OHS for kids

[Kari72]

I was wondering how many parents on here have children who have had or will have to have OHS due to anuerysms on the aorta. My 14 yr.old daughter has them, and I have to take my 9yr.old son this week to be checked. If your child has had surgery, do they usually handle the surgery better or worse than the adults? Thanks for your time, Karen

 

[aussigal]

There are a few mums on here who have watched their kids go through OHS. From what I have seen and read the younger kids tend to do really quite well. As the kids get older they begin to express similar worries to us adults.

I have 2 sons with BAV's and the younger one has the beginnings of an enlarged Aorta that we are monitoring. My kids watched me go through OHS so hopefully that will give them faith that life can return to normal after surgery. I have always given the boys as much information as they needed about their hearts and have tried hard not to scare them.

I wish you and the kids all the very best. Let us know how you get on with your sons scan.

 

[Gnusgal]

I'm not a parent, but have been a "heart kid" all my life. I had my first surgery when I was 5 (not for the same thing you're asking about, but heart surgery nonetheless). I have to say that it was a lot easier to recover back then than it is now! I don't know how much of that is the number of surgeries I've now had, or the fact that I'm considerably older than I was then. I think kids generally bounce back faster than adults simply because of their innate energy. They are much more likely to be active without being told! Sometimes too active!

Good luck to you and your sons.

 

[francie12]

Just wanted to check in to wish you all the best. My son, about to turn sixteen, has the dilated aorta--and to our surprise his younger brother has one also, but without the leaky bicuspid valve. It's good you're checking out your son. We've known about Matt's heart for four years, and I'm only just now getting adjusted to the idea that he will need OHS. (Little bro maybe won't need it) From what I understand, young people do seem to take the surgery in stride far more easily than adults. It makes sense since they are still growing anyway and possess more vitality.

 

[Kari72]

Thank you all for the replys. I was hoping to hear that the kids do better than the adults. I was a little worried!! My sons appointment is tomarrow, so I will let you know if he has this too. It looks as though I have passed this on to my daughter, so I feel terrible about it. But, she is trying to come to terms with knowing she will someday have to have surgery. We have a bet going between us on who will have their surgery firtst. (I hope I have mine first) so I can understand what she needs when she has hers. Thank you all again.
Karen

 

[Cork]

Kids do bounce back much faster than adults. There is a camp for kids who have had heart surgery and other advanced cardiac abnormalities that I work at in the summer for a week. I've seen many go through surgery and from what the parents have said the hardest part is getting them to take it easy and follow the doctors limitations after the surgery.

 

[DeWayne]

I had open heart surgery when I was 5 (way back in 1959) Things were a bit different back then than they ae today. But I do not recall it being any hinderance to what I did as a kid after surgery. Of course my memory might be a bit sketchy now days but I recall that I never had a tricycle before surgery and the big deal afterwards was my parents bought me one and could not keep me off of it! I remember playing in the hallway of the hospital after surgery with other kids pushing toy cars around and such.
The one disappointment of my hospital stay was never getting to ride in a wheel chair. Back then they had these carts that were sort of like lounge chairs on wheels, that is what they pushed me around in for the days I was in the hospital, I wanted desperately to ride in a wheel chair. The last day I was to be in the hospital my parents took me down to get a wheel chair for that day and the darn wheel chair place was closed. So never got that ride!

Other things I remember back then they didn't use IVs, you got shots. they were not too bad except one that hurt like heck. I called that the spider shot. Then there was the machine they used to suck the phlegm out of your throat, seems they didn't think a kid was able to cough well enough to make them happy. I hated that dang thing, but after they used it they always gave me hot chocolate. And of course back then they had to remove your stitches, which was not exactly a lot of fun.
I think I hated checkups in the years following more than I had a problem with the surgery.

Strange the things we remember huh?

 

[Kari72]

I sure wish my memory is a good as your DeWayne! I can barely seem to remember last week
I am really glad to hear that the kids bounce back quickly. We actually got some much needed good news today. The Pediatric Cardios at the University of Florida gave my 9 year old a clean bill of health today. It seems he has not inherited my problems. Needless to say, I am thrilled by this news. I only wish my daughter didn't have to go through this as well, but I am very grateful that my son is healthy as can be. The Dr.'s do want him to see a Genetisist to rule out Marfans completely. But, for now, all is good! Thanks for your replys, they are very much appreciated!

 

[Karlynn]

I sure wish my memory is a good as your DeWayne! I can barely seem to remember last week

That's because you're a Mom!!! Welcome to VR.

 

[aussigal]

Good to hear your son has been given the all-clear...

 

[Susan BAV]

I didn't reply earlier because I didn't have an aneurysm but...

My first heart surgery, at age 17, wasn't through my sternum. It was actually a more painful surgery in many ways because they cut through muscles around my back to replace part of the descending aorta. I bounced back very quickly, after the first couple of weeks of great misery, but I found the very long scar depressing. My parents told me that they were told by the doctors that the bicuspid valve could be replaced then but that it didn't really need it yet and if they did that I'd have to have it redone every ten years or so; and hopefully I could wait until my 40s or 50s to have it done. So I was thinking 59, not 42, as it turned out...

One of the things I found difficult through school was that I was a healthy looking slender girl but the doctors would never allow me to take any physical education programs and I was occasionally heckled over it by thoughtless gym teachers.

Hope that is helpful. Glad your son is fine; and you and your daughter also have my best wishes .

 

[Mike C]

For your daughter, ask cardio about taking a beta blocker or losatran to slow growth.

Make sure those close to you, know symptoms of an aortic dissection (just in case-pays to be prepared) and dotn take no for an answer from hospitals.

 

[Kari72]

My daughter already knows how awkward being pulled out of gym class feels.
The cardio told her NO strenuous activity at all. Cheerleading tryouts were that week, so when she started to cry, he said she coud do cheerleading but nothing else.
I called Boston, and spoke with a lady there who is involved in the study with Losartan. She said it is showing extremely positive results and they are very excited about this study. I planned to ask my daughter's cardio about it when she goes back in Sept. I don't know if he will try it or not,but I'm gonna ask anyway!

 

[Gnusgal]

I was another one who did not do PE. I know I would occasionally get funny looks from students who didn't know me, but since I lived in the same house my entire life, I knew most of the people at my school pretty well. In elementary I went to PE, but they modified activities for me (when everyone else had to run laps, I only walked), or I went to the library on occasion (must be why I'm a librarian now! ). When I got to middle school I didn't take a PE class at all, and took an extra elective instead. Most people didn't realize I wasn't in a PE class, though, unless they knew me (and they understood). Same with high school. In college I had to take the "lecture" portion of PE, but not the "lab."

Sometimes it bothered me that I didn't take PE, but mostly I was glad I got to have the extra elective. I got to try more things that way!

 

[Kari72]

Her situation is pretty much the same. Since she was dignosed so late in the school year, they have her go to P.E. but the most they allow her to do is walk. I talked with her guidence counsler, and starting next year, they will give her a waiver for her 9-12 grade years. They said she would not have to take anything even closely related to P.E. and it will not count against her for graduation. I was a little surprised by that because here in Florida they can take P.E. on the internet through the state run virtual school. But, they said not to bother, that they will make her an office aide or something similar. Maybe even an aide in the library!!
I am just glad that they are not as strict about getting the P.E. credit as they were when I was in school.

 

[Gnusgal]

I was a little surprised by that because here in Florida they can take P.E. on the internet through the state run virtual school. But, they said not to bother, that they will make her an office aide or something similar. Maybe even an aide in the library!!
I am just glad that they are not as strict about getting the P.E. credit as they were when I was in school.

I had to get a doctor's note in the beginning (at each level of school, possibly), but I don't think I had to get a new one every year. I don't know, since my mom took care of that. I do remember when I was in college getting a doctor's note and registering with the office of disabilities.

Working in the library is always a good thing, in my opinion! I did that one year of middle school. When I was in high school you only needed two total years of physical education. So I really only got two "extra" electives over all 4 years of high school (I used them for theatre). I don't know what the requirements are now, though. They keep changing them!

Tell your daughter if she ever wants to talk to someone who has been there/ done that, I'm always here!

 

[Susan BAV]

Her situation is pretty much the same. Since she was dignosed so late in the school year, they have her go to P.E. but the most they allow her to do is walk...I am just glad that they are not as strict about getting the P.E. credit as they were when I was in school.

One year I was in a new school and was assigned an ignorant counselor who forced me into a "restricted activity" pe class--said I couldn't graduate without it--which was unfortunately a catchall class for an assortment of kids with various "situations." We were mostly unsupervised by the unfortunate and unwilling basketball coach who was assigned our class and I ended up leg-pressing literally hundreds of pounds (for weeks) unsupervised in the weight room in a competition with the other kids. This was absolutely the worst thing possible for me--I didn't realize then--and when my folks found out, they hit the roof and my dad angrily took it up with the school. I needed my first heart surgery several months later (but I can't absolutely say it was related).

I'm sure you'll stay on top of things, Karen. Sometimes the ones who you might think should know better, don't.

 

[Gnusgal]

When I was a kid I always went to summer camp. There was a LOT of walking/hiking up and down hills at this camp. 90% of the time I'd end up riding on a counselor's back or a fellow camper that was bigger than me (which most were). One year my counselor was a complete ***** and told me I couldn't ride on anyone's back and I was just being lazy.

I had been to my doctor just before camp and everything was fine. After camp I went in for another check (right before school started up) and my pacemaker was needing to be replaced. Now, don't tell me it had nothing to do with walking/hiking all over camp. My mom still blames that counselor for draining my battery. Granted, I'm sure it would have happened within the year anyway, but that doesn't stop my mom from laying the blame... And actually, it worked out well because I didn't miss any school for the surgery.

Anyways, sometimes it's other people who are ignorant that can be the problem. I didn't LOOK sick, so this counselor decided I wasn't. Despite the fact that every morning I had to visit the infirmary to take my medicine. Despite the fact that I was smaller than ANY kid my age. Despite the fact that I got winded and exhausted with little exertion... At the time I was too shy to defend myself. Now, I would stand up to the counselor and tell him where he could go.

There are times when a mom can't be with her kid. It's important for the kid to know his/her limitations and to defend him/herself when those limitations are challenged.

 

[Curtsmum]

Hi, glad to hear your son has been given the all clear that must be a big releive. Just wanted to wish you and your daughter the very best for when you have to have surgery. I know alittle how you are feeling my son had surgery when he was 18 months (not for the same reason), he spent 10 days in icu, after his lung collapsed. He bounced back really well. He is waiting for surgery now although we still havn't been given a date. I want the date but don't if you know what i mean. Lots of people here to help you get through it.
ps- your daughter is very pretty.