Made a Horrible Mistake

[Starburst]

Hi Everyone...
The last couple of EEGs my 19-year-old son did were completely normal, so the doctor said that we could eliminate Keppra from the medications he was taking. He was taking 2,000 mg per day, and we were supposed to reduce this by 250 mg every two weeks.

First of all, does this sound slow enough in your experience?

When we got down to 750 mg and then 500 mg, my son was feeling strange...but he did not tell me this. He was getting auras and feeling brief electrical shock type sensations. If I had known this, I would have certainly contacted the doctor.

In any case, I made a horrible mistake. After 2 weeks of taking 500 mg, I should have further reduced the dose to 250 mg for another 2 weeks.

For some reason, I got confused and thought that 500 mg was the final reduction. So, the last dose he took was 500 mg, and we completely skipped the last two weeks (which should have been 250 per day).

36 hours after his last dose of medication, he had his first-ever tonic-clonic seizure.

It was terrifying and horrible.

This happened on Friday, and I just realized today that I made a mistake with the dosing.

You cannot imagine how horrible I feel about this mistake.

Now, I know that no one has the answer to this question, but I am interested in your opinions. Given that my son was feeling these auras for the last several weeks, do you think that he was on the path to a tonic-clonic regardless of whether we had completed the tapering in the proper manner?

In other words, if he had taken the 250 mg per day in the end as he was supposed to, would it have made any difference?

The only silver lining I can find in this situation is that the seizure happened at home and not on the street somewhere.

But the question is: Was I the cause of this seizure?

 

[masterjen]

This is a question for your neurologist in order to obtain "the" answer, but in my opinion, your son was likely experiencing simple partial seizures at the 750 mg stage which (again, just in my non-neurologist opinion) means the higher dose of keppra was doing more good than the doctor suspected. Your son was on 2000 mg and had gradually decreased all the way down to 500, so I don't think not doing the 250 mg stage would have changed the fact that he had a stronger seizure.

In a sense it was your son's "fault" for not reporting the auras and odd sensations. As you said, you would have called the neurologist, and probably request a (perhaps temporary) increase in the dose of one of the other medications your son is on.
What did the neurologist decide to do? Put up the dose of another medication or add the Keppra back in? Does he still have the auras? I hope you "lowered the boom" on him to in the future tell you if he has any of those odd sensations again!

 

[arnie]

I pretty much agree with what masterjen said, so don't beat yourself up about this, OK? The one thing you need to do, though, if at all possible, is to see an epileptologist instead of a neurologist. After 30+ years of being treated for epilepsy by a couple of well-respected neurologists, I now realize, after one visit with an epileptologist, that epilepsy is far too complex a disorder for anyone but an epileptologist to treat. I don't believe in having regrets about things, because there is no way to change the past, but I do believe in learning from the past and making changes when needed. I do know, for an absolute certainty, that the course of my epilepsy would have been vastly different had I been seeing an epileptologist for all these years. For one thing, I almost certainly would not have the long-term damage that I have from having 30 years of meds and, more importantly, 10,000 (or more) poorly-controlled complex partial seizures, and probably 100,000+ subclinical seizures over those three decades.

Carry on!

 

[knothing]

Some lack of communication, yes. Were you the cause, in my non-medical opinion I would have to say no. Treatment of seizures is sadly not anywhere close to an exact science so there is always risk when making changes.
I would 'lower the boom' to get it through his head that he has to tell people how he is doing. He is his best advocate but he has to speak in order to help himself.

 

[N Sperlo]

Like knothing said, there was some lack of communication, but in all honesty, I don't think the sudden drop in dosage caused the seizure anyway. Sounds to me like the Keppra was doing what it was supposed to do. I highly doubt you were the "cause" of the seizure.

I had my first T/C years after I stopped Keppra.

Just need to straighten things out with the doctor. Good luck.

 

[Zolt]

Hmm, at 19 i would think he can manage the dosage reduction on his own? I would hope so. To me the ending of the meds is crucial, the smaller the dosage you can get it down to, the better. If your body is used to the meds and all of a sudden it STOPs, that can be a cause for seizures. A lot of drugs one needs to taper off and at the end part it's critical, since that is when your body will be in most shock, since it's not getting it anymore.

Also while he was reducing, was he going on some other medication?

My 2 cents

 

[Fedup]

Starburst

How are you, the first thing you need to do is stop blaming yourself, you are so wrong doing that and second stop looking for reasons for this to happen to your son. Yes he is your son and you would do anything for him but that does not mean you did something wrong. First most EEGs come back normal so the doctor was wrong to dismiss a drug for this reason. Yes reducing it by 250 mg every two weeks sounds kind of right, but I am not your sons doctor. So yes this sounds slow enough.

That is a hugh mistake, oh wait, no its not a big mistake is where you leave your credit cards on the table while you get a cup of coffey. Ok this happens so what its not your fault and you were there looking after him so I think you beat that over the head. One of the drugs I take the smallest is 400 mg so if and when I come off it 400 mg will be my last amount.

Give over on the mistake piece you are human like the rest of us and we all make mistakes.

You or I cannot forecast a seizure, neither can your Son, yes some of us get a warning - but you cannot be expected to run before you walk - it takes getting used to, a lot of getting used to before you get the feel of things (if you understand). There is no reason or rhyme to any of this, you can say a brain tumor or a lesion or anything and all this can be true but you still cannot forecast when, where, what, how or why. All you can do is what you are doing now, LOVING him.

Did you cause his seizure, no not by a long shot. You could not have caused it if you tried. You are going above the call of duty, You have no idea how much you mean even though it has not been said.

 

[marika853]

Starburst,
First let me say that I get that you blame yourself. I'm a mother of 3 grown sons. We Never stop being their MOm! Second, he is 19 and should have told you what he's feeling, but probably didn't so you wouldn't worry.
Let me share my experience with you. I am 60 and was diagnosed at age 53 in 2006. In 2008 my husband passed away and I had a very bad time. My dr. had prescribed 1000 mg. generic Keppra. Did fine with that. In Dec. 2013 I asked my neuro if I could reduce or possibly get off meds. Since I hadn't had anything since 2008 he said "Sure, quit." Cold turkey! I didn't think that was right so I told him. He said, "If it makes YOU feel better go off slowly." So in Dec. I went down to 750, 500. Well when I got to 500 I started having auras. So I took myself back up to 1000. I have an appt. today with a new dr.
Luckily, I could judge for myself what was happening but your son may not have been dealing with this long enough to know.
IT'S NOT YOUR FAULT!
Good Luck
M

 

[notime]

For the medication? I am obese and I am also on lamictal, so this probably changes a lot of my dosing schedule. I started off with 1000mg, and kept having seizures, increased it until 3000mg and it didn't work. I was then put on lamictal. I kept having a lot of memory issues with keppra, and it didn't work at full dose so my doctor is taking me off very slowly. He reduced it back in January, then few weeks ago, and in July it will probably take me off of it. He cuts it by 1000mg those last two times. So, it's probably different person to person.

I was lucky enough to be diagnosed with epilepsy with the first 30 minute EEG test which saved a lot of money, and I cannot afford many tests. Usually an EEG is just a useful diagnostic tool for diagnosing epilepsy. Just because you have no spikes on an EEG does not rule out epilepsy. I've read that people went to the hospital for a week with video recording and never spotted epilepsy, there was a video about it at ted: https://www.youtube.com/watch?v=cRqqRFr5ceQ point is it's just a useful diagnostic tool. The same applies for an MRI

Usually the patients' medical history is very helpful, and especially with those who sees a person having these spells such as teachers, relatives, friends, and so on which is also important. At first, they thought I had syncope, but I knew something was wrong. I was very weak, confused, and was sore all over and I kept wanting to see a neurologist and finally got referred to one with additional training in epilepsy and he got it right.

I recommend a neurologist with years of experience or like mine with additional training in epilepsy who treats other diseases as well. The best would be an epileptologist.

Don't blame yourself, you didn't do anything wrong. It's in the past, just move on and learn from it. Epilepsy is hard enough on people; it's trial and error until they can find out what works for people. Try getting your son to keep a seizure diary, and write down any seizures, spells, side effects, or something that may trigger it, or anything that can be helpful for his doctor. I suggest you write down a list of questions and have your son write down a list of questions, perhaps if you go back to your neurologist or get a new one setup a separate appointment just for questions. A lot of this could be useful to you & your son, and useful to your doctor who can try to treat your son to the best of their ability.