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Author Topic: VNS for absence sz in 6 yr old?  (Read 17115 times)
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cistus breeze
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« on: March 19, 2010, 04:01:09 PM »

Hi. 

I'm new on the board.  Trying to decide if I should cancel my son's VNS implant surgery, scheduled for April 5. 

Anyone else out there with VNS for absence seizures?  My son, 6, will be the ped-neuro's first patient to get VNS for absence sz.    She is an experienced neuro. 

After months of "zoning out," L was diagnosed with absence seizures in July 2009 (age 5).  Since then he has tried Zarontin (rash), Depakote (behavioral side effects), and Lamictal (likely rash).  Meanwhile, I have spent thousands of dollars on homeopathy, anthroposophic remedies, cranial sacral therapy and herbal tinctures.  (I have not tried the keto or MAD for various reasons.)

I cannot let my son's absence seizures go unchecked much longer.  Especially as he grows into adolescence.  My fear of him developing tonic-clonic seizures (via kindling effect, hormonal changes, etc.) motivates me to consider VNS. 
-- But what if it doesn't work?

What will the VNS cost him?  Will he hate it?  Will he want to rip it out of his chest?  I keep having images of him wanting it out as soon as it is implanted.  There is something very unsettling about this image -- a feeling of claustrophobia comes over me for some reason.  I guess it's tantamount to being trapped but not being able to escape. 

Any feedback/advice welcome.  Thank you. 

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dennis100
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« Reply #1 on: March 21, 2010, 11:54:06 PM »

Welcome aboard cistus breeze,
 
If it were my child I would definitely seek another opinion ASAP. It seems that this neuro is just plain knife happy. Your child has only been diagnosed for 8 months. It is way too early to be thinking about invasive surgery. There are a lot of meds yet to be tried. Keep in mind that the VNS is supposed to be used as a last resort. It is not a cure. It's adjunct therapy, so your child will still have to be on medication. I wish you and your child the best of luck.
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Dispatch
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« Reply #2 on: March 22, 2010, 04:27:02 AM »

 Smiley  HI cistus breeze!  WELCOME to the VNS Message Board!  Glad to have you here with us!

Above you can click on the "Articles and Links" section where you will find the Patient manuals.  PLZ PLZ read thuroughly!  Doctors and Cyberonics don't offer the manuals prior to implant unless the patient/caregiver requests them.  There is tons of info in the manuals that is not listed in the sales pitch such as health history exclusions, side effects, etc.

VNS is approved for use in children with Epilepsy over the age of 12.  It has been used in children under that age, and there are some success stories.  The downfall to this is if something happens to go wrong, it will be classified as "User Error" due to off-label use.  I have found thru all my research that when something goes wrong, the parent(s) carry the deep and heavy blame upon themselves for what the child has endured.  It is heartbreaking to read stories like that, especially knowing I am a Mom, and only want what is best for my children.  You are in such a tough position, and I greatly grasp your desire to help your son.

I was implanted for Depression, but I also have seizures from a traumatic brain injury.  Since my days using VNS, I have increased absence seizures. 

You will also learn thru the manuals and this board that VNS can increase seizures all the way around meaning type, intensity, frequency, and duration.  Considering your son's age, how long he has been diagnosed, and knowing there are other meds & treatment options (have you heard of Neurofeedback?) to try before opting for the last resort of VNS, plz research all other options 1st.  VNS implant and explant is very invasive, painful, and often times un-do-able when it comes to removing the coils around the vagus nerve.  Hopefully the manuals will give you good direction and you will be able to understand what your son may possibly endure with the listed side effects, then from there between you guys ya'll can decide if those are things he can tolerate.

PLZ do keep us updated.  We are here for you whatever your decision is.  Bernard here on the board is the Neurofeedback go to guy, and he has an awesome site called Coping With Epilepsy.  There are lots of parents on that board who are quite knowledgeable in other forms of treament, so check it out when you get a chance!

Take care!
Cool
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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« Reply #3 on: March 27, 2010, 01:53:06 PM »

Hello,
I got my VNS 7 years ago and it was removed a year later. I have complex partal seizures, the VNS made them worse.
Through a support group that my Nero started I have become friends with a women who has absence seizures, she and I have the same doctor. Unfortunately absence seizures are very hard to control and she really wanted to try the VNS but our doc. said no. She told her the VNS doesn't work well for absence seizures, absence are so short the magnet wouldn't be of any use to you I wouldn't think.
There are so many new meds out there for you to try, don't give up! My friend is on Topamax and doing pretty well on it.
Hope this helps, Elisa
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
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« Reply #4 on: March 27, 2010, 03:18:10 PM »

Welcome cistus breeze

The decision about implanting VNS is a very personal choice. It's important to seek out as much information as you can from those who have lived with VNS.  You will find every conceivable result and every conceivable opinion about VNS as well.
The FDA has NOT approved it for anyone under the age of 12 years but Cyberonics will wine and dine you and act like your best friend in order to convince you it's the best thing for your child.  To implant this in him is considered "off-label" use. If anything goes wrong it's basically your fault. Then Cyberonics will kick you to the curb and completely ignore you.
Knowing that, it makes the decision tougher because no one here wants to harm their child, we only want the best.
If you have doubts now, wait. Find out more. Try diets like Ketogenic, different medication combinations, neurofeedback, supplements

Foremost, TRUST YOURSELF.  Go with your gut instinct.
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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!
Mom from Holland
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« Reply #5 on: March 29, 2010, 02:26:50 AM »

Welcome cistus breeze!

This is a belated reply from me, because ì was a couple of day`s away from home, and yesterday i had some problems with the board.

I know a couple of children with vns and absance seizures.
They are often put on the "rapid cycle" (A very fast cycle, thats cost about a new battery every 3 years!)
They don t use the magnet very often, because the seizures are mostly very short. Some of them have good results what about the seizures, and some of them don`t....
My son has vns now for almost 8 years, and for him it was the best we`ve ever done.
But we tried a couple of med.  and the ketonic diet before we made the discission.

Unhappily nobody can tell before what vns will do for your son.
And neither can anybody tell before what impact it has.
But i know that none of these kids hate the vns or wanted to rip it out, or something like that.

As a parent you have this very,very,very difficult question, and the descission is much more difficult!
I know, i`ve been there....

What if you don`t? Imagine, it could give a good result.
But, what if it don`t work for him?
And what if he got charge of the side effects?
I only can give you the same advice as the others over here, read all you can find about vns.
And think about it again after that.
Succes with making the decision. What ever you do, it will alway`s be the right one!
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Life isn`t how to survive the storm,but how to dance in the rain!


Nino`s Mom, from Holland.
 Mom of a 16 years old son, vns since 2002.
cistus breeze
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« Reply #6 on: March 29, 2010, 05:25:21 AM »

Thank you to all who read and/or responded to my first post.  When I wrote I was worried sick, hence my rather honest portrayal of what's in my head re: VNS for my son.  I assume that most children do not immediately want the VNS removed after it's implanted.  But knowing my son, it's entirely possible, so I wanted to be upfront about my fears. 

Anyway, I am cancelling (postponing?) the surgery for now.  My son was accepted into another comprehensive E center for a 2nd opinion so I will wait until after that to make my final decision. 

In the meantime, I am researching other possible meds for absence seizures.  Zonegran? 

I am also leaving open the possibility of dietary changes, although for several reasons, I am reluctant to go that route.  I'll elaborate on that in a different post.

Back to VNS.  I keep hearing contradictory information.  "It is used for absence seizures only; it is not advised for absence seizures only."  How can I get objective data on its use for absence seizures, including effectiveness? 

Having trouble with my message right now -- can't scroll down to write more. 

Thanks.

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Mom from Holland
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« Reply #7 on: March 29, 2010, 06:11:41 AM »

Hi cistus breeze,

There are so many stories told about VNS. But not only about vns, but also about the ketonic diet f.e.
These day`s, vns is used for all kind of seizures.



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Life isn`t how to survive the storm,but how to dance in the rain!


Nino`s Mom, from Holland.
 Mom of a 16 years old son, vns since 2002.
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« Reply #8 on: March 31, 2010, 04:15:36 PM »

My son Scott had the vns implanted and it caused all sorts of medical problems that he didn't have before the diet and that will affect him for the rest of his life even though the vns generator and the majority of the wires have been removed. The coils are imbedded in scar tissue so cannot be removed. God only knows what harm that will do later on in his life.The vns scar tissue grew in such a way that it had almost completely pulled Scott's vagus nerve out of the neck muscle sheath causing him to experience all sorts of problems including affecting his heart rate and oxygen levels. He also had to have a feeding tube placed due to the severe GI problems it caused. Scott also grew less than 1/4 inches tall and only gained a grand total of 6 ounces the entire 7 years his vns was implanted. To top that off the vns prevented him from going into puberty but thankfully once it was removed he started growing again and went into puberty at the old age of 17. Cyberonics still hasn't returned any phones calls from myself, Scott's Neuro, Scott's Neurosurgeon, Scott's Neuro-Optic or his Cardiologist. They really believe all of Scott's problems are MY fault cause I agreed to allow it to be implanted in a child under the age of 12. At the time it was implanted Scott was less than 3 months away from being age 12. Agreeing to have the vns implanted into Scott was by far the worst mistake I ever made in my life. He was 11 years old when it was implanted and was removed when he was 17 years old.
Our miracle has been the classic ketogenic diet. Scott is 95% seizure free and has been completely seizure medication free since August 3, 2005. He was completely weaned off of Ativan (which he had taken 3 times a day for over 13 years!), Diamox, Lamictal and Zonegran. You can learn all there is to know about the ketogenic diet at www.charliefoundation.org. You can also see Scott's pic and read his story under "keto Kids" at the bottom of the home page along with several other kids who were on the diet at one time or are on the diet now. There is also a community board simular to this one where you can ask questions and have a world famous keto diet expert (fully trained at John Hopkins under Dr. John Freeman and Millicent Kelly and who also trains keto centers all over the world how to prescribe and follow the diet) answer your questions. There is a lot of wrong info concerning the diet. The diet really isn't as bad as what you might have heard or read about. Scott enjoys all sorts of goodies like pancakes with syrup, strawberry shortcake, muffins, pizza casserole, cookies and even candy.
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« Reply #9 on: April 01, 2010, 08:58:33 AM »

Welcome to the board! You can gather alot of information here.

I got my VNS for depression, so I can't speak on your situation. I think I would get a second opnion on a child!
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« Reply #10 on: April 04, 2010, 12:00:09 AM »

 Smiley HI cistus breeze!

How are you and your son doing?  Have you been able to get the 2nd opinion yet?  Hope things have been going well!

Regarding objective data-I am not quite sure if any data provided for VNS in use by a child under 12 is going to point you in the direction of allowing the procedure to take place.  I say this because it is not approved for use in children under 12.  Cyberonics has failed to submit data as required by the FDA for post-market studies for use in depression.  I know there are children under 12 who are implanted, and there are success stories, on the other hand, there are horror stories.  It may be beneficial for you to talk to your son's doc about the objective data you are searching for.

Kuddos for you for getting a 2nd opinion!  Please do let us know the outcome of that!  Take care!

Cool

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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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