I talked to Robin's doctor today and we're stopping all his meds. I told the pdoc (psychiatrist) that I didn't feel the meds were very effective anyway, and that since Robin's in a pretty controlled environment anyway (only away from me for short periods of time at neighbor's, church and home) I'd like to take him off everything (only on abilify and lithium--low doses anyway). He's supporting us! I thought he'd say it was a bad idea, no--don't do it, etc. He said it sounds like now would be a good time to try this. He also said if we needed to, we could always put him back on something or try something different. He mentioned a new med that's only been out for a few months that seems to be working wonders for some of his other kids. So we're weaning slowly and should have him off everything by May 2nd. Pdoc said to call him anytime if we needed anything. I invited him to live in our guest room for the next month! lol He laughed. We also will be seeing the therapist every week and he supports this, too. I'm pretty excited, but nervous at the same time. I asked our chiropractor (also a good friend) if seeing her more often while doing this would be a good idea and she said absolutely. Something about flushing the toxins out of his system. We'll see how this goes. Wish us luck and say a prayer for us.

By Tripletmom on Thursday, April 12, 2007 - 08:44 pm:

{{{HUGS AND PRAYERS}}}

By Ginny~moderator on Thursday, April 12, 2007 - 08:59 pm:

Lots of hugs and lots of prayers. I suspect that you will know, as you reduce the doses, whether this is a good idea or not. I know when Scott was having deep problems with depression he tried cutting back on his meds (gradually and after talking to the psychiatrist) and in just a few days realized it was a bad idea. But, about 18 months later he was able to cut back until he is now on just a minimum dose of anti-depressant and off everything else.

With both the shrink and therapist being supportive, this does sound like a good time to at least try. I know that the meds often work miracles with kids who have problems, but something in me just cringes at the thought of the cocktails of psychotropic drugs some kids are being given.

Your shrink knows best, of course, but I am paranoid about new drugs that have only been on the market for a few months, no matter what they are supposed to be used for. So often the tests done for FDA approval have such a narrowly selected "human test" pool that when people who are living in the real world start taking them, all kinds of things show up. But you have had more than enough experience to be able to guage what is and what isn't working.

Again, hugs, and prayers.

By Cat on Friday, April 13, 2007 - 10:43 am:

Ginny, Robin's not depressed right now. If he were I probably wouldn't consider this right now. He's doing realitivly well with the occasional outburst. I just need to control the triggers for the outbursts (read--dh!). We'll see how he does the first couple weeks. We're cutting the abilify first, then the lithium. I really don't like having Robin on such strong meds. I'm not opposed to meds, I'd just like to try something different. Now seems like a good time to do that.

The new medication the pdoc mentioned is Invega (paliperidone). From what I understand it's a reformulated version of risperdal, which Robin's been on in the past. I think you know me well enough by now to know I'd never put Robin on something without thoroughly researching it first.

Thanx for the hugs and prayers.

By Tripletmom on Friday, April 13, 2007 - 10:58 am:

With Robin going through puberty,I think its a great time.Hormones can have such an effect on our bodies.Good luck and lots of hugs with your decisions.

By Ginny~moderator on Saturday, April 14, 2007 - 12:39 am:

Oh, I do know, Cat, that you research everything having to do with Robin to the bone. And it's clear that you know Robin very, very well and are the best judge of what is going on with him.

By Kaye on Saturday, April 14, 2007 - 08:31 am:

Very cool Cat! Keep us posted on his progress. I am a firm believer that sometimes we just have to start over. On the funny homeopathic side. When someone gets pulled of a med, because of toxicity (just not tolerating it well), standard protocol is epson salts baths, it helps the body flush the skin. Not sure why, but with my little guy this really helps. So if Robin likes baths, drop a cup into it with him and it might help, it won't hurt, it is just a form of salt.

By Cat on Saturday, April 14, 2007 - 05:22 pm:

Tripletmom, Robin hasn't hit puberty yet. lol I actually think Randy will go through it first. Just a hunch I have.

Kaye, thanx for the tip about the epson salts. I'll have to check into that. He does like baths. He actually fell asleep on the bathroom floor about a week ago. He'd taken a bath, gotten out and continued to let the water run because he "liked the sound". Dh found him in there around 11pm. I told dh at least he didn't fall asleep IN the tub! I also said we'd have to find him a cd with water noises. It'd be cheaper than the water bill!

By Lauram on Monday, April 16, 2007 - 10:06 am:

Yikes, Cat. We did this once. It's a good thing- but also very scary. I kept in touch with the dr the whole way through. If I hadn't done that- I'm not sure I would have stuck with it.

By Cat on Tuesday, April 17, 2007 - 02:24 pm:

Ugh. I don't know if we're going to continue this or not. We're only on the second decrease and he's already getting to be a real handfull (more than usual!). He was hyper last night at karate and this morning he refused to let the dentist do a couple fillings. He just wouldn't open his mouth. It's not the first time we've had problems at the dentist, but it is the first time we've left without getting the work done. They referred us to a pediatric dentist that will knock him out to do the work. Oh joy. He's been very irratible the past couple days. He's also being nastier than usual. I've got a call into his pdoc. We'll see what he says.

By Tink on Tuesday, April 17, 2007 - 02:43 pm:

Cat, I really don't know anything about taking him off meds but I'm wondering if some of his behavior the last couple of days could be withdrawals from the higher dose he's used to. I'm sure your pdoc will be able to answer any questions but maybe not all of his behavior is from his "issues" and due more to an adjustment period. {{{Hugs}}} You've been in my prayers while you go through this.

By Cat on Tuesday, April 17, 2007 - 04:06 pm:

I talked to the doctor and he said it sounds like we need to put him back to the doses he was on. He said unless we wanted a full blown crisis at our house. Nope, don't want that! I tried to explain to Robin that he needed to work extra hard if he wanted to be off the meds (and he does). He says he will, and I believe he has every intention of doing it when he says it, but when it comes down to it he doesn't have the skills and abilities to actually get it done. So I guess for now we'll keep him on the meds and work on those skills. So frustrating.

By Bobbie~moderator on Wednesday, April 18, 2007 - 09:03 am:

((((CAT and Robin)))) Wishing you all the best and the wisdom to to make these tough decisions.

By Lauram on Sunday, April 22, 2007 - 10:45 pm:

I'm so sorry, Cat. Can you wean them down one at a time and then replace them with something else- that way it's not such a shock to his system? That's what d's psychiatris does....

You definitely don't want a crisis! Remember it's not all skills- it's also his brain.... Don't be so hard on yourself!

By Beth on Wednesday, April 25, 2007 - 10:19 pm:

I hope things go well. We have had good success with abilify with a lot of our clients. But they are all adults may be the difference.