whatamess

New Member
We have tried a number of medications for difficult child. The psychiatrist's we have seen always go back to suggesting antipsychotics, but I'm hesitant for many reasons one of which is...don't you end up having to up the dose and up the dose and then add more medications to counteract the side effects and eventually it stops working.

If you're willing to share, I'm curious about any medication that your difficult child has tried that you have had success with and how long they have been on the medication.
 
We tried three drugs before settling on Lamictal. [Disasters, all.] The dose was raised slowly until it appeared effective and then we quit raising it. difficult child has been on it for about three years now. We upped it a little once, but you have to figure that he would need more as he grows. I was originally reluctant to drug him but as the development specialist pointed out, even if the docs gave him the wrong drug at the wrong dose, it would still be an improvement over all the stress hormones running through his body without anything. difficult child has some impulse issues and we tried a couple of add-ons for that but they were not an improvement so we went back to just Lamictal. No matter what your condition, the docs always monitor progress and adjust the medications. True for high blood pressure, high cholesterol, diabetes ... you have to figure it would be true for mood disorders as well. Lamictal has been a life-saver (or at least a sanity-saver) for us. Good luck!
 

susiestar

Roll With It
Wiz has been on many medications. Some didn't work, some had side effects, some had to be increased and became less effective as he grew up. Partly because some of his issues changed, we changed medications. After a while he didn't need an antipsychotic, but while he did, risperdal was a LIFESAVER. Probably both his and mine - him because I would kill him before he would perp on my daughter again, and because I would end up dead if I had to do that to my son. But my daughter would be safe in her own home. Period.

Concerta was great for a LONG time. Even with periodic bumps as he grew. Then we switched to strattera, and he has been on it for 5 years with only 1 increase. It works with his luvox (SSRI antidepressant) and helps him not be suicidal. He is on trazodone because he needs that little push the antidepressant part gives AND because he doesn't sleep. He inherited my sleep issues, which I got from my father. And him from his mother. It seems to go that way in our family.

He has been on his current dose of his current medications for 5 years. He is now almost 18 and plans to stay on them. I fully support that. We will keep insuring him unless he is no longer a full-time student. Then he had better make a TON of $$ because he has to pay for his medications!

Chances are it will take some trial and error to find the right medication. It won't be fun. But, if you have the right diagnosis you can at least be started off int he right direction. If bipolar is the thought, then you may need up to 2 mood stabilizers to achieve stability. Antipsychotics may also help. Don't try other medications until moods are stable if the doctor thinks he is bipolar.

If it isn't bipolar, then try medications for whatever it is. If he is aggressive or violent, antipsychotics may be what he needs. If they sya depression, I would go with mood stabilizers because you may not know if you are seeing a mixed state. At least until you have several months of mood charting done, I would insist on mood stabilizers. Antidepressants can cause cycling if given to someone with bipolar or other mood disorders-not otherwise specified diagnosis.

If he is on the autistic spectrum then medications won't fix it. They WILL control some of the symptoms, the way Wiz's symptoms of ADHD and depression are controlled. Be patient with medication changes. They can be tough.

But medications are part of the equation for most kids who are difficult children. usually they are better off if medicated. They can cope better with the world if they are on medications, as opposed to off medications. It is ALL about helping them learn to function in the world, so everything that can help should be tried.
 

whatamess

New Member
The last two psychiatrists we've seen don't really acknowledge childhood bipolar. I have and his in-home therapist and school diagnostician have definitely seen him manic. He vascillates between manic (insane amounts of energy, bouncing from harassing our pets and his sibs to tearing up stuff and stealing his sibs things), to irritable(the smallest things sets him off yelling or crying, blames everyone for anything that hasn't gone right and will rant for literally hours on things like why he can't play his video game) and then reg. (hyper, sensory-seeking, impulsive). I don't know if this is bipolar or some other mood disorder, but I've been trying for a month to get in for an appointment. with another psychiatrist.
He is diagnosis'd Pervasive Developmental Disorder (PDD)-not otherwise specified, adhd, anxiety.
We've tried Concerta, Ritalin, Adderall and Strattera (this helped, but he was still very irritable) for adhd. Zoloft for a very short time, it made him very aggressive. Tenex also for a short time because there were no positive effects.
 

susiestar

Roll With It
The adhd medications may have actually increases his irritability. I think the irritable, angry state is sometimes described as being a mixed state - mixture of both manic and depressive states.

Adhd medications can drastically increase that in a person who is bipolar.

The reaction to zoloft makes me think you should investigate and treat him as if he is possibly bipolar. Even if they want to use mood disorder-not otherwise specified (Not Otherwise Specified), the treatment protocol is the same.

Insist the doctor treat him with mood stabilizers BEFORE you add any other medications. For some reason docs want to give SSRI medications like Lexapro and Zoloft instead of following the treatment guidelines that are made by the group that certifies them. The protocol calls for stabilizing mood first, and then adding an antipsychotic if needed. After that if you are seeing stable mood and still have problems you can try adding an adhd medication or antidepressant, but you have to start low and slow - low dose and slow increases. This helps keep any interference with moods down.

Given you don't know, but it sounds like mood disorder or bipolar, you should use those guidelines for treatment. You may have to be insistent with the psychiatrist, but it will pay off.

get a copy of The Bipolar Child by Papalous. It has this treatment protocol in it, with proper citations. It also explains the WHY of following it.

Chances are if you use any medications other than mood stabilizers and an antipsychotic, you will send him cycling out of control. It can be very scary to see.
 

BusynMember

Well-Known Member
My son isn't on any medications. But kids on the spectrum are often prescribed Risperdal. I'm not sure why, maybe for kids who meltdown. I used to post on a site for parents with spectrum kids and Risperdal was a common medication. We did try it for L. when he was little and still had meltdowns and he had a terrible reaction to it. My son does does better medication free.
Be careful. I've been on medications since my 20's and I'm in my 50's. Some medications can make the same problems you want to get rid of even worse. I've had it happen to me A LOT. It's a delicate balance and too many medications. vs. not enough is also any issue. I hate feeling doped up so I limit myself to two medications that make me feel normal. As for bipolar, be careful as well. A lot of Autism Spectrum Disorders (ASD) kids are diagnosed with it so it's a common wrong diagnosis. If you don't like the medications or think they aren't working, I recommend seeing a neuropsychologist (unless you already have). NeuroPsychs do really intensive testing in all areas of a child's function and are in my opinion superior diagnosticians to all others (and between me with bipolar and son with Autism Spectrum Disorders (ASD), I've seen my fair share). Sometimes psychiatrists miss the boat. They don't do testing. Good luck!
 

Christy

New Member
Atypical antipsychotics have been the most effective medications for controlling my sons violent outbursts and for mood stabilization.

Stimulant (ADHD) medications were a nightmare, total rage inducers for my son
Antidepressants caused him to be irritable and aggressive
Mood stabalizers (depakote, lithium, etc) had little effect for him

The side effects for all these medications are scary but in our case a necessity. difficult child has been hospitalized 5 times in two years and Residential Treatment Center (RTC) has been suggested. Right now on his latest medication combo, he is doing very well so we have our fingers crossed that this trend will continue. He needs his medication to stay in a family setting. It's not perfect but it's the best we can do. Consider your situation and be open but cautious to the doctor's suggestion. You know the situation better and are the best one to make the call.

Even the word antipsychotic is very scary but so are the behaviors that necessitate the medication. A good question to ask yourself, can he/she function without the medication? Is he/she able to go to school? Be a part of social activities? Cultivate friendships? Unfortunately, in our case the answer is no do to difficult child's extreme outbursts.

Good luck in making a this difficult decision.
Christy
 

whatamess

New Member
He was on Strattera, which is a non-stimulant adhd medication, it worked as far as increasing his focus a bit, reducing his incessant noise-making. He was on for 3 months, but because of the irritability we took him off. Upon taking him off he was manic for two weeks straight- really bad. I recently read The Bipolar Child and began to think the Strattera toned down the mania and what we were left with was the irritability.
Thank you for your replies, it's very hard to sort out and I really don't have faith in the psychiatrist we are seeing. He'll basically prescribe whatever I suggest, last appointment he said 'are there any other medications you've been reading up on that you'd like to try?'. While I do like having some say in all this, I am not a dr. !
 

susiestar

Roll With It
What a mess the psychiatrist could cause with letting you pick medications!! Are you looking for a new psychiatrist? don't let this one go before you get a new one, but it might be safer to find a new psychiatrist.

Strattera is related to SSRI medications. It is an SNRI, so it works on norepinephrine instead of seratonin. It is an antidepressant. It does help some people with ADHD. My difficult child, Wiz and my gfgbro both take it. It helps them and has for years. Gfgbro gets samples from his psychiatrist - she sent paperwork in to the manufacturer to get it for free for him.

Strattera is NOt a good choice for a kid with mood issues, in my opinion. We were lucky enough to dodge the bipolar arrows and just get the depression with wiz. It is a LOT easier to treat. He is on THREE antidepressant medications - luvox (an SSRI medication related to prozac), strattera (SNRI medication) AND trazodone (old school antidepressant used to help him sleep). He is stable with these three medications, has been for several years. We pray it continues.

The antipsychotic Risperdal was heaven sent for us. It was one of the first medications we tried. Wiz took it for several years. After it stopped working we tried other medications of this type, but had limited results. Wiz was INCREDIBLY violent, even suicidal and homicidal!!! I found him trying to strangle his sister in the middle of the night one night. It was after we had switched to geodon. I later learned he had been doing that on a regular basis to ehr, along with assorted other hideous things. She didn't tell on him because he told her he would kill Tyler, their little brother. (they all have husband and I as their parents, so we don't have any stepparent/stepkid discord adding to things) He was in a psychiatric hospital for almost 2 months before we learned everything. The SW from Child Protection described him as "Hannibal Lector in training". It was fairly accurate.

They can hide LOTS of things. Wiz is not bipolar, he IS an Aspie. But with-o medications he is terribly suicidal, and also homicidal. medications can be a HUGE help, but you need all the info you can get and a good psychiatrist to help you. Otherwise it can be really overwhelming.

With this psychiatrist I would ask for risperdal and a mood stabilizer. It may be very helpful.

I hope it helps.
 

BusynMember

Well-Known Member
Any antidepressant, which is what Straterra is, has a withdrawal syndrome when you go off of it, which is likely what your child was experiencing. I've gone through it. Even if it is slowly reduced, there is often still affects of withdrawal.
Id find another psychiatrist. Any psychiatrist who lets you play doctor doesn't have a clue what he's doing. I would never go in with ideas for medication again. I'd say, "I'm not a doctor." (((Hugs)))
 

susiestar

Roll With It
MWM is very right about withdrawal. I have been through it and heard my doctor tell me she had never heard of withdrawal from antidepressants. I printed out about 25 pages of reasonably reliable documentation on SSRI withdrawal. She was shocked! (Mostly because I challenged her and brought in info to back me up. but whatever, now she can't say seh doesn't know.) She did, last visit, comment to me about more patients admitting to withdrawal when she asked about it. They just thought they were going crazy.

There is an EASY way to help someone in withdrawal. You give them prozac. ONE dose every few days while you decrease the other antidepressant. Prozac stays in your system longer than any other antidepressant. So you can wean off it easier. It will take care of the withdrawal symptoms while still being at a low enough dose, given every other day and tapered down to 1 a week and then to 1 every other week (yes, one dose every other week, it stays in the system for about 2 weeks) and then to 1 a month and then no prozac and no other SSRI antidepressant.

If you are switching to another antidepressant that is an SSRI you can often just switch to that. Wiz is dependent on his antidepressants. He is on 3 of them,including strattera. But with-o the 3 of them he can't function. With them he can. It is simple for us to decide to give medications when even he sees how awful he is when he is off fo them. He hates it because he gets suicidal.

Effexor is a nasty awful drug. At low doses, the starting doses, it only affects the SSRI mechanism in your brain. At the higher level, the "therapeautic" level, it also affects the SNRI mechanism. It throws you into totally new symptoms, which the doctor then says can't possibly be the medication because you didn't have them at the starting dose. Most docs don't know enough about how it works. I learned this and then gave the doctor reliable info about it. her own research backed me up.

My docs get frustrated because I will not switch off of prozac. They cymbalta didn't work, even at an increased dose. Neither has any other SSRI and at one point I had tried 10 of them! Prozac is not as "clean" a molecule as some medications that are the prozac molecule "cleaned up" somehow. Makes no sense to me why I should switch away from a generic medication that works to a brand name I know nothing about.
 

whatamess

New Member
Can I give you guys the history and see what you think?

Age 1-2 - extremely active, doesn't play with toys, prefers to deconstuct things (break sister's block towers, sand castles, snowmen; tips bins of toys not to play with but to hear the noise and dig his hands in them), uses a pacifier, night terrors, one word utterances, sensory seeking, loves all food.

Age 2 -mention to pediatrician about activity level and slow language development- told to wait and see.

Age 2 1/2 -talk to pediatrician again, get a referral for Birth to 3 program. A woman comes out to the house to see difficult child and I. I have his blanket, pacifer and sippy cup while holding him just to get him to stay in the same room so she can see him (she sees this as coddling), we get him to the kitchen table and I pull out play-doh, she asks him for it and he complies, she basically tells us we are too permissive and leaves (6 mo. later I find out she didn't even bother to write a report about the visit).

Age 3-another visit to a new pediatrician and I tell him my concerns, he refers us to a Dr. of psychology who diagnoses Pervasive Developmental Disorder (PDD)-not otherwise specified and refers us to the school district for testing.

Age 3 1/4- starts Early Childhood preschool, also receives speech and Occupational Therapist (OT)

Age 3 1/2-starts private Occupational Therapist (OT)

Age 3 3/4-starts ABA program

Age 4 1/4- move to a new school district

Age 5 -remove from s.d. due to mistreatment from preschool teacher

Age 5 3/4 -begins K, mistreated (food withheld, police put him in hold)

two weeks later begins a program in a contained autism classroom

Remains in that room for 3 years, finally removed due to seclusion and restraint being used far too often and other abusive 'techniques'.

Seen many dev. peds, psychiatrists, therapist- He acts very autistic at these appointments so people cannot get a true view of him. At most appointments he appears non-verbal, lowered IQ, stimmy.

In reality he is verbal, conversational, has many good basic skills, is very ODD in regard to any request related to schoolwork and chores.

For the last three years he has been home with me working on curriculum provided by the school district. He has learned a lot, but it was very grueling just to get through any assignment. He would tantrum for up to 4 hours just about writing a few sentences. He has tremendous anxiety built up over his years in the autism classroom where he would be denied recess and many other activities if he couldn't behave and do his work.
This last year (age 10/11) we slowly brought him back into a new school building with a wonderful speech therapist he saw twice a week for a half hour. I would wait for him outside the room. Slowly we added an adaptive pe class, again he did very well with 1:1 help. Added a few 15min. increments of visiting the 4th grade classroom and he loved it. He started asking if he could stay at school for lunch and recess, we attempted it sporadically because they didnt' have someone to supervise him so we had to wait until someone was available. It went well the few times we tried. Finally the end of the year was approaching and academics were very much on the back burner because the curriculum they gave was way beyond him, they kept putting this aspect off, but in March I insisted they get their act together so he could come to school. He had done so well in the short periods he was there that the 4th grade teacher felt very comfortable setting up a desk for him in her class and welcoming him in. I said he needed 1:1, they had an aide who was helping another child who could also assist difficult child. Day one (we were just doing half a day) went great. By day 2 and him realizing the new expectations, he shut down. I got called in to 'do something' because he was causing disruption and refused to leave the room. I got there and he was hiding inside his shirt. This sort of thing continued for a few days and everyone realized this was not going to work. (He was spitting in class, making noise, refusing to listen to the lesson, calling the teacher stupid in front of the class).
None-the-less he still really wanted to come to school. Finally the only option they could offer was to have him based out of that school's autism room. This made me very nervous because the teacher was very behavior mod oriented and behavior mod has always turned out poorly for difficult child. People think he has control of his behavior when it is really a huge amount of anxiety over all the experiences of his past school days- he has extremely poor coping skills and acts out. This was another horrible experience for him. I was called in by the third day to pick him up early and by day 7 the teacher had retreated, crying to the principal's office because she was taking his behaviors personally. Her way of dealing with him was very 'in your face' which makes him absolutely over the top with anxiety. He was restrained at least 15 times over the course of 16 days. His behaviors included spitting, ripping up decorations on the wall, calling names (stupid, dummy-head, devil), making a mess in the bathroom (peeing on the floor, unrolling all the toilet paper), refusing to do all work, being put in seclusion and kicking the wall so hard the custodian had to secure the wall, at the end he would go into seclusion and strip or pee his pants. At home, he does not spit, strip or urinate inappropriately. I know these behaviors are related to his anxiety, lack of problem solving and just bad past history (these behaviors happened at his last school).
So he went from a needy student who was well behaved and participatory to raging lunatic.
Here's my issue. He needs to go to school for the socialization (he gets almost none except his siblings at home) and because, darn it, he actually wants to go. I have also been home for the last 14 years raising my kids and I'm going back to school myself. I've been taking one class a semester for 2 years, now, this winter I will start my main program and be gone 1/2 the day. I have to make school work for him. I have been trying for 2 months to get into a psychiatrist who looks at bipolar (as our current psychiatrist doesn't acknowledge childhood bipolar), I can't get an appointment it seems because we already are seeing a psychiatrist (it's absolutely insane).
At home difficult child's main issues are: irritability, defiance with chores/school type items, obsession with video games, cannot sit still very long for anything, poor short-term memory, hyperactivity, irritates the pets in a mean way, sensory needs (to be tightly hugged or hugs others, burrows in blankets, constantly eats).
On a good day- he is conversational and considerate, plays nicely with sibs and pets and is generally even-keeled.
Overall, he is manic-y 30%, irritable 40%, normal for him 25% and easy child 1% (we call this awakenings- last time was 3 years ago -it was heaven and a glimpse of what his life could have been).
 

BusynMember

Well-Known Member
Beh. mod should not be the treatment for a child with Pervasive Developmental Disorder (PDD)-not otherwise specified. That just shows they have no clue about his diagnosis. I don't care if the class is labeled an autistic class or not--I wouldn't allow my son in that sort of class.

Maybe your son needs a 1-1 aide in a different sort of setting somewhere. It can be out of district and they have to pay for it if they can't help your son. I agree that he needs to be around other children, but he also needs social skills classes. Autism Spectrum Disorders (ASD) kids need text book teaching to learn societal norms. They don't "get it" just by mimicking other kids. Also, they often find social norms "stupid." They really need a very special sort of help that explains things and is concrete and not full of behavioral demerits. Many, many Autism Spectrum Disorders (ASD) kids have trouble when they get upset. Not all Autism Spectrum Disorders (ASD) kids act out, but many can't help it and do. They need help so that they don't get so frustrated. A therapist who deals exclusively with spectrum kids is fantastic. Most therapists do not "get" spectrum kids and can't relate to them or help them because they don't know how they think.

I would call your state Dept. of Public Education (we did) and talk to the special needs advocate. Tell him the story and find out who the FREE parent advocate in your district is. Having an advocate makes all the difference in the world. The school districts never tell you they exist because they hate them--the advocates go with you to school and IEP meetings and then they actually have to follow the law or they can be investigated. Other parents had to tell me about advocates. I never learned about them from the SD.

The advocate really helped me get my son the help he needed. The school district certainly jumped to attention when I told them that I had hired her. And, yes, THEY ARE FREE.

PS---I have never met an Autism Spectrum Disorders (ASD) kid who wasn't obsessed with videogames. Videogames may be "bad" for typical kids, but my son's Autism Therapist explained that they aren't bad for my son because he has learned good eye/hand coordination, they force him to read, and he socializes online. At any rate, Autism Spectrum Disorders (ASD) kids don't have much imagination so they need outside stimuli to amuse them. I am maybe in the minority but since my son does nothing productive if I limit his game use, I don't. If I make him stop then he walks around, picks things up, looks them over, sometimes breaks them by accident, sighs a lot, says "this is boring" 100 times, etc. He DOES have to participate in sports (Special Olympics is best for him, even though his IQ is normal) and he MUST do an hour of exercise after school. Usually he rides his bike to the next town. Then, after he comes home, he can veg out. In summer he goes to summer school. When he turns 16 next month, we are going to see if McDonalds will let him work part-time. I do demand he spend time out of the house and doing things that will be useful to him later on as well as now. He is at the point where we can do this with him, but it wasn't always the case.

JMO.
 
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For my daughter with BiPolar (BP), abilify (antipychotic and mood stabilizer, latimal work well. She has been on those two for nearly a year. The doses have been the same , 15 Abilify (morning) and 125 Lactimal (evneing) for 5 months, and have been pretty much at these doses since late last fall. Compassion
 

susiestar

Roll With It
MWM gave great advice. I would do what she says.

The way they have repeatedly treated your son is horrific! I am glad you pulled him out when you saw that the behavior of the staff was hideous and cruel.

behavior mod is NOT an effective tool with kids anywhere on the autistic spectrum. It just isn't. No restraint or time out or quiet room is going to change that. He will just get more and more out of control. He needs the teacher Wiz had for 5th grade. Sadly she is teaching high school in a different school district now. But she would be incredible with him.

There truly ARE good teachers, though you have no reason to believe that. Get the advocate, find a school that will be a good fit and force the school district to pony up the money. It truly IS the least they can do, in my opinion.

Hug your little guy.
 

whatamess

New Member
We have had many advocates. They look at the iep, but our problem has been with personnel. It's very difficult to prove a teacher has a distorted outlook, bad attitude, uncompassionate. We've had a lawyer involved. I currently have an advocate that works with the lawyer. We have had many meetings with the district's lawyer and asst. superintendent. We have switched schools (within district). I have no first hand knowledge of surrounding school districts, but we were told by many when we moved here 7 years ago that ours was the best (that's one of the reasons we chose to live where we did). If we went out of district it could be just as bad, I just want some consistency and 1 teacher who 'gets' him.
 

JaneD

New Member
My DS is on medications. They are necessary to help with Generalized Anxiety Disorder (GAD), Obsessive Compulsive Disorder (OCD), depression, and anger. I would love it if he could be off them but that's just not the way it is. medications help him be the person he wants to be, the person he can be.

He's currently on zoloft and geodon. He has previously taken abilify. Abilify made him tired and always hungry. It helped a bit with mood stabilizing (holding off anger/rages) but became clear that it wasn't enough. He just started geodon and feels that it helps him manage his anger better than abilify and doesn't make him so tired all the time.

medications can certainly be scary but for us, it would be scarier without them.

-- Jane
 

Christy

New Member
(((hugs))))

I see a lot similarities between what you are dealing with and our family situation. I home schooled for a year because I was unhappy with the self-contained program that my son was a part of. It was great for academics but lacked the socialization just like you said, plus it drained me, being both teacher and mom. We went back to the same school program but only after hiring an advocate and having a series of iep meetings, again it sounds like you've been down this path, unless it is your choice, keeping difficult child home is not a reasonable solution from a school district standpoint. Continue to work with a sped advocate, lawyer, psychiatrists, etc.. to show why the special classroom is not working for difficult child and insist on an out of district placement at a school that specializes in autistic children (assuming there are any within a reasonable driving distance). If homebound placement is the only option, the school should be providing a teacher to come in and work with difficult child.

I can't see why the school needed to call you to come and get difficult child if he was not harming himself or others. Disruptive behavior is something schools need to deal with. Is you son aggressive when he has a meltdown? If he is aggressive or destructive this will limit his schooling and socializing options. In researching out-of-district placements for my son, I discovered that many of the autism programs would not accept children with a potentially violent behavior. The ED (emotionally disturbed) schools equipped to deal with extreme behaviors run on a behavior mod approach.

Back to your original question about antipsychotic medications, after finding a psychiatrist you feel confident in, if he is of the opinion that you should consider these medications, I think it is worth trying. Risperdal has been a lifesaver for us and a medication like this could help your child be successful.

Good luck with your struggles. You son is lucky to have a parent like you!
Christy
 

crazymama30

Active Member
I would ditch the psychiatrist. Our psychiatrist states which medications he think will work, and then I have the final say. I usually go with what he says.

My son cannot take a stimulant(ADHD medication) without a mood stabilizer. He just cannot tolerate them. We recently added an atypical antipsychotic, abilify as his behaviors were escalating. He is now doing the best he has ever done. He is reasonable (most of the time), and can identify better with his feelings.

With that being said, it took us over 3yrs and countless medications and tears to get to this place.
 
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