nvts

Active Member
Alright. Here it is, in black and white. His diagnosis's are the following: Aspergers Syndrom, ADD inattentive type, mood disorder not otherwise specified, PTSD, ODD, and Anxiety. He had come out of a 5 week hospitalization where they weaned him off Seroquel onto Risperdahl. While her was in the psychiatric hospital, he went from a mens size 38 to about a mens size 42 (thank you Seroquel/risperdal!).

From the hospital, he went into a Community Residence a week before his birthday (can we see the irony that he was born on Mischief night? - Oct. 30th?). Since it was right before his birthday, he was allowed to have a home visit that weekend. He was allowed for me to visit on Sundays after that for 2 weeks. Thanksgiving, home again and every weekend for a 1 day visit. Christmas he scored an overnight, then New Years (overnight) and all hades broke loose. Threats of physical violence, suicidal ideation, 3 trips to the psychiatric hospital ER. We had what I call a "come to Jesus" meeting with him the 2nd week of January where he was told what was expected of him in order to visit home again. He failed to make level every week until now.

Guess who's sitting in the psychiatric hospital. ER as I'm typing this.

The behaviors include: suicidal ideation, slamming his head against walls and doors, taking a sweatshirt and tying around his neck pulling tighter and tighter, asking the other boys for a belt, spraying Lysol in his mouth, screaming "don't come near me - don't beat me like my father", screaming at the police "don't shoot me don't shoot me", running through the residence blocking doors so they can't get to him, sexually inappropriate comments and gestures (filling a rubber glove with hand cream - you know where I'm going with this) - the list goes on and on.

His medications are: 3 mg. of risperdal, trileptal (not sure of the dosage - it was added in residence) and attarax as needed.

He was supposed to come for a 4 hours visit. He called me at 9:00 telling me that he couldn't handle the pressure of waiting until 1:00. The other kids and I were at the mall (we have signed up for a community "Let's get healthy" program and today was the first mall walk). I had to talk him down during the stretching, he found out that we were not home and sounded sort of resentful that he wasn't with us, and the next thing I know, about 10 mins into the walk, he's on the phone again freaking out. The counselor got on the phone and asked that I agree that if he didn't get it together, today's visit was going to be cancelled. I said absolutely. Both the director and I agreed that, although he'd made level, his behavior still had to remain appropriate in order for the visit to come to fruition.

I must mention here that he was aware that his father was going to come over to visit him as well.

He "cycles" so rapidly that they lose count from the time he gets home to the time he goes to bed as to the number of cycles he runs through.

Any of you out there with kids that run this way - does anyone have any suggestions as to what to give him medicationally that will slow/stop the cycling?

I'm lost and heart-broken that we're back in the soup again.

Beth

***He was released to the residence. It was the same psychiatrist that he's seen the last 4 or 5 trips to the Emergency room who insists that all of this is purely behavioral. Yup, tying stuff around your neck? Well, he's done THAT before - but spraying Lysol in your mouth? Little confused here...
 
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HaoZi

Guest
suicidal ideation, slamming his head against walls and doors

That and other things like it were my kid on Risperdal. Familiar nightmare to some degree. If I hugged her I was "suffocating" her. If I touched her I was "killing" her (even so much as a light touch on the shoulder). That's when she landed in psychiatric hospital. Total medication wash, put on Zyprexa only. New kid. Would eat you out of house and home, was hyper or whiny at times, but a vast improvement and mostly happy and compliant. The only caveat in her case was that it really messed with her peripheral nerves to the point of screaming pain, so we had to switch again. The addition of Topamax to her medications is supposed to curb the appetite some, though all I've seen is that she's hungrier in the evenings than during the days and it doesn't knock her out at all.
 

gcvmom

Here we go again!
So very sorry he's falling apart again. :(

Clearly his medications are not working well enough to keep him balanced. Either the dosing is not right or the combo is not right (or both). That's about all I can suggest. Poor guy, must be miserable. What does his psychiatrist say?
 

nvts

Active Member
Honestly? His psychiatrist is a butt-head. The last time he was in the hospital, we were weaning him off the seroquel. She didn't return THEIR call so they started to titrate him back UP because they can't take my word for it. She wouldn't return MY calls so I called her boss. She finally called the hospital back and that's when they started to go back down on the seroquel and up on the risperdal. We're still trying to find a new psychiatrist. I might be in the city that never sleeps, but try and find a child psychiatrist that takes insurance and you're on the short list.

Beth
 

DammitJanet

Well-Known Member
You asked about a child that cycled that rapidly so no...but I have cycled that rapidly at times. I have cycled so rapidly that I sent myself into mixed states. Its not a pretty sight when I full grown woman is behaving similarly, not exactly, but close enough.

I can tell you what my medications have been over the years. Dont know if that will help you or not.

Started out with:
Topamax, wellbutrin and ativan.

went to:
topamax, lamictal, ativan, ambian, trazadone

Went to: topamax, lamictal, ativan, ambian, trazadone, klonipan

Lost insurance
Idiot county psychiatrist tried zyprexa, lithium, atarax - I tanked.
He admitted mistake and put me back on lamictal, topamax, trazadone, and atarax, Refused steadfastly the klonopin or ativan or ambian, Needless to say I slept little for two years.

Got insurance back and I went back to real medications.

Topamax, lamictal, trazadone (for a short time until we found out it was activating me) ambian, Seroquel very low dose to start for sleep. Lost ativan in 07 when Jamie left the Marines. Oh Still on klonipin.

Today I am on lamictal, Topamax, Saphris, restoril, xanaxER, as psychiatric medications. I take other things as far as my pain medications and my regular health care stuff like cholesterol and thyroid but that isnt relevant here.
 

Wiped Out

Well-Known Member
Staff member
Beth,
I'm so sorry he is so unstable. My difficult child is cycles quickly and often. We have tried so many medication combos it's unbelievable. His current one is helping the most. He takes Loxapine, Clozapine, Topamax, Clonidine, and Bentztrophene. Not many psychiatrists will use Clozapine especially for kids. The reason (as our psychiatrist explained it) is because of the weekly blood draws. There is the potential to have the white blood cell count affected by the Clozapine which is why it is so closely monitored. He has to be on a national registry and each week after his blood draw it gets sent to the psychiatrist and the pharmacy.

I'm not recommending it just letting you know what has helped for my difficult child. He is still very much a difficult child but the level of violence has gone way down. His weight has gone way up. He has been on this combo since May and it took until January (a time when he usually starts ramping up) till school really noticed a difference. They say he is much more pleasant and that is trying to be a learner again as well as has a good sense of humor.

Sending gentle hugs your way.
 

smallworld

Moderator
Beth, whether he has bipolar disorder or not is kind of a moot point at this point. His medication combo is clearly not working, and something drastic needs to change.

A couple things you need to know to help you make some decisions:
There's a side effect to APs like Risperdal called akathisia that some mistake for anxiety or agitation or increasing aggressiveness rather than a side effect of the medication. Akathisia is a feeling of internal and external restlessness. A child may be incapable of sitting still and may feel a sensation of discomfort akin to anxiety or agitation. If your son has akathisia from Risperdal, he needs to be weaned down from Risperdal. My son experienced akathisia on Risperdal, and I can't tell you how unnerving it was. He's a really gentle kid, and we couldn't even look at him without him yelling at us to leave him alone. It was truly frightening. Just wanted to mention it in case it's going on with your son.

In terms of Trileptal, you need to find out the dose. Trileptal is used all the time with positive results by the psychiatrists at Meridell Achievement Center in Texas (many CABF families go there). It has a good side effect profile (weight neutral, no blood draws) and is tolerated well. But it has to be used at a high enough level to be effective. Some children do fine on 900 to 1200 mg, but others require as much as 1500 to 2400 mg for full symptom relief. My understanding is that Trileptal is particularly helpful for rage behavior.

Hang in there, Beth. We're here for you every step of the way. Hugs.
 

KateM

Member
My son also is diagnosis with Aspergers , mood disorder and ADD. He tried all the AP without any benefit and with side effects. What has worked well for him for several years now is a combination of Concerta, Zoloft and Depakiote. The Depakote ended his belligerence and mood swings. He is now a young adult, working in a huge home improvement store and volunteering as an asstitant scout master. Of course, much improvement is just maturity, but medications and the right school placement aided tremendously in his functioning so well.
 

Jena

New Member
hey!

im so so sorry. How was he while on the seroquel? was he more even? besides the weight gain that was a negative, what else did he seem like on it? i agree the medications he's on have side effects of agitation. you def. dont want that. why dont you suggest a medication wash at this piont, start from scratch. i think the medications are making him worse.

when it gets this messy you can't tell if its the medications, the kid, or the place he's in that's setting him off and triggering also possibly.

i'd start from there wash him out, clean it up than sit down with a list of medications you have tried and medications you haven't. it doesnt' matter whether he's BiPolar (BP) or not small's right. just treat the symptoms. now hes outta control yet again. without today's incident wha'Tourette's Syndrome the worst behavior in him the one that truly stands out the most? tackle that one slowly. break it down like a mini puzzle. it's going to be more you directing cause your doctor sounds like a jerk.
 

Steely

Active Member
I am SO sorry.....
Yes, I had/have a kid that cycles that rapidly.....and it is really, really hard to find the right combo. The mix that worked the best for us was 2 mood stabilizers and a small dose of an AP like Seroquel or Risperdal. I say small, because as smallworld said, Matt would develop Akasthasia on higher doses. It seemed like for us, if he had 2 mood stabs, than he really only needed a smaller dose of the AP.
Right now he does OK off of an AP, his own choice, but he did better on one.
Do you have a psychiatrist that you see on the outside of the phosph? If so, get her to start bugging this butthole psychiatrist that is never there. In fact when Matt was in the hospital, I made sure the 2 psychiatrists collaborated, because I only trusted his personal one.
But definitely in my opinion he needs 2 mood stabs at the right dosages to make any progress.
Many, many hugs.............grrrrrr.
 

Steely

Active Member
And just FYI sometimes you really have to play with the mood stabs. Trileptal made Matt crazy, crazy.....For awhile, the only thing that worked was Lithium and Depakote.
Personally - I would have the psychiatrist put more emphasis on the mood stabs than the APs.....The APs only calm his thinking down, they do not help regulate the mood swings. I have had many, many doctors tell me that kids like this need 2 mood stabs and one AP.
 

nvts

Active Member
Well they sent him back to the residence - gotta love it! It's all behavioral. Spraying Lysol in your mouth? I'm a little more confused than ever before. How do you fix the behavioral stuff if they're a roadblock to themselves?

Yet another day in the life of being the mom of a difficult child!
 

smallworld

Moderator
When they say it's all behavioral, what do they mean? It's still maladaptive. It's still "illness." It still needs fixing. What do they propose to do about it?
 
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