How much excercise can kids do before collapsing?

[delvalle6]

OK- so I've been writing about my son's issues and how I can't get answers from the facility he goes to. So..

Does anyone know how many jumping jacks a normal kid can do?

My son's activity level has been decreasing over the last month. I got excited because he seemed to have more energy yesterday. His older brother challenged him and his twin (and the baby) to a jumping jack contest. All four of them were jumping and laughing- but after 40 jumping jacks his legs gave out and he wobbled, then fell down. He stayed there for a minute, got back up and sat on the couch. The other kids continued to jump to 100, my oldest son being the winner....
After my last phone call I don't feel like I can call the advice nurse without having the answer first.

 

[briansmom]

Based on what I see from your other posts, I don't think you can compare your son to "normal" kids right now. It seems that his heart is definitely holding him back.

I'm very sorry that you are in this position, especially since your insurance and doctors don't seem to be helpful.

 

[Lisa in Katy]

Different kids, different answers. Surely you know that? Jumping jacks can be pretty taxing, especially for kids who have to put a great deal of effort into it just to figure out the steps. Probably a walk around the block would be better exercise.

 

[Ross]

I have to ask.

This has been going on since August of 2006 and he's had no surgery yet?

Your occupation says your a Unit Specialist in the Cardiovascular ICU.

Please explain this to me. I'm trying to understand how someone who should be seeing this everyday is asking these questions and has allowed this to drag on for 2 years. I'm not understanding it.

 

[delvalle6]

Ross-
Pediatric Cardiology is very different from Adult cardiology. I work in the CVICU, but I'm no physician. I also don't usually talk to the people I work with about these things- except for lately. I was working in the ER, but with the new cardiac program that started in March I moved up. I'm still learning- but I know enough (now) to know when I'm being ****** around. But it is frustrating because I don't think patients should have to fight to get decent care- when things are the hardest, why make it harder? That part I don't get. I keep expecting them to do the right thing. I'm currently waiting for a phone call from the hospital to see if they can make him an appt.--I requested one, but they simply might say no. If they do, I'll take him to the pediatrician again.
With children, the valve replacement is palliative- it is the first of the surgeries. If they can wait until the valve gets a little larger they do.
So we've been waiting. We found out about his BAV and AS when he was four months old. They had considered doing a balloon-but we decided to wait because one of the side effects can be insufficiency and the MD said it was either going to fix him or make it so he needed surgery. I guess I was scared, so I chose to wait. His valve is very leaky now and he never had that procedure.
So we've been trying to wait until his valve gets bigger so he'll have fewer surgeries. The stenosis is only moderate- but the insufficiency is severe. I am told that the biggest concern is that the ventricle is enlarging and is beginning to have trouble pumping properly. The cardiologist wants to wait.
I have written letters, talked to I don't know how many people... trying to find out if I could go somewhere else where the answers are clear. I know for years I was completely unaware that the aorta was dilated. I had no idea that his ventricle was enlarged until 2006 when he became symptomatic. I have to pry information out of the doctors like its gold- and they are really good at making me feel like I am over-reacting and that it is no big deal.
One of the nurses actually said that to me a couple of years ago- it's no big deal.

 

[delvalle6]

Different kids, different answers. Surely you know that? Jumping jacks can be pretty taxing, especially for kids who have to put a great deal of effort into it just to figure out the steps. Probably a walk around the block would be better exercise.

Lisa, I know that different kids have different levels of stamina- but there is an average... I just don't know it. His coordination is fine and he does beautiful jumping jacks--and he enjoys doing them. We do walk to the park and walk the dog, but he doesn't always make it there anymore. Just the last few weeks we've been having trouble. sometimes he just needs to sit for a while and then can keep walking- sometimes he gets there with no problem- sometimes he starts to cry and tells me he can't make it.
He also loves soccer, but hasn't played in weeks. He loves his bike, but doesn't seem to have the energy to pedal even the slightest hill, so he hasn't ridden since just after the 4th of July sometime. I have four boys, so running and activity is normal in my home... the lack of it catches my attention.
I post about jumping jacks because it is measurable- and easy to see- and because my kids do them often. As an adult, I don't enjoy jumping jacks, but my kids love them.

 

[Nancy]

I keep expecting them to do the right thing

I stopped expecting them to do the right thing many, many years ago. Now, I am surprised when they actually do the right thing. That may sound jaded and I admit it is.

I suffered through so many years taking care of my terribly ill husband. Some of his doctors were absolutely fantastic and saved his life many times over. And some of them were horrible and almost killed him. The rest were somewhere in between.

I decided that if I wanted him to live as long as possible, I was going to have to wring every ounce of good medical care out of his doctors, and I did.

The bad ones either dropped out of the picture or we found someone else. That left only the very good ones, and even at that there were a few at the end that just didn't measure up even though they thought they were brilliant.

You have to be extremely proactive with your son's care. In your position, it will be quite difficult because you are working with these people. But this also gives you a good inside snapshot of the type of doctor they are and the care you can expect.

Use that knowledge to help your son.

He sounds like he is getting increasingly symptomatic.

No one should ignore that. His doctors have to step up to the plate. Don't let them push you around. Be strong and brave for your little son. He can't do it for himself. You have to be the one, like it or not.

 

[Nancy]

I also forgot to add this, exercise in general is not the right issue, nor is jumping jacks. The right issue is how his heart problems are affecting his ability to do thing he used to do.

I don't think kids lie about this kind of thing. They like to get up and run around, and when your son says he cannot do something, and he is crying because he can't, then it's time to have a very serious discussion with his doctors and get some answers. His quality of life is being eroded by his heart issues.

I really haven't followed this thread from the beginning, but what kind of recent testing has he had, and what were the results.

Do you know in black and white just how serious his current issues are? Do you have copies of his test results? If not, you have to get them.

 

[delvalle6]

I really haven't followed this thread from the beginning, but what kind of recent testing has he had, and what were the results.

Do you know in black and white just how serious his current issues are? Do you have copies of his test results? If not, you have to get them.

Nancy,
I know only what I've been able to drag out of the MDs. I also know what I've seen when he is getting his echo. He's has ekg's and echo's. That's the extent of the testing.

He has a BAV, enlarged aortic root, moderate stenosis, severe insufficiency, left ventricle enlargement. That's all I know.

I didn't know that his stenosis was moderate and the insufficiency severe until he went in to get a tonsillectomy. (that was in March of this year) The anesthesiologist told me that and showed me a "summary report" that he had. Otherwise the last thing the doctor told me was that his stenosis "wasn't that bad". I know he had a "z score" of 3.7, but doernbecher said that they do the math differently (?) and that even though that is critical at some hospital it isn't for them. So, I really don't have a clear idea as to how severe his condition is, or even a vague timeframe as to when he should have surgery. I guess that's why his recent behavior has been so disturbing to me. He was really proud of his "100 jumping jack" score in May and just came home and did jumping jacks every day just to show me he could do a hundred..."no sweat mama". Maybe that's why I focus on the jumping jacks so much. He was so proud of himself.
Sammy has always been my "asymptomatic baby". He has a history of not showing any symptoms until he is critical. He had chest pain for several years and never told me. He thought it was just a part of life. He simply doesn't complain until it gets bad. He did that with recurrent respiratory issues as an infant and was hopitalised several times. His brother, on the other hand, is as dramatic as they come.

 

[kfay]

"Ross- I keep expecting them to do the right thing. I'm currently waiting for a phone call from the hospital to see if they can make him an appt.--I requested one, but they simply might say no. If they do, I'll take him to the pediatrician again. "

I'm assuming you have an HMO where you can not self refer. I would call my pediatrician since you seem to have a better relationship with him and tell him you need your son to be seen by a cardio now. Have him take care of making the appt. for you.

"I have to pry information out of the doctors like its gold- and they are really good at making me feel like I am over-reacting and that it is no big deal.
One of the nurses actually said that to me a couple of years ago- it's no big deal."

You should call that cardio's office and DEMAND copies of all of your son's records. You have a RIGHT to have access to all of his medical records and as an adult who has a congenital heart condition, you SHOULD have copies for him so that when he gets older, he will be able to take them to new Dr's so they will know what was done when he was younger.

Once you get copies, I would send his latest echo to a SURGEON and get his opinion. I realize you can't go out of your network, but my surgeon at the Mayo clinic is a congenital surgeon and he happily looked at my records and called me and gave me his opinion over the phone at no charge. If you'd like his information, pm me and I'll happily pass it along to you.

I know you feel helpless in this situation, however, your son needs you to be his advocate in every way possible. You need to take the emotion out of it if you can, and if you can't relate to the nurse at your surgeon's office, go over her head, or just show up there at their office until you get some satisfaction.

Kim

 

[Ross]

Ross-
Pediatric Cardiology is very different from Adult cardiology. I work in the CVICU, but I'm no physician. I also don't usually talk to the people I work with about these things- except for lately. I was working in the ER, but with the new cardiac program that started in March I moved up. I'm still learning- but I know enough (now) to know when I'm being ****** around. But it is frustrating because I don't think patients should have to fight to get decent care- when things are the hardest, why make it harder? That part I don't get. I keep expecting them to do the right thing. I'm currently waiting for a phone call from the hospital to see if they can make him an appt.--I requested one, but they simply might say no. If they do, I'll take him to the pediatrician again.
With children, the valve replacement is palliative- it is the first of the surgeries. If they can wait until the valve gets a little larger they do.
So we've been waiting. We found out about his BAV and AS when he was four months old. They had considered doing a balloon-but we decided to wait because one of the side effects can be insufficiency and the MD said it was either going to fix him or make it so he needed surgery. I guess I was scared, so I chose to wait. His valve is very leaky now and he never had that procedure.
So we've been trying to wait until his valve gets bigger so he'll have fewer surgeries. The stenosis is only moderate- but the insufficiency is severe. I am told that the biggest concern is that the ventricle is enlarging and is beginning to have trouble pumping properly. The cardiologist wants to wait.
I have written letters, talked to I don't know how many people... trying to find out if I could go somewhere else where the answers are clear. I know for years I was completely unaware that the aorta was dilated. I had no idea that his ventricle was enlarged until 2006 when he became symptomatic. I have to pry information out of the doctors like its gold- and they are really good at making me feel like I am over-reacting and that it is no big deal.
One of the nurses actually said that to me a couple of years ago- it's no big deal.

Thank you for the clarification. I just couldn't understand the situation with just the given details and length of time this has been going on.

Sorry for what sounds like an inquistion.

 

[Nancy]

He had chest pain for several years and never told me. He thought it was just a part of life.

I can relate to that. My husband had heart problems from his teenage years when he got rheumatic fever. He just ignored a lot of his symptom, thinking it was all normal, and he did this his entire life.

I had to learn to eyeball his actions and measure them that way. When I would ask him about how he was feeling, he just had no reference point about what was normal for most people. His doctor sometimes got frustrated with trying to ask him the normal questions. He would tell them everything was OK. But when the test results came back, they were disastrous.

I had to read everything I could find about his various conditions, about what was normal for this and that, and how he should be doing and feeling normally. It took a very long time, and I also asked many questions of his doctors, and they educated me on a lot of things.

I urge you to do the same. That way, you won't be so much in the dark about your son's conditions. And you will be in a better position to speak with his doctors on their level, instead of them thinking you are clueless.

You have the right to all copies of your son's records, it is the law. They can charge you a minimal cost for copying them, but under the law, they cannot refuse you. Get those summary reports from the anesthesiologist, and any other doctor who has done tests on him, and start a file.

Observe your son every day and write what you see down. That way you will have a record of how things are progressing, good or bad. And you can bring this in when you talk to his doctors.

It is going to take a lot of effort on your part.

You cannot rely on your son's assessment of how he is feeling. He doesn't know what "normal" is.

You can try to help your son discuss how he is feeling, it may help some, and might make him more aware of his own body and how it is working for him. I do think this is an important thing to help your son with. As he gets older, and is no longer living under your roof, he will have to know about his conditions, how he is feeling and be able to summon help for himself when he is not feeling well, and be able to describe how he is feeling to emergency personnel, or his doctors. So for him to get in touch with his body is crucial.

 

[delvalle6]

Thank you for the clarification. I just couldn't understand the situation with just the given details and length of time this has been going on.

Sorry for what sounds like an inquistion.

I don't feel like it's an inquisition. Plus, going over it sometimes gives me clarity. I haven't been the most active member- and I guess that's why the situation isn't always clear. I've come to a point in my life where I just want a clear and dry answer for everything--no more up in the air.

Just an update. I called the hospital again since they haven't called me back since yesterday. I got an appt- Sept. 9th. I think I unloaded a little on the poor guy who made the appt. I told him that I would be taking my son to the pediatrician in the meantime since they couldn't get my son an appointment in what I consider to be a reasonable time frame. **sigh** I wish I could swap situations with him and let me be the one who has to go through it all.

 

[briansmom]

I will agree with Nancy and say that you have to be in charge of your son's care. I pushed REALLY hard for doctors to take my son's chest pain, weight loss and lack of stamina seriously. They didn't - until he had a massive heart attack. He pretty much died on the operating table and had to get an artificial heart assist device in order to live. He now has major heart damage and will probably need a heart transplant at some point. My son now has a group of fantastic doctors (not the ones that ignored him before), but I will NEVER take anything that doctors say at face value. I do a lot of research and I am very proactive in getting things taken care of. Do not let them wear you down. I know it shouldn't be a fight, but it often is. Your son sounds really symptomatic and it may be close to doing permanent damage. I am really glad that you got an appointment.

 

[delvalle6]

Deanne,
Thanks for the reply. It is my worst fear that something will happen because of my actions-- or lack thereof. I feel like I am not doing enough and the hospital makes me feel like I'm a pest and that I am rushing things. I can't imagine what you went through--I think I'd lose it on someone if my son coded on the table due to their lack of attention.

Nancy,
You said "I urge you to do the same. That way, you won't be so much in the dark about your son's conditions. And you will be in a better position to speak with his doctors on their level, instead of them thinking you are clueless. "

I'm not the most patient person in the world, so waiting is difficult. I prefer clear cut answers and tend to ask the same question over and over if the response isn't clear.
The physician knows that I understand what they tell me, but she simply doesn't offer up information. So if I don't ask, she doesn't tell me. I've done quite a bit of research, but they don't seem to have the same system --or something- as everyone else. My biggest example is my son's "z score". I've seen that hospitals around the nation consider greater than 2.0 on a z score as a critical result. As a matter of fact, the articles I read say that when the z score exceeds 2.0 that surgery is necessary imediately. When I confronted the hospital with the "anything >2.0 is critical" information they told me they do the math differently and that his >3.7 z score isn't a problem.

I guess that's why I want to talk to someone else. I get vague answers, sometimes clear ones if I push- and my concerns are just blown off.

I will take the advice I've been given and get full copies of his records. I think that I could learn a lot by having those. My father passed in March and my sister just sent me his records- it is amazing some of the things that were noted in his chart that no one was aware of. (my sister had medical POA- so she should have known some of these things)

 

[briansmom]

Please keep us posted on how you and Sammy are doing. Feel free to PM me anytime they are wearing you down or telling you that you are overreacting. Moms KNOW when their kids are struggling.

Being the mom of a sick child is not easy....

 

[Thankful@43]

For what it's worth, I agree with the comments about being pro-active with the health and welfare of your child. In my case as an adult my doctors pretty much blew it off until I became more symptomatic. In my opinion (sorry, we all know about "opinions"...) if the symptoms are severe enough to limit his normal activities then it's time to be pro-active what ever it takes. Best wishes for you and yours.

 

[francie12]

Your son's doctor sounds a lot like my son's first doctor--who also did not feel it was necessary to share facts like "dilated aorta." We changed to a doctor we really liked and have been with him ever since. The good thing about the experience with the first doctor though was that it led me, by necessity, to learn how to interpret the numbers on the echo report and track their growth for myself. I request a copy of the report from every visit and keep a running record of how they are progressing. I'm aware of how high the numbers have to be in order to reach surgical dimensions, and I'm also aware that being symptomatic is significant and can influence the decision to operate sooner. My advice is to be in possession of the hard facts, the data--it is the way to feeling safe and in control. Also, if possible, look until you find a doctor you can trust. Best of luck to you and your son. I'm rooting for you.

 

[Lynlw]

I would also suggest getting a second opinion from another CHD center. I know your insurance can be a problem, but from my experience as well as MANY Heart Moms I've talked to most CHD ped cards /surgeons will give 2nd opinions from the records, a tape or cd of any testing ect as a courtesy

 

[Duff Man]

I wouldn't do much exercise, if any, until the issue is fixed, personally.