Question about 2 year old w/pm

Hi:
My son has had a pacemaker since he was 9 months old. He had a few complications but seems to be doing well. He is now almost 2 years old and has had phone checks every month and all results were OK. He had compete heart block...that's why they put it in....anyway....he seems to be having some trouble and i am not sure if it's from his heart or something else. he has an appt next week to check him but what's happening is that when he runs around playing....alot of running.... he gets out of breath and starts coughing....it takes him a few minutes to catch his breath.....he also has that oral cyanosis (bluish around the lips) but he has had that before and they said it can be normal for children his age.....has anyone had trouble with settings on the pm that might cause these symptoms? his lower rate is at 80 and his activity rate can go up to i think it's either 140 or 170.....
any advice would be helpful....
thank you

Wishes for a Happy and Healthy New Year to All!

6 Comments

Hope all is okay

by slarnerd - 2007-12-29 01:12:25

Hi! My son is almost 18 months and also has a pacemaker due to CHB. He has a fractured lead (atrial) right now and so his settings are funny. I realized after we discovered the lead fracture (by a phone check) that he did have some symptoms but I thought they were normal toddler, teething, growing stuff ... those were sleeping more, not eating as well, etc. Even so, with a toddler you cannot know if it is normal or not. He also has always had that oral cyanosis and I know that can be common. I called the EP a couple times about it and they were not concerned. My son had about the same rates programmed as yours -- 80 as the base setting and 180 as the high setting. My 3 year old daughter also has second degree heart block and we watch her to make sure it doesn't progress ... being out of breath, coughing, choking are not any of the signs that they told me to look for to signal her heart wasn't doing it's job. The signs for her (and my son) are lethargy, not eating well (for a toddler), fainting.

How long has this been going on? When was your son's last echo? Have you called the EP? Or, A trip to the pediatrician could rule out respiratory issues, unrelated to pacer or heart function. When he breathes, is he sucking in under his ribs? That could be a viral infection or RSV. I know how frightened you are and I hope it is just a little seasonal issue that will resolve.

I also want to invite you to join our support group that is just for parents of kids with CHB, neonatal lupus, and/or a pacemaker. There are many really informed moms there who can give you more feedback on what you are experiencing with your son.
http://health.groups.yahoo.com/group/heartblockkids/

Best wishes!

Sterling

Question about 2 year old w/pm

by SMITTY - 2007-12-29 02:12:58

Hello,

Since I'm not a doctor I can only offer a guess based on our experience with one of our sons many years ago. He had a heart defect that caused some of the same symptoms you describe. But for him it took surgery at age 9 to correct his problem and since he will turn the double-nickle in a few months, I would say it was successful surgery.

My guess is that the blue around the mouth is a dead give away that his heart is not pumping enough oxygenated blood to supply all the needs of his little body. That would also account for the shortness of breath and coughing. Of course there are other things that can cause these symptom. In my case congestive heart failure causes the shortness of breath and coughing bit for me. But I doubt that CHF is his problem.

His pacemaker settings for heart rate could be perfect for him, or they could be off a little, But a pacemaker has literally hundreds of possible settings that have to be correlated with the selected heart rate settings. His doctor will be the only one that can identify his problem with certainty.

In the meantime, I would say you will have the toughest job you will ever have, that being trying to keep him quiet until he can see the doctor..

I wish you the best,

Smitty

Pacing that Doesn't Bypass the Heart's Conduction System

by Terry - 2007-12-29 04:12:26

My son has a congenital heart defect, so I know a little about the emotions a parent goes through. Ask your Dr. what she or he thinks about restoring normal contraction of the ventricles by placing the pacemaker lead's electrode at the bundle of His (the heart's conduction system as it emerges from the AV node). Ask if he could tolerate a referral, and let me know if you wish. He's a bit young to go through life with a remodeled heart due to cardiac muscle pacing, in my lay opinion. Check out Dr. Sweeney's paper on the MOST Trial on the net. Need more, let me know.

Tery

2 year old

by Janice - 2007-12-29 04:12:55

Dear Brensmom,

Hi, i just read your question. I am a daycare provider for young children. About 6 years ago, I had a little girl (2) in my care that when she ran around she started coughing, being out of breath, and had the blue around the lips. I told her Mom about it, and she had her checked out right away. Turned out she had a hole in her little heart, and the blood was leaking into the lung, thus causing her to cough. She had surgery to repair the hole (which she was born with they found out), she is now 11 years old and a normal healthy "tweenie". I don't want to alarm you in any way, your case might be different where your son has a PM, but when I read your info, it brought back memories. Please keep in touch and let us know how your son is doing. Good luck, happy new year.

Janice

Question for Tery

by slarnerd - 2007-12-29 06:12:51

Would this lead placement still work in a patient with complete AV node block? I did google the MOST trial and Sweeney and it looks like this trial was for sinus node dysfunction and acquired av block - not congenital. But I am not a med professional and I could be totally wrong about that. Still, I would like to know more about the lead placement you speak of. And what do you mean by a remodeled heart? Do you mean problems from long term pacing? This continues to be a concern of mine for my son - but he has the Medtronic EnPulse DR pacer which is supposed to alleviate the unbalanced way some ventrical leads on pacers work. I am really trying to learn as much as I can - thanks in advance!

Sterling

Coughing and choking

by jackie83 - 2008-05-31 03:05:33

Hi Brensmom
I have a daughter who had a pacemaker put in when she was 3 (about 8 months ago, and was set at 60). Before her surgery, she would be playing, running around, or even wake up in the middle of the night choking and coughing, also being blue around the mouth. I asked the doctors if this had anything to do with her heart block, and they said no. Since her surgery, she continues to have these episodes, and her doctors are still telling me it's not related to her heart. I wish I had an answer to our questions.
Jackie

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