Not sure if medication working

[patrickh]

My 16 year old son was diagnosed with Generalized Epilepsy (Tonic clonic) and in the past year has had 7 Seizures. Most where initially are around 1 month apart.

He was then placed on Epilim Chrono 500mg x 2 per day and we thought it may have stopped or at least reduced as he did not have one for 4 months.

After the 4 months it was 2 months then one month. So now feels like it's not working.

Each time it happens is in the evening time (18:00-21:00) when he is relaxing in his bedroom.

What is very strange is he has these all of these after a exciting/anxious day. For example Christmas Day (exciting). Last week I took him shopping for a new suit for higher college (exciting). At a Friends Birthday Party (Exciting). Getting ready for Cinema (excited). After he returned from Hospital appointments (anxious).

Is this normal ?

We have next hospital appointment in November I suspect they will up his medication from 1000mg a day.

It does not seem like the Medication is working. However I would not know.

Also my Son NEVER misses his medication However sometimes the times are out for example when in School he takes first one at 8:00am and when off school he may not get up till 10:30am so could be 11:00am, Could these few hour difference have any affect? Evening time he may take it anytime from 6:00 - 8:00pm. So we have to remind him.

Any advice appreciated.

Regards

Patrick

 

[Nakamova]

Hi Patrick --

It's possible that inconsistent timing of the doses is a factor -- three hours can make a big difference, depending on the half-life of the medication, your son's metabolism, and the amount of medication his brain requires for seizure control. You might ask your son's neuro about taking a blood sample when the levels may be their lowest to make sure there is still enough of the medication in his system to be effective. It could be that the medication dose needs to be increased because your son's metabolism has sped up (as can happen in teenagers), or because he has developed a tolerance at the current level.

Stress -- both positive and negative -- can also play a role, so the pattern you've noted in his seizures could be significant. And sometimes there are other factors associated with stressful events -- changes in sleep habits, in diet, in hydration -- that can also be seizure triggers. Encourage your son to be mindful of his overall health, and to aim for moderation.

Each time it happens is in the evening time (18:00-21:00) when he is relaxing in his bedroom.

This is not unusual -- when we are drowsy or daydreaming, we tend to produce brainwaves that are more vulnerable to seizures. Another possibility: Is your son on the computer at those times? He may be photosensitive. Bluescreen devices (such as tablets and phones) can interfere with sleep by depressing melatonin, so he should avoid them in the hours before bedtime.

 

[Porkette]

Hi Patrick,

Nakamova gave you very good advice. Whenever my drug level was to low I would always have a seizure and often when there's a change in the weather and a low pressure
is coming in it will often trigger seizures and that's because the air is heavier which in turn messes with the hormones and can trigger seizures for some people.
Just like your son I have a pattern with my seizures and they always happen the 3rd week of the month either around 8 am or between 2-3 pm and my Dr. told me it was all do to hormones. As crazy as it may sound I started taking apple cider vinegar with mother in it to lose weight and to my surprise the vinegar has reduced my seizures 50% and the seizures are less severe. The vinegar doesn't taste that great but if nothing else works you may want to give your son 2 Tablespoons in the morning when he has breakfast and see if that helps him but before you do check with the pharmacist to make sure the vinegar won't interact with the seizure med. Wishing you and your son the best of luck and May God Bless the Both of You!

Sue

 

[valeriedl]

Never missing a dose and not taking them on time are two different things.

I take meds 3 times a day and I take them on time, I even have an alarm on my phone set to make sure I don't forget to. I can't remember if it was the pharmacist or neuro that I asked about how long I can go before just not taking that dose and wait to take the next one. It was usually within a few hours, sometimes less.

Stress and being excited about things are also seizure triggers for me. Being tired is also a trigger. I know you said he's relaxing but is just watching tv, or something like that, or is he doing it because he's tired?

 

[patrickh]

Thanks so much for all the replies. We are trying to make sure he takes on time.

The problem is when he is off School he lies in bed till around 10:30-11:00 and I really don't want to wake him up. In school he takes at 07:00am.

He will generally take his evening tablet between 6.30-7.30pm. If he's out then this causes me concern as he's reluctant to take one out with him and take whilst his friends are around.

I will discuss with Doctor on next hospital appointment which is in November. Praying he doesn't have one before. Although his exam results are next week so we don't know how this will go.

I am away with my company as well which adds to the stress leaving my wife alone with him.

thanks for all the help

Patrick