Pediatrics with ICDs

[SheliRenee]

Hi Dee -

That is so wonderful that you are that happy with Dr. Towbin. I think that is a major key in dealing with this "stuff." I am working on the doctor situation. Keanu's primary pc moved and so he started seeing his EP every time. Starting in April, Keanu will go to another pc who is the chief something or other and has had more experience with HCM. Keanu will continue to see his EP of course. Thanks for sharing about Dylan. It means a lot to me. There are so many people here that share and are wonderful, but it really helps to hear about kids that have this (not the fact that they have it) and are doing well. I'm glad to hear that Dylan doesn't need to have an ICD at this time. I hope he never does.

SheliRenee

[Dee]

ICD in Dylan

Hey SheliRenee - don't worry about being nosy. If it'll help, I'll share it! The way Dylan's EP explained it to me is that he is at high-risk for arrythmias because his thickness and obstruction are "severe" and because of the location of the thickness. He hasn't ever shown symptoms of having any and they've never caught one on any of several holters he's had. It's been my experience (limited as it may be) that the EP's are more pro-active towards putting one in than any of Dylan's PC's have ever been. After meeting with Dr. Towbin in Texas tho I have complete confidence in his plan of treatment and at this time he doesn't think he needs one. I could write another 3000 words about how confident I feel about Dr. Towbin but suffice it to say, he's "the man" as far as I'm concerned

[SheliRenee]

Thanks everybody for the input.

Dee - Aren't ICDs used in patients with arrythmias? Are they used for other things? Why are they considereing Dylan for an ICD? Sorry for being nosy.... hazard of wanting to learn everything I can....

Have a good one.

SheliRenee

[Dee]

ICD's in kids

While Dylan doesn't have an ICD in, it's something that's been discussed and is still a possiblity for the future. I don't know the exact numbers but I know they're SMALL when you're talking about very little children such as Keanua. While Dylan's EP didn't come right out and say "put an ICD in" she was very much for it. After talking to Dr. Towbin we're holding off on it right now. However, Dylan hasn't had any arrythmia's either that we can find so he's in a different situation.

Sorry I can't give you exact information you want but I do know that the number you're looking for is small!

Dee
(i'm sick with a sore throat, cold etc and drugged up on cold medicine. Hope this is coherent!)

[Lisa Salberg]

There are many kids with devices pacer, ICD, neuro implants... all implanted for various reasons. THe data show that the devices do not have any ill effects on growth or development.
If it is felt he is a high risk for SD then a device sounds like your next step.
I would ask parents of childen with devices to chime in here and give your input...THANKS!

Lisa

[Cynaburst]

These are the two big sites about ICDs:

www.zaplife.org

www.implantable.com

Neither of them are that up to date, but I visit both of them alot. I haven't seen a ton about kids with ICDs, but you might want to visit a site about kids with congenital heart defects. I don't know the link offhand, but I looked at it once, and it looked like alot of info. about kids specifically. The issues there are different, where to place the device, etc. b/c of the size of the child.

I know that they have been placing pacemakers in kids for a long time. My husband's cousin has one she got shortly after birth.

[Linda]

SheliRenee, I know Sarah is going to give you a web site dedicated to people with ICDs. It may have the info you are looking for, but you may also find some on the web sites for Medtronic, Guidant, and St. Jude. They are the 3 biggies in ICD manufacturers. I'm sorry I can't give you more info, but I won't speculate on something I'm not sure on. My son was 12 and did fine, same type procedure as with an adult, but he was good size for his age. Thinking of you and wishing the best for you all, Linda

[SheliRenee]

Just for my knowledge, because Keanu's EP wants to implant an ICD, I was wondering if there were any numbers out there (even rough estimates) regarding how many young children have an ICD. Thanks.

SheliRenee