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frances
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« on: January 20, 2007, 07:29:32 AM »

My little girl, just turned 6 had a vns inserted and turned onto its' lowest setting on 12th Dec. since then we feel her seizures have gradually got worse. We weren't sure and it was turned up again (to .75) and she has started having frequent tonic clonics in her sleep which we have had to treat with clobazam for a week now.
Before having the vns she was just having spasms and altered breathing seizures in her sleep, we only saw tonic clonics when we weaned drugs. The reason we had vns inserted was to improve the subclinical seizure activity and to try and be less riged with the ketogenic diet that she has been on 2.5years now.
I can't contact anyone at our hospital that can alter the vns so on gut instinct I have taped the magnet onto her chest to stop the stimulation.
Will this be ok to do this?
Also has anyone else had the experience of seizures worsening with vns?
Has it been put up too quickly? I believe it's a standard procedure they've been following? (She has it 30secs on every 5 mins at 0.75)
Would really appreciate any advice as struggling on our own here.
We live in the UK

Frances
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Birdbomb
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« Reply #1 on: January 20, 2007, 08:53:42 AM »

:Welcome: frances

Unfortunetly one side effect of VNS therapy is an increase in seizure activity.  There is just no way to predict the outcome of stimulating the vagal nerve.  This treatment is very individualistic.  Taping the magnet  to stop stimulation may help until you are able to get in touch with the doctor.

Have you placed an emergency call into the doctor? I know some doctors do not like to believe the VNS can make a bad situation worse but it can and does happen.  

Have you downloaded the Manuals?  

Here is the link to Adverse Events

Sometimes just turning the unit off for a few months and they trying again may make a difference.  Good luck, Please keep us posted on how you little girl does.


 
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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!
frances
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« Reply #2 on: January 20, 2007, 10:05:21 AM »

There's only 2 people at our hospital that can alter the settings, 1 of whom works part time but will try and track the other down on Monday. Will keep you posted. Frances
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Petunia
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« Reply #3 on: January 20, 2007, 01:28:45 PM »

Hello, I'm one of those people that  had more seizures while my VNS was on. What you did with the magnet was right on. It's excatly what I did with my magnet until I could get into see my doctor. Well, first I wanted to see if it really made a difference. I wanted to see if the seizures stopped or slowed down. Which of course they did. Then I had to wait to get into see my doctor. It happened to be a long weekend, the weekend I really needed to get it turned off.  <_<  All that time I worn the magnet taped to my chest. They're not kidding when they say duck tape can be used for ANYTHING!  :excl:
Anyways, I hope you get in to see your doctor soon. Please come and let us know how things are going. If you have anymore questions for me, please let me know.
 Elisa
aka (petunia)
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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.
frances
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« Reply #4 on: January 20, 2007, 11:17:10 PM »

Thanks for your reassurance Petunia I taped the magnet on to her chest last night there was no instant improvement but I guess it takes time for the brain to settle down. I took it off this am as I wasn't sure it would stay in place if she was moving about.
Will try it again tonight and then try and contact someone at the hospital tomorrow.
How long did it take for your seizures to settle down after turning off the  vns.

Frances
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Bernard
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« Reply #5 on: January 21, 2007, 02:26:41 AM »

Quote
Unfortunetly one side effect of VNS therapy is an increase in seizure activity. ...

 
[nitpick]you forgot the word potential[/nitpick]

frances, I hope you are able to work with someone soon in adjusting the VNS and finding a setting that helps.  Perhaps Cyberonics can recommend another doctor in the area who is able to assist with changing settings?  I personally would not be comfortable with a situation where no one is available to help in an emergency.
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Birdbomb
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« Reply #6 on: January 21, 2007, 05:09:36 AM »

OT

 :Two Cents: Political correctness/marketing BS is not my forte.  I am a straight shooter and don't play word games, unlike the obsessed little troll who cyberstalks this site.
: Sign043 :


 :Please Note: Stimulating the vagal nerves gose BOTH ways.  Harmful and benificial.  Using this form of therapy, there is just no way of determining who will recieve which one.

VNS is a CRAP shoot.




 :Yeah That:  
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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!
frances
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« Reply #7 on: January 21, 2007, 05:09:36 AM »

Have an appointment tomorrow am to adjust vns- not sure whether we should get the setting reduced or turned off to answer the question of whether it has been aggravating her seizures. Does it take long to know?
Frances
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Petunia
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« Reply #8 on: January 21, 2007, 06:47:10 AM »

Frances I don't know what to tell you, everybody is different, and I don't want my opinion or experience to sway you one way or another.
My VNS was put in and what happened it just what is happening to your daughter. I would continue to go back, and every time they would change my settings. All the while telling me all of this was normal, lots of people experienced an increase in seizures and they just need to tweak the settings.
Now, every time I went back the
« Last Edit: January 22, 2007, 05:51:47 AM by Petunia » Logged

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 #9 on: January 21, 2007, 07:17:58 AM »

Frances, this is a very precarious situation.  VNS changes the seizure patterns.  Sometimes, when the unit is turned off, rebound seizures happen.  But I think a lot of that depends on how long the unit has been active.

Mine was in for about a year and a half when I had it turned off.  The Cyberonic Rep was very concerned about rebound seizures as was my neuro, so I began taking lamictal as a precaution.  I did NOT have any rebound seizures and was only on the lamictial for a month.

Children can and do react differently than adults.  We can't give you any medical advise, but we can prepare you for different serniros that can play out.

You have a few choices here.
  • Do nothing and take a 'wait and see' approach
  • Lower the settings and 'wait and see'
  • Increase/adjust the setting and hope that works
  • Turn the unit off, then watch for any differences.
I am sorry these are options that you will have to deceide what is best for your child.  Since it is not even known WHY or HOW VNS works, there are no clear-cut answers.

As you can tell by reading the posting of other members, many have problems getting their doctors to believe or respond to side effects when they happen.  No one knows your child better than you, TRUST your instincts. [/color]
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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 #10 on: January 21, 2007, 08:47:13 AM »

Hello and welcome to the board.
 Birdbomb is right-it isn't know how or why the VNS works and there really isn't any clear-cut answers. My son had his VNS implanted and about 8 to 10 months later we slowly started seeing the seizures go away but at the same time we also saw his hunger and thirst sensations slowly going away too. We ended up pretty much trading the seizures for a g-tube because he wouldn't eat or drink and lost 21 pounds he didn't have to lose regardless of what we tried. Then about 2 years after that the seizures started getting slowly getting worse again. Not all at once but very slowly. Come to find out his generator needed replacing. From that point on we never got the same seizure control we had in the beginning and things (seizures, totally new medical problems, med side effects, etc) got much worse than they had ever been. My husband and I believe the VNS caused several life threatening medical problems that will affect him for the rest of his life because he did not have these problems before the VNS was implanted or before the VNS generator was replaced. We had Scott's VNS totally turned of for almost 4 years before it was removed and the seizures really didn't increase any at all. Thy had already slowly been increasing while we were adjusting the VNS and the medications. But this is only what happened to us and has been our experience so your daughter might react totally different OR you might not see anything at all. I would have a script for an emergency medication and have it filled just in case with whatever you decide to do. Anything can happen- from nothing at all, to the seizures go away again and everything is great, to anything and everything going wrong.
I hope that you will keep us posted with your daughter and if there is anything I can do to help, please let me know.
My son, Scott, is also on the ketogenic diet. We started the diet for the 2nd time on Jan.18, 2005 and he had his last seizures (so far!) on Jan.20, 2005. he has been medication free since August 3, 2005 so we have the ketogenic diet miracle. We are in the weaning process now but still about 8 months to go before we're off the diet.
Have you visited Matthews Friends website or joined the yahoo keto email list? If not, email me privately and I'll send you the info. Maybe we can help you fine tune the diet or see if you have any area's that might have hidden carbs that can cause problems with seizures too. I'll be more than glad to help you with this too if you'd like. Just let me know. Take care, Fay
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frances
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« Reply #11 on: January 21, 2007, 09:50:54 AM »

Thankyou so much for your replies. Before we had the vns put in we were reassured that it was a straight forward procedure and ramping up process.  
We have been on the keto diet for 2.5 years and had loads of problems initially because of inadequate support  resulting in Mia becoming much worse than she was before starting it. She went from being a child who at 3 could walk,play happily and had lots of words to being unable to sit up, tube fed and lost all her words. Her speech has never come back.
We now have the diet finetuned and working well thanks to a brill  american dietician who has visited UK.  We are also involved in Matthew's friends.
However she is growing very slowly and everytime we try and increase the cals we increase seizure activity also (although nothing like we've had in the last week)
So our hope was that the vns would give us some lee way with relaxing the diet a bit.  
My gut feeling is to have it turned off and see if she improves- she has only had it on since 12th Dec so hopefully we won't see any rebound seizures. What do people think?
I really appreciate your thoughts it puts a more balanced picture on what to do instead of relying on our medical team's limited experience.
Frances xx
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Petunia
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« Reply #12 on: January 22, 2007, 06:03:55 AM »

I think and this is only my opinion as a "web-friend" your instinct is right, and you should turn it off and see what happens. You always need to follow your gut and that's what it's telling you to do. Don't let the dr. tell your differently, hold your ground if that's what you really want.
 
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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 #13 on: January 22, 2007, 07:16:57 AM »

I totally agree with Petunia. Follow your gut feelings. You know your daughter much better than anyone else does and most of the time Moms are right when we make decisions based on our gut feelings.  
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frances
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« Reply #14 on: January 22, 2007, 07:33:49 AM »

Well it's been turned off so will let you know how we get on.
I'm wondering whether the vns is more sensitive with children who are on the diet in the way that drugs are more potent or whether it was just Mia's individual response to it.
Anyway the plan is to leave it off for a few weeks/months and then try again on the lowest possible setting as she had started to brighten up in herself before the seizures took over.
Francesx
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Birdbomb
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« Reply #15 on: January 22, 2007, 07:41:39 AM »

Good luck to your little girl, Frances.

Please keep us informed on her condition.   :bigarmhug:
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
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Electrodes are in me for LIFE!
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« Reply #16 on: January 23, 2007, 05:04:32 PM »

When we implanted my daughter when she  was 5 she had about 40 petitmal seizures. Every time we increased it she had more and more seizures. By the time that we turned it off 2 years later she was having over 300+ petitmal seizures. We have had it turned off for 2 years and she still has 300+ seizures. We found also that the VNS stimulation changed her seizure pattern from focal to generalized with a starting point from the vagus nerve where it entered the brain. It also caused a pitituary gland  tumor.

Our neuro was a specialist on VNS, and he believed that he was using it correctly and instead of helping her it was killing her.  Look at Sedona's story.

Gina
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frances
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« Reply #17 on: January 24, 2007, 02:45:19 AM »

So sorry you've had such a rubbish time I really feel for your little girl and yourselves. I've sent you an email but don't worry about answering the questions as you've told your story on here. I suppose we were lucky that as she had such a dramatic increase in seizures with it that it made sense early on to turn it off.
Her seizures have improved since we turned it off. Every night she is sleeping better we less seizures.
Frances
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Bernard
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« Reply #18 on: January 24, 2007, 02:58:27 AM »

Quote
Her seizures have improved since we turned it off. Every night she is sleeping better we less seizures.

That's great to hear.  I'm sorry the VNS was not helping her, but it is good to get a positive response when you turned it off.  
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« Reply #19 on: January 24, 2007, 05:43:42 AM »

Frances, It's good that the doctor listened to you and turned it off instead of upping it like a lot of them do here in the states.  It can be so damn fustrating dealing with doctors who refuse to listen to patients.

They still don't know how or why VNS works.  But when you stimulate the vagal nerve all kinds of different responses happen.  There is just no way to predict what will occur.  Your daughter case is not all that unusual.

Have you thought about your plans for in the future with the VNS?  Are you going to try again at a later date?  Or have it removed?  If you choose to have it removed, please keep in mind the longer it is in the body, the more scar tissue forms around the electrodes.  

Scott had his in for several years and they could not get thru the scar tissue to remove the electrodes.  Sedona had hers in for 3 or 4 years and her electrodes HAD to be removed because of the need for more detailed MRI scans.  She has had a very difficult time ever since.
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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!
frances
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« Reply #20 on: January 27, 2007, 07:11:04 AM »

Plan is to let her recover a few weeks- so far she's still unstable. She did improve initially but now has had a setback with a high temp. If she settles we might try it again on a very low setting. Have just read a paper about how when children on the diet seem to respond a lot quicker and on lower settings. This makes sense as she brightened up within a week or so of being on it and it was only when it was turned up that her seizures also increased noticeably.
I do feel very very nervous with this plan though and am very sure that you are right about the longer it being in the more problems there are to remove it.
Does it nearly always cause problems when it is removed?
Has anyone else been on the diet and had vns  together?
Can the electrodes stay in forever and just have the battery removed?

Thanks for your concern
Frances  
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« Reply #21 on: January 27, 2007, 03:49:17 PM »

The problem with leaving the leads in a child so young is that they leave enough leads for a growth spurtin a teen age child but the scar tissue in a child is much more. Sedona has enough leads to grow but becuase she was 5 the scar tissue fused the leads to her chest not allowing them to slide up when she grew. It causes damage and it quite dangerous.

We had her leads removed in Houston and the side effect was left side vocal fold paralysis. Leaving them in would have caused more damage than taking them out.
He lung issues at this time are not from the removal of the leads.

Gina
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frances
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« Reply #22 on: January 28, 2007, 07:42:09 AM »

Hi Gina,
Do you know if there is anyway of seeing if scar tissue is forming? Is there anything you can do to prevent it happening? One advantage we might have is that the surgeon said that Mia's vagal nerve was at the front of her neck rather than the back so it should be easier to get to.
It sounds like you've had a terrible time.
It's so hard knowing whether you're making the right decisions.

Frances x
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« Reply #23 on: January 29, 2007, 05:18:14 AM »

The only way to know is if they put her leads in their own pocket. If they put the generator and the leads in the same pocket the friction of the generator on the leads causes them to grow scar tissue over them and stick them to the chest wall.

This is what happened with Sedona and Scott.

Sedona's vocal cord paralysis was caused by them using only one incision to remove the leads from the neck and the chest. The liitle nerve for swallowing is off the vagas nerve. The vagas nerve was not damaged. The leads peeled right off. The scar tissue that was there acted like a straw wrapper over the nerve giving them a little room to work with and get the leads off.

I have a great Peds ENT that will remove the leads if you want it.

Gina
« Last Edit: January 29, 2007, 05:18:53 AM by GBean » Logged
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