wethreepeeps

New Member
difficult child just turned 11 last week, and had a pretty stable 18 months since his five months stint in residential in 2007-2008. By stable I mean no physical violence towards people and no auditory hallucinations. We've had the usual impulsive behavior, food gorging/hoarding, lots of lying, and unless I'm looking right at him, he does whatever he wants with no regard for the rules. But he hasn't hurt anyone or threatened to hurt anyone, so I'll take what I can get. But he's been spiraling down the last several weeks. Lots of regressing back to crawling on the floor barking like a dog, spitting, eating paper, kicking and stomping and throwing, screaming that he hates everyone and wishes he was dead. Got in school suspension for spitting on a classmate last week. There have been a couple of triggers/stressful situations he's been coping with; his sister had surgery, and his absentee parent who hasn't seen the kids in over a year called with the news that his wife is pregnant. But he's not coping well at all, not utilizing any of the coping skills he learned in therapy or in the hospital. Just regressing back to the really scary behaviors that had me convinced a few years ago that I would never reach this boy.

Anyway, I think it's possible he needs a serious medication adjustment. He's been on Seroquel for three years and the seroquel and adhd medication are the two that have had the most meaningful and positive impact on his behavior. I'd go so far as to say difficult child was downright feral before the Seroquel. But I think over time it's losing its impact. He's not sleeping as well at night, seems restless and anxious for much of the day, then giddy and uninhibited, short tempered and completely inflexible thinking from about 5pm on. He sees his psychiatrist tomorrow and I've been doing some reading about using Seroquel at night for the sedating properties and a smaller dose of Abilify during the day. Has anyone tried this? I'd love to hear about your experiences or other thoughts or ideas. One note of interest is that I don't want to put difficult child on a mood stabilizer. He's been on Thorazine, Depakote and Trileptal in the past and I actually found him *more* violent and impulsive when on a mood stabilizer. I don't remember if my sig is accurate; he's currently on 70mg Vyvanse in the AM, 200 mg Seroquel XR in the evening, 1mg Tenex 3x a day, and 30mg Remeron at bedtime (which I do not think is helping at all, and plan to ask about discontinuing). His dxs are schizoaffective disorder, ADHD, and Reactive Attachment Disorder (RAD).
 

BusynMember

Well-Known Member
I'm no expert, but I would think any stimulant would not be good for a child with a mood disorder with psychosis and he's on a high dose. Stimulants really play with moods and can cause hallucinations on their own.

If this were my child, I'd be asking for a mood stabilizer, even though two of them didn't work. That doesn't mean they all won't work. Thorazine isn't a mood stabilizer, by the way. The actual mood stabilizers are Lithium, Depakote, Lamictal, Tegretal and Trileptal. You may want to try again because it can make a world of difference, but you do have to give the mood stabilizer eight weeks. Also stimulants can stop the effects of a mood stabilizer. Both Abilify and Seroquel are atypical antipsychotics. They are good for hallucinations and violence, but they can't hold a mood long term. I'd be leery of a child on both Seroquel and Abilify because they have similar and possibly serious side effects. A note on Remerson from my grown son: He took it because he has insomnia and he hated it. It made him gain so much weight and made him lethargic. He was 19 when he was on it and he finally told psychiatrist he won't take it anymore. That could be what is making him hoard food. These medications make you hungry. I take Paxil...I have to really try hard not to eat a whole cheesecake in one sitting.

And if it were me, knowing what I do now (in hindsight) I would want to try things without the stimulant. in my opinion high doses of stims have no place in mood disordered kids. I have a mood disorder and 5 mgs. of Ritalin sent me over the edge. Sure, it makes you focus until you crash.

Can you tell us more about him? Is he adopted (I have adopted kids). What age did you get him and was he exposed to drugs and alcohol before he was born? Do you have a birthfamily history?

Welcome to the board, but sorry you had to come :tongue:
 
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wethreepeeps

New Member
Yes, he is adopted. I've had him since just after he turned three. There is strong suspicion that he was fetal drug exposed, but he doesn't have the classic physical symptoms. His birth mother is schizophrenic, and sadly, she just kept having babies one after the other and the state would take them away before she ever left the hospital with them. difficult child was her fifth child, and she didn't have custody of any of them. The food hoarding is something he's done since he was tall enough to reach the counters, and he's only been on the Remeron for two months, so I don't think they're related. He was on Depakote, various doses and both regular and XR for a couple of years, the Trileptal for about 8 months. Of all the dozens of medications he's been on, I've seen the most positive changes from stimulants and the Seroquel. I honestly think if we took him off the stimulant that I'd have to take him out of school; he's completely out of control without it. Rolls in the floor screeching, throws and hits.

I also don't know how accurate his diagnosis is; these are the ones they gave him after five months in the hospital. He went in with diagnosis of bipolar not otherwise specified, Autistic spectrum disorder not otherwise specified, Reactive Attachment Disorder (RAD), ADHD and borderline IQ (he's had identical tests three times and each time come out with very different scores, so we just don't know. 59 is the lowest and 80 the highest). From the time he was very small there was invisible version of himself who followed him everywhere and whispered bad things to him. Until he was 8 he spent every waking moment narrating himself out loud in third person, often arguing with himself. "Don't do that, you know you're not supposed to. Why do you care? You hate me and want to kill me anyway" It went on 24/7. It was the Seroquel that finally helped. Before the seroquel, I was considering dissolving the adoption, as my oldest child was developing post traumatic stress from his behaviors. He had a workable plan for burning the house down. I slept in the room with him, with his leg tied to mine by a length of rope to keep him from sneaking around the house at night. I'd tried alarms on the door but he'd trigger them on purpose to wake his sister up; he'd get up at 2am and just open and close the door over and over again, laughing.

He'd done pretty well since getting out of the hospital in April 2008. He was in a sub acute placement for five months. He's in the fourth grade and goes to special education for all of his classes, but is doing well in them and didn't have a serious incident at school for over a year until last week. This morning he was alternately tearful and giddy, crawling around while he was supposed to get dressed, cried and cried when he realized it was time for the bus and he didn't have time to eat. It was raining so I told him to stay inside and watch for the bus from the window, but he kept running to the front door and opening it, laughing when I told him to stop. I'm amazed I haven't gotten a call from the school yet today.
 

lmf64

New Member
Yes, you can do it. My son was on both at one time or another lol. But truthfully, I can't remember exactly when. I do know he was on both of them at the same time. The seroquel lost it's effectiveness with my son after a couple of years so we added the Abilify. Eventually we cut the seroquel in favor of the Abilify. I loved what it helped him to be able to do and really had a hard time discontinuing it the first time (due to weight gain and perceived lack of necessity) After being off it for a year we brought it back on board (see my siggy for more information).
 

smallworld

Moderator
Because Remeron is an antidepressant, it could be activating him and keeping him awake instead of settling him down at night. I agree that you might want to discontinue it.

Seroquel XR is less sedating than regular Seroquel so you might want to consider switching to regular Seroquel to help your difficult child sleep at night. You could also consider increasing the dose because it's not that high (doses up to 600 mg are not unheard of).

One of our psychiatrists recently mentioned that low doses of Abilify are being added to help with brightening affect and processing in the daytime so you might be on to something. Definitely ask the psychiatrist about it at tomorrow's appointment.
 

BusynMember

Well-Known Member
I would take him to a clinic for kids who were exposed to alcohol/drugs in utero. They have a great one in Chicago. They likely have one in every large city. I would go, even if it requires driving far and a hotel stay overnight.

A child doesn't have to look Fetal Alcohol Syndrome (FAS) to have the syndrome. Fetal Alcohol Effects (FAE)/fetal alcohol effects is as devestating as the syndrome, and very similar, but the kids don't look any different from others. It takes some testing.

Since he responds to strange medication for a mentally ill child, I would see if effects from alcohol/drugs is also in play. Maybe that's why he doesn't respond to a mood stabilizer.

At any rate, I'd seek out a second opinion from a doctor (not a therapist only or even a psychologist) who is very schooled in alcohol/drug affected children to see what the consensus is.

Good luck, whatever you decide to do. I know it's hard.
 
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wethreepeeps

New Member
I would take him to a clinic for kids who were exposed to alcohol/drugs in utero. They have a great one in Chicago. They likely have one in every large city. I would go, even if it requires driving far and a hotel stay overnight.

A child doesn't have to look Fetal Alcohol Syndrome (FAS) to have the syndrome. Fetal Alcohol Effects (FAE)/fetal alcohol effects is as devestating as the syndrome, and very similar, but the kids don't look any different from others. It takes some testing.

Since he responds to strange medication for a mentally ill child, I would see if effects from alcohol/drugs is also in play. Maybe that's why he doesn't respond to a mood stabilizer.

At any rate, I'd seek out a second opinion from a doctor (not a therapist only or even a psychologist) who is very schooled in alcohol/drug affected children to see what the consensus is.

Good luck, whatever you decide to do. I know it's hard.

Unfortunately, that's just out of the scope of what I can accomplish. I'm a single parent with zero help from the other parent (we don't even know where he lives). The kids only have medicaid for insurance, and my other child has a terminal genetic disorder that requires around the clock care, which I provide with no nursing help. My son has seen five different outpatient psychiatrists, one a highly regarded professor, just as many therapists, two psychologists, been in mst, three hospitalizations, residential, and wrap around. We moved for a year to get residency in another state so he could qualify for the residential, but my other child, who is very isolated because of her condition, became very depressed being away from friends and family, so we moved back a few months after he got out. If I had money there would be more I can do, but we're barely scraping by.
 

BusynMember

Well-Known Member
Aw, I'm sooooooooooooooo sorry.

I do want you to know though that university hospitals tend to take Medicaid. The clinic that saw my son also took Medicaid. I understand if it's too hard to travel, but if Medicaid is the only issue, I'd call around. Drug/alcohol exposure causes neurological damage and isn't really a psychiatric problem although it can look like one. And certainly he DOES have some psychiatric issues if he is psychotic...and with his birthmother's history. by the way, my son's birthmother kept on having kids too in spite of being a crack addict. My son was her fifth child and she only stayed in the hospital long enough to give birth to him. Then she left. He tested positive for crack and syphilis and had open heart surgery at ten weeks, poor baby. I'm sure she went on to have more kids...the grandmother had the first four, poor woman, but she didn't feel up to raising another baby, especially since his birth sister was barely over a year and all the kids had special needs and she was dirt poor.

Anyway, wishing you both the very best. Come back often. We'll give you support :D
 

timer lady

Queen of Hearts
MWM gave you some good advice.

I'll give you another piece as an adoptive parent of now 15 y/o twins ~ disruption isn't your only option.

We are a "family of different addresses". For safety reasons, wm now lives in a foster group home run by the same facility/foundation that my psychiatrist practices at. psychiatrist recommended this family (he knows them well). wm has lived there for almost 5 years now; we talk frequently on the phone & I see him once a week.

AND there is no shame if the adoption disrupts. Sometimes a child is beyond harmed - just plain damaged. No one parent can do it all. It just doesn't happen.

Has the state offered you any services at all? You need help in the house (personal care attendant for your daughter). I fought 2 long years for services but have them.

Welcome, come here often even if you just need to vent.
 

wethreepeeps

New Member
I appreciate all of the advice. I see all the posts about the services people get, but I live in Louisiana, and those things simply do not exist here. There is *one* residential treatment center and it won't accept him until he's 13. We're on the waiting list for NOW waiver services for both kids, but the waiting list is 5+ years long. Seriously. All we get from the state is counseling with a social worker 2x a month and psychiatrist visit every 3 months. At one time there was a rehab center that offered MST through the state, but the center was shut down because they lost their license due to violations at their group homes, and they state shut down the whole MST program. The only therapeutic day school within driving distance wouldn't take him because they said his IQ was too low to benefit from the program. the few programs that exist use the borderline IQ as an excuse to punt him back and forth; mental health says he needs to be with developmental disability, developmental disability says he needs to be with mental health. Can't get a CHINS petition until he's 13 or he commits a crime. I really have tried everything.
 

Mandy

Parent In Training
We have tried Abilify and Seroquel but not together. Little Bear did worse on Abilify and was more violent. He is on a combo of antidepressent(Celexa), mood stabalizer(depakote) and the antipsychotic(seroquel). This has been our best combo yet, but things can always change. He is taking 50mg of Seroquel with the Celexa in the morning to hopefully help with rages at school.

I'm so sorry you are getting the run around:( I don't know whe the mental health system has to be so HARD!!??
 
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