When to come off meds

[BensalemAngler]

When we last went to the doctor Jan 12 they said we should start to ween my son off his medicine, this came to shock to both me and my wife. We asked to ween him off in the summer. They said that was ok.

The meds he is on is Depakote and it makes him very tired in the afternoon, so my question is should I really wait until summer? What could be some side effects from weening off his meds?

Could there be "break throughs" or if he has one will he just go back on the medicine?

The only reason why we asked to wait until summer is b/c I do not want him to have a seizure in school.....am I over thinking? Am I insane?

UGH....ANY AND ALL HELP IS NEEDED.

[Nakamova]

There is always the risk of a breakthrough seizure, but no definitive way to predict what the particular risks are in your son's case. You need to weigh the benefit of tapering off (less fatigue for your son) against the risk (possible seizures), based on your doctor's advice and your own instincts and sense of what you and your son can handle. If you're sure that having a seizure at school is to be avoided at all costs, then it makes sense to wait.

As a very general rule, the longer the brain has been seizure-free, the better the chances that it will remain so after weaning of medication. The weaning should be done very carefully and slowly, and (in my opinion) even slower than the doctor's recommendation. Sometimes the neurologist will have EEGs done at each stage of the withdrawal from medication, to see if abnormal brainwaves are showing up -- this can be an indicator to put the brakes on the tapering process.

[Ruth]

Is your son going to be put on another medication?

[Bernard]

Stopping drugs when seizures have been controlled for years

[RobinN]

It is my opinion, that the longer you are one meds, the more your brain expects you to continue them. I think one needs to ask for a very conservative plan to go very slow when reducing the amount.

I know how you feel about your son having a seizure at school. However, if it were me, I would want my daughter off meds the sooner the better. It is a risk, but my daughter does have seizures at school, though they are reducing in number. I still would rather she be off of the meds and have many more good days. Quality of life is important to me, and I am so pleased that Rebecca's days for the most part are very very good.

I just know that you need to support the withdrawal with a good nutritional plan, supplements for brain and body health, and reduce stress and encourage enough sleep.

[Ruth]

It is important to do it under your doctor's directions.

[BensalemAngler]

No not changing meds, just coming off. No Jinx no szs since December 22, 2007. It will be done under a doctors care. They said it should take less than a month b/c once he is under the threshhold of the meds working whether it takes 1 month or 6 months it does not matter.

Luckily for us we are already good eaters and sleep is not an issue. Sometimes I think we get too much sleep, lol. His quailty of life is still good just needs an afternoon nap sometimes. But he does not need them on the weekend. So sometimes I am not sure if its just school making him more tired or what. He is in kindergarten and this is his first time going to school 5 days a week.

Bernard thanks for the link, I will check it out.

Thanks for all your comments, I do believe I have ocd of the brain by over thinking any and everything. lol.

Still willing to hear anyone and everyone who would like to comment.

[Nakamova]

Even though technically the half-life of the med is 1 month, I would still recommend going slower than that. I've found that that even at what are considered "sub-therapeutic" blood serum levels, the body is still aware of the med, and it still is having an effect. The first time I was tapering off of Dilantin, my neurologist said two weeks was standard based on it's half-life. At almost exactly the two week mark I had a seizure. The next time I wanted to taper off, she had changed her mind, and had me do it over 3 1/2 months. I eventually had a seizure after tapering, but not for 6 months after being off. I believe the slower taper made a difference.

[BensalemAngler]

he is still on the same dose he has been on for 6 months, they only moved it then b/c we have not moved it in 1 and a half years.

I know I should be excited and I am, this is the news we wanted from day one. I quess I have feel so safe with depakote in him.

Got to look at the bright side sometimes right? And not for the other shoe to fall.

Thanks again, it means so much to me to have someone to talk too

[Ruth]

Hi Ben, do you feel safer with your son on Depakote? what is ocd?

Does your doctor want to ween your son off of Depakote? School will make your son tired, especially, with medicines.

[RobinN]

Even though technically the half-life of the med is 1 month, I would still recommend going slower than that. I've found that that even at what are considered "sub-therapeutic" blood serum levels, the body is still aware of the med, and it still is having an effect. The first time I was tapering off of Dilantin, my neurologist said two weeks was standard based on it's half-life. At almost exactly the two week mark I had a seizure. The next time I wanted to taper off, she had changed her mind, and had me do it over 3 1/2 months. I eventually had a seizure after tapering, but not for 6 months after being off. I believe the slower taper made a difference.

I agree with Nakamova. I saw this each time my daughter was on meds, and even at low doses, she had additional seizure activity from the drugs, and other neurological symptoms. I strongly agree that a slow taper makes a huge difference.

[BensalemAngler]

Hi Ben, do you feel safer with your son on Depakote? what is ocd?

Does your doctor want to ween your son off of Depakote? School will make your son tired, especially, with medicines.

I only feel safer with him on the Depakote b/c I know it works (no jinx). When he was uncontrolled in July 2007 it made going out and doing things pretty rough. I was always scared he would have one. Always looking around and studying the place we were in, planning out what i would do if he had one. In August and Sept of that year the drs. seem to find the right dose of tegrotal and things were good. Then they went south having one at 10 am and 6 pm when ever he was at pre-pre-k.

Switched to Trileptal which worked except when he had a fever, and i mean any fever, 99 to 102. So in December of 2007 the drs. made the switch to Depakote. Once again starting on the lowest dose.

But something happened, they stopped. We did not have to move up the dose until a year and a half later when they had us take a blood test and saw he was under the threshold for the meds to be working. So we went up one pill.

So long story short, when they switched to depakote and the seizure stopped (no jinx) I was not scared to go out. I was not obsessing over where we were and how I would handle one out at where ever we were. We actually took a vacation to the shore for a week.

Now that they want him off the meds and I am not sure if I will be scared again, I have relyed on the med working so much. SO that is why I do feel "safer" while he is on the med.

Going slow or fast while weening does not make a difference. If he is not "cured" he will have one again. He is on such a low dose that when he comes off one pill he will be under the threshold of the med working. Who knows how long he went with the med not being effective in his system. (This is a good sign, to me at least)

What I mean about OCD (Obsessive–compulsive disorder) about thinking and over thinking. I do not obsess about a lot of things just about keeping him and my wife safe at all costs. So I over think making sure everything is kosher. It also goes along with my superstitions (hence the no jinxes)

Its just the way my mind works, and I am fine with it and what ever happens or can happen to me as long as my son and wife are safe...

Thanks again for your thoughtsand comment, you are all really helping me through this.

[Bernard]

... Going slow or fast while weening does not make a difference. ...

When weaning off drugs, RAMP DOWN

[Nakamova]

The pace of weaning DOES make a difference. It's true that if there's an underlying seizure disorder or low seizure threshold that there may be seizures in the future, regardless of the pace of tapering off. But going off meds too fast can CAUSE seizures, and in my experience, even the recommended pace is too fast. In addition, the brain is plastic, and can potentially change and heal especially in someone young. I understand the relief and security that comes form knowing your son won't have a seizure while he's medicated, but the meds can have side-effects long-term, and sooner or later it might be worth finding out if he can do fine without the meds, or on as low as dose as possible.

[BensalemAngler]

Very true thank you again for all your information. It is really helpful.