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ryansmom
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« on: February 04, 2008, 03:58:17 PM »

Can anyone who has had a child implanted with vns describe what my 5 yr ols son may go through after surgery ( 3/28 ). Any post surgery recommendations would be greatly appreciated.Ryan has had absence seizures for 3 1/2 yrs and no meds are able to control them. Brain surgery is not an option according to his video monitoring.

           Thank You
           Raiann
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Birdbomb
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« Reply #1 on: February 04, 2008, 05:47:34 PM »

 :Welcome:  Welcome Raiann

Glad to meet you, Thank you for joining our message board.  Athough I do not have a child with VNS, had one myself.  We do have severl parents of children who post here.  Those who have had excellent responses seldom feel the need to post questions.  Those whose experiances have been less than expected usually stick around for a while.

Hopefully some will stop in and answer your questions soon.

If you like I can give you MY opinion of implanting children and non-communitive adults, but you may not like it.  

I would like to remind you just one small item and I'm sure it's not been brought to your attention yet.  VNS has FDA approval for ages 12 and up in the treatment of epilepsy.  The FDA has NOT approved it for ANY age under 12.  This means, it's use is off-label and you will be responible for any complications, NOT the manufacturer.  Even though the manufacturer does PUSH this on many unsuspecting parents without bothering to inform them of this.  I have several parents who are dealing with this issues.  It makes life very hard.  They wanted the best life possible for their child and believed this was the right thing.

There are success stories.  But longterm effects in CHILDREN are not known.  Some of this long term effects are just now coming to light.  Kids like Scott, Sedona, Kyle.
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Bernard
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« Reply #2 on: February 05, 2008, 01:08:10 AM »

Hi Raiann, others here can give you a better idea about the VNS experience, but I would like to mention that my wife completely eliminated her absence seizures over ten years ago with EEG neurofeedback (see link in my signature).  I highly recommend it (and you could try it before resorting to the VNS).
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What do you know about neurofeedback?
Check out this chart of alternative epilepsy treatments.
Fay
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« Reply #3 on: February 05, 2008, 04:18:31 PM »

Hello and welcome! I'm sorry that I'm just now getting on here. My Mom lives with us and she has Alzheimers plus we've had major plumbing problems that affected 2 of our bathrooms- not fun!

You also prob don't want to read what I'm going to type either but I'm almost postive that you haven't been told everything about the vns and it being implanted into kids under age 12. I go to sleep at night sometimes crying for the kids under 12 years old who have the vns implanted who are having problems or who have died because of it.

Please, please, PLEASE read all 4 of the VNS manuals- you can find the links here on the board- before agreeing to have it implanted into your son. The side effects can and do happen. The VNS killed Scott's best friend (caused sleep apnea and she died in her sleep 3-3-1999 at age 11) and it almost killed Scott (caused severe growth delay which completely prevented him from going into puberty, severe GI problems that require being fed by a feeding tube 22 hours a day, made his asthma much worse, caused Intracranial Hypertension, Pappilledema, Cerebral Hypoxia attacks that required constant blood pressure and pulse oxygen level monitoring and oxygen as needed, low blood pressure, low body tempature).

These life threatening medical problems (VNS side effects and vagus nerve damage) will affect him for the rest of his life.

Yes, Birdbomb is right- the FDA only approves the VNS for people over the age of 12 so if something goes wrong...including your son dying..it will be considered  YOUR fault because you agreed to let it be implanted. And trying to find someone to remove it is almost impossible after it is implanted. Finding a medical doctor of any kind that will help you or your son if there are any problems will also be next to impossible to find.

If you call Cyberonics they will either put you on hold and nobody ever answers, will keep passing you onto someone else and then when you get mad enough to raise your voice at them they will simply tell you to contact the doc that implanted it or even hang up on you when you make more than 2 or 3 calls to them. They will NOT help you in any way, shape or form. Your son would be considered "User Error" which is Cyberonics term for "parent's fault".

Yes, the VNS can and does work WITH the medications (sometimes even able to reduce the meds) but with a child that young you have no idea how many times the generator will need to be replaced in someone. Nobody knows who it will help, hurt or kill until it is implanted and/or turned on. Did you know that each person- regardless of how old they are- only gets one lead wire (2 if it's an older model vns) wrapped around the vagus nerve and it remains there forever even though they have an expiration date?

The coils also come in different sizes which means the coils that wrapped around you son's vagus nerves now will be the very same coils that they will reuse over and over again for the rest of his life? His vagus nerve grows but the coils from the vns don't. Those coils could choke his vagus nerve as he grows as the scar tissue builds up. The scar tissue is normal but prevents the coils from expanding as he grows and makes it impossible for a doc to remove the coils from around the vagus nerve if needed. That's why the VNS has a "black box" warning that states that the coils cannot be removed.

I know how hard this is for you. Believe me, I've walked in your shoes for over 16 years. Read everything here on the board- especially the 4 manuals and all of the many possible side effects that can and do happen.

My heart goes out to you. It really does. Like the others said, I'd try everything else first before even thinking about getting the vns implanted. Have you tried the ketogenic diet yet? It has stopped 98 to 99% of Scott's seizures and he has been completely seizure medication free (Ativan, Diamox, Lamictal and Zonegran) since August 3, 2005. You can read more about our vns problems andketo diet journey  the board.

If you have any questions, please ask. We are ALL here for you and your son. Hugs, Fay
« Last Edit: February 05, 2008, 05:48:22 PM by Birdbomb » Logged
momofky
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« Reply #4 on: February 07, 2008, 07:26:01 AM »

all's i can say is i TOALLY agree with FAY!! READ,READ AND READ!!! this is a permant device. our son is having it removed due to too many side affects and an increase in seziures... we have been told that the device can come out eaisly,but the coils are a different story. and if the scar tissue is to thick and if they can't get to it they will leave them in FOREVER!!! :( we are being realistic, but were hoping and praying that the coils can be removed!! he has only had the vns since june so by the time it's removed it will only have been in for 9 months
as others will tell you it can and it does work for alot of people,but it also causes a lot of problems for others...please go into this will every bit of information you can get your hands on!!!!!  :coffee:  
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kyle 15 yr old son vns~6-07 removed~3-07

God only gives us as much as we can handle
ryansmom
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« Reply #5 on: March 02, 2008, 11:19:34 AM »



Hello to all,

    I just wanted to Thank all who responded to my original message. I just wanted to let you know I took your advise and really researched VNS. I was really affected by what you had written. As we all know all I am looking for is for Ryan to have an enjoyable life. So after I read everything on this board and did some soul searching I decided to take the physcian's oath's own words and that is " First do no harm". I have postponed Ryan's surgery indefinetly and I actually have started to look at herbal remedies with his dr's somewhat approval. Saying the remedies will not harm Ryan but felt I was not really going to help Ryan with this course of treatment. My response to him was I may not see a reduction in seizures or I may. But I do know there will be no life lasting side effects. And to be honest Iam not expecting much but iam hoping and i guess that is all can do for now. If I can just get some control on these seizures i will be happy.

    AGAIN THANK YOU SO VERY MUCH,

        Raiann
 
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gel61820
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« Reply #6 on: March 02, 2008, 11:29:47 AM »

Hi Ryansmom,

I know this was a difficult decision for you to make but know that if the alternatives you try do not work, you have done no harm!  That is very important and I pray that you will soon see some positive results with the options you will be trying.  Please keep in touch and let us know how Ryan is doing.

 :im_033:


 
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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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« Reply #7 on: March 02, 2008, 12:45:06 PM »

I agree.  It would be wise to seek out all the alternative treatments first before resorting to surgery.  But should you change your mind and deciede VNS is the route you want to take, we will be here for you.

Please keep us posted on how he does with the herbal remedies.  

Have you checked out Bernards's site?




 
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
labrat
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« Reply #8 on: March 02, 2008, 01:32:00 PM »

That's what it is all about, research and decide. Try the herbal things, they won't hurt him; you can always go back to the VNS if nothing else succeeds. Remember to give each thing time to work.
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Bernard
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« Reply #9 on: March 02, 2008, 04:12:06 PM »

Hi Raiann, I think you are wise to pursue all your options before the VNS, but I would suggest you look into options which have been studied and proven to be efficacious for seizure control.  I was not able to find any conclusive studies showing that herbs could be an effective long term treatment for epilepsy.

Check out the chart in my signature for information on diets (LGIT, modified atkins, ketogenic), neurobehavioral therapy and EEG neurofeedback.  Best wishes with whatever path(s) you choose!
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What do you know about neurofeedback?
Check out this chart of alternative epilepsy treatments.
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« Reply #10 on: March 02, 2008, 04:24:49 PM »

I think you made the right decision and although you aren't going to get the VNS, I hope that you will keep us updated with your little guy anyways. Hugs, Fay
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littlemamasheart
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« Reply #11 on: March 06, 2008, 12:21:27 PM »

You did the right thing.I hope things work out for you.
Mary
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