just needing help

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earlybill1

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My daughter is Hayley she is now 8 and its been a long road. To make things short I just got custody of her a month ago. I know all bout her seizures just not the meds n doc. So she has acute onset seizures n on alot of meds her two main meds r lamictal n vimpat. I have appt with doc on 8th but it still seams they don't work. I gotta sit with her every meal, every time she goes to bathroom ion her bad days which is. 5 out 7 days a wk on her good days she is great so full of joy n can do ne thing we can do. Does ne 1 else have something like this if so what did r do u do? I wish I could just take her seizures so she would be able to have a childhood . She also has a pacemaker under her arm pit took 3 surgery to get it rite I don't know if it even work. Sincerely. Concerned father
 
I don't have any children but I did want to welcome you to CWE.

I have to ask though, does Hayley have a pacemaker for her heart or is it a Vagus Nerve Stimulator to help with her seizures? If it is a VNS are you familiar with how to use the magnet on it?
 
Yes its a vns I believe just rubbing across her chest were it is is all I do it don't seem to do much but make her talk like a robot oh n thinks for the welcome if ya know ne thing else pleaee

Sent from my DROIDX using Tapatalk
 
The way I understand it is that if someone with a VNS feels a seizure coming on they can stop the seizure by waving a magnet over it.

You also might want to check out the VNS Message board but if you have any questions feel free to ask. The people here can be very helpful.
 
Hi earlybill1, welcome to CWE!

I recommend that you make a list of questions to bring to the appointment with Hayley's doctor. Write down anything and everything that you are curious or confused about. Some suggestions for what to discuss:

1. Are there any specific details about the VNS to know -- how it works, and how to tell if it isn't working properly, etc.

2. Since the VNS and the medications aren't currently providing complete seizure control, what are the next steps? Can the VNS be adjusted? Can the med dosages be adjusted, or are there other medications that should be tried? Are there medications that you should have on hand to use on an emergency basis (such as Ativan). What about side effects?

3. Is it worth considering a dietary approach to see if that helps with seizure control? (The Modified Atkins Diet has had success in this area).

4. How often should you and Hayley check in with the neurologist? How can you get in touch with him/her if you have questions or concerns?

It might be helpful for you and the doctor to keep a record of how often Hayley is seizing, how long her episodes last, and what happens during them. As far as you can tell, does she have any specific seizure triggers (things like fatigue, or certain foods, or certain situations)? Keeping a journal can sometimes help figure what any seizure triggers are.

Best,
Nakamova
 
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