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Author Topic: New member here - my son is having VNS next week  (Read 13611 times)
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Angela
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« on: February 22, 2010, 12:42:00 AM »

Hi - My name's Angela and my son Adam who's 10 has Lennox Gastaut Syndrome and ASD.

We've gone through umpteen meds and tried the ketogenic diet for Adam's epilepsy but with limited success.

His MRIs have all been normal and the only thing left for us to try is VNS.

We are in the UK and are going to King's College Hospital on March 5th to have the device implanted and soon after that we will have weekly visits to the hospital to have it turned on and then turned up.

I am more than a little nervous about Adam having the operation - he is developmentally delayed and he's like a four year old and if he won't really understand why he is having surgery.

I've already picked up a few hints about how to prepare for the surgery from this forum, so thanks for that, and I really just wanted to come here to introduce myself and Adam.

Angela xx





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Mom from Holland
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« Reply #1 on: February 22, 2010, 01:45:52 AM »

Welcome Angela!

I`m a mother of a son with LGS too.
Nino is now 15 years old, and got vns now for 7 years, with good results.
He is multiple disabled and like a 1 year old....

I know your struggle with it.
What will it do for my child? What if it doesn`t bring any good?
Nobody can tell you what the results can be for Adam.
The only advice i can give you, is read, read  all about it.

Quote
We are in the UK and are going to King's College Hospital on March 5th to have the device implanted and soon after that we will have weekly visits to the hospital to have it turned on and then turned up.

I hope that they don`t turn up it weekly, because that is too fast....
Have patience, i know its hard.
But its better to do this not to fast.

Succes, and i`ll hope that the vns is the right thing for Adam too!


 
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Nino`s Mom, from Holland.
 Mom of a 16 years old son, vns since 2002.
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« Reply #2 on: February 22, 2010, 05:32:23 AM »

Welcome Angela :Welcome:

Glad you found us and found our information useful.  A lot of VNS patients sharing their experiences made this possible.  No one can predict what the results will be, but listen to the advice given.  Many doctors want to get the VNS at the therapeutic level ASAP but not everyone can tolerate there or even needs it there, it must be tailor made to fit the individual's needs.

Good luck to you, Don't hesitate to ask questions.  Mom from Holland has excellent first-hand information.  Keep us up to date on Adam.
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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!
Angela
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« Reply #3 on: February 24, 2010, 09:03:51 AM »

Thanks for the replies.

I will check with the doctors exactly when they plan to switch Adam's VNS on and how and when they are going to turn the device up.

When Adam has had general anaestetics before for MRIs and dental work we have had problems a couple of days later with non convulsive status kicking in. I will be phoning the hospital tomorrow to ask how they plan to treat him if he goes into NCS bearing in mind the fact that he's been knocked out and his body has had the trauma of surgery.


 
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« Reply #4 on: February 24, 2010, 12:42:55 PM »

:D HI Angela!

A big :Welcome: to the VNS Message Board!  THANKS for joining and introducing yourself & Adam!

I wish you both  :goodluck: with the upcoming surgery!  Please do keep in touch and keep us updated!

Take great care!
B)  
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
Angela
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« Reply #5 on: March 06, 2010, 05:52:48 AM »

Adam's VNS was implanted yesterday.

He slept for a lot of the day and was up a lot of the night happily playing on his Nintendo DS and watching DVDs.



He has been complaining that it hurts today and I've been giving him paracetamol and ibuprofen and he keeps looking in the mirror to look at the dressings which are upsetting him.

We are going back to the hospital in two weeks to have the VNS activated and then we'll be told how frequently we need to go back.

Let's just hope this helps Adam - he's had a really rough six and a half years.

xxxx
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« Reply #6 on: March 06, 2010, 08:19:50 AM »

Adam is doing better than a lot of adults do.  When the bandages come off, rub some liquid vitamin E oil on it several times a day, to reduce the scaring and discomfort.  This is something he can do for himself and it will give him a feeling of some control.

Walgreens carries a really good, high concentration oil and you find it where they display the eye wrinkle creams.
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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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« Reply #7 on: March 07, 2010, 01:56:11 AM »

:D HI Angela and Adam!

Glad to hear the surgery went well, and standing with you (well from across the pond) also hoping he has success.  I firmly believe VNS for Epilepsy has a greater success rate than it does to treat depression.

THANKS for the update and looking forward to hearing from you again!   :bigarmhug: to your Adam.

B)
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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« Reply #8 on: March 07, 2010, 06:48:59 PM »

Hi Angela,

Glad to hear that the implantation is done and went well for Adam.
I hope it will gave Adam a good result too!
But have patience.


Quote
Adam is doing better than a lot of adults do.

BB, the most children are doing a lot of better than adults doing!
Especially the special needs childs.
That is really amazing.
Some of them are really tough!

When Nino got the second, he slept on his chest in 1 day!



 
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« Reply #9 on: March 08, 2010, 05:41:55 AM »

Thanks MfH, just trying to give a bit of support to parents.  It's so hard watching your child have to deal with medical issues and we all want the best for our kids.  Being pioneers of the VNS,  helping to ease the fear and trepidation is part of the job.

My son had facial reconstruction done beginning at age 20 months. It's still a work in progress and he's 32 years old now.  His was a very unique situation and there was nothing in the medical books to guide his surgeons.  There was no one and no internet for information or support for me.  It was the hardest thing I have ever done.
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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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« Reply #10 on: March 08, 2010, 08:32:47 AM »

Quote
It was the hardest thing I have ever done.

BB, i believe you, immediatily!
The decisions parents have to make, for their children, is very hard to deal with, often.

Your reactions, and from others, are great, and necessairy in the parent`s corner.
Other wise, it would be a little bit quiet over here! :D





 
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Life isn`t how to survive the storm,but how to dance in the rain!


Nino`s Mom, from Holland.
 Mom of a 16 years old son, vns since 2002.
Angela
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« Reply #11 on: March 09, 2010, 02:49:33 AM »

Thanks for your replies and support for Adam and for me, Adam is enjoying a week off school watching DVDs and playing his DS.

They don't include any of this in the baby books do they?

He is an amazing little boy - no complaints, he's just a bit tired.


 :Thanx:  
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« Reply #12 on: March 09, 2010, 03:44:58 AM »

I added this stuff to my kids' babybook and pictures.  It's HIS life, good bad, better, worse,  he appreciates it when he's grown because he'll see it from your perspective and he'll have his history in writing.

Not only that, a diary of his progress and experience comes in very handy when dealing with doctors in the future.
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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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« Reply #13 on: April 01, 2010, 09:03:48 AM »

Welcome to the board! Glad implantation went well for Adam!
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Angela
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« Reply #14 on: April 07, 2010, 08:35:55 AM »

Thanks for your kind messages here xxx

A month on and Adam is great. Smiley Smiley Smiley Smiley Smiley

In fact he has been amazing - far better than he was pre op. Coincidence? I don't know.

He is like he was shortly after he started the ketogenic diet which sadly, we never got quite right so ceased after a year or so.

His scar is healing very nicely and he doesn't seem bothered by the stimulation - he just seems to clear his throat now and again.



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