I think I'm going bananas

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My youngest son is 8 years old and has autism. He's been doing pretty well with the things we've been doing to help him. He is on a gluten free diet and has been on risperidone. I would love to get him off of that completely, we are in process of reducing his dosage gradually. It was too high before and it was making him "zone out."

Problem is now he is almost hyper active, and the past few days he has been grabbing for food that he knows he can't have...he has not done that in a long time. He's been deliberately breaking things, even toys he received for Christmas. It is very discouraging.

Most of the time it is me home alone with him and with all this behavior the past few days I feel like I'm going nuts. I mean I literally can't turn my back to him for a minute or he is off doing something he shouldn't. It is CONSTANT. He woke up at 4 AM today and hasn't stopped since. If I get upset with him he just thinks it's funny. I was looking forward to school vacation but now I can't wait for it to be over.

Anyone else been through this kind of thing? I feel so guilty for being tired of constantly dealing with my son's issues.

You may want to post over in the parenting forum.

Maybe you've taken him off the medication too quickly. Perhaps longer adjustment periods at each dose as you step down?

Thanks, yeah I should go over there.

And yes, I think it's partly the reduction in his medicine. The first week he had a couple of major meltdowns, thank God that's not happening now!!

I found that when I was getting off meds similar to risperidone, there was just no way to avoid withdrawal periods no matter how slowly I tapered it. It took me over three months at one point to get back to normal. So when you do go off meds and that sort of stuff happens, whatever you do don't assume it's just his "normal" baseline coming back. (A lot of shrinks even can't tell the difference and will take withdrawal symptoms as meaning that you need to be back on it.) It could be, but it's highly likely it's a part of coming off the med, and that can't always be avoided.

When I was going off a combination of meds including Seroquel, what was going on was that it unmasked some very severe pain that had been going on, and also caused all of my tics and stims to come back with a vengeance (like more intensely than they normally existed, because coming off of it swung me all the way in the opposite direction). So between the pain making me constantly move around trying to find a comfortable position or to somehow use the movement to dull my awareness of it, and the stims and tics all coming back, as well as some unmasked tardive dyskinesia (damage caused by the meds that the meds also partially mask so when you come off them you have involuntary movements that didn't exist while you were on them because the meds were hiding them at the same time as causing them, complicated but it happens), it was just... I couldn't sit still, at all, except when I was freezing in place and then I was too still. I was constantly twisting around, moving my hands in weird ways, writhing on the floor, and my body felt like it was on fire only worse. It took four to six months for that to completely go back to normal (which still had some stimming and still had some pain but not the same intensity as at first).

Here's a list of the common (but not all of the ones that exist) withdrawal symptoms from neuroleptics:

nausea* emesis weight loss diarrhoea rhinorrhoea (runny nose) diaphoresis (heavy sweating) myalgias (stabbing pains)* paresthesias (odd sensations, eg burning feelings,etc)* anxiety* agitation restlessness insomnia increased tremor (unmasked by withdrawal)

The ones with a * by them are the ones that may be hard to tell in a person who can't communicate easily about such things.

Note that I already had burning pain, stabbing pain, and paresthesias even without the withdrawal, but withdrawal made them infinitely worse. Also, burning pain is technically different from a paresthesia, but a lot of medical literature doesn't separate them even though it's known by people who study that kind of pain that they shouldn't be in the same category even though they're both often caused by similar things and may happen to go together.

During that 4-6 months it took for me to get over these things (much longer than most professionals will admit possible, but I've talked to other people who had the same things, even after tapering like I did) I constantly had professionals telling me that this was just "who I was" and that it meant I needed to go back on the meds. But I'm off them and I'm doing better without them. I'm on completely different meds now, which treat the symptoms I actually have a lot better, and mostly aren't as dangerous. (Mostly, meaning that I do choose to be on some meds that are dangerous because the alternative is potentially life-threatening or close. But only under very strict supervision by a doctor.) A lot of the supposedly psychiatric symptoms I had were the result of untreated physical conditions, so I'm not actually on anything specifically psychiatric at the moment. The main psych problem I had was depression and I got through that with years of the equivalent of cognitive therapy, because none of the psych meds worked for that for me anyway, and most of them had very undesirable side-effects. (And half the psych meds I was on, or more, were due to side-effects of other meds being taken as "unmasked disorders that were underlying to begin with" -- something that is almost never thought about non-psych meds when they have side-effects, there's a lot of bias in the psych system.)

Thank you for sharing all that. I am sorry it was so hard! And yes, with my son being autistic, he is also non verbal. So the poor guy can't even tell me if something is bothering him.

Your post helps me to be more compassionate. I have no idea what he is really feeling, so what you said will help me more patient with him.

I myself have been on paxil for a few years. I am down to half the dose I used to be on, I want to get off it entirely if possible. It took me 3 tries just to get it down to half! Meds can be So hard to get off of. And I've been learning more about possible side effects of the risperidone. I wish we had not started it. But at the time he was just completely out of control with constant tantrums, etc. You could tell by his face that it scared my son being so out of control.

Thanks again for your post.

I'm sure that the people in the Parent's Forum will be able to help you.

While I've never tried to go off my medications, I am a rather forgetful person so I often skip doses by accident. When that happens, I become a lot more hyperactive, I find more things to be humorous and I am more easily angered. I think that is why your son has become more hyperactive - the meds slowed his mind down and without them, his mind is racing. That's what it feels like from personal experience, anyway.

Wow, really? I didn't think of that. Thanks very much for telling me. I am sure it is no fun for him.

One good thing is he has been in a good mood all day. So thankfully he hasn't had any tantrums or anything. I came close to one myself though