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Author Topic: Our Neuro wants us to consider VNS  (Read 6542 times)
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RebeccasMom
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« on: January 10, 2008, 08:25:33 AM »

Our Daughter's Neurologist wants to consider the VNS for our Daughter.  She has Lennox-Gastaut Syndrome.  We have tried multiple drug therapies, with little to no results.  It may sometimes appear at first a drug is working but then it quickly stops being effective.  

Currently she is on 4 anti-seizure medications.  That is a lot considering she is just 2 1/2 years old (yes, 30 months old).  

I KNOW VNS is rarely used in children this young.  

How many parents of children under 5 have actually tired this?  Is our Doctor crazy?

 
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Petunia
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« Reply #1 on: January 10, 2008, 09:02:11 AM »

Your doctor is crazy!
You couldn't pay me enough to put a VNS in my child or me again for that matter.
Even if they could promise me it would make me seizure free, I still wouldn't do it , knowing everything I know now about the VNS and the problems it can cause.


Do a lot of reading!!!! There is wonderful information here, read it all and then ask lots and lots of questions.

I will write more later, but I just had to reply quickly to you.

 
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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.
Mom from Holland
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« Reply #2 on: January 10, 2008, 09:02:39 AM »

Hello Rebecca`s mom.
I`m  a mom of a boy( his name is Nino) with LGS also.
I am very content with the vns for my son. But i never had him been implanted , if i did not try other alternatives.

Your daughter is still so very young, and there other treatments like the ketonic diet for her!

I think, the vns is the last thing to do, even for adults.

Your daughter has a lot of anti-seizure medic. I Alway`s tried to give my son not more than 2. Mostly if 2 or 3 doesn`t work, the 4th does not either.

I hope you will find something for your little daughter, that works for her.
Take care,

 
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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.
Fay
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« Reply #3 on: January 10, 2008, 10:31:15 AM »

Hello and welcome Rebecca's Mom.
Rebecca is a cutie! Thanks for sharing her picture with us. As you can see, Scott's picture is my avatar too. he look much younger than 18 years old but he's finally in puberty and looking a tad older as the months go by. If you read the posts about Scott it will explain about Scott's VNS preventing him from growing and going into puberty plus all the other "gifts" it gave him that will affect him for the rest of his life.
Before you agree to have the VNS implanted PLEASE (and yes, I'll get down on my hands and knees and beg you!) read all 4 of the VNS manuals from front to back and especially read all of the many possible side effects that can and do happen regardless of how young or old the person is. Nobody knows if the VNS will help, hurt or kill them until it's implanted. Also remember that the VNS is only approved for people ages 12 years old and over. If something happens during surgery or after the VNS is implanted it will be considered YOUR fault by the FDA and Cyberonics because you knew and understood that it was only approved for those people ages 12 years old and older (in other words not their fault and legally nothing you can do if the VNS harms or kills her) and you will be forever shunned and completely ignored by Cyberonics. It's also almost impossible to find a doctor, Neurosurgeon, etc., to remove it because they don't want to be held accountable should something else happen or a death occur.
I know how hard it is to have a child that young with a severe seizure disorder. Scott has Lennox Gastaut Syndrome and we dealt with hundreds of seizures a day for over 15 years. The only words to describe it is "pure hell" and even then it's putting it mildly. But please really research the VNS before allowing it to be implanted into Rebecca.
Like the others here that have replied (so far!) I'd try other things first. Have you tried the ketogenic diet yet? What meds and what combo of meds have you tried? believe it or not but the ketogenic diet has been our miracle. Scott still has a few rare seizures but he's been completely medication free since August 3, 2005. He was completely weaned off of Ativan (which he had taken for over 13 years!), Diamox, Lamictal and Zonegran plus he was weaned off of 5 behavior meds too. He was almost 16 years old when we finally met the real Scott!
If you have ANY questions please don't hesitate to ask. We're all here and will be more than glad to help you any way we can. Hugs, Fay

 
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RebeccasMom
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« Reply #4 on: January 10, 2008, 11:00:28 AM »

When she was first diagnosed as having any type of seizures they put her on Tegretol
(stupid Doctor did not believe she had Infantile Spasms, and refused to watch our videos).

She was not on that long

Since she has tried
ACTH
Phenobarbital (10-2005 until 12-2007)  (our little girl is so awake and alert now that she is off phenobarb)
Topamax (12-2005 - current)
Keppra (Umm April 2006 - Current)
Clonazepam (added sometime earlier this year - current)
Lamictal (10-2007 - current - just reaching full dose strength)


Because of her age, drug choices can be limited.  Although she will take pills, all of her current medications are in pill form.  Much easier than those stupid liquids that taste wretched, and make her gag.

We are considering the Ketogenic diet for her.  Actually her Dr mentioned the VNS, I had already done a minimal amount of research (since it is mentioned on epilepsy.com and other places as treatment for intractable epilepsy) but was much more inclined to try the Ketogenic diet.  I asked the Doctor if the Keto diet was a possibility and she said "Oh yeah we could try that too".

 
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Fay
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« Reply #5 on: January 10, 2008, 01:17:45 PM »

Oh my! I'd def try the ketogenic diet before trying anything else. And if at all possible try to go to a center that was trained by either the keto team at John Hopkins or by Beth Z. from the Charlie Foundation. The centers that do the diet following that protocol of the diet are well trained and can/will consult with both John Hopkins and Beth if needed. There are hundreds of ways to do the diet (different protocols of the diet) but this protocol can prove it works and there are lots of links to their work proving it too. I know the diet like I know the back of my hand as I am a professionally trained keto coach having been trained by my own keto team at Childrens Healthcare of Atlanta at Egleston (Dr. Philip Holt, Ellen O' Leary and Kelly Vieira) and also by Mrs. Millicent Kelly at John Hopkins before she retired. Dr. John Freeman and Mrs. Millicent Kelly have written 4 books concerning the ketoenic diet and put hundreds of kids on the ketogenic diet- curing many of them completely-in over 50 years at John Hopkins. They are THE experts concerning the diet which is why I'd follow their protocol of the diet over another protocol. Thank God it gave us a miracle even though Scott is pretty much an adult now at 18 years old. I would have been thrilled with 4 less seizures a day and not going into nonstop seizures so often so you can imagine how thankful we are to get the miracle we have now after going through all those years of hell like we did.
i hope that you will keep us posted and hope too that you know if you have any questions at all. please feel free to ask! Hugs, Fay
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Birdbomb
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« Reply #6 on: January 10, 2008, 03:19:20 PM »

I had made a post earlier but thru the wonderful power of the internet, it was lost in cyberspace....

anyway....


 :Welcome: RebeccasMom

And  :Yeah That:  :Yeah That:  :Yeah That: to everything already said!
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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!
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