Son unable to communicate how meds feel, can anyone help?

[dz54]

I just wrote "help with meds" earlier this morning. My son acts manic and I believe it is an ongoing seizure or a seizure about to happen. The Lithium was supposed to calm him down until we can adjust the medication. My son is very sensitive to all medication. My son is on DepakoteER, Dilantin, Banzel, Ativan and Lithium. Seems like Banzel has helped the drop seizures that he has had but we think his manic behavior is due to the Banzel. He is unable to tell us what each medication is doing so we have to report what we see. His pulse gets high (high 90's +), he gets manic and out of control and nasty but most the time this is usually followed by some seizure activity but it could go on for hours. When his pulse is lower the above symptoms are less. As far as the medication goes the pharmacy said only Depakote would raise his pulse.

We would appreciate any help with thoughts or suggestions as we are at the end of drugs to try. He has been having some sort of seizure since age 2. We have been battling the medical world to listen to us and not just to follow what has been taught. My son never has fit the "norm". We are desprately looking for help.

 

[Nakamova]

Hi dz54, welcome to CWE!

I would recommend that you contact your son's neurologist for a review of his medications, and/or get a second or third opinion about his care. It's hard to know if the high pulse rate is caused by medications -- it can also occur during a seizure -- but since your son is sensitive to meds, his reaction may be atypical, or the combination may be triggering some of his behavior.

You're definitely on the right track by noting down what happens before during and after his seizures. The more detailed a journal that you keep, the more likely it is that you'll be able to convince the docs to pay attention. (That has been the experience of many of us here at CWE). In addition it's possible that there may be other triggers that are affecting his behavior, and keeping a journal may help identify them. RobinN here at CWE (you can search for her posts) found that a gluten allergy triggered her daughter's seizures, and has been using diet and neurofeedback (rather than meds) to help prevent them.

I hope you get some answers soon, and can find a replacement for the Banzel that will still control your son's drop seizures.

Best,
Nakamova

 

[Nakamova]

A quick check online shows that not only can Banzel increase the blood concentration of the Dilantin, but more importantly, Depakote can significantly increase the blood concentration of the Banzel. This indicates the possibility that your son's Banzel levels are even higher than intended and that his dosage perhaps be adjusted accordingly.

In addition, some of the side effects of Banzel include hyperactivity, aggression and mood changes, so it may be exacerbating your son's manic behavior.

 

[Endless]

I agree with everything Nakamova said. She did some good detective work there.

Your neurologist can do a blood test to see what your son's drug levels are in his blood, and adjust his meds, if needed. This is a pretty important step with multiple meds in his system.

 

[dz54]

Thanks for your thoughts on Medications

Thanks for your thoughts Nakomova and Endless. We were told Banzel is not measurable in the blood level yet. His Depakote ER and Dilantin are low but we were thinking about getting rid of Depakote. We test his levels pretty often, every other week or so.

Current neurologist states that higher pulse isn't significant (we check with a small oxyimeter (sp?). Neurologist is making us crazy. Actually, his blood levels of Dilatin have gone down w/ Banzel, the opposite of what should happen and we believe Dilantin is needed for Grand Mal control. Unfortunally, every drug taken states mood changes, irratibility, etc. We just need to find the right ones.

This is the most diffficult journey I have been on and we have been trying to help him since he was diagnosed at age 2 (he's 25). We had some good seizure control at age 7 & 8 after taking away corn and milk as suggested by Robin but as he grew older it has had no effect on seizure control. He stayed on a corn free and milk free diet for 15 years or so.

He looked great and was very healthy looking but was angry he wasn't able to eat whatever he wanted to. He's much happier now eating what he choses but weight gain is of course an issue. EEG's indicate there is spike and wave activity most of the time and elimination of certain foods didn't make a difference at this later date (it did when he was younger).

Thanks for listening.