St. Jude Medical Pacemakers & ICDs

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Messages in Parents & Kids Forum



Posted by kayak.eric on 2014-04-09 12:36. 2 comments. 179 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. 174 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. 127 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. 105 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. 258 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. 72 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. 158 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.

Posted by pearleamy on 2014-01-24 15:00. 7 comments. 289 reads
 
Hi my name is mark and iam new to the pclub.I have a little girl who has pacemaker due to hearblock she is 1 and half we would like to take her on holiday abroad to menorca (spanish island) We are from the uk.We are a bit worried in case she had any problems
what would we do ?? are the hospitals able to help with pacemakers for child of 1 and half years.We would not take her if there was a problem as she is our pride and joy.The consultant said it wouldnt be a problem but we just feel a little uncomfortable with this.Any help would be much appreciated thanks


Posted by nato on 2014-01-22 10:58. 2 comments. 292 reads
 
Hi Moms,

My son is 21mths and has a pacemaker with a natural heart beat of 33-44 Bpm.He is paced 100% of the time.

The normal heart pulse rate for a child depends on the child's age. For an infant child who is less than one year old the normal heart rate is 100 and 160 beats per minute. For kids aged between one year and ten years the normal heart rate is between 70 and 120 beats per minute. Teenagers usually have a normal heart rate of between 60 to 100 beats per minute

Question;

As my son gets older,will his normal heart beat drop below 30-44 Bpm or will it remain the same as he gets older?

Appreciate your response...




Posted by annaslucas on 2014-01-13 16:40. 3 comments. 193 reads
 
Hi! I'm new here. I am 32 weeks pregnant and the baby has complete heart block, which will require a pacemaker at birth. Anyone have experiences with implantation at or soon after birth? Thank you!



Posted by nato on 2014-01-12 22:27. 4 comments. 143 reads
 
Hi Moms,

How was your child appetite after a year following his/her implant date.My son who has a pacemaker,he is putting on weight very slowly and my husband and I are quite concern.

Doctors said with the aid of his pacemaker now,that should not affect his appetite as compared to being without it.

Appreciate your response....

Posted by nato on 2014-01-08 12:40. 4 comments. 167 reads
 
Hi All,

Does anyone has kids who played with any of the leap frog computers or learning games and is safe to use with their pacemakers.

I want to buy my son his birthday present but I am scared that it might tamper his device.What are your thoughts and recommendation that will be safe to use?



Posted by nato on 2014-01-07 12:02. 1 comments. 163 reads
 
Hi All,

Does anyone has a child who suffers from CHB and no longer needs to have a pacemaker after the first one?

Posted by nato on 2014-01-07 09:44. 1 comments. 177 reads
 
Hi All,

My son who has a pacemaker had an echo done recently and the physican stated on his report he has a moderately dilated left ventricle with normal left ventricular systolic function(LVEF 55-60%).Some suggestion of diastolic dysfunction as well.

Has anyone ever experience this with their kids?

When my son was born his heart was dilated and now with the aid of his pacemaker,will this condition be resolved?

Appreciate if you can share your information...

Posted by katelyneliza on 2014-01-05 19:50. 4 comments. 193 reads
 
Hello, I'm 18 years old (still in high school) and I've had a pacemaker since I was three. I was born with tetarology of fallot and several other complications. I was wondering if theres any high schoolers on here living with a pacemaker? I'm pretty sure I'm the only person in my school to have one, so hey I enjoy being different ! :)

Posted by saturn6776 on 2013-11-03 20:37. 6 comments. 484 reads
 
My 4yo daughter recently had a pacemaker implanted in her abdomen for a 2nd degree heart block with syncope and seizures. I don't fully understand her activity restrictions. The doctor has told us she wont be able to play any contact sports like football or karate. Is gymnastics OK. She has been in gymnastics since 8months old and loves it. What about soccer where the ball could hit her stomach? Any advice would be helpful. Up to this point she has been an extremely active kid who loves playing outside. Thanks Lisa

Posted by kitkatrussell on 2013-09-30 03:40. 5 comments. 499 reads
 
To Parents of Kids w/Pacemakers:

We have 16 days before surgery to implant pacemaker...are there any activities you suggest we do now while we can with our 6 year old, that he would be restricted from doing with a pacemaker?
Surgeon told us anything with vibrations or EMF's would have to be avoided.
What restrictions are you aware of?
Thank you for the information in advance!

Posted by wifeweasel on 2013-09-15 00:39. 5 comments. 516 reads
 
My 5 month old son had pacemaker fitted at 3 days old due to Complete Heart Block. He is currently suffering from bad cold and has cough and wakes up struggling to breath. I am using cold vapour in bowl in room and saline nose drops but should I call docs or am I being too overly cautious? He's been up most of night and has cried himself awake a lot. Can a cold affect pacemaker? Help

Posted by kitkatrussell on 2013-09-13 15:00. 3 comments. 451 reads
 
Parents of littles with pacemakers, please let me know what I'm in for and what to expect. Our son Jackson goes to UCSF Oct 17th. For the past year I've been mourning his 'normal' since I anticipate more physical restrictions after implantation. He has tricuspid atresia so we are very familiar with the hospital scene & recovery after open heart surgeries & other procedures. Jackson came out of his Fontan surgery at age 3 pacing half the pre-op rate (his ave is in the 60's daytime, in the 20's at night with pauses up to 4 seconds!)
Because of his restricted access & diff blood flow pattern, they are placing the 'box' below the rib cage & it will remain there forevermore.
Besides all the restrictions his surgeon was telling us,...


Posted by megiemay on 2013-08-22 14:45. 0 comments. 265 reads
 
Ok i havent been on since i has 12 with my first comment called my first pacemaker asking what i can do as i had to give up karaty. I got alot of responce and one from a donr wich really helped me.

Now i have join a archaeology group witch im the head online leader and joind my schools rounders team well i was recruted but i just wanted to say thanks and well i hope to use this groipe through my experience.

So its been 3 years just since my pacemaker augest 7th 2010.

Oh i didnt mension last time but i had the pacemaker fitted because i have takie/brady syndrome so my hart gise to slow or to fast also 2 of my heart chambers dont work propely and my natural pacemaker dosent work propely either. Xx thank...




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