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Author Topic: WAY TOO MANY SEZIURES!!!  (Read 6522 times)
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momofky
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« on: November 29, 2007, 11:23:06 PM »

i already posted on the "general disscussion" fourm,and have had many replies.. thank you all..but i came across this pediatric general disscussions.and have been reading all of your stories sice 4 am..  i have been able to relate to many of you as parents,seeing your child suffer and endure horrific things and i'm starting to think that the drs. are the one's that "want to help" at first,but when things go WRONG. they won't admit it's the VNS.. WHY???? i mean are we not all suppoesed to be on the same page and want to help these children that have been THRU HELL AND BACK instead of proving a point that there product is working????
my son has had seziures since he was 4 and has been up and down..the last year or so we noticed he was having so many seziures,and we did some research on the VNS and at first like i'm sure all of us parents with children with epilepsy thought this was the miracle we were looking for all along! and i feel as though dr's pray on that.. now i am noticing kyle taking a terriable turn for the worse and the dr's are not seeming to hear us.. he was having 2-3 seziures a week before the VNS,and after it was implanted he was doing wonderful!!! everything was getting better!!! his attitude,his grades,his sleep patteren,he was able to focus better and remember things better.. we were so happy to see him improve still having seziures,but nearly as many as before.. until 2 weeks ago,he was adjusted and he went downhill so fast!!! over the last week he has had 7 grand maul seziures!! a migraine headache,feeling sick to the point he's haing dry heeves. all in ONE week.for him this is so out of the ordinary. we went to the dr. yesterday,explained to them we feel it's the VNS causing all these seziures. THEY TOLD US ABSOLLTLY NOT! vns doesn't casue seziures.. BULL we know him and even on his worst day before the vns, he wasn't this bad!!!! they said it's a new seziure patteren.!!! so they tripled his adavin.. so that's great now he can be stoned right?? no thank you i can see the path he's on! he's not going to messed with, up and down,this and that.. NO!! we decided that we were going to have the vns adjusted to a setting he had back in august.(worked great for him) but o nthe way home from the dr. he had another seziure! so we have the weekend to "wait and see" and if by monday, things are not better with all the adavin he's going to be one that thing is being shut off!! and then we'll see how he does..
he was bad before the VNS ,but he had a life he was able to go a week or so ,this now he's confined to the couch,tired ,sick and having seziures....
the Vns has only been "ON" for almost 5 months .. so we'll see how he does when it's  off for awhile... i feel as though i'm not geiving the VNS enough time to work,but i cannot see my little boy suffer another day!!!!  :So Sad:  
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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
Birdbomb
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« Reply #1 on: November 30, 2007, 07:35:54 AM »

[span style=\'color:blue\']I feel so bad for you and Kyle!  What you are running up against isn't all that uncommon.  I don't know if these doctors are ignorant to the facts or if it's because the receive some kind of compensation from Cyberonics, but some of them refuse to believe anything negitive the patient reports.  Logic stands to reason, if you didn't have problem XX BEFORE VNS and now you do, chances are VNS had someting to do with problem XX.

Kyle was doing fine until the doctor upped the settings, now he is out of control.  Even the manual addresses that....

Quote
In the event intolerable adverse events are reported, physicians should always try
reducing the output current (mA) as a means of eliminating or reducing the
severity of an event. Addition-ally, physicians should instruct patients or care
givers on the application of the magnet to turn the Pulse Generator off (output
current 0 mA) if an adverse event becomes intolerable.

VNS alters seizure patterns, altering can increase or decrease the number!  How in the world can they tell you it DOESN'T cause an increase? Where did this guy get his training?  Has he even LOOKED at a Physician's manual? Or is he going by what the CYBX Rep told him?

Stick to your guns!   :bigarmhug:

Quote
Status epilepticus: Valid estimates of the incidence of treatment-emergent status epilepticus among VNS-treated patients are difficult to obtain because
Investigators participating in clinical trials did not all employ identical rules for
identifying cases. At a minimum, two of 441 adult patients had episodes that
could be described unequivocally as
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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!
Fay
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« Reply #2 on: November 30, 2007, 07:59:38 AM »

I totally agree with BB! Stick to your guns. The VNS can be a miracle but at the same time it can also cause all sorts of problems and can even kill. Don't let that doc tell you something you know in your heart is right. We went through hell and back (still am) thanks to Scott's VNS. But after it was removed I proved to all of them I was right. Now they all listen to me but they should have listened to me from day one- not years later after it was removed and way too late to even try to fix the problems it caused.
I read and replied to the post you made in the other section so don't want to repeat everything here. I do have some comments to make but would like to ask a couple of questions first.
I can't remember: How old was Kyle when he had the VNS implanted and how old is he now? The way Doctors and Cyberonics react depends a lot on the age of the person who has the VNS implanted. God, I hope Kyle isn't a "User Error" like Scott and so many other kids are. Hugs, Fay
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momofky
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« Reply #3 on: November 30, 2007, 08:10:45 AM »

hi thanks for the reply.. he had his VNS implanted in june of this year,he's 15 years old had has had seziures for 11 years..:( OG god me too i hope he doesn't become user error either.. how sad for your son and your family..
how old was scott when he started having seziures? and when was the vns implated in him? i read in one of your post's that it worked for him for awhile right? you know they did do a "test" to make sure his battery was working properly about 4 weeks ago,and they said it was working great.. so i don't think it's the battery : g :  
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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
Fay
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« Reply #4 on: November 30, 2007, 05:55:49 PM »

Scott was diagnosed with Lennox Gastaut Syndrome at age 3. We learned the same day that the jerks and startles he had beeen having since about the age of 3 to 5 months were actually infantile spasms when the Neuro saw him having a cluster in our very first clinic visit with a pediatric neurologist.
His VNS was implanted Feb. 24, 2000.
Thanks for giving the answers so soon! I don't know why I thought Kyle had his VNS longer than that. I was thinking about 2 to 3 years for some reason. Sorry!
Yes, the VNS did completely control Scott's seizures for awhile. We slowly started seeing the seizures going away about 8 months after he had it implanted. BUT at the same time the seizures were going away so was his hunger and thirst sensations plus he developed about a dozen stomach ulcers and developed severe reflux and severe constipation- none of which he had had ever hd before. After he lost 21 pounds he didn't have to lose (was always perfect weight for his height since the day he was born) they had to put a feeding tube in about 1 1/2 years after the VNS was implanted. We pretty much traded the seizures for the feeding tube. He remained completely seizure free and we even weaned him off of the last 2 Depokote sprinkles we weren't able to wean him off of when he was on the ketogenic diet the first time. We also didn't have to increase the starting dose of the Zonegran plus was able to reduce his Lamictal too. The seizures started up again about 3 years after the VNS was implanted and got much worse within a 2 to 4 week period before the Neuro realized the battery was going dead. They replaced the generator only (using the same wires and coils that were first implanted) in April 2003. From that point on all hell broke loose and he hasn't been the same since then. We now know that the VNS caused vagus nerve damage when it was implanted (the GI problems requiring the feeding tube plus it totally stopped him from growing and going into puberty), more vagus nerve damage when they replaced the generator (developed Intracranial Hypertension and Papilledema, low blood pressure, Cerebral Hypoxia, worsening GI problems) and even more vagus nerve damage (low body tempature, low blood pressure coming back again, swallowing problems, worsening asthma, worsening GI problems, voice changes, neck problems) when they removed the generator and wires (the coils are still implanted wrapped around his vagus nerve). After having the VNS removed his blood pressure became perfectly normal (is starting to become low again though) and he finally went into puberty. He had only grown less than 1/4 inches tall and had only gained 6 ounces in the almost 7 years he had the VNS implanted.
God only knows what long term problems he's going to have. Still have no idea if the coils that are still wrapped around his vagus nerve will cause any problems or not. Agreeing to have the VNS implanted was by far the worst mistake I ever made in my life.
Please keep us posted on Kyle if you don't mind. I hope the seizures get better very soon. hugs, fay
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labrat
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« Reply #5 on: December 03, 2007, 09:28:22 AM »

How did Kyle do over the weekend?
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