Anyone take Tegratol XR??

[D L and K's Mom]

Ds is on Tegratol XR (Extended Release) now for about 6 years and had been seizure free. On our last trip (JULY) he had a Grand Mal seizure at WDW. We had to go to Celebration. The only thing they could do was some blood work and waited out the seizure and we returned home. We saw his Dr. and again more blood work. IT did come back that his level had dropped since his last test (4months ago). We increased his night dose. He now takes two one hundred MG in the AM and three one hundred MG at in th evening. both doses are given with food. Well, he seemed ok with it for a week and now he is waking up and he is agitated, he is drooling more, he is going a long time without urinating and when he does urinate his diaper is soaked! He is also vomiting (well, dry heaves) in the morning and he won't eat for us. When he finally does eat in the AM he vomits.These morning symptoms go away after and hour or so. We saw Dr. again this week and he ordered more blood work. He decreased the med at night back to his two hundred mgs. He thinks it is the increase in the medsI am convinced that the seizure in WDW occured because DS was dehydrated (he has a history of dehydrating and his other seizures all occured when he was ill). I am very happy with our Dr. We will be seeing the nerologist in December.....I know its the first appt...I am not happy about that! Ok I will get to the point...anyone feel sick with an increase of Tegratol. It is listed as a side effect but so is everything else under the sun. DD can't tell us how he is feeling. He is a special needs child and does not communicate. He has been sort of aggressive, not towards people but he seems angry and upset. I am wondering if the med is making him do this. Can anyone tell me what it feels like when you are on too much Tegratol? Also this AM my neighbor took his blood sugar and first thing in the AM without food it was 207! Yikes, we will be monitoring that again this afternoon.

 

[SueM in MN]

First, if you haven't already contacted the doctor about the increased blood sugar, do that. A fasting blood sugar (measurement after not having anything to eat for 8 hours) is normally between 70 and 100.
From looking at the drug information sheet, it doesn't look like Tegretol increases blood sugar as a side effect, so keep in mind that he might have other things going on as well as the medication situation.

When they did blood tests, I'm assuming they probably did some looking at liver function?? Liver problems can show themselves as things like nausea, vomiting, loss of appetite. It's not likely for him to all of a sudden have liver problems with the drug since he was on it for 6 years, but who knows with an increased dose? According to the drug sheet, the peak serum level of the extended release occurs between 3 and 12 hours after taking it. So, depending on when he's taking his evening dose, the peak level could be showing up in the morning. That might be why you are seeing the symtoms in the morning, even if he doesn't have any liver problems.
I noticed that urinary retention is listed as a possible side effect.

Since your DS is non-verbal and can't tell you how he feels, I'd expect him to act angry and upset with nausea and urinary retention. Those can't be very comfortable.

Anotherr resource for you would be the pharmacist where his prescription is. He/she can give you advice about how common certain things are and further resources.

Good luck. I know how frustrating it can be when you know there is a problem, but you can't do anything about it. My DD is non-verbal, but she communicates quite well without talking so we usually know where we stand.