New Mum here...from New Zealand

This is a forum for parents and kids with ICDs. Discuss issues unique to parents and kids, or just hang out with some newfound friends!

Moderator: Momof2HeartKids

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jasrowy

New Mum here...from New Zealand

Post by jasrowy » August 17th, 2006, 5:30 pm

Hi everybody, this site looks a little dusty, but I'll say hello here anyway. :D I'm Mum to two Brugada kids who got it from me. My Daughter is about to go up to Auckland to have the implant, and I thought I would touch base here as I found this site yesterday. Just wondering how the other kids got on with pain etc after the op. Daughter is a small five year old too, which may be annoying for placement of the ICD, but it'll go in somehow. :roll: I'll read around some more and hope to find out heaps more.
Rowena.

ams

Post by ams » August 18th, 2006, 6:59 am

Hi Rowena. Welcome to the group. You will find here everyone is such a great support and very caring as well as funny.

I had an ICD implanted when I was 14. I found that my left arm hurt for a while where I had the implant done but the hospital I had it done in gave me some painkillers every three hours. Apart from that I didn't feel any pain after having the op.

The hospital gave me exercises to do to get my arm moving about again and it really did help.

Some of the others on here will be able to give you some more advice about it.

I hope your daughter gets on alright, I will be thinking about her, if you want to know anything else let me know. I hoped thats helped a bit.
Ams

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Kat
Posts: 2521
Joined: June 21st, 2006, 5:30 pm
Location: Big City, North Carolina

Post by Kat » August 18th, 2006, 11:34 am

Hi Rowena,

I have seen an operation in a young child and they had the ICD placed lower in the abdomen than a normal left upper chest placement. I will let the others who have experience with this children answer your concerns. I am sure you will get more info soon.

I mostly want to say welcome to the group. We are all here for you.
~Kat - Hypertrophic Cardiomyopathy
-That which does not kill us can really mess up our hair!
-Having one near life experience after another.

Intro post: http://www.icdsupportgroup.org/board/vi ... 5694#p5694

Mark

Post by Mark » August 18th, 2006, 1:07 pm

Hi Rowena,

Welcome to the site! I am sure you will find a load of information here about ICD's and heart related conditions fomr the nicest group of caring people you will find online. Hope to see you post often. :)

cocoalab
Posts: 425
Joined: December 16th, 2005, 3:17 pm
Location: northern Chicago suburb

Post by cocoalab » August 18th, 2006, 10:14 pm

Hello Rowena,
My son was older when he received his ICD (15) but he did have open heart at 6. I was pleasantly surprised at how well he dealt with everything especially the pain. He was only taking Tylenol pretty quickly and was hard to slow down by the time we got home 10 days later. They really do bounce back. I think he had a harder time at 15 but he had a rough surgery then and then did very well with the ICD surgery.

When is she schedueled for her implant? Let us know so we can pray for a flawless surgery. Welcome and post again soon. This side does get pretty quiet.

heart hugs,
Wendy: Andrew's mom(23, L-TGA (ventricular inversion), tricuspid valve replaced 3x-7/96 and 7/05, 6/07 and mitral valve 6/07, MI at last surgery, cardiac arrest August 05, ICD 8/27/05, Bacterial Endocarditis requiring replacement of two valves and his ICD May through July 07) L-VAD 12/7/2010, on the transplant list since April 2011! Rom 4:5 But to him that worketh not, but believeth on Him that justifies the ungodly, his faith is counted for righteosness

jasrowy

Re the welcome!

Post by jasrowy » August 19th, 2006, 4:27 am

Thanks for the welcome people, awesome to find others with similar issues. Leah is due to have an ICD in the next couple of weeks or so, depends on the hospital schedules. She was actually supposed to have it put in before she started school, but that's come and gone. I carry the AED for her mainly, but it could be used on any of us, and I leave it in her classroom for the school day. Her brother is right in the next room so he's close to it also.
Will update when I know more, and keen to learn as much as I can.
Rowena.

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Momof2HeartKids
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Joined: October 27th, 2005, 11:12 am
Location: CT

Post by Momof2HeartKids » August 20th, 2006, 1:19 pm

Hi Rowena - Im sorry I didnt see your post sooner, wasnt home the past couple days. I am so sorry to hear what you are going through I know how difficult and scary this is. I am also a mom with two kids with Brugada, and I gave it to them unknowningly as well. Katie had her implant done when she was 15 (she is now 17) and Jake had his done when he was 5 (he is now 7).

Jake was a small 5 year old too and was still under 40lbs. He had his placed in his abdomen with the leads tunneled up under his skin to his chest then into the vein there. He was way too small to have one put in his chest. I too carried an portable AED until the implant with us everywhere. My mom and close friend who would be the only ones I would leave him with anyways also got certified so they would know what to do.

When and how did you all receive your diagnosis. Are the kids or yourself symptomatic? Katie was for almost 14 years before they diagnosed her correctly - she began collapsing on us when she was only 18months old. Jakes first symptom was passing out after his 1st stress test. He goes very very easily into v-tach. We consider ourselves very lucky now because most Brugada isnt diagnosed until after there is already a tradgedy in the family.

I would love to discuss this more with you and answer any questions you may have. For me it is so much worse having to watch your kids go through this than when it is yourself. I felt very alone going through this not knowing anyone with the same diagnosis and I have since talked with a few parents prior to their childrens implants. Please know I care and understands and dont hesitate to give me a call.
Wishing You a Zap Free Day,
Cyndie


(Brugada Syndrome, Long QT Syndrome, Sick Sinus Syndrome, ICD & 2 children one with Brugada, ICD and one with Brugada, Long QT and removed ICD due to staph)

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