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Paul's Mom

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Hi everyone! My name is Alysia and I have a son named Paul. Paul was diagnosed with Epilepsy when he was 7 years old. He is now 12. He has Partial Complex Seizures in his temporal lobe. We went through years of stomach pains, confusing behavior and strange outburst. Last year, we implanted the VNS. After 6 months Paul showed great improvement. He was smiling, socializing, his grades improved and he was overall happier than I have ever seen him. About 2 months ago we came off of all medication. What an amazing change that made in him. I felt like I was seeing my son for the first time.
He had a bike wreck 5 weeks ago which broke his right wrist and his left collarbone. The next day I took him to Neurologist to see if it has damaged the VNS because it was locate under the collarbone he broke. It turns out, it was not working anymore. We immediatly went back on the Trilpetal. 2 weeks ago, we had surgery to fix the VNS. They did not turn it on immediately. We went back to have it turned on Monday and the second it was activated he started writhing in pain. We decided to leave it off to let him heal more and try again this coming up Monday.
The past couple of days he has been having 'episodes' of stomach pains and has been very moody. Today was the worst. He began throwing things at me and telling me he hated me. He has been physically fighting with his father and has tried to run away 3 times. After each of the altercations he cries and tells me that he doesn't mean any of it and he does not know why he is doing it. I called the doctor but of course I did not get his doctor but the one on call which suggested that I drug him up with Atavan(sp?). A few minutes ago he came screaming down the hall saying that things were crawling on his arms then collapsed on the floor saying his stomach hurt. We have been through some tough times but I don't ever remember it being this bad.
Can anyone help me to understand what he is going through and what I can do to help him?
Thank you
 
Hi Alysia, welcome to the forum. :hello:

Hard to tell if these behaviors are related to seizure activity or side effects of the Trileptal. Either way, it doesn't sound like it (Trileptal) is really working for him.

Are the doctors able to test the VNS to make sure it is working properly when they activate it?
 
They tested it during surgery. It worked when his Neurologist turned it on in her office the other day. They said that because they had to pull the old wires off of the nerve to replace them, his nerve was raw and just needed time to heal.
The weird thing is that he is on the same medicine and dosage he was on before. I am just terrified he is going to do something to hurt himself.
 
Oh, well that's different! Removing/replacing the coil from the Vagus nerve carries risks of damage to the nerve. Hopefully it is just as you say - that it needed more time to heal before activation.

Epilepsy is a strange condition. My wife's seizure patterns have changed dramatically over the last ten years. Of course, this was mainly in response to pregnancies/childbirth, but I guess that traumatic events may be similar catalysts in men.
 
His stomach pain could be a result of damage to the vagus nerve. As you probaly already know the vagus nerve also deals with digestion.

The can be a number of different factors for the agression.

I found this off-beat article I think maybe you may be interested in. I realize the stimulator is off but with the nerve discribed as "raw".

http://jnnp.bmjjournals.com/cgi/content/full/69/2/278
 
Birdbomb said:
His stomach pain could be a result of damage to the vagus nerve.
Click to expand...

Good point BB! I didn't catch that the first time.
 
Sorry for the atrocious spelling. I am a lot of pain from wracking my newest knee twice in 2 weeks. I really think I've damaged it this time, going to the boneman tomorrow and getting it x-rayed.

Thank God for darvocet! :hj:
 
All of the things you said sound like great ideas, but the fact is that the VNS had been off for 3 weeks when we started having issues. The symptoms all were symptoms related to his Epilepsy and not the VNS. We know this because they were happening for years before the VNS, just not to this extent. Since I last posted, Paul was admitted into the Intensive Care Unit and then spent 3 days in a regular room while he was drugged up with all sorts of stuff. The doctors said that the stress from the bike wreck, the sudden stop of the VNS and the introduction to meds again sent him into non-stop seizures. That is what we were experiencing when I last posted. Paul has not been back to school since the incident. He has been out of school for 3 weeks now. Since then, we have gotten the VNS turned on and actually just got it increased this past week. He is doing wonderful now. We still have to have his VNS increased three more times to get him back to the level he was on. It is going to be a slow process but he is improving everyday. He goes back to school on Monday.
 
I'm glad to hear that Paul is doing better now. Dealing with uncontrolled seizures in a loved one can really test your spirit.
 
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