Re: Getting ready to wean Kolonopin (long)

[Guest guest]

Hi ne,

I'm attaching a letter I posted to the list a long time ago about my son's experience with cutting Klonopin. I must warn you that our experience was very difficult, and many people do not have the extremes of withdrawal symptoms my son had. For what it's worth, here's our experience.

,

mother to ph, keto-kid from 1/99 - 5/01, now doing well (knock wood) on 500 mg Diamox per day

<<You are right to be afraid of weaning Klonopin, but given the nasty, insidious, addictive nature of this drug, I would say that you would be doing your son's body a tremendous favor to try and free him of it. My son (now 6-1/2) was on Klonopin for nearly 3 years by the time we finished weaning him off it. While he was not psychologically addicted, his body had definitely become dependent on having the Klonopin and we experienced some very extreme withdrawal symproms: insomnia, mental confusion, rages, obsessive/compulsive behavior, social withdrawal, anorexia, anxiety, hallucinations, loss of word retrieval (literally being unable to talk). I'm not talking mild here---for us it was screaming, climbing the walls-type stuff. Some of the symptoms appeared with each wean; the scariest and most dramatic (hallucinations, loss of speech) only appeared with the last two drops. Rages, anxiety, and social withdrawal were pretty much a constant for the full year plus that it took to rid him of the drug. Interestingly (and the only bright spot), we didn't have many seizures while cutting Klonopin.

We started out by cutting 1/2 a pill at a time (We cut 3-1/2 altogether, I believe) and first waited 2 weeks between cuts. Although with each cut we waited longer (we started with 2 weeks between cuts, then 3 weeks, a month, etc.) until the next cut, a pattern began to emerge. A couple of days after cutting we'd get mental confusion and insomnia for 2 or 3 days. Then ACUTE anxiety, rages and screaming, social withdrawal, anorexia would continue for quite awhile. Just when we thought we couldn't take it anymore, my son would wake up one day happy and clearheaded, like the cloud had lifted. That doesn't sound so bad on paper, but I must warn you that towards the end we were waiting 3 months between drops (so we're talking 2 months of awful rages, screaming, anxiety, etc. My son's lip was chapped where he constantly picked at it as a nervous mannerism, for example.) The last dose we dropped was last November, and it wasn't until the following March that we were free from withdrawal symptoms...indeed the hallucinations and loss of speech didn't show up until January. (The last 1/2 tablet we dropped gradually over a 6 week period using a suspension we got from Ridge Road, incidentally.)

Our doctors didn't fully believe that all of what my son was going through was from the Klonopin withdrawal. In fact we consulted a pediatric psychopharmacologist who thought we were way off the mark to link his symptoms to a drug withdrawn months before. He just didn't think it possible....but we all know there's alot of possibilities the doctors don't know!

I must add kudos here for the wonderful Dr. Nordli (now in Chicago), who completely supported our desire to get my son off drugs, and who ruthlessly saw us through brutal withdrawals. I don't know if we would have managed without him, because it's truly horrible to watch your child suffer through something like this. (Is your doctor supportive of cutting meds?)

I'm painting a very bleak picture here, and your son may not have nearly the trouble getting off Klonopin that mine did. I very much hope that's the case. The point I'm making here is that any drug that can make the human body crave it so intensely that the body will literally fight for it is no drug that a child should be taking!!

In a similar vein, my father (now 73) has been taking 1/2 tablet of Valium (a drug in the same class as Klonopin) for a number of years now, and keeps trying to get rid of it. His body actually will not let him: he gets shortness of breath and heart palpitations so badly that it scares him (at his age) into continuing to take it.

Our experience is at the more extreme end of the spectrum, and I hope I haven't completely terrified you. Whatever we went through was more than worth it. My son's cognitive abilities aren't dulled any longer and I feel better knowing we've pushed the diet as far as it can go.

Diamox is another story (we added it at one point during the Klonopin wean to help with the withdrawal stuff, which it did......when we cut it we got TONS of seizures), but I think I'm typed out right now!

Good luck if you decide to cut the Klonopin! Please feel free to contact me anytime if you need an understanding ear, comforting shoulder, and all that. I'm pretty quiet on the list, but I do try and read it, even if I don't have much opportunity to respond. I guess we have somewhat of a unique experience of Klonopin, so I always chime in when the topic comes up.

All the best,

, mother to ph, 6-1/2, keto kid since 1/4/99,

and , 3-1/2>>