Hi everyone,

I'm so glad I discovered this site. I have an 18 month old who had a pacemaker implanted 2 months after he was born due to complete heart block -atrioventricular. As he's growing he seems to be having less complete night sleep as he wakes up about the same time almost every night (between 3 and 3:45AM), kicking, stretching forcefully, and upset. He still tries to go to sleep as you can see he's loving his night rest but something is bothering him. I don't understand why this happens. Is there someone out there who's experienced, or is experiencing this type of problem with their child, or with yourself? Help, because we can't sleep.


Not sure...

by queen_beez - 2007-06-09 08:06:36

But is he kicking like he is in pain or can he tell you anything. I ask this because I was experiencing something like this in the middle of the night when I first got my PM. I went to my EP and they did an adjustment. My PM was set to do a "checkup" every night at 2 am. It was a horrible feeling and sort of like a shock. I described it to my doc and they figured it out right away. I am sure Smitty can explain it better but what was happening had something to do with my heart not "liking" the pacing and the test was checking my ventrical(???) pumping. Well my heart was not happy with the action and would cause the blood to not be able to flow correctly through my heart. I think possibly your sons problem could be solved if you first have the docs check his PM and if it is programed to do the checkup and see if the times are corresponding with the times he is waking up at night. Then if it is the case have them simply turn that function off. It is not a problem to do so.,as long as you continue to get him checked with his 3 months checks as ususal.
Hope I didn't confuse you and again hopefully Smitty will chime in as he can tell you more "technically" as to how to approach the doctors.
Take care and good luck with your son.
Truly, your "strange" friend,

do not fool around

by jessie - 2007-06-10 01:06:17

with the baby if i were in your shoes i would contact his paeditrician and his cardiologist to find out why this is happening. he is an infant and has a full life ahead of him. this is too important not to take him and have him checked. all the best with the little guy jessie


by tcrabtree85 - 2007-06-10 02:06:32

Hi and welcome to the club! Your child is very young and as Jessie said your child does have a full life ahead of him. I would make an apt. with the cardiologist to just get the pm checked out, it may need some tuning as I put it.
I had the problem and it seems common that if they have the pm set to be scanned they usually have it set for the middle of the night. This was frustrating for me so they finally turned it off.
I wish we all had more answers for you but please keep us updated. I will keep your entire family in my prayers and especiall your son that he will be able to get rest fully soon.

paced child

by slarnerd - 2007-06-11 03:06:42

My son is 11 months and got his pacer at 2 days of age, also due to CCHB. My daughter is 2 1/2 and has just 2nd degree heart block - no pacemaker. My son usually wakes at about 4 am too. If he was my first, I would be sure it was the pacemaker (don't you always wonder when they seem to cry for an unexplained reason, if it's the pacemaker?). However, my older, non-paced, child also often wakes between 3-4 and has gone through phases where she does it habitually. Speaking with other mom friends, this is not uncommon, especially under age 3. Still, if you are concerned, you should certainly ask your child's EP. The neat thing about having a paced kid is that they can look at that time of day and see if there was an interference, elevated HR, etc.

Please consider joining the yahoo group with other parents of pacer kids. You may find more answers there. http://health.groups.yahoo.com/group/heartblockkids/

Waking at 4 a.m.

by Vicens - 2007-06-11 05:06:27

Hi: I used to wake up at 4a.m., too, before my implant and I still do,every now and then. It seems that at that time the body is depleted of hormones (cathecolamines ?) and is at its lowest state of health. It was at that time my Holter showed my heart was stopping for a couple of seconds before restarting, it is the hour in the night when terminal patients are more at risk of dying, when asthmatics will have their worst attacks and so on.
Well, I'm no doctor, it is just my opinion.


by FRidge - 2007-06-12 12:06:37

Thanks to everyone of you for your comments and suggestions. I've scheduled a check up with his cardiologist for next week. He's on yearly visits now to his doctors as he's been doing great. He's not a crying baby at all. Always happy and knows how to conserve his energy for sure. So I know he's not just waking up as he does his best to try to go back to sleep. But I will definitely mention to the doctors to check his PM to his wake up time. He does kick when he wakes up, and sometimes grab his chest or keep tapping on his chest. It's scary because he can't tell me what he's feeling yet. I just study his gestures and expressions. I will keep you guys updated of the good news I pray. Thanks for your prayers and comments, please keep it up.

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