VNS Therapy

Carrie - posted on 12/30/2008 ( 31 moms have responded )

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Hi! Just joined today and wondering if anyone has had success with VNS Therapy for their kids. Dayne was bitten by a mosquito in 2001 and contracted encephalitis. He had a seizure at 18 months old, which clued us into the encephalitis, but was seizure free until he was four and a half. We have tried many different medications to control his seizures, but the side effects are awful and he still has small seizures. His neuro suggested VNS therapy.......any feedback??

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Sandy - posted on 01/23/2009

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As a mom, I say go for it. If it doesn't help them ... it won't hurt them, but if it helps ... you make their lives a little easier to deal with. Joey has had his VNS since Aug. 2004 and I know it has helped some. Not completely but, it has stopped ones as they are starting and by anyone swiping the magnet over the device, it helps ease or stop the seizure quicker than letting the seizure continue until it ends. Good Luck. I have not seen any adverse affects. And no problems with any infections from the surgery.
Sandy.

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Jessica - posted on 01/27/2009

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My son has had the VNS for three years now and I think it has been wonderful for him. It absolutely reduced the number of seizures he was having and the severity of them. He has changed his meds some too, to become more "with it". He is on Felbatol, Depakote & Valproic Acid. His seizure activity is all over the board though... some months he has one or two seizures and the next month he will have between 13 and 16 seizures. At this point, we are waiting and looking into NeuroPace (it is only available to adults right now and he is 16 - or will be on Feb. 5th)

Rosemarie - posted on 01/27/2009

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Were new to the VNS therapy. My daughter will have her device turned on Feb. 5th. She stayed on the ketogenic diet for approximately 2 years and then we had difficulty keeping her in ketosis. I'm surprised they put in a VNS unit at such a young age. I was under the impression they wait until the child is 12 years of age before considering it. I'm so happy to hear that it is sucessful for your daughter. I will be thrilled if one of the benefits my child gains through this procedure is alertness. It has been such a challenge for us to keep her medicated but not too sedated. My daughter is on 4 seizure meds daily and we have a 5th one for emergencies. So far, she is healing well. We did have a scare with her coming down with a cold; wheezing in her lungs and a fever. We started her on albuterol treatments and chest percussions right away. Her doctor also started her on antibiotics. Our hope is that with the VNS therapy we will see a reduction in seizures, a reduction in the severity of her seizures, and we will be able to wean her off some of her meds too.

Kerry - posted on 01/27/2009

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My daughter age 4.5 has had her VNS since 10-08. We have seen some seizure reduction (she has multiple daily).... BUT the magnet has definitely helped reduce the intensity and duration. In addition, the positive side effect we are most appreciating is increased alertness. She seems so much more awake and she still is taking 3 seizure meds and on the keto diet.  The diet took my daughter from about 30 seizures a day down to around 10 and now the VNS down to 5-8 and this last week around 3-5 but I am wondering if it is a good fluke. Consider both the diet and VNS. Our hope is to eliminate and then wean off some meds!

Sandy - posted on 01/23/2009

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I have a lot of info for you but I am on my way out. I will get back to you later and explain things. www.joeylora.com will show you what Joey has been through. He is 10 years old now. Seizures started at 9 months. Sandy

Kristi - posted on 01/23/2009

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Sandy - is your son still on meds?  I have never been a medication person and am always concerned of the long term effects.  We are presently looking at the Brain surgury to remove the matter, VNS and it seems drug therapy is just not working.  He had an incident just the other day which ended up him having 6 stiches in the mouth because he fell on his desk at school.

Kristi - posted on 01/23/2009

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We are very interested in the positive result you and your family will receive.  We are at the decison point for our son as well.  God Bless!

Sandy - posted on 01/23/2009

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Rosemarie, Please keep us informed. I believe she will get some help from the VNS. Keep good thoughts. Sandy

Rosemarie - posted on 01/23/2009

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My daughter started having seizures at 36 hours of age. Today she is 12 years old and on Keppra, Clonopin, Lyrica, and Zonegram. Last friday she had the VNS implant done. I have heard good things about VNS therapy and I'm hoping she will benefit from this procedure. My daughter has severe CP, cortical visual impairments,scoliosis and is non-verbal. It's hard for me know what side effects she has had taking all these medicines at one time. I do know it has been a challenge trying to find the right dose without sedating her. Her neurologist made it pretty clear that if we didn't consider this therapy her life most likely would be shortened by her seizure activity. I was very skeptical only because 2 years ago she had spinal fusion surgery done that resulted in a staph infection. The thought of another surgical procedure frightened me. But, in that case too, it was a life threatening situation. Her spine was curved at 70 degrees and was pushing into her left lung. We were facing respiratory issues. But getting back to the VNS therapy I did go through with it. Once she heals from her surgery the device will be turned on...that should be Feb.5th. I'm encouraged by some of the posts I read and hope that I will be able to write my daughter's sucess story soon.

Sandy - posted on 01/13/2009

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Too much drugs ... too little drugs. Fine line to finding the 'right combo and dose'. No easy fix unfortunately! I've been 'playing' with drugs since July 20, 1999. It is hard but I am still trying to find what Joey needs. Just be careful when increasing. Watch for any side affects even if the drs. say something isn't a result of the drugs ... go with your heart, your mothers instinct!!! I saved Joey a few times by doing what I felt was best for him. Yes, I got yelled at a few times but my son is still alive and driving me crazy! There is a new drug that is due to be available this month. Rusinamide. Check it out and see if it's one you would be willing to try. I will be doing the same soon.

Keep in touch and let me know how things are going and what you are trying. This way everyone else can see what you are trying and be able to learn from your experiences and mine and each other. A great way to educate ourselves!!!

Kristi - posted on 01/13/2009

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Can to many drugs cause seizures or not the right grouping?  They have yet to decrease, just add new...

Sandy - posted on 01/13/2009

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Hi Lora,
Thanks for the info. I know what you're feeling. The VNS has made a difference and I wouldn't want to know what doses of medicine he be one without it. Read my other post that was to Kristi. It tells a lot about the meds Joey is on and ones we have tried. He was on Gabitril at one point but it was increased too quickly and he was overdosed on it and scared me to death!!! We were on the way to the beach and I had to go back home when he was barely breathing!!! Be careful on the increases!!!

Sandy - posted on 01/13/2009

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Joey wears his magnet on his wrist like a watch. He can use the magnet if he feels a seizure coming on ... or anyone can grab his hand and swipe the magnet over the VNS. He has impulsive issues but has done well with it. The VNS cycles automatically at pre chosen lengths of time. Joey is on 30 seconds and off 5 minutes and it continuously cycles like this. The magnet can kick it on when necessary. I know it has helped Joey. His teachers and school nurses have been trained on how to use the VNS.

Joey is on 900 mg of Trileptal 2x a day. Tried adding Keppra again (he was on it with Trileptal when he was 3 or 4 years old and I didn't notice any problems) but this time his behavior changed, anger. Very nasty. Zonagram did the same. Watch the Lamictal for side affects. Joey had one that wasn't on the list and the dr. refused to believe the Lamictal was the cause of his facial rash. I had to drop the dose and watch him to prove my point!!! He had a horrible facial rash that grew up to his eye and closed his eye completely. The eye dr. was about to lance his eye open. That is when I dropped the dose and eventually took him off the Lamictal. I know this is all hard to deal with but you are NOT alone!!! You have all the support here! All you have to do is ask!!!

Funny that Topamax didn't do too much for Joey either. I am trying to get the drs. to let him have some Phenobarbital but they keep saying no. My opinion is ... the Pheno will help control seizures and also calm him down. He has impulse issues due to 1/2 of his frontal lobe having been taken out and about 1/4 damaged when he had a stroke. I will continue to advocate for him but I wish these drs. would realize that I am trying to do what's best for him and if I want him on a drug that is suppose to be addictive .. it's my choice. He'll be on medication for the rest of his life. A life that could be taken with one of the seizures that aren't controlled.

Kristi - posted on 01/13/2009

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Topamax didn't work for our son, he is currently on 7 ML of Tripeptal twice a day, 17.5 ML of Keppra twice a day and now Lamictal 2 tablets twice a day.



Question on VNS, my son is cognitively impaired, and for him to have control of the magnet concerns me, what are teh effects if he were to hold teh magnet even though he was not having a seizure?  And are each of you children still on a medicine regime with the VNS?

Lora - posted on 01/13/2009

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HI!



Jacob is on  1000 Keppra twice a day,  750 Trileptal twice a day, 100 mg.Topamax twice a day and Gabitril 4mg twice a day.  Alot of meds but he would be on more I know if it wasn't for the VNS.  Hope this helps.



 

Sandy - posted on 01/11/2009

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Hi Lora, Too funny. My last name is Lora.

Could you please tell me the 4 medications you son is on? I am having a very difficult time of getting the right combo of drugs for Joey.

Thanks,
Sandy

Sandy - posted on 01/11/2009

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If you need help paying for it .. call the makers of the VNS device. Cyberonics, their number is 1-888-508-8082. Insurance should cover this device.
Good luck,
Sandy

Jessica - posted on 01/11/2009

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Hello, again. Actually I just googled NeuroPace and got my info from there. I really hope your insurance will help pay for the VNS.

- Jessica

Lora - posted on 01/11/2009

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I have a 15 yr old son that was implanted with his 1st VNS in December of 2000.  He needed a replacement this past spring of 2008 due to the battery of the device needed to be replaced.  The VNS has allowed him to be on one less medication.  He also has not had any ill side effects from it.  He is still taking 4 other seizure medications, his seizures are difficult to control at times but I do believe this device has helped, he would probably be on a higher dose of medication(s).  I would definitely consider VNS.  Hope this helps.

Carrie - posted on 01/11/2009

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Thanks Jessica - Do you have any information or a website about NeuroPace?  I haven't heard of it.  Sounds like you had some success with the VNS - I am anxious to hear from our insurance company and the doctor so we can get this thing started!!

Jessica - posted on 01/11/2009

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Hi, my name is Jessica. My son, Kody, contracted encephalitis when he was 9yrs old (his is 15yr now) from an unknown virus and has had seizures ever since. He had epilepsy surgery in 2005 to see if they could remove the focal point of his seizures but they could not so they placed the VNS instead. That has actually cut his seizure activity and severity in half!! We are actually at the Children's Hospital of Milwaukee, WI right now because they wanted to try again to see about removal of the seizure focal points but once again were unable to remove any brain matter without the posibility of severe deficits. We are now going to wait for the next "new" therapy.... NeuroPace, which is only available in adult patients right now. We are prompting them to start a pediatric trial though. I think you should give it a try!

Carrie - posted on 01/08/2009

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I will definately keep all of you posted on Dayne!  Still waiting for the ok from the insurance company - blah!!



Again, thanks to all of you - it is so great to have other moms to talk to that understand what we are going through!

Jenna - posted on 01/07/2009

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Wow, that sounds exactly like what happened to our son, only his encephalitis was caused by the herpes virus that gives evryone else cold-sores. He was infected at 11 mos old and had a huge seizure. Like your son, he was seizure free for four years and had his first seizure at age 5. I haven't heard about VNS Therapy, so let me know what you find out. Our son is on a drug called Lamotrogine and so far it has been very effective, and a bonus is that he doesn't need to have his blood levels checked regularily with it. He doesn't seem to have any side-effects now, although when he started on it he had some drowsiness. That lasted for a few months only because with this drug you have to start with very low dosages and increase at very small amounts, so it took him almost two months to get up to a theraputic dose. He has been on this dose for almost a year now and has had no problems. I don't know if you have tried this drug, but if not, mention it to your pediatrician. Does your son experience sensory distortions with his seizures? Lately our son has had a few occasions where he has smelled a strong smell nobody else can smell or seen flashing lights behind his eyes and we were wondering if this could be another form of seizure activity.

Sandy - posted on 01/06/2009

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Hi Kandie,
I feel the same way about the VNS. Joey is in 3rd grade and doing pretty well. Please let me know what vitamins you are going to try. I am still looking for the 'correct' combo of everything to stop Joey's seizures ... or at least contain them well.
Good luck,
Sandy

Sandy - posted on 01/06/2009

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Hey Carrie,
I do suggest the VNS. It might be the miracle you've been looking for. I know the drug situation and it stinks!!! One thing to remember ... sometimes it's the combination of drugs that can cause the hives or other side affects. I've been messing with drugs, surgeries, tests, for 10 years .. and the VNS since 2004. Joey is still alive when it was predicted he wouldn't live to be 18 months old. Keep trying! Ketogenic Diet might also be of help too.
Sandy

Kandie - posted on 01/06/2009

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My son has had the VNS for 4 years. He has been on all types of meds with this devise. My son has been off of meds on for 3 months and we just had the VNS turned up.He has not had a seizure yet.We are also going to put him on a vitamin program to help out with the seizures. Let me know if you want more information on the VNS and how it has helped my son in school.

Carrie - posted on 12/31/2008

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Thanks for the feedback! Sandy - he is currently taking Keppra and Depakote. We have tried Dilantin, Topamax and Trileptal. The last two he is allergic to (severe hives, which brought on more hospital visits!!) I just don't think his body uses the medications the "right" way because his levels are all over the place whenever we have blood work done. The more I read about VNS, the better it sounds for our situation. He struggles in school and really doesn't have any close relationships with people outside our family. It makes me sad for him!! I will definately use the information I have found in this group to help him out however I can!! It is so nice to be able to talk to others who know what we are going through. I'll keep ya posted - and thanks!!

Sandy - posted on 12/31/2008

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Hi Carrie, Joey had the VNS 'installed' in August 2004. There is a difference with the device. Joey's seizures are severe as you can read about or check out joeylora.com and see what he has been through. The VNS can be turned on instantly during a seizure, with a swipe of a special magnet that he wears on his wrist. Joey's is off for 5 minutes and on for 30 seconds. It continuously cycles like this. Have you tried Trileptal? Joey has been on it for 8 years and it has been his base drug. We are getting ready to add one of the newest drugs in Jan. to see if we can cut the seizures down more. He was put on Abilify for behavior and it made his seizures horrible!!! The worst ones ever! Lastin 4 - 5 minutes with his arms and legs jerking. Joey never had his arms and legs involved until the Abilify. Beware! Drugs help but as you have seen, the side affects can be worse. Zonagran and Keppra can cause violent behavior. At least they did in Joey.

Back to the VNS ... I believe with all my heart that it is helping control some of his seizures. Definitely worth a try!
Sandy

Ilyse - posted on 12/31/2008

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My daughter has not had the VNS, however, I met a mom recently at an epilepsy support group meeting whose teenaged son had it and said it basically saved his life. I also know a 40+ woman who can't imagine what her life would be like without. She has to swipe hers when she has an aura and his goes off automatically.

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