Heart issues...

[jtlund]

My 5 year old son has a single ventricle heart defect and has had four open heart surgeries. I haven't read through all the threads here but can someone just tell me if I get a letter from his cardiologist if we could get a medical pass for him somehow? I've gotten a list from his cardiologist on what rides are okay for him to go on but I don't think he'd last waiting in long lines for a long time. If we just use the fast passes, do you think we'd be okay?

We're going October 19-26.

 

[Cheshire Figment]

Hi and to disABILITIES!

I would suggest you start by clicking on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. Post #6 would be a good place to start. And a letter from a doctor (a) is not needed, and (b) will not help. You will have to be able to indicate his needs.

Or, if you want an easier route, click on the link in my signature.

 

[jtlund]

I will start there.

 

[MousekeMommy]

Hi there!
We went last summer with my son who has a heart condition and pacemaker at age 4. It was July and, trust me, his endurance was low!!! We used a stroller as a wheelchair to compensate for the heat and physical exhaustion of long walking distances, and he still fell asleep at lunch time and right after dinner. We used fastpasses as well as the stroller as wheelchair GAC . . . it helped tremendously with not waiting in the sun or having to walk the really long lines (Pirates of the Caribbean comes to mind . . ., I'm sure there were others . . .) My overall advice would be to get as much help as you can (fastpasses, GAC if/when applicable) and take plenty of breaks/take it slowly.) A "good" half day at the park seeing half the attractions is far more enjoyable and memorable than an overwhelming/miserable whole day . . .
Sending Prayers and Pixie Dust!

 

[jtlund]

That's exactly what I needed to know. I reserved a stroller at WDW and Sea World even though he's 5. I figure if we go early and get as many fastpasses as we can, we'll be okay. He's doing great now but I figure I want to be as prepared as we can be. I'd hate for him to miss out on anything. We've been saving a LONG time for this trip and I don't want him to be so worn out he misses anything. We can also take a break mid-day and go back to the hotel and rest. THANKS AGAIN!

 

[SueM in MN]

I would also suggest looking into things that help you to know where it's busy and where it's not. Those would include things like touring plans in books like Passporter or the Unofficial Guide and also services like Tour Guide Mike (a THeme Park Board sponsor).
By knowing where it is not busy, you can go to those places and avoid the crowds (and the waits) that go along with the crowds.
Even during busy times, you will find if you go to an attraction at the wrong time, it can be a 90 minute wait. By going at the unbusy time, your wait may be just as quick as it takes you to walk thru the queue.

 

[janie91]

I to am a CHD mom and my 2 year old has a pacemaker. We have a trip coming and I was wondering about pacemaker warnings on attractions, did you come into any problems with this? I would also like to know what CHD your children have if you don't mind to share?

 

[MousekeMommy]

Hi! I don't mind sharing. Actually, my son doesn't have a CHD. He had a virus when he was 6 months old and his AV node suddenly stopped working all the time (2nd degree heart block that progressed into complete or 3rd degree heart block within a year due to the strain of growing/crawling/walking/etc.). He went from a normal infant before the virus to a chronically lethargic one with a heart rate of 40 - 60 bpm (should be in the 90s for infants?). So the "theory" is that the virus attacked his heart . . . Anyway, he started walking at 10 months, but due to his heart not functioning well, he was getting dizzy and falling down after taking about 5-10 steps at 16 months old. And that's when the 24hour monitor showed that his heart was stopping to rest for 2-3 seconds while he slept, and the decision to implant a pacemaker was made. Thank God that we have an excellent pediatrician who caught his condition and a world-class Children's Hospital cardiac unit just 20 minutes away! We couldn't have gotten any luckier. From what I understand, many children with my little one's problem aren't diagnosed and just don't wake up one morning when their heart decides to take one of those long rests between beats, or they just keel over on the baseball field as an adolescent . . . Anyway, with the pacemaker, he'll just need it replaced every 5-10 years of his life and he has few limitations, considering other children with heart problems. He has even "grown into" his once "enlarged" heart (the atria were compensating for the non-working ventricles), so we believe that the muscle is growing stronger instead of weaker since it has received help from the pacemaker. (Sorry if I'm going on a bit much, I'm just really excited about being so Blessed!) Anyway . . .
We didn't have any issues with the pacemaker at Disney--we didn't encounter any large electromagnetic fields and didn't set off any alarms that we know of (I had his card ready, just in case . . . we've had some issues with this at Target and Walmart). And the rides were just fine, because he was under 42" and couldn't go on some of the ones with warnings, anyway. I would be a bit concerned about space mountain, being so close to an electromagnetic track (is that the right name?), but we won't have to worry about that for a few years. Are there any particular rides that you want to do but aren't sure about? I'd list all the ones that we rode, but that's a lot . . . and I've already taken up a lot of space. But I'm more than happy to give you any/all information that I have--I'll answer any questions, because I know that I was very nervous about going, too! Mostly, any issues that we had were heat and fatigue issues, and that's just the nature of the game with his heart condition, and Disney helped us out with that by allowing us to use a canopied stroller as a wheelchair. We also took along a battery- operated fan and tons of water, which helped immensely.

 

[blondietink]

My son is now 18 but was born with a complete endocardial cushion defect with valves that were not in working order because of the huge hole in his heart. He had open heart surgery at age 8 months and now only has a pinhole VSD. We have been told he will need a new mitral valave at some point, but the doctors wanted to wait until he was done with puberty so he would only need one more surgery. He also had scoliosis surgery when he was 16 We jokingly call him our million dollar boy.

Anyway, he still fatigues very easily, especially in the heat, so we now use an adult travel chair for him and get a GAC to use when there is no fastpass option. We have never had a problem. We cannot go on rides that go upside down. I prefer that he stay off rides with steep drops like Splash Mountain, but he goes on anyway.

Good luck and have a great time!

 

[jtlund]

Alex, our 5 year old, was born with Triscupid Atresia. It's a single ventricle heart defect. He has his left ventricle but his right is hypoplastic and doesn't work. He's had 4 open heart repair surgeries to get his sats up in the high 90's. It's alot more common for kids to have their right vents and not their left so we're blessed and grateful he has the left as it is your main pumping chamber. He is done with the scheduled surgeries but as you know you can never say you're never really DONE. I met with our cardiologist to go over which rides are safe for him. He could never ride one of the drop type rides or the high force roller coasters when he gets older. BUT - he can ride alot of things. I think it's important for everyone to speak directly with your doctor about what is safe for YOUR child. Every CHD is different and there are some things that some kids can do that are dangerous for others. There's another child here with the same defect as Alex but he's had other issues. He can't ride some of the things that we'll be able to.

I worry more about the heat down there - we've never had him in the South where the humidity and heat are like that. I'm hoping because it's October, he can tolerate alot more. Right now at 5, he doesn't know his limits and goes from 0 -60 and back down in no time.

Nice meeting all of you!
Judi

 

[janie91]

I'm glad to hear there aren't many pacer warnings. I did speak to our cardiologist and he said most things a 2 year old does are fine for him we don't really have to address limits at this point. I'm sure most rides he is able to do are fine where is heart is concerned I was just unsure about pacer interference. I'm glad to meet other heart Moms here on the disboards. We are in a local Mended Little Hearts support group and it's been a blessing to us. I'm looking forward to our trip but am anxious about being away from his doctors. It will soon be a year since his open heart surgery but I like the comfort of knowing we are only 90 miles away from them where we live and worry about being so far from them if something should arise.

 

[jtlund]

When are you going? We're gonna be there 10/19-26 of this year. We have a timeshare that a friend gave us but I also bought two nights at the Poly so my boys can see what it's like to be right THERE.

Anyway - It's always scary being away from your cardiologist/docs! I remember when Alex was 2 and recently out from the last surgery. I was always scared to go away - felt safe HERE. He's now 5 and his last surgery was in 09/05 and I've only recently started getting comfortable when he gets a COLD instead of paranoid something's wrong. To be totally honest, I've never spent the night away from him (or him from me) and this is our first vacation as a family in 5 years. My husband has been on the guy fishing trips, etc. but not me. I can't wait to see his face light up seeing all of the Disney magic for the first time! My husband is 33 and he's never been either. I'd been there 5 times by 18 but haven't been since and I'm 44.

Where do you live? I'm in Minneapolis. I belong to Saving Little Hearts and another group of heart moms with HRHS defects like Alex.

Oh, just in case, I'm getting a reference from our doc of where to take him if something were to happen. Can never be tooooo prepared, right?

 

[Cheshire Figment]

I would suggest you look up the Arnold Palmer Children's Hospital a little bit South of Downtown Orlando (Kaley Road Exit (82) of I-4). It is part of Orlando Regional Medical Center.

But the closest hospital to WDW is Celebration Hospital, which is also part of a major hospital system.

 

[Anne MN]

My DD who is now 13 was born with Tricuspid Atresia also. She developed the "nasty side effect" of the Fontan- PLE. She had a Heart Transplant back in March. She still has her pacer unit in (will be taken out sometime ) Did not run into too many things she couldn't do with pacemaker, but most of the thrill rides that have warnings, she was either not tall enough or didn't want to go on.
DD did her wish trip at Disney, and we had done Disney before. Disney is one of the few places that she feels really "special"
hopefully we will be able to go again in a couple years

 

[SueM in MN]

we didn't encounter any large electromagnetic fields and didn't set off any alarms that we know of (I had his card ready, just in case . . . we've had some issues with this at Target and Walmart). And the rides were just fine, because he was under 42" and couldn't go on some of the ones with warnings, anyway. I would be a bit concerned about space mountain, being so close to an electromagnetic track (is that the right name?), but we won't have to worry about that for a few years.

WDW doesn't have any attractions that list electromaganetic interference problems. I think I remember they used to, long ago (like 10-15 yrs ago).
I'm not sure what is different; whether they have electomagnetic fields that are shielded better or don't have any or feel that people with concerns about those would not be riding any of the attractions with warnings. I do know that devices like pacemakers are shielded against interference better than they used to be. But, the best place to get information about that might be the manufacturer of your child's pacemaker.
If you go to the disABILITIES FAQs thread, post #3 in that thread does have a link to a past thread about magnetic fields.

I met with our cardiologist to go over which rides are safe for him. He could never ride one of the drop type rides or the high force roller coasters when he gets older. BUT - he can ride alot of things. I think it's important for everyone to speak directly with your doctor about what is safe for YOUR child.

All the rides with warnings are well marked. There is a warning icon on the park maps, on signs at the entrance to the queue and also before boarding. So, you don't have to worry that you will get on one by mistake.
Also in the disABILITIES FAQs thread, post # 3 has links to the Guidebook for Guests with Disabilities for each park. The Guidebook does give a list of attractions with warnings.

I'm glad to hear there aren't many pacer warnings. I did speak to our cardiologist and he said most things a 2 year old does are fine for him we don't really have to address limits at this point.

Most of the attractions that are OK for a 2 yr old are pretty tame.
The only things I can think of that might cause any questions would be:
- Mickey's Barnstormer, which is a small version roller coaster
- Tomorrowland Transit Authority, which is tame, but uses a magnetic induction motor. There is no warning listed for that attraction though.

 

[jtlund]

Alex had his Fontan in 9/05. He was 2.5. He was the second one at Children's Mpls. to have it without having to go on bypass. It looked like we were going to be out in a week but then he caught pneumonia and we were in another 3 weeks. Sometimes I think it's more dangerous being IN the hospital, than recovering at home with all the bugs, etc. that go around in there.

Is your daughter seen by Children's Heart Clinic? We're in MN as well (Mpls suburb) and my son's cardiologist is Dr. Singh at CHC. Do you have a caringbridge page? My friend's dd just had her heart transplant (she has HLHS) but had to go to St. Louis to get it. She was on the list here for a year or more and then in St. Louis she had 2 in a couple months - the first wasn't suitable but the second was the charm. She's back home now and started Kindergarten. Amazing what they can do these days, huh?

Judi

 

[Anne MN]

CHC- brings back memories
Jess saw Dr. Burton, but ALL the Dr's know jessica! She loved to see Dr Singh- loved playing with the clown on his stethscope.
We are now out in the Seattle area now (I am active duty Army) and she was transplanted out here. Most of the staff at CHC knew when she was transplanted, and most of the nurses at the hospital. she was a "frequent flyer"
Jess was evaluated at Uof M and we I don't have a lot to say except that it was not a good experience! I know of of few others who were transplanted in St. Louis and were waiting at childrens (they were actually listed in both places)
Hopefully we will get back there one of these days to visit, with my schedule going crazy and school, not possible right now. (my unit is getting ready to deploy)

 

[jtlund]

Dr. Burton is my 3 month old great-niece's PC. I wanted to refer my niece and her hubby to Singh but he wasn't taknig any more patients. He still has that clown! It's old and crusty but it's still there!

Alex's caringbridge page is www.caringbridge.org/mn/alexlund
My niece's is caringbridge.org/visit/emersonm

She has alot more issues than Alex did - can't believe it happened (CHD) twice in our family. Scary. My friend's daughter had awful experience where you did here and so did another family. Dr. Herrington has resigned, did you know that?

My e-mail is judith . lund @gmail

I'd love to chat more with you.