Ready to see him go off medications ...

[katya02]

I went away to visit relatives in Canada for five days and was shocked when I came back. After not seeing difficult child for several days it struck me forcibly how much his mental function has deteriorated on medications. He now has virtually no short-term memory; he loses things, forgets what we've told him, forgets whether he took his medications two hours ago. His IQ seems to have dropped about 50 points. I can't see how he can even hold the Mickey D's job he just landed, he's so cognitively disabled. He seems to be headed straight for permanent disability.

This started after he went on medications this summer and has worsened to the point, now, where I'd rather see him medications-free and deal with whatever happens than watch him like this. It's like the second half of the book Flowers for Algernon, where the protagonist slowly descends into mental retardation while being fully aware of what's happening.

A good friend of mine who's bipolar emailed me about difficult child, and his comments were: psychiatric medications s***. psychiatric medications s***. psychiatric medications s***. I have to agree. I just can't watch my son become an obese blob with no volition, no initiative, no personality.

He was off medications for five years through his teens, and while there were substance abuse issues, he didn't have unmanageable mood swings and he was intelligent, motivated, and could do meticulous work as a finish carpenter/cabinetmaker. On antidepressants alone, he's ugly. With a mood stabilizer added, he's a zombie.

I think we're going to support him in weaning off his remaining antidepressant and then, slowly, the Geodon. I just can't stand seeing him this way. Once he's off medications, if he won't live within our rules so be it, he'll have to leave, but at least he'll have his mind intact.

 

[susiestar]

katya, isn't geodon an atypical antipsychotic, not a mood stabilizer? I could be very wrong, but it was rx'd for my son as an alternative to risperdal, which is an atyp antipsychotic. Is there a different medication, one that is a straight mood stabilizer that might help? I am just wondering.

While you are making this decision, please go and read any of your earlier posts you can find. I thought when you first came here your son had very strange behaviors that were very scary and unsafe. I may be very mistaken, but often it takes looking back at journals about what was going on to remember exactly what was going on. There is just so much that we go through with our kids, and some of it is so painful that we forget.

Just watned to suggest it.

Sending hugs. What does your son think about this decision? Is there some happy medium (yes, dreaming I know, but wanted to ask.).

 

[flutterbee]

Yes, geodon is an atypical antipsychotic, not a first line mood stabilizer. When I was severely depressed several years ago, they put me on .5mg risperdal (another atypical AP) and I couldn't think on it. I quit taking it because of that - and because of the nightmares, but mostly because I couldn't think.

Has he tried any of the mood stabilizers...lithium, depakote, lamictal, tegretol, etc?

 

[BusynMember]

Sadly, it can take years to find the right medications. I am bipolar and it took about ten years, but I didn't function off of medications so I kept on trying. I decided to take medications, but skip the mood stabilizers. They made me unable to think.
My daughter was put on Depakote and she said it made her "stupid" so she threw it out. She is managing pretty well off of medications. She is all natural. I don't think her mood disorder is very severe though.
Unfortunately, some people use illegal drugs to self-medicate. I hope your son doesn't go back to that. It's been six clean years for my daughter now and she won't even take an aspirin!

 

[katya02]

Yes, he has been tried on depakote and couldn't take the side effects - severe abdo pain daily. He was very sedated on it as well. I realize Geodon is an atypical antipsychotic; for some reason psychiatrists seem to use these frequently as mood stablizers. difficult child was on Risperdal when he was younger and all it did was sedate him. psychiatrist is suggesting maybe Topamax next, and difficult child has been on that too. It gave him severe word-finding and cognitive difficulties. Neurologists call it 'Dopamax' because they see about 10% of patients with the cognitive problems on it. He hasn't been tried on Lamictal and that would be a possibility. His current psychiatrist doesn't like it because it takes months to get to an effective dose and he feels that if you can go for months without the effect, you probably don't need it. A Catch-22 of sorts.

difficult child did have scary behaviors in the summer but he was on unopposed antidepressants then; he started them immediately on coming home for his panic attacks. The psychiatrist then added two more antidepressants and then we saw lots of bad things happening. What makes husband and me unsure about the medications is that when difficult child was completely off medications for five years he DID have substance abuse issues but he didn't show these weird and scary behaviors. It was more personality stuff, which wasn't fun but was more straightforward to deal with. And he had his cognition intact.

Still, I will reread all my previous posts because you're right, it's so easy to forget. Thanks for the suggestion.

 

[flutterbee]

I wonder why they're going to topomax next. I know for Janet it's been the only thing that works for her, but for most people I've talked to/heard/read about the cognitive dulling was just too much and the benefits not so great.

Lamictal works more on the depressive side of bipolar, but it's worth a try ('m not sure where he's at on the BiPolar (BP) spectrum - more manic or more depressive). I'm taking it now for treatment resistant depression and I *love* it. No side effects at all. None. And I've had doctors and pharmacists tell me that I'm that less than 1% that has the weird side effects. It's also one that doesn't require blood work to monitor. I don't have bipolar disorder, but do have severe depression and I started to notice results quickly - while I was still titrating up. It took 4 weeks to get to my dose (therapeutic dose is 200mg, but I am holding at 100mg because it's working). It would be another 2 weeks to go from 100mg to 200mg, I believe. It goes 25mg for 2 weeks, 50mg for 2 weeks, then 100mg. I didn't go any further, so I'm not sure, but the next step is either 150mg or 200mg. You just have to watch for the Stevens-Johnson rash. I don't split my dose as it can cause some insomnia - I take it all in the morning, but I know others split their dose. An important thing to note about lamictal: You cannot stop it cold turkey or it can cause seizures. While Janet was in the drug-induced coma and had 2 seizures, it was determined they were caused from withdrawal from the lamictal cause the doctor's didn't continue her medications. If I miss one dose, I can tell, but it's not a very different feeling from if I miss a dose of lexapro.

Have they tried good old-fashioned lithium? I don't know why psychiatrists shy away from that just because they have newer drugs. It's the most studied. It does require blood work to monitor because the line between efficacy and toxicity isn't too large, but it's an effective mood stabilizer. Does he have a health condition that contraindicates lithium?

We've seen a lot of psychiatrists of kids on the board try to stabilize with atypical AP's and I can't think of a single member who has had success that route (doesn't mean they're aren't any, but none come to mind). The most success seems to be with first line mood stabilizer then add in an atypical AP if needed for acute mania or impulsivity, etc.

Going back and re-reading was a great suggestion, Susie. Occassionally, I do that and it's amazing how much you forget. We so much live in the moment with our difficult child's and it's easy to forget where we've been.

 

[BusynMember]

My son thinks Lamictal is great. Nothing else helped him as much as Lamictal, and it didn't take "months" for him to feel better. He also doesn't have the dulling.

 

[crazymama30]

my husband and son both take Lamictal, and neither has cognitive dulling. husband has some memory problems, but that is most likely due to being unmedicated for an extended period of time, multiple head injuries, and too much alcohol in the past. husband also takes abilify. He was on geodon, but it caused tardive dyskinseia for him. I know that for my husband he cannot function without medications. If he went off them, I would kick him out. Off medications he cannot sleep, and will end up sleeping all day (untill 5 or 6 pm). Is grumpy, irritable, and has a worse memory off medications than on them. It has taken almost a year to get to a good starting point, his medications still are not right, and I don't care if it is has been a long time it has been worth it.

 

[katya02]

Thanks for your comments and suggestions; it's really good to get info from those who have practical experience with Lamictal. It came out after I stopped practice and I only have academic info on it, which is helpful but never provides the clinical context. I think it could be a good possibility for difficult child.

I know lithium is still used but it has such a small window of efficacy between no effect and toxicity, and that window can be affected by so many things, that it's not as frequently used anymore. It was common when I trained and we saw the toxicity and problems - I think most docs were very relieved to have other options once they were available. Still, it's definitely an effective mood stabilizer. I think difficult child would balk at it because of the potential for toxicity, but you never know. He'll have to be willing to try something if it turns out he can't manage off medications. We just wonder if he might manage as long as he has no antidepressants and no stimulants. I think he has a bipolar element to his clinical 'picture' that tends toward hypomania, given his reaction to antidepressants, but I suspect that personality and substance abuse issues are more significant aspects. If he needs a mood stabilizer I guess we'll continue to try, but he could use a washout period at the moment. Just in time for the holidays, but timing is never perfect, is it?

 

[lovemysons]

Hi Katya,
I currently take Abilify and think it works wonderfully. I don't have the "manic energy" that I normally would or the "fire in my belly" to write and be creative with the house etc. But I also don't have the irritation and what I call "addrenaline bomb" going off either.

Abilify is a fairly expensive drug but it works for me. I'm only on 5 mgs. I was taking it with Lexapro awhile back but found the Lexapro was causing "restless leg syndrome" so I was having to hard a time trying to sleep.

Anyway, just a thought on the Abilify. I don't really think it causes the "dulling" affect for myself. And this is the drug, I'm hoping the dr my young difficult child sees next week, will prescribe.

Tammy

 

[everywoman]

My difficult child is currently not taking any drugs because of the side effect he experienced. He is an adult; he is responsible for his own actions. I can say the the cognitive dulling from the medications he last took---geodon being one, was a scary thing to watch as a parent. He tends toward the depressive side of bi-polar, but works on managing his moods himself. He also continues to use pot to self-medicate. I don't approve, but there is little I can do to stop his use.

 

[goldenguru]

I'm a little late katya - sorry.

I don't know how long he has been on this particular set of medications - but do remember that sometimes the 'side effects' that you describe diminish. His body may need some time to acclimate to the new drugs. He has hard choices ahead. I wish there were an easy answer. There is not.

Lithium is a scary drug - with-toxicity and so on. But, my husband has had the best results with it. Trust me - we have tried them all.

Hugs.