St. Jude Medical Pacemakers & ICDs

Read Messages




Messages in Parents & Kids Forum



Posted by wolffash on 2014-12-02 15:20. 3 comments. 216 reads
 
Hello All:

After a routine checkup at a new pediatrician, it was discovered that my four year old has a heart murmur. She's also small for her size and so she was referred to a pediatric cardiologist. The PC discovered an AV block. I do not know the degree yet-he did ultrasounds, ekg, and she wore a heart monitor for 24 hours.

We meet with him again in about week-we met with a genetecist to see if there were any underlying conditions that might conflict with the pacemaker-and this next appt is to discuss the plan moving forward.

I'm very anxious, worried, concerned. I'm afraid she will die suddenly (the doctor assured us this wouldn't happen at her age, but STILL), or not live a full life, etc.



Posted by cllangla on 2014-11-14 08:35. 6 comments. 322 reads
 
I am new to pacing, my 8 week old grandson has had a pacemaker since day 9. I am looking for something he can wear (under his clothes) that will protect him from wireless transmissions. I have found protective compression clothing more geared towards older kids and sports. His pacemaker is in his belly and it will be until he is closer to 10-12 years old.

Is there such a thing that would give him protection from wireless phones, ipads, computers, etc.

Cathy

Posted by talia on 2014-11-08 23:26. 7 comments. 354 reads
 
I am a mother of a child that will be having a pacemaker put in very soon. She is a sporty, fit, athletic gymnast. She is looking at working as a gymnastics coach while she studies to be a primary school teacher. She is only 13 but has already set wheels in motion for her future. She currently helps out at her gym as an aid and hopes to start her coaches course in Jan when she turns 14. We hear lots of different stories and my daughter is all about trying anything. She loves scary rides, she not scared of heights and loves playing team sports. She is also very good at athletics and she loves the out doors.
Could anyone tell me if this will be possible after she has her pacemaker and sport wise what she can and can't do?


Posted by ryansmom on 2014-10-31 14:36. 3 comments. 263 reads
 
Haven't been on this sight for awhile, but decided to drop back in. A couple yr. ago my then 15yr old son Ryan had to have emergency surgery because of a defected Boston Scientific pacemaker, that was a horrible scare, of course Ryan came through it better then mom. Today he had his battery checked and it's saying a year or less, so here we go again! Sure wish this got easier but it doesn't I'm already stressing . Ryan just turned 17 on 10-10-14 but to me he's my baby. He had to have 5 open heart surgeries by the time he was 2, and received his PM at 15mn. think I'd be use to this by now, they told us this PM would only last 2-3 years due to the leads have slipped and need to be re-positioned which they will do this upcoming change, cou...


Posted by Jacqueline1985 on 2014-09-07 17:47. 2 comments. 401 reads
 
Hi I was wondering if anyone could help? My mum had 2 stents fitted 4years ago and was fine until April this year when for 3 days she was going into cardiac arrest. She had an implantable defibrillator fitted which thank god hasn't had to do anything yet it was fitted below the collar bone but seems to have slipped down to her breast. Is this normal? Has this happened to anyone else? The wires still seem to be in place We are still learning any help would be much appreciated.

Posted by marjolein on 2014-09-05 09:44. 3 comments. 236 reads
 
Hello everyone

My name is Marjolein and I live in the Netherlands with my husband and my 2 girls. My youngest one is 5 months old and was born with a congenital heart block. When she was 1 week old, she gets a pacemaker.
She is doing better now.
I can't find much parents of children with pacemakers in Holland so i'm glad to find this website.

I would like to have contact with other parents who have a little child with a pacemaker. So I can ask their experience and so I don't feel like i'm the only mama in the world with a child with a pacemaker.

Thanks!

Posted by nato on 2014-08-03 16:27. 2 comments. 439 reads
 
Hi All,

Hope all is good and your PM is giving you the best out of it.

May god be with you all and continue to give you support each day.

Question,

Mom with kids in the USA, can you give an average cost to change the battery on a kid age,8 yrs old.

Appreciate your response...

Posted by sbutleremmett on 2014-07-15 07:27. 5 comments. 431 reads
 
Hi all,

our baby has been diagnosed with a 2-to-1 block and we have subsequently been informed it was caused by Anti-RO antibodies that my Mom has. The baby is currently at 30 weeks and is doing fine - we are expecting delivery at 35 weeks if all goes well. We realise we have a real journey ahead of us, but great to stumble across a group that has been through this.

Steve

Posted by tammythomas on 2014-07-10 19:36. 5 comments. 408 reads
 
Hi i need a little advice, me and my husband want to try for a baby. I have a pacemaker since i was a baby. The reason for that was fellows.. I spoke to my doctor at my last appointment and he said i should arrange to seek advice else where.He is unsure if there will be any issues. I am looking for some advice, please.

Posted by Dolphinsapphire on 2014-06-27 19:54. 4 comments. 482 reads
 
Hi everybody, I'm new to this website/club, I'm 16 and I have had a pacemaker all my life, but i have never met that many people my age with pacemakers, is there any other teenagers on here?

Posted by Bily11am on 2014-06-16 14:08. 3 comments. 348 reads
 
Hi,
I am new to this website and 'club' in general. I am getting a pacemaker this Friday, and am currently breastfeeding my 3 month old son.

I am under the impression from the doctor that I will be 'in and out'- unless there are complications, it doesn't sound like I will be staying the night. He also didn't express any concerns about me breastfeeding. Depending on what anesthetic they give me, I will be not feeding for a certain amount of time, but what I am worried about is feeding during recovery. I have no idea what to expect regarding pain, etc. It seems that everyone has very different experiences but I have yet to hear of anyone in my situation. I am also concerned about managing my son. I will have a lot of help, ...


Posted by vbilbrey on 2014-04-27 12:41. 5 comments. 483 reads
 
Hi there. I am about five months pregnant and am starting to think about how I'd want to deliver. I feel that God intended us to deliver naturally and that by doing so we can become closer to Him in that we will really recognize how sinful we truly are and have no hope but in Him. (It all goes back to Genesis where because Eve deceived Adam and went against God's command of eating of the tree of the knowledge of good and evil that God said women will now have painful labor.) I've just started thinking lately that the medication given at hospitals and things really are a way of taking away what God intended us to experience and thus distancing ourselves further from Him. Anyway you don't have to agree with me but with that being said, ...


Posted by nato on 2014-04-26 21:43. 0 comments. 246 reads
 
Hi All,

Does anyone had a child who suffers with febrile seizures and has a PM.

Question;

How long after did your child took to grow it out without having any more seizures.

Posted by kayak.eric on 2014-04-09 12:36. 4 comments. 608 reads
 
To all parents of kids with ICDs and pacemakers:

Thanks for your love and support of your child.

I am a 22 years old with Long QT and an ICD. I was diagnosed when I was 13 or 14 and got my ICD when I was 15. It was hell. I was very active. Before all this happened, I kayaked, biked, ran, snowboarded, and was generally energetic (hyper) and active like any young male. It killed me when I was first diagnosed. Initially, because of my diagnosis, doctors basically told me I couldn't do anything. I couldn't swim, I couldn't bike, couldn't run. Nothing physical. That summer was miserable. My parents had to deal with a pubescent male that wasn't allowed to do any of the things that made him happy...

But ...


Posted by bharath on 2014-03-15 07:38. 6 comments. 409 reads
 
Hi friends, I am blessed with baby girl on 27-feb-14, with brady cardia, very low heart rate at Doha,Qatar. She under went surgery and implanted a permanent Pacemaker. Now slowly she is recovering and still in incubator, hope by gods grace she may discharge from hospital by next month but only i am worried about her future....but i am supported with my wonderful doctors and also you all..........

Posted by kitkatrussell on 2014-03-10 01:49. 2 comments. 477 reads
 
To parents of kids with abdominal placement - for those of you who allow your kids to play sports, which protective gear do you use...padded undershirts? My 7 yo is starting baseball & has abdominal placement. We found what looks like a really good padded undershirt with pads covering the abdomen...now I'm thinking ideally we'd have one that covers his chest too. Our son's frame is so skinny, his heart is just as close to his back, and what I'm envisioning to help him would be like a vest to cover front & back! Would be pretty bulky.
Any suggestions from seasoned moms & dad's? Our son's PM was implanted 4 months ago & he has been doing much better with it!

Posted by kitkatrussell on 2014-03-06 03:34. 0 comments. 386 reads
 
UCSF just gave me this info. for padded undershirts with pads for either chest & abdominal pacemaker placement:

https://www.facebook.com/pages/Cielo-MarKae/168978419161

Our son had his pacemaker implanted in Oct. & was just cleared for baseball!

Posted by eagles78 on 2014-02-15 14:19. 6 comments. 520 reads
 
hi

my son had a pacemaker fitted at 7 weeks old.
just thinking future wise and wondering if anyone had any advice! as we really weren't given much information(he is 6 months now)
anything useful really-what they can can't do-i have a feeling he will be a boisterous little fella and am fully expecting trips to hospital from tumbles etc!

thank you

Posted by Pacemum on 2014-02-13 18:25. 0 comments. 259 reads
 
Look what is happening tomorrow

http://www.yorkshireeveningpost.co.uk/news/latest-news/top-stories/leeds-hospital-in-uk-first-heart-op-1-6438807

Posted by chdmomto1 on 2014-02-10 01:15. 4 comments. 592 reads
 
My almost 6 year old son has had his epicardial pacemaker for six months. We are still trying to get used to the do's and dont's. Initially we were told he couldn't play dodge ball or basketball during recess, so all he did was swing on the swings every day. Then they studied magnets, in class, so we had him stay away from the magnet table. Now the school is having weekly skating lessons. Not sure how safe that is. Does this ever get easier? Guess I am still mourning his lack of normalcy.



Member Login
email:

password:



Who's Online?
We have 1088 visitors online.

Members online:
  donr
  Heartbeatflutterfly
  AngrySparrow1
  GrandmaD
  water
  dk9
  Selwyn
  Littletree
  Bill T
  29tomt
  Jdpait

Polls
What type of device do you have?

Single lead pacer
Dual lead pacer
CRT
CRT-D
ICD

You're Wired When...
You know the difference between hardware and software.

Member Quotes
I am just grateful to God that I lived long enough to have my ICD put in. So many people are not as lucky as us; even though we sometimes don't feel lucky.

Bra Strap Comfort for Pacemaker Patients



Site content and design © 2000-2014 Pacemaker Club Inc.
All rights reserved.