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Mom from Holland
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« on: January 06, 2008, 05:15:32 PM »

: newbie :
I`m a member very shortly, i introduced my self and my son in "my story".

Tomorrow we go for the hospital, en wednesday my son( 13 y) will get his second vns.

The battery is still working at this moment, but the neurologist told us it will be empty this year.

We spoke al lot of people  waited till the battery was low, but they become a lot of more seizures then.
So our son will get it some earlier.

When we are back, later this week, i`ll tell you how it is expired.

And i will try to tell how it is here in Holland. It is a little bit the same like yours a couple of years ago.



 
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Nino`s Mom, from Holland.
 Mom of a 16 years old son, vns since 2002.
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« Reply #1 on: January 06, 2008, 07:16:24 PM »

AH, very good!  It will be interesting to hear how it's done in Holland.  Thank you very much!  :D

Good luck to your son on his new VNS
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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 #2 on: January 07, 2008, 12:31:13 PM »

Hello and welcome! I am so sorry! I completely missed your first post among the other posts. I'm so glad that you posted here. I would have never have known you were new or had posted. I don't know how i missed it but I did. I hope that you will forgive me!
We can understand your posts very well. I hope that you can understand us too.
If not, please ask us to explain. We want you to feel welcome and to be able to understand us too so no one here will mind explaining if you don't understand.
I hope that your son's VNS replacement surgery goes very well and hope that you will give us an update when you can. like Birdbomb, I'm very excited to know more about the the VNS in Holland and if it works the same as the United States. Take care, Fay~ Scott's Mother
 
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« Reply #3 on: January 07, 2008, 02:17:28 PM »

I hope everything goes well with your son. I had my battery replaced last January. It is so much easier than the first surgery. You don't have to deal with the neck incision. It isn't painful like the first time.

Keep us posted.
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Fay
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« Reply #4 on: January 10, 2008, 05:06:18 AM »

Hello Mom from Holland! Was wondering how the appt went yesterday and hope that you will give us an update soon. Take care, Fay~ Scott's mother
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Mom from Holland
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« Reply #5 on: January 10, 2008, 06:11:21 AM »

Thank You all for your support!
Everything went well yesterday, and we allready went home yesterday night.
He still has some pain, especially if he wants lie on his back.
But he is playing, eating and making sociable sounds( he is mental disabled) all the day.
So he is very well! :D


 He got the 102, because the 103 is in Holland still available at one hospital.
In our hospital it becomes about a half year. But we didn`t want to wait for it.

 By the way don`t mix me with the "Dutch mom" at the CWE!!! I`m a lurker there :yes2:
And i know a couple of you is a member there too!
Although i know her pretty well. She is the great moderator of a dutch forum for children with epilepsy( syndromes etc), well,  i am a little moderator there.
Here son has also lgs, but is very well on the ketonic diet.
But here english is much better than mine. :D

So for now, it must be this!
I`m going take care of my son.
Bye,bye!
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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.
Fay
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« Reply #6 on: January 11, 2008, 08:16:34 AM »

Thank you for the update on your son and glad the surgery went well.
I hope he's still doing ok today and isn't hurting too bad.
I'd like to ask you a few questions and hope that you don't mind answering them.
Where is your sons incisions? Are they implanted in Holland the same place- left neck and upper chest- as they are here in the States? Do they turn the VNS on immediately after being implanted or do they wait a few weeks for the incisions to heal? Do you use any special medications, ointments or lotions to make the scars less noticable? Did they turn his new VNS on as soon as it was implanted or will they turn it on later? Sorry for so many questions! Your country is far away and you are the only person I know from another country that far away to ask. Thank you, Fay~ Scott's Mother
 
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Mom from Holland
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« Reply #7 on: January 11, 2008, 08:52:39 AM »

Hello Fay,
Of course i don`t mind to answer your questions!

Nino is doing allright already, he rolls at his back, slept already on his chest!    :huh:
We try to be carefully with him , but he isn`t by him self.

 
They make the inscissions on the same place, and the implatation is just like in your country.

The first time they wait about  2 weeks to turn it on.
The second time, like this time at my son, it turns on immediatily but it is put on 2.25 instead of 2.50 what is usually for him.

We don`t use anything for the scars, Nino does not like it at all. But the most adult use a lotion specially for scars. There are no medications used for it.

I do understand when you want something to ask me, because i read your forum too.
I also wants to know a lot of the vns in your country.
But i think it is more diffucult for you to read our Dutch forum! :D

You be welcome,






 
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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.
Birdbomb
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« Reply #8 on: January 11, 2008, 09:30:06 AM »

:Great!:  
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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 #9 on: January 11, 2008, 11:48:33 AM »

I'm glad your son is doing so well! It is so interesting to hear from someone from another country. I had my battery replaced last January. They turned it right back to 2.75. I have mine for TRD (treatment resistent depression).

Please keep in touch with us!
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« Reply #10 on: January 11, 2008, 03:05:51 PM »

I'm sure that if I joined the Dutch forum I might can read it by sounding it out the American way (so i know it won't sound dutch by any means and I also know that I won't be able to understand it either! Thankf for the offer though. I know I'd be very welcome there!
I wish I did know how to read and speak Dutch though as both my mothers and fathers ancestors came from Holland. Over the years both families have added Irish, German and American Indian bloodlines too so I'm a wonderful mixture of great people.
Thanks for adding the picture of Nino as your avatar. He's a very handsome young man! Scott's picture is my avatar too.
I've tried many different things for Scott's scars but nothing has helped so i leave it alone now. it seemed that the more I tried to make it look better the more the scar tissue grew so I quit. I think the rubbing stimulated the scar tissue growth.
Does Nino have any side effects of the VNS? have you noticed a difference in his seizures since having the new one implanted yesterday? It's prob too early to tell.
Tell him we hope he heals very quickly. Take care, Fay

 
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ryansmom
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« Reply #11 on: February 03, 2008, 01:17:43 PM »

Hello everyone   New to the Booard. My son is 5 and is scheduled for for vns implant march 28. Can anyone describe some of the effect he may feel so I can be prepared. Iam very concerned regarding everything I have read. I thought i have done alot of research but I see there is still much to do. Any info any one can give would be appreciated
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« Reply #12 on: February 04, 2008, 03:53:21 AM »

WELCOME to the board! I'm 48 and have had the VNS for 2 years and 4 months and I'm doing great! I'll let members whose children got the VNS address that issue. Remember, most people that do good with the VNS don't post. They just go on with their lives.

I got mine for treatment resistant depression (TRD).
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