What To Do When There Are No More medications 2 Try?

[Janna]

Honestly, I think we've done most of them. This is kind of a follow up to the ADHD thing. We did meet with psychiatrist on Friday, and she was gracious (as always) to go ahead with my thoughts on re-trying the Concerta (just one more time, even though we've tried it two or three times, I keep hoping with age and maturity, the stims MAY work). 36 mg., started Sat, no change

It could be worse, he could have gone manic (or whatever that is that makes him over the top hyperactive, call it what you will - nobody knows ). But, no change.

psychiatrist mentioned Celexa. I dont want to re-visit the AD's. D tried Wellbutrin (zombie) and Luvox (thought staff at Residential Treatment Facility (RTF) was trying to kill him, was hallucinating, was found in the bathroom smearing his feces on the walls!!!!!!) with nothing but bad effects. Why does she even want to go there?

The Buspar, which once worked, doesn't seem to be so much so anymore. We upped him to 20 mg 2x a day - nothing better.

The Seroquel - I guess it's working. No more raging. He's handling himself better, coping better - still very, very frustrated, alot, but the anger/aggression has severely gone down. But even with that, he is becoming more and more hyper lately - even prior to any medication changes (he takes 175 mg PM and 50 mg AM of this).

No more MS'ers to try. No more AP's. No more stims. And, not interested in the AD's LMAO! Where do I go? I dunno.

I'm thinking Klonopin. Maybe. Don't even care that it's addictive if it works. He's so hyper, all the time - I mean, it's not even a mania thing where it goes up and then comes down. He never, ever comes down. And his non stop talking - even to tell a story, he takes the long way around (not around the block, around the COUNTRY). It's to the point that when he starts telling you about this car, for example, til he's done he's talking about the lady at the hospital that drew his blood 6 months ago. How did we get to that? I dunno, cuz I block him out, lose him, I can only hear his voice so much, then it's auto flat affect.

I gotta find something. There has to be SOMETHING! One medication, one pill, one something to chill him out. Geez - anyone? His anxiety is gonna kill him. I don't know how he makes it through the day without breaking down. It's no wonder he sleeps so well, he must exhaust himself worrying alllllllllllllll dayyyyyyyyyyyyyyyyy longggggggggggg over EVERY SINGLE THING How do you live?

Here's our list so far....maybe SOMEONE can help me. We've tried:

Lithium
Depakote
Lamictal
Tegretol
Topomax
Trileptal
Abilify
Zyprexa
Geodon
Risperdal
Seroquel
Wellbutrin
Luvox
Strattera
Adderall
Ritalin
Metadate
Concerta
Dexadrine
Tenex
Clonodine
Buspar (on currently)
I might be missing a couple. Hm....I can't get out my monster book and browse at the moment lol.

His diagnosis'es make no matter to me. I just need to get this kid to relax and chill out. It doesn't help he has NO social awareness/clue whatsoever in his body. Not one ounce, and nobody is giving him that, so that, in itself, must kill him.

His black and white thinking - no compromise, no understanding, getting worse as he gets older. His yearning to be an authority figure - worse, and I can't even keep people around him to remind him he's a kid LMAO! OMG, "normal" people, they make our life he** for us, because they're so ignorant.

Listen to this story:

Dylan rides a van to and from school. It's not a school van, it's a privately owned van that only transports, I'd say, 4 -6 kids at a time. The van driver is old, I'd say late 60's, early 70's, and either partially or fully deaf.

He allows Dylan to sit in the front seat of this van and be his "eyes and ears". Right? This, immediately, says to my son "I'm above all the kids in the back". The van driver doesn't know better, right? So, the other kids on the van, they're defiant. Disruptive. Disrespectful. I guess anyway - this is Dylan's take, right? LOL! He thinks it's his job to look after these kids, and because the van driver does not enforce rules, and Dylan is so worried sick with anxiety (the van driver is going to be distracted and crash, one of the kids is going to get out of his seat and cause a wreck, one of the other boys is going to throw something out the window and we're gonna get pulled over) he takes it upon himself to be the boss, because, the van driver isn't LOLOLOL! So, Dylan is telling these kids what to do, and the van driver isn't saying ONE WORD! WHICH, in turn, reinforces to Dylan in his mind, what he is doing is A-OK. Because, obviously, if he was doing something wrong, the AUTHORITY FIGURE, i.e. van driver, would be doing his job and telling Dylan to shut up

So, Dylan comes home yesterday, asks for the phone to call his friends, N and M (who, I later find out, are both on the VAN!). I say, wow, ok, yes, sure...figuring how great this is he wants to call his friends! I'm busy, I have someone here, and Dylan takes the phone upstairs. He comes down about 20 minutes later to tell me he talked to M's dad to let him know that his son is disrespectful and rude on the van Then, he left a message with N's mother on her machine, letting her know that her son is very rude and doesn't follow the directions given on the van

Needless to say, I get a call today from N's mom. Once I explained my wonderful son to her, all she could do was laugh - kind of

I need to get D off the van. So, now we can start a new van, with a new driver, who WILL enforce the rules, and D will have a whole new anxiety phobia to worry about But, it's things like this. I wish people just wouldn't talk to him. Would stay away. When he started school, the secretary that lets the kids in the front door to the building told Dylan "if you're ever late, sweetie (*cringe*), all you have to do is ring that buzzer there and I'll let you in - so don't worry". Do you know what that said to MY son? Oh, I can be late whenever I want, cuz she'll just buzz my sweet rear end in.

Egad.

 

[Wiped Out]

Jana,
My difficult child has been on most of those. The anti-psychotic that finally has helped some with difficult child's behavior is Loxapine. He is also taking the Topamax and the Lamictal for mood stabilization. Along with that the Clonidine also helps with the ADHD and sleep.
It's hard because I know there aren't a lot more medications out there.

That van driver-YIKES!! Doesn't sound like he should be driving. I can see my difficult child doing the same thing!

 

[jannie]

The van situation does not sound very good at all. I totally agree with you about finding our more about this situation--Perhaps this man should not be driving at all....especially if he can't hear well.

In regards to the concerta...you said it wasn't do anything, but was it making him worse? Perhaps he needs a bit more time on it. I know it works right away, but I have heard some things about the kids getting used to it because they are so used to being active and distracted that they need time to let their bodies adjust to some calmness...who knows?

What did the doctor say about the vyvanse?

 

[gcvmom]

I apologize for not reading the entire post, but the thought came to me that maybe he's not at a therapeutic level for Seroquel?

My difficult child 2, same age, takes 700mg Seroquel XR at bedtime and 400mg XR at lunchtime. His psychiatrist admits this is a very high dose for someone his age, but the fact that he's functioning fine on it and seems to be stable tells him that he needs to be at this level.

So I just wondered if maybe your difficult child could benefit from a bump in his dosage?

 

[Janna]

No, Jannie, she was uninterested in trying Vyvanse. Although it's new, and she has heard good reports from some, she is personally treating 3 children with mood issues that have all had aggressive reactions to the medication. So, with D's history, she didn't want to.

GCV, that's interesting, I assume it's being used as a mood stabilizer? I don't think that was the initial intention of the medication (they put him on it with Depakote at the psychiatric hospital, but we had to take him off the Depakote because it caused increased anger/aggression), but it's something to ask about.

Thanks!

 

[dreamer]

just sending sympathetic hugs. my difficult child has been on all those.......now on 0. husband was on nearly all & now on 0. not becuz they got cured but cuz in the very end after medication washes in phosps our psychiatrists ndocs & us decided things actually wound up better this way for us. my difficult child wound up with glucose intolerance very very very high blood pressure & reduction of cognitive ability related to medications & all irreversible. husband wound up with irreversible liver damage....which was the only reason they had the medication washes in first place. lifes not perfect but......we manage now somehow. I guess becuz we simply had no more ideas & neither did any of our docs.

 

[gcvmom]

Janna, yes the Seroquel XR is for mood stabilization.

Previous to that he was on Depakote and Lamictal. This seems to be working best for him so far.

 

[smallworld]

Seroquel and its long-acting version Seroquel XR are rxed for anxiety, depression, sleep and mania. While not a mood stabilizer -- it's an atypical antipsychotic --Seroquel has mood-stabilizing properties. My son has been taking 600 mg regular Seroquel with good results for a year.

 

[Janna]

Right, that's what I meant LOL! Sorry.

SW, how much does your son weigh?

I was told they were giving it to him (psychiatric hospital) for anger and aggression. It was hard to see results at first, because the Depakote made him angry and aggressive! Once the Depakote was removed, the anger and aggression subsided alot.

I didn't know Seroquel would help with anxiety. Would you think that at the dose he's on, it should be helping, even a little? Maybe we'll just have to talk about increasing that.

I appreciate all the replies. I'm dumbfounded as to where to go next. He really needs the medications *so* bad. I mean, he just can't get through the day. *sigh*

Thank you everyone.

 

[smallworld]

Janna, my son weighs about 140 pounds.

However, Seroquel is dosed by clinical response rather than weight. D is still on a relatively low dose. Most kids are dosed in the 300 to 600 mg range, although I have seen reports of increased anxiety at 300 mg so you may have to go higher than that. It's worth a shot. If it doesn't work, you can always lower it back down.

We have seen it work on both anxiety and depression in J. I hope it works on D's anxiety as well.

 

[dreamer]

My difficult child took 800 mg seroquel. She had tried several different doeses from 25 mg to 800. Her docs tried it to help sleep and reduce anxiety and mania. My difficult children anxiety caused her to break out in hives and stop breathing. the seroquel helped. She would also "go" for 2-5 days at a time and then "crash" and sleep for 3 days. seroquel helped with that, too.

 

[Shari]

I wish I had answers, because I have D's clone...

Nothing to offer but hope that you find a good one. Then you can pass it on to us...

Hugs.

 

[TerryJ2]

OMG, Janna, that's priceless!
I know you "enjoyed" having to explain his actions to the other parents. NOT.
You've got to write that one down. I still write stuff down in difficult child's baby book. When he's 40, it will all be funny.
Right now, we're just trying to keep our heads above water.

I wish I could help with-the medications. Wow, you DO have quite a list!

All I can do is offer a lame, "good luck."

 

[DDD]

Hey. I did not read the other posts but I did scan read yours and am sorry it is so frustrating. My difficult child started on 36 Concerta and his big bro easy child/difficult child took 54. Littlier difficult child (a slim drink of water body type) was upped to 72 and then.........upped to a higher dose. Once the Concerta was right he was able to function more than adequately in conjunction with the Risperdal he took. He is still as Aspie and still doesn't "get it" but he will be graduating in May with a regular diploma which was not possible before his dosage was radically increased.

Maybe it isn't the medication. Maybe it is the amount of the medication?? DDD

 

[Janna]

I'm thinking that, too, DDD. Because, check this out. They work on a point system at his school, and since starting the Concerta, his points have been the best he's had yet (he started this school in October). Still some issues, but things look pretty positive.

So, maybe here at home it's entirely too much stimulation? I mean, how come he stays so focused at school but it so whacked out/wired up, here? LOL!

Anyway ~ maybe we will wind up keeping the Concerta and going up? Hmm.....only time will tell, but I'm elated that he's had such a great week academically (not getting my hopes too high though).

I still think I need to look at the Buspar's effectiveness, and possibly increasing the Seroquel. I have a conference call with psychiatrist tomorrow.

Thank you everyone, again!

 

[timer lady]

Janna,

I didn't take the time to read all the other replies....

However, I'd like to offer this thought for you to consider. It took a lot to find the right combination of medications for the tweedles. In the meantime, there were still many antics & the like shining through. After further research, it was determined that wm needed & is now getting a great deal of Occupational Therapist (OT). He has huge sensory issues - his center of balance is off & stays moving because of that.

On top of that, both of the tweedles needed behavior modifications & therapy to help the medications work. It just wasn't the medications ~ by the time the right medications were prescribed there was a need to teach the tweedles different coping skills. It's like their "busyness & goofiness" were ingrained. They had to learn self calming skills & the like.

The medications helped them clear their minds to be able to learn & practice these new skills.

Just something to consider.

 

[DDD]

Janna, that's perceptive to think maybe your home might be triggering issues. difficult child loves living at his Mom's because there is always something going on (in addition to the television, lol) while my house is boring! He doesn't realize that my house is boring because I restructured it for his benefit. Just like a school we eat within 30 minutes each night. We do not keep the TV on for no reason nor do we have CD's blasting or radios competing for sound waves. All those things are here and exist but a decided effort was made to eliminate stimuli that was not needed or in use. Homework time was always set too so there was no decision making about when to do it. Bath time and bed time were always fairly closely scheduled too. In other words...LOL...much like a school, he never had to worry much about what was going to happen or what was expected.

For difficult child that led to complaints about being bored but a GPA of over 3.0 and a sense of pride. The one thing I could not improve was his social skills outside the family. He actually decided to just not talk much so peers wouldn't think he was a weirdo. That pains me still that I just could not find a way to help him "fit in". The psychiatrist encouraged me to be proud of the progress I was able to trigger and I am. on the other hand as a social being, I hate that nobody else reaches out except older adults. DDD

PS: One activity that I explored with some success was a little theater group for teens (that was closely supervised by adults). Playacting was helpful for him and made it possible for him to "pretend" to fit in. The group only lasted for two summers but it was helpful.