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Author Topic: Have a serious VNS magnet problem  (Read 15732 times)
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Fay
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« on: August 28, 2006, 01:24:31 PM »

I need a few suggestions and am hoping someone here might be able to give me a few suggestions. On the 1st day of School a couple of weeks ago, two teens in his art class asked him what that thing (his VNS magnet) was on his ankle. They thought he had gotten in trouble and wore those ankle bracelets from jail or youth detention center. They then have called him "Jail Bird" in the halls and it really upsets him. Since then he has been taking his magnet off every morning on the bus so that he doesn't get made in front of. His special ed teacher and his art teacher changed his art class to another time so there are different kids but he still refuses to wear it. We had always kept it around his ankle so he doesn't "stick" to anything or mess up computers, his school ID swipe card, etc. Any suggestions?! We have completely ran out of idea's. He refuses to wear it on a belt loop, around his wrist and today I did talk him into putting it in his back pocket but it stuck to his chair and his reaction (it scared him because he wasn't expecting it and plus had forgotten it was in his back pocket) made the kids laugh at him.
Does anyone know if there is such a thing as a small magnet container or something we could put it in that keeps a magnet from sticking to metal that he could carry in his pocket?
Any advice or suggestions would be greatly appreciated. His VNS is totally turned off but he still needs to have his magnet on him at all times just in case it came on or something. Thanks, Fay
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Birdbomb
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« Reply #1 on: August 28, 2006, 02:59:01 PM »

How about a zippered pencil case he can put in a 3 ring binder?  Thrown a a couple of erasers and pencil, some tic-tacs and no one will be the wiser.

 
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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: August 28, 2006, 05:42:23 PM »

That's a great idea but he's in special ed- moderate mentally challenged class- so they don't use binders or anything. He don't even take a bookbag to school. They focus on Job skills instead of learning the normal school stuff. He reads at about a 6th grade level but writes like a kindergartener. He can write his name in cursive but can't read it or write anything else in cursive yet. We are working on it. All those years of hundreds of seizures a day prevented him from learning and now that the seizures are gone, he's too old and too close to graduation (next year- he's in the 11th grade now) so they don't want to be bothered with teaching him now.
Plus we need to be able to get to the magnet pretty fast if needed. I used to send a copy of his medical notebook to school with him in case of emergency's but they always left it at the school or he forgot to take it with him off the bus. So it didn't help any.
Just one more thing that I had to hunt down too many times so stopped. I'll talk to his teacher and see if there some way she could carry it with her and she could pass it to each teacher. I guess I'm gonna need to buy some more magnets too. All I have is the one so if it gets lost, we're in trouble. They are so expensive I dread buying them.
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Petunia
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« Reply #3 on: August 29, 2006, 07:10:09 AM »

Fay,
I'm really confused, why do you need the magnet if it's turned off? Even if it was to come on, you could be called and come with the magnet. Or just have one in the office easy enough to get at. But, with the chances are pretty slim, that it's going to come back on.  BB has had hers off for quite some time and I don't believe hers has ever come back on. Mine was off for a year before it was removed, never came back on.

I really can't blame him even when my VNS was on, I hated carrying the thing, it did stick to everything.
 
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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: August 29, 2006, 08:13:01 AM »

Hi Petunia,
Our Neuro told us that it can turn on unexpectedly (damaged in an accident, spontaniously, etc) even when totally turned off and can go to the highest setting without any warning and he told us we still needed to carry the magnet for this reason. I'm just doing what he advised us to do! Scott's VNS has been totally turned off for 3 1/2 years now but I'd rather be safe than sorry.
Scott has been through hell and back and things have happened to him that we've learned ANYTHING is possible with Scott. Heres just a few things that explains this:
At age 5 he was simply standing up peeing into the toilet when he had a hard drop seizure right out of the blue which slammed him face first onto the rim of the toilet breaking his top jaw in half and several baby teeth below the gum line. They had to do emergency surgery to remove the baby teeth but couldn't do anything for his broken jaw. We found out that they will NOT fix a broken jaw on anyone with any type of Epilespy- even if the seizures are well controled. You can imagine what could happen if the person had a seizure with their mouth wired shut. He developed a severe blood infection the next day and almost died. He spent 2 full months in the hospital because of that. Had I known he would have a severe seizure disorder I would have taught him to sit down to pee and to "aim it down". He's had numerous other injurys thanks to seizures but when things "fall out of the sky from nowhere" like chicken pox 4 times- all confirmed while in the Childrens hospital (and 3 of those times they came from nowhere- schools and docs offices near our home were called from the hospital), you start to listen and do things just to be on the safe side. Now we worry about Shingles as he carries a high chance of developing it.
He was diagnosed with Intracranial Hypertension and Papilledema which are extremely rare medical problems as it is and are more likely to happen to extremely obese young women but yet Scott got it and he was a 13 year old skinny little teen who hadn't even started puberty when he was diagnosed with these. Then at age 14 1/2 he developed a severe case of Henoch Schonlein Purpura that put him into the hospital for 3 1/2 weeks. Another extremely rare disease (Scott was only the 2nd case ever at our Childrens Hospital in Atlanta, Georgia and the first case any of the docs there had ever seen in person) that is most likely to attack little boys between the ages 4 to 7 years old a few weeks after catching a cold or virus- and Scott hadn't even been sick.
God only knows what will happen next to him.
 We'd rather carry the magnet and pray it stays off, than not have it and it comes on. Knowing our luck, the thing would turn on with no magnet anywhere around.
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Birdbomb
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« Reply #5 on: September 01, 2006, 11:58:03 AM »

Here are some internet sources of Cow Magnets but please read the first link as it has information that may save you a future headache.  ;)  




 :Please Note: http://www.cowmagnetscam.org

 :Please Note: http://en.wikipedia.org/wiki/Cow_magnet

 : cow : http://www.magnetsource.com

 : cow : http://catalog.miniscience.com

 : cow : http://www.physlink.com
« Last Edit: September 01, 2006, 12:00:13 PM by Birdbomb » Logged

"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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« Reply #6 on: September 02, 2006, 02:18:08 AM »

Thanks Birdbomb! Now to figure out which company to buy from that is honest and gives the right cow magnets.
I looked in Scott's patient manual and couldn't find anything listed about carrying the magnet even if the VNS is turned off or about it turning back on by its self once it's turned off. I know that I read this somewhere too after our Neuro told us. I had saved it but of course lost it when we changed internet companies. Do you happen to know where I can find this info at?
 
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« Reply #7 on: September 02, 2006, 05:05:42 AM »

Fay, the manual doesn't actually say to carry the magnet at all times, but it implies if the unit malfunctions tape the magnet over the implant.  Well, in order to do that, one must have the magnet close at hand.

I must say, I do not carry my magnet with me unless I travel or leave town.  THEN it stays attached to the handle of my purse for easy access. (it's also far enough away from my credit cards)  If it ever decided to malfunction, then at least I could shut it off until I found a dr. to evaluate it.

The one person that keeps coming to mind when magnet issues come to is a member form the old Cyberonics board who told his experiance....
Walking down the beach he was hit in the chest with a vollyball, this caused a incredible surge in the unit and he did not have his magnet handy.  He said it lasted about 3 minutes and it was very painful.  :Bomb:

Kids in a school setting do all kinds of evil things to one another, getting hit with a ball, book, backpack, fist etc.  Wanting to have the magnet at the ready is a very sensable and safety consious plan.  Does the school allow wallets on a chain? Make an appel to the school board so he can carry his magnet in one.  It will be ready, discrete and macho looking. :punk:

Here is what the Physican's Manual has to say on the issue of magnets.


Quote
9. PATIENT COUNSELING INFORMATION
Patients should be told to test their Pulse Generator
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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 #8 on: September 02, 2006, 09:35:21 AM »

Thanks again Birdbomb.
Last year he did carry his wallet on a chain but this year wallets on chains are banned (considered possible weapons) so he carries a regular wallet in his front pocket so it can't be stolen by a pick pocket idiot. The problem with carrying the magnet in his wallet is that it clears out his school IDc (we already tried that) and they cost $8 each to replace. He has to use it to scan for library books, anything done at the attendence office or even at the school clinic. He won't just put it in his pocket and carry it because he insists he "sticks" to everything. It scares him enough that it sometimes triggers a migraine. I don't think carrying it in his other pocket in another wallet would work. He is mildly mentally challenged but smart enough to know that normal people don't carry two wallets around with them. There is no way that he'd do that. At his age, he wants to be as normal as he can so if something stands out like that, there is no way in reasoning with him. For many years the seizures prevented him from doing so many things so now he just wants to do as much as he can and be like other teens his age. He already knows that he stands out so anything else that puts him apart from his peers he'll fight us tooth and nail about sometimes.
My idea of wrapping the magnet didn't work. It still stuck to the fridge and the washer and dryer although not as bad. Your wallet idea is a great one and am wondering if a little coin holder would work. Especially a thick leather zippered one. I'm going to try that. I bet if we gave it to him and told him if he carried it in his pocket with him, we'd give him money to go into his wallet every week to spend on community skills day every Friday. A coin thingy isn't another wallet and he can carry it in his other pocket. Hopefully it won't stick to anything through the leather. I'll take the magnet with us when we go shopping to be on the safe side.
Thanks for the idea!!!
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Denae1977
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« Reply #9 on: October 27, 2006, 05:39:10 AM »

I hope that by now you have been able to find something to keep his magnet in, if not I have two suggestions for you-

One to carry the magnet- have you looked in the infant section at Babies R Us, or target or something? They have little pacifier holders like pouches many of them are slightly insulated and keep the magnet form killing stuff (i have wiped out more than one credit card  :Icky:  and numerous hotel keys <_<  ) Most of the little holders are pretty plain and look a bit like a cell phone holder. I clip Rileys to either my belt loops or my purse, they could be clipped anywhere. He could decorate it with sharpie markers or stickers, or whatever would make it "cool"  :punk:  

The other idea would be to ensure that each teacher/classroom had a magnet that could be used such as one of those cow magnets, a friend found a small wand like magnet at a school supply company  (Kaplans) that was in the science stuff that works great and was only $1.60.

Again I hope that you have gotten something figured out for him, it is tough to try not to stick out and kids are so cruel to each other during the teenage years.  
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Denae mom to Heather Riley (11), dx'd with LGS after a long journey. VNS since 2/2006. Corpus Callosotomy 4/2010. Currently on -Felbatol, Sabril, Banzel,Phenobarbital, Topamx,Klonopin, and midazolam for emergencies.
http://www.caringbridge.com/visit/roo
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« Reply #10 on: October 27, 2006, 04:16:34 PM »

Thanks Denae. I did find something that works great. Those old timey coin thingy's shaped kind of like an egg that you squeeze to open. The magnet fit perfectly in it and was easy to carry in his pocket. It stopped him from sticking to everything plus kept his ID and the computers safe too. Wished we had known about it much earlier though. Scott just had his VNS removed (the coils are still implanted) Oct. 6, 2006 (3 weeks ago today). He took his magnet out of the coin holder and keeps his change in it now.
Has the VNS helped your daughters seizures? Hasn't it been about a year since it was implanted? I hope all is well with her now.
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Denae1977
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« Reply #11 on: January 09, 2007, 05:57:03 AM »

sorry to be so slow to respond, life keeps us pretty busy.

Back in October I would have said, No I don't see any difference. Then again My answer really depends on the day and how many seizures we have been dealing with. The only thing I can really say that the VNS has done for her at this point, nearly a year after the implant is that her recovery time is much shorter. There have been quite a few times that the magnet has stopped them.

Overall it is not what I had hoped for, I know we were told not to expect anything marvelous like complete seizure freedom, but I did, deep down I did, so when she didnt get control I felt like the VNS was a failure. Now a year into it I feel like my expectations are more realistic.

I got a progress report from her teacher a few weeks ago and she said that this school year (and new VNS settings) she seems much more alert and happier. I can honestly only correlate it to the change in VNS settings. She is on a rapid cycle now. We had to haev Dr. P turn it down in August b/c it was causing her jaw to hurt when we activated it and she was aware of what was going on. Since he reduced her current (? I think thats the right term) and changed her to on 7 seconds / off 21 seconds I have noticed these changes too.

I did hate to have to add a second AED but we had no choice back in September, we lost all control for about a month and even saw some worse stuff such as drop seizures for about 2 months. Thankfully we are back at baseline and even a tad better.

(sigh) it all changes from day to day though.  
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Denae mom to Heather Riley (11), dx'd with LGS after a long journey. VNS since 2/2006. Corpus Callosotomy 4/2010. Currently on -Felbatol, Sabril, Banzel,Phenobarbital, Topamx,Klonopin, and midazolam for emergencies.
http://www.caringbridge.com/visit/roo
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« Reply #12 on: January 09, 2007, 06:32:49 AM »

Thank you for your update on that precious child.  It's good to hear from you.  All we can do is hope for the best, and some are lucky enough to get the best results.  It is nice when others notice a change for the better, like her teacher.  I am glad she is able to verbalize any discomfort she has been experianceing.  This is a great concern with adults who have VNS because we have the communication skills to let doctors know.  
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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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