2 year old with pm

Hello:
My 2 1/2 year old had his pacemaker implanted when he was 6 months old. He had complete heart block. He is doing well but seems to be completely dependent upon the pacemaker. My husband and i notice that in the heat of the summer he tends to get lethargic. He doesnt recover after running around when it's hot as quickly as i think he should. I am wonderng if it's due to the pacemaker. His pm is set so that as he runs around it bumps it up to a higher rate to allow him to have energy. I know that when i get hot i feel my heart beating faster at times. We are planning a family vaca to disney and it;s so hot right now. We spoke to the disney people who said we could get a pass so we wouldnt have to wait on line in case he can't handle the heat but i am wondering if it's necc. He can't tell us yet how he is feeling so i feel like we need to take precautions. But i am wondering how other people deal with the extreme hot weather with pacemaker.
Thank you very much.

6 Comments

HEAT

by peter - 2008-06-26 02:06:16

It is well known that hot weather causes the heart to be more stressed. I always try to keep cool in hot weather by various means. Going into the cool basement. Having a cold shower. Good on Disney. You could go there when the weather is cooler. Cheers Peter

Heat

by OIMAPRINCESS2477 - 2008-06-26 09:06:24

Hello, This question I can prob help you out with. I live in Florida and the weather right now is crazy. The heat is making it alot harder for me to walk long distances. I am in College and have to walk around campus all day. Which is worse since my college is under construction. I find that by the end of the day that I am so tired and my heart is racing so bad that I have to have Campus Safety drive me out to my car. One thing that has helped me out alot is staying hydrated and drinking lots of Gatorade.
For your trip to Disney make sure that you son is well hydrated the night before and the morning of your trip. Have him wear light color clothing. At walmart they carry this neck thing in the Sporting Goods department that you soak in water and wrap around your neck or wrist. I have found that this has kept me cool through out the day. I soak it in cold water then keep it in the cooler to keep it extra cold. Just be careful with this that its not to cold for him because it could put him into shock if he goes from being hot to getting cold very quickly. I would get the pass that they are offering so in case you see he is becoming tired or overwhelmed then you don't have to stand in line for 2 hours waiting to ride for 5 mins.
Good luck and have a wonderful trip.Tell your little one to give Micky a High 5 for me :-)

Britt<3

Thank you

by momof3greatkids - 2008-06-27 05:06:32

thank you for all your information....this is such a great site...especially for mom's with little one's who can't talk yet and tell you how they feel......it's nice to talk with people who understand what you are going through also....my son is so cute and such a miracle.....he almost died twice and i worry each and every day but he is so adorable and loving.....i really appreciate hearing everyone's information....my only problem is i will forever be trying to find out why he got heart block.... i was tested for lupus but nothing came back that would show it....they said there is a slight chance that the lupus antibody's will only show up while i was pregnant but who knows.....i wish i knew! Have a great weekend everyone. Stay cool!!! :)

One more thing

by slarnerd - 2008-07-03 02:07:12

Have you tried running a phone check after he runs around and seems lethargic? That would let you know what his pacer is doing at that time ... or you can note the day & time(s) that he seems off and ask at his next appointment, since his pacer should also be recording these events.

Heat, pacers and disney

by slarnerd - 2008-07-03 02:07:52

My son is almost 2 and has been paced from birth. In his case, he know that the heartblock was caused by the antibodies (my daughter also has heart block but a lesser degree and w/o a pacer). If your son does have antibody related HB, also called neonatal lupus, he may be extra sensitive to heat/sun. My kids also get tired, turn very red, and sometimes vomit when they get too hot. My son's pacer was motion-sensitive, like yours is now and I was concerned that he was "revving" up too much but interrogations showed that he really wasn't having any substantial increases in his HR. Now he is rate responsive (the atrial lead tells the pacer what to tell the ventrical to do) and I haven't noticed much difference, if at all.

As for Disneyland, we have been many times with my kids and have not had a problem, even in the summer. We would go early in the morning when they first open and do all the little kid rides first - there was hardly a line. However, I would say that you should use the special pass if it is available to you - a day at Disney is hard on any toddler, maybe more so for one with a pacer. That said, I did a lot of research on all the rides (for disneyland, not disney world) and all the ones for a child that age are totally pacer safe. Just in case you were concerned about that too.

Finally, who checked you for the antibodies? You could get re-checked by the Neonatal Lupus Registry for free and they can check your son's levels for residual antibodies. Otherwise, it could have been a virus that attacked his heart or something else.
http://www.neonatallupus.com/

You may have seen my other posts on this and/or may already be on the group, but just in case - you may want to join the yahoo group for parents of paced kids, kids with CHB, and/or neonatal lupus.
http://health.groups.yahoo.com/group/heartblockkids/

Best wishes for you and your son!

Sterling

About you...

by worriedmomma - 2008-07-10 09:07:14

I have a son, Max, who is 10 months old and has been paced since birth. He, too, has complete heart block. At first we didn't know why his AV node was damaged, but after much bloodwork they discovered that I tested positive for the SSA antibody. This antibody wasn't due to lupus, but from rheumatoid arthritis that I had when I was in 3rd grade. Have you had any autoimmune problems? You might want to consult a rheumatologist.
We are going to Disneyland in August. It's good to know that we can get special passes if we need them. I'm not worried yet since he's so young. We're going for my 3 year old's birthday.

Best wishes!

Cindy

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I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.