Re: daughter has VNS

[Guest guest]

Hi...

Just thought I'd add my input to this thought. My son, Sev, had the

VNS implant in March of 2002. It was turned on in the hospital and

upped each 6 weeks for the next few months. He cycles 7 seconds on,

12 seconds off all day and has from the start. I have to say that

though Sev still has seizures....some of you may remember what an

intractable little guy he is...they are much more controlled now. He

still seizes everyday, but diastat usage is down 95% (previously at

least once a week for a seizure greater than 5 mintues) and 911 calls

have been completely emlimated! We used to have to call the

ambulance at least once a month for an uncontrolled seizure. So

while not a complete success...he still has between 5 and 20 seizures

a day....they are usually less than a minute and he gets over them

quickly. We even FINALLLLLLLY have him med free...no more of the

pheno for a month now! Hope everyone is doing well...I miss this

group! I'll try to pop back in more often. Nan and Sevi

[Guest guest]

...

>>>>Does your son have to wear a wrist band of some device to keep on

him at all times (the magnet)?

Yes...Sev wears a magnet...its on a velcro band we keep on his

ankle. Sev is 3 1/2 and is severely delayed...we use the magnet, not

him. It doesn't hurt not to use the magnet. It's like a bonus...If

you catch it early enough, you can use the magnet and it might help,

but it's not necessary since the vns goes on and off all the time.

>>Also, did your son experience alot of pain right after the

surgery? Yes...he ended up in the hospital for two nights due to a

combination of pain and not handling the anesthesia well. He cried a

lot those first days and his heart rate kept going up really high.

Once home though, the pain was completely gone...we didn't even have

to use the pain pills they prescribed.

>>Does his voice sound funny often? His voice does have a little

quiver when the device is going off...he's non vocal, so it just

changes the quality of his chatter. It's really endearing.

>>>How is his quality of life with the VNS? I'd say MUCH improved!

We'd gone through 12 meds with yucky side effects and mostly just

increasing seizures. The diet worked better than the meds and I am

still a HUGE advocate of the diet. It just gave out on us and we

couldn't get any control back after the first year. SEv's seizures

are far less severe and greatly reduced in duration and we've gottne

him to the med free point. I really wanted to see this since Sev had

been on meds since birth practically. He has really blossomed this

month off the pheno. He's much more interactive and expressive. He's

very social and loving and flirty...I swear this week he's flirting

even across the room! Hope I've answered your questions. In a nut

shell, I'd say, yes it is invasive. The pain and anesthesia were a

big deal for me and my concerns turned out to be well merited. Even

so, I'd not even begin to second guess my decision....it's been worth

it. I have to say though that I am glad I went the diet route first

since it was non evasive and I learned so much about nutrition and

about Sev while doing the diet. If you have more questions, just

ask...nan

[Guest guest]

For what it's worth, my two cents on my daughters VNS:

It's worked wonderfully. Not 100% by any means as it's certainly no

cure. But it cut her seizures down by about 60% and the ones that she

has are much more controlled. When she gets an aura she doesn't

always have the alterness to use the magnet to swipe over the device.

But the few times we've caught her in time or she's been able to get

it, they seem to really help. Either the seizure is kept at bay or

its a very brief controlled one with no post ikals.

We tried the diet a few years ago but it didn't have much effect plus

it made her awfully sick. Since then we went back on meds and got the

VNS about a year ago. Now we've gone from four meds to two and the

doctor is suggesting it be cut down to one. We're thrilled. Less AEDs

= less side effects.

> Hi...

>

> Just thought I'd add my input to this thought. My son, Sev, had

the

> VNS implant in March of 2002. It was turned on in the hospital and

> upped each 6 weeks for the next few months. He cycles 7 seconds

on,

> 12 seconds off all day and has from the start. I have to say that

> though Sev still has seizures....some of you may remember what an

> intractable little guy he is...they are much more controlled now.

He

> still seizes everyday, but diastat usage is down 95% (previously at

> least once a week for a seizure greater than 5 mintues) and 911

calls

> have been completely emlimated! We used to have to call the

> ambulance at least once a month for an uncontrolled seizure. So

> while not a complete success...he still has between 5 and 20

seizures

> a day....they are usually less than a minute and he gets over them

> quickly. We even FINALLLLLLLY have him med free...no more of the

> pheno for a month now! Hope everyone is doing well...I miss this

> group! I'll try to pop back in more often. Nan and Sevi