New child to the ICD world, have tons of questions.

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ICDkid
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Joined: June 21st, 2009, 11:16 pm

New child to the ICD world, have tons of questions.

Post by ICDkid » June 22nd, 2009, 11:07 pm

I saw this area of the message board and I have a ton of questions. I hope somebody can help me. My name is Sharon. I am the mom to Garrett. He is 11, will be 12 in July. He had an ICD implanted March 18, 2009. It is new to us. To add to his situation, he does have anoxic brain damage from this ventricular Fibrilation episode. It took two shocks to bring him back. You can read about it in my intro thread.
I've seen postings of parents of ICD kids. It seems like they can still be kids. I'm under the impression that everything has to be really careful, even a bump in the road, literally, while driving. He is functioning with the brain damage, it is just going to be a long road to recovery. He wants to ride his bike again, wants to ride his Razor scooter, wants to be a kid. Go swimming, play on the swings.
Thanks for your time and I look forward to hearing from you all.
God's Blessings,
Sharon
Orange County, CA
Sharon
Garrett's mom
Orange County, CA

"God only gives us what we can handle, I just wish he didn't trust me so much!"
~Mother Theresa

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ladyheart
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Location: St George UT, USA
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Re: New child to the ICD world, have tons of questions.

Post by ladyheart » June 23rd, 2009, 4:55 am

I would think he could do all those things. But I'd make him take it slowly at first and gradually get back into his activities. With these kinds of heart problems, its really important to stay hydrated, especially if he's going to be outside playing. You can't just leave it up to him, you'll probably have to force him to drink water as he plays. That's my opinion. But you better ask his doctor! :)
Lori
Idiopathic Cardiomyopathy & CHF 1996
Mitral Valve Replacement 1997
first ICD 2005, Guidant
second ICD 2010, St. Jude
Sudden Cardiac Arrests: 1 in 2005, 10 in 2009

Elizabeth Martineau

Re: New child to the ICD world, have tons of questions.

Post by Elizabeth Martineau » June 23rd, 2009, 5:27 am

Hi, Sharon and welcome to the site. You are going to find so many excellent people on here who have gone through similar things and are very knowledgeable about ICD's, though your story is very unique. God bless you for loving that kid like you do, and insisting on the therapy in the hospital, too. I also have a granddaughter who was diagnosed several years ago with Asberger's, and know that even by itself it is a great challenge for the parents, and you have added challenges. But I always say, love is the greatest motivator of all and your son obviously has parents and grandparents who are there for him.

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ladyheart
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Location: St George UT, USA
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Re: New child to the ICD world, have tons of questions.

Post by ladyheart » June 23rd, 2009, 5:45 pm

Also, Sharon, he should probably always wear a helmet when he's doing those outdoor activities in case he has an episode so he won't hurt his head.

About the deyhdration...being low on fluids can bring on an episode. Two of my episodes happened when I was extremely thirsty, but was too engrossed to get up from what I was doing (watching a movie one time and on the computer the other time) and get a drink of water. Usually I need several glasses of water to bring me back to a feeling of okay-ness. But don't water-log him! I think my heart is very sensitive because i have a lot of heart damage and other stuff, so don't let this worry you excessively. I just wanted you to be aware of it.
Lori
Idiopathic Cardiomyopathy & CHF 1996
Mitral Valve Replacement 1997
first ICD 2005, Guidant
second ICD 2010, St. Jude
Sudden Cardiac Arrests: 1 in 2005, 10 in 2009

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Momof2HeartKids
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Re: New child to the ICD world, have tons of questions.

Post by Momof2HeartKids » June 24th, 2009, 9:01 pm

Hi Sharon, Your concerns are valid. Your son has been through so much and the thought of him having to deal with fracture leads or a shifting ICD is something you want to avoid if you can. But he also needs to be a kid. I have found that finding that balance isnt always easy but I do have some suggestions. First where is his ICD placed? If it is placed traditionaly he is not at as big of a risk than if it is in his abdomen. When in the belly it is exposed more to the normal stuff kids do, swining on a swing on their stomachs, etc. My son is too little for it to be placed anywhere than his abdomen. A bump in the road while driving in the car isnt going to do anything, but driving around on an unpaved road in a jeep for an hour I wouldnt advise. We have dealt with several lead fractures and my son I always say is 120% boy. Just walking down stairs he will usually jump down the last two, waiting in line at an park and he is swinging on the railings, etc. Some of the activity you are going to be able to do anything about but some things you may have to avoid. We let Jake run and play, ride a bike, etc. as he feels comfortable. His ICD is removed now due to infection but we didnt let him jump on a trampoline, swing on his stomach, etc. Things that would be overly bouncy or could have a direct impact on his leads we avoided. We tried to make him take it easy and not over do it (for his health too not just the ICD) but that wasnt always possible and other times we did have to tell him no like we couldnt let him rock climb at a party because the harness put too much pressure right over his ICD. He plays baseball and a prosthetic company made him a custom fitted chest protector that protected both his chest and abdomen and with it he was still able to run and play and slide and we didnt have to worry about impact to his device as much. Jake swims ands rides his scooter (just no ramps). You have to use your judgement along with the advice of an ep/cardiologist that has had experience with kids that have ICDs and isnt just going by litrature. It is hard, and many times I do feel like he is left out and there are things he cant do that he sometimes wants to so we let him do more of the things he can and try to get him to involve himself in things that arent as active while balancing him just being a kid too.
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)

ICDkid
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Joined: June 21st, 2009, 11:16 pm

Re: New child to the ICD world, have tons of questions.

Post by ICDkid » June 24th, 2009, 11:55 pm

Hi everyone, this is Sharon, mom to Garrett. I just would like to say thanks for all the info so far. I have calmed down quite a bit after reading all of the posts and the other posts as well. I am not as anal and my bubble I've encased Garrett in is starting to leak a bit, but not too much!!! :D
Thanks for the info on hydration. Who'da thunk on that one??? I never would have thought about that in a million years. Garrett used to drink water like a fish before everything, now I have to remind him, then he will. But the drawback to that is that I have to remember for him :?
Got the bike helmet sitting in the garage, that's been there waiting for him since last fall. Just gotta dust it off when the doc gives the go ahead. Along with his bike and razor scooter.
"Fibby" as we call it, was placed in his right chest between the collar bone and breast area. There is a two inch scar where the device is inserted. That is why I freak out when he changes his shirts. I see the arms go up and I just cringe. But, I know, there has to be some leway for that thing. I am in a pickle because I need to have him do his physical therapy to get better, yet, I have to watch it because I don't want to set him back again. I need to let him do things so he can learn and be a fully functioning person, Mommy can't always be there for dressing him. I have to invest in a rolling backpack now. Dr. Silka said that they are still looking at the effects of backpacks on the ICD kids and that he should not have anything over 10 pounds on his right side. I am happy that I am able to buy him a rolling backpack for school, I am lucky I have that chance. I just worry because he is starting Jr. High and well, you know, they are considered geekish where we live. I just don't want him to be a target if you know what I mean. To Mom of 2 Heart Kids, your son's stories actually let me calm down due to the fact that he is a child being a child. I realize that there is a life with these things. We've felt left out on some things prior, so, to add a little more to our plate, well, darn it, but okay!
Again, thanks to everyone for making us feel so welcome. It is greatly appreciated.
God's Blessings,
Sharon
Mom to Garrett
Orange County, CA
Sharon
Garrett's mom
Orange County, CA

"God only gives us what we can handle, I just wish he didn't trust me so much!"
~Mother Theresa

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Momof2HeartKids
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Re: New child to the ICD world, have tons of questions.

Post by Momof2HeartKids » June 25th, 2009, 8:00 am

Sharon, Garrett is lucky to have you, you are a great mom and he will be ok. Having his device placed tradionally near his collar bone like it is is great, my daughters is too and it is much more protected than in the belly so that is good. As far as the books and back pack, he should be careful and not put the strap on that side. The rolling back pack is a good idea but my daughter when she was in high school with her ICD didnt want one because it wasnt 'cool'. So what we did was talk to the teachers and got an extra set of books to keep home so she only had to bring her notebooks and binder back and forth. It made for a much lighter back pack. So if he wont go for the rolling you may want to try that. Also, if he has had his ICD since March you dont need to be worrying about him raising his arms getting dressed, etc. He should be fine by now and the leads set in place enough where that wont effect it. I wouldnt let him go swinging from monkey bars just yet but getting dressed, washing hair, reaching for things, etc. is no worrys unless of course your doctor has told you otherwise.
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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