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DoulaMomma
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« on: May 16, 2008, 09:14:52 AM »

My 7 year old son Bo will very likely have the VNS surgery in early summer. He has several delays including speech, development, and he is ADHD in addition to his seizures. If and when we get the implant, what should I expect those first couple of days? How do I keep an impulsive, hyperactive child calm enough to not end up hurting himself? Any suggestions on what I am in for?  :Thanx:

Karen
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labrat
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« Reply #1 on: May 16, 2008, 11:48:14 AM »

Have throat drops, ice pack, and possibly throat spray. His throat will be sore and he won't be able to turn his head to the left to look over his shoulder for a few days. I found that a beanie pillow kept my head elevated a little; I got some relief from that.
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DoulaMomma
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« Reply #2 on: May 16, 2008, 12:29:28 PM »

Thanks for the ideas :) He doesn't like throat losenges (sp?) but I could always get him some hard candy to suck on and maybe I could get him one of those kinda u shaped neck pillow. He would probably like that. Thanks!
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Fay
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« Reply #3 on: May 17, 2008, 01:22:07 PM »

Hello and welcome! The others gave you excellent suggestions and the same ones that I would give too. I only have a couple to give you that wasn't mentioned.
If you have read all 4 of the vns manuals (you will not be told of all of the side effects and will not be handed the patient manual until after it is implanted into Bo) and are still allowing the VNS to be implanted I'd also use the button up shirts over the ones that go over the head (like t-shirts) for at least the first few days after it's implanted.
Scott complained of it hurting when he had to put his left arm through the sleeve or had to list up his arms for a few days after the surgery. Plus his collar of t-shirts rubbed the incision on his neck too. Also sleeping with the head of the bed elevated helps a lot too. Scott had trouble sitting up from the lying down position for a couple of days so we used a few extra pillows to prop him up with which made a big difference for him.
I hope that the VNS helps Bo and that it doesn't cause any side effects or problems for him. I hope that you will keep us posted with him. Hugs, Fay
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gel61820
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« Reply #4 on: May 19, 2008, 08:55:35 AM »

Fay touched on this but I think it is important to let Bo know before the surgery that he will have some trouble using his left arm for a while after the surgery so he is not scared when he realizes this fact.  Also if he is used to sleeping on his left side he may find it uncomfortable to do so after the surgery for a while.  I used a rolled-neck pillow myself and then put pillows around me so I would not roll over during the night (after finding out the hardway the first night!).  

I also found that I could not tolerate anything around my neck for a few weeks after the surgery, so collar-less shirts are a great idea.  

One word of advice - even if Bo says he doesn't need a pain pill, don't stop them as when the pain does rear it's ugly head, it takes time for the pills to take affect.  I also learned this the hard way!

The throat losenges also worked well for me as Labrat mentioned in her response.

Another thing I just thought of was I was not informed prior to the surgery that during surgery my neck would be hyper-extended, so he will be letting you know his neck will be hurting.  I found that even when I was sitting on the couch watching tv that the neck pillow helped ease that discomfort.

Hugs,
Cindy
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"Do not go where the path may lead, go instead where there is no path and leave a trail." Ralph Waldo Emerson

VNS implanted July 2007 for Epilepsy.  Activated August 2007.  No success, so VNS was turned off in August 2008 and COMPLETELY removed (including coils) on Nov 25, 2008.
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