the balloon valvuplasty (age 13), it didn't go well and I was severe again by age 15, so we did another balloon valvuplasty. That one went well and bought me 15 years, so I finally had the replacement at age 30 (last month).

It was a difficult time for me growing up with 3 older brothers that could do things I couldn't, but I tried and pushed more than I should have at the early ages. I played soccer and basketball, but got really tired, so I didn't play much. Also, I did not know what "normal" was, and I still don't, but maybe soon I will figure out what that is. The one thing I would ask your son, is why? Why does he say, "I"m tired", why does he say he can't go further? I was not in touch with my symptoms at that age, but realized much later that I had them. One big one for me was that my vision would go when I got tired, also dizzyness. I thought it was normal for your vision to get bad when you get tired, so I never realized it wasn't normal, and didn't tell anyone about it. Someone else suggested making a file of everything you have that is in writing, that is a great idea too, as your son gets older chances are you will go through many cardiologists and they will need the backstory, it's easiest if you can give them the story yourself and know the measurables and such.

Lastly, when I think back to my childhood, I only have fond memories, I don't think about the things I couldn't do and the scary parts, like when I was blind, I only remember the happy times and how great my parents were, and how much fun I had! My parents were very careful to not get overly worried in front of me, but I knew they were.

-hope this helps,
Alex

 

[delvalle6]

Thank you all for your input.
Sammy's appointment is this Wednesday. I'm anxious to find out his results. School just started and I've already gotten two phone calls from an excited nurse because he pushed himself too far and then can't breathe or walk.

My husband and I have made some decisions.

First- we are going to collect schoolwork for a week and take the boys on vacation a few days after Sammy's appointment.

Second- I am writing up a business plan and if all goes according to plan we are going to start our own business in the Kentucky/Tennessee area. I've done a lot of research and the hospitals from there on East are better than anything we have here, we'll be closer to family, and the pace of life is slower. Also, if we are running our own business, we will have more control over how much time we can take when he has his surgery. I will still have to get a job at a local hospital to carry health insurance, but I think part time would cover that.

Third- We are going to try to give our kids as much "kid time" and "fun time" as possible before Sammy's surgery. Then, after his surgery, we will plan to do a new thing every year. (we never vacation, so this should be a fun and exciting thing to do and the kids can form great memories)

Fourth- we are going to take it as it comes. I'm in charge of making sure he gets the care he needs, my husband is in charge of making sure I don't obsess.

I'm in that pre-appointment mode where everything makes me a little blue, I hope for the best, prepare for a fight, do a lot of research, take a lot of notes, keep a smile on my face in front of my kids, and hold my husband at night and make him tell me that everything will be alright and things aren't as bad as I think they are.

Believe me- I am not this emotional when it is someone else's family member. I guess that because I am like this I do my job a little better...but I sometimes wonder if I am actually worse than the average family member.

It sure is good to have this place to come. I can vent my crazy here and show my sanity at home.

 

[Lynlw]

Good luck with everything. That sounds like you will have alot going on in the next few months.