New Member
to when Dylan was 3. 5. When I came here and he was 7 years old. "Severe ODD" is what he was labeled, haha! ADHD/ODD. He had been diagnosis'ed in the past. Intermittent Explosive Disorder. Mood Disorder, not otherwise specified. Disruptive Behavioral Disorder or something hahaha. Yeah, he was disruptive.

Slammed his head through a window at 4 because I was trying to take a piece of gum out of his mouth (after 3 warnings). Constant tantrums. Sooooooooooooooooo hyper. OMG is so hyper. I mean, 10xxxxx more hyper than an ADHD kid.

Defiant. Wouldn't listen to a word. "Dylan, please brush your teeth". "NOOOOOOOOOOOOOOOOOOO" ....followed by "wahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh" for 3 hours.


You guys remember why you all know him as Dylan? Because I couldn't stand the thought of claiming him as a gift from anything, LOL! Dylan, his name is DYLAN, not difficult child, is what I remember typing.

Drawing on the dog. Ahhh, Becky, remember the tools being laid outside? Yeah, $3,000 worth. Ahh well.

Breaking windows out of the chicken coop. Throwing the dining room TABLE across the room. Talking to himself, barking like a dog, asking the wall if it was drunk :hammer:

Bossy. Tattling. Couldn't get along with anyone. Hateful. Mean. Cried over every THING!!!!!!!!!!!!!!!! Oy vei! :crazy:

Bedtime. Hahahaha. "Mommy, you forgot my cream". "Mommy you forgot my light". "Mommy you forgot...." 100 times a night from the top of the stairs. OMG! I wanted to choke that kid :smile:

Ritalin. No, Tenex. No, Clonodine. Oh, that's not working? Ok, try Tenex in the A.M., Clonodine in the P.M. (looking back that blows my mind). Oh they didn't work? Hmm, maybe he's manic. Try Seroquel (never did find out what he thought by "manic", and back then I had no clue what that word meant). That didn't work? Ok, Metadate. Nahhh, try Risperdal. No, Abilify. No Tegretol. He's angry - let's try Topomax. Depakote. Concerta. Geodon. Zyprexa. Lithium. Wellbutrin. Risperdal three times, Abilify three times, individually over years.

I forget them all now. Hell, he's been on them all.

From ages 3 to 9 we had no luck with medications. 6 years - wasted, for nothing. Drug to drug to drug to drug.

9-11 we say he's Bipolar. I think I see mania. Heck, he's dancing and twirling like a ballerina up the boardwalk at the ocean. psychiatrist says "yep, that's mania". Watches him in the office, "he's hypomanic for sure". Lithium/Abilify. Abilify takes a poop. Let's try Geodon. Nope, doesn't work. How about Zyprexa? Nope, doesn't work. Hmm, what next?

How about NONE?

So, now he's 11. In the Residential Treatment Facility (RTF). No medications. No Bipolar. Pervasive Developmental Disorder (PDD)-not otherwise specified, ADHD. They took him out of the "ODD" house. I dunno what, exactly, those kids are diagnosis'ed with, but they're the kids that don't listen, don't follow rules, kick, hit, punch, spit at teachers, do all that stuff. I call it the "ODD" house, but I dunno what it is. That's the behavior mod house. Irregardless, he's out.

And this weekend we moved him into the Pervasive Developmental Disorder (PDD) house. The kids are a little lower functioning than him, but all Autistic. He's medication free. Pretty hyper. No focus or attention whatsoever. But maintaining. It's been 3 months. Maybe he's honeymooning? Maybe he's tired of throwing tantrums? Maybe he's maturing some, going through puberty? Maybe he's just blossoming into his normal self now that he's finally medication free?

He needs a medicine. Maybe two, or three, or 12. LOL! I dunno. He needs help with focus and attention, no matter what. We're gonna try a stimulant again. Focalin maybe. Dexadrine. Dunno.

He is doing so good. He is maintaining, following rules, getting therapy, PARTICIPATING in all the therapy. Listening, I dunno how, but he is, and learning, just in tiny pieces (as much as he can pay attention to LOL) but nevertheless, learning something.

It's amazing to me what can look like what with these kids. What looks like mania might not be mania. What people perceive as mania may not be mania. Ditto with depression. Ditto with Bipolar. Ditto with the whole thing.

I remember when Dylan was small, in 2nd grade for example, he'd be standing at a tree, alone, at recess, singing. I knew that was part of his "Pervasive Developmental Disorder (PDD)" thing, but just didn't get it.

I really convinced myself he was Bipolar. Everyone here, too, I think. I mean, we were all set to live the life with a Bipolar kid. And honestly, I don't think now that he is.

I think he's Pervasive Developmental Disorder (PDD). I KNOW he's ADHD. Combined 3x over LOL.

I dunno what the point is to my post. I have been talking to alot of moms of little, I mean LITTLE kids lately, that have been saying "my son is 4 and he was just diagnosed with Bipolar". FOUR!?!?!?!?!?

"My son is 5 and he's on Depakote, Seroquel, Clonodine, Topomax and Tegretol".

Holy cow!

I don't know how to respond to these people anymore. I feel like I have alot of "in hindsight" stuff I could throw at them. Ya know, when Dylan was 4, I wanted "the drug". There wasn't "the drug", nor does "the drug" exist. You know? The drug that will settle him down, make him listen, pay attention in school, and not cause me any problems. Doesn't exist.

I want to tell all these people with 4 and 5 year old kids to slow down. But I don't know that I should. I mean, heck, if someone would have told me that 8 years ago, I woulda told them to stuff it LOL! But why ask my advice then?

I feel blessed. I'm very fortunate for the Residential Treatment Facility (RTF) being where it is, the interventions they have, and what is given to Dylan. We had his IEP meeting Friday, and his teacher is awesome. I mean awesome. I wish I could carry him with her until high school graduation! LOL! I love her :flower:

I don't know that the "Bipolar" won't come back. Heck, maybe 10 years from now he'll go up and down and be BiPolar (BP), and who knows? But I feel so comfortable right now with the Pervasive Developmental Disorder (PDD). I feel like we found the answer.

How many people find that?

I know many of you feel labels are unimportant, but if you know me, you know for me, I've always wanted it. IS HE BiPolar (BP)? IS HE Autistic? We did the neuropsychologist because I WANTED TO KNOW, is the Rule Out yes or no? Is he? Neuro said yep. psychiatrist said nope LOL!


Guess I just needed a place to yak. Sorry. The bottom line is Dylan is doing awesome. Learning to interact with others. He's so quirky. Wow, do I see it now with him being around sooooooo many other kids. Ha! I still love him the most, anyway :its_all_good:

Guess maybe I just want people that have younger children to stop and read this and think "hmm, maybe there's a light there at the end...". I never thought I'd get through all that h*ll with Dylan, but ya know, right now, I am so thankful for my son. And he's the most courageous child I've ever met.



Well-Known Member
Staff member

I worry, too, that so many young children are being labeled bipolar and given heavy duty drugs. I'm sure that there are some children that are correctly being diagnosed with early onset bipolar but it does seem to be the popular disorder at the moment.

Dr. Rosemond's take on this will surely cause a lively discussion on the board. I do think he provides some food for thought.

Are brain chemicals to blame for 6-year-old's bad behavior?

From the Happy Endings Department: A little over a month ago, the parents of a 6-year-old boy asked my advice concerning his daily, sometimes violent tantrums which had been ongoing since he was three. They had removed nearly everything from his bedroom including his dresser and lamp because they were often the objects of his destructive rages. When he threw one of his fits, they confined him to his room for the day, but if he tried to hurt one of them when being escorted there (i.e. digging his nails into his mother’s arm), or he kicked the walls or some article of furniture along the way (he had done considerable damage to his bedroom walls), they confined him to his room for a week other than church and school. When his mom wrote me, by email, she said he was “currently upstairs kicking his walls and screaming his head off.” She asked if one week of confinement was unreasonable, adding, “I have put up with this for far too long.”

Whether “reasonable” or not by whatever standard, one week of confinement in a Spartan but otherwise pleasant room was accomplishing nothing, obviously. More of the same was surely destined to accomplish more of the same. I told them to sit down with Demento (not his real name) at the first calm moment and tell him that “the Doctor” had said they were going about this all wrong (passing the disciplinary “buck” to an absent authority figure is often strategic). He was old enough, the doctor said, to go to his room on his own. So, from then on, when he pitched one of his fits, that’s what they were to do: simply tell him to go to his room. If he obeyed, right away, he only had to stay there until he’d gotten himself back under control. When he came out, however, he had to apologize to everyone who witnessed the outburst.

If, however, he refused to go to his room, requiring that one of his parents take him, he had to remain there the rest of the day and go to bed immediately after supper. If a tantrum occurred after supper, and he refused to go on his own to his room, then he had to go to bed immediately. The Doctor also told the parents that until they were able to fix—spackle, paint—all damage to Wild Thing’s room they could not buy him anything other than what was absolutely necessary.

I recommended that they finish the conversation on a upbeat note, as in, "So, we promise to do what the Doctor says from now on!"

A month later, this update: “He has had three tantrums in the last month—a huge change from one to three per day. He is more helpful at home, is reading to his little brother, and has a much sunnier attitude.” The repairs to his room were almost finished, and the return of his dresser was imminent.

It’s a fairly safe bet that Janice and Dimitri Papolos, the authors of The Bipolar Child, would have said this child was in the throes of what they call early-onset bipolar disorder. The parents’ description of his often erratic behavior fit the Papolos’ description like hand-in-glove. According to them, EOBD is caused by as-yet-unknown physiological abnormalities, as in the still-theoretical (but widely thought to be established beyond question) “biochemical imbalance.” I will deal with the Papolos’ treatise in greater detail in an upcoming column, but suffice to say for the present that my general take on this latest childhood behavior disorder amounts to “bipolar, schmipolar.” I may someday be proven wrong, but until there is as much proof that things like wild tantrums at age 6 are caused by biochemical glitches as there is that bacterial pneumonia is caused by identifiable bacteria, I’ll stick with schmipolar. (By the way, I know that my comments in this paragraph and the next are going to cause controversy in the lay and professional communities. I am wide open to discussing the issues I raise with anyone who can discuss them without personalizing them and becoming emotional.)

At this time, I’ll simply point out that physical anomalies capable of sustaining violent emotional upheavals and a generally surly attitude for three years cannot be cured by simply telling the child in question that when such an upheaval occurs, he can either go to his room on his own or be taken there, that his choice determines his length of stay, and that he must apologize afterwards. Yet this “therapy” worked, so one can only conclude that this little boy’s physiology is without defect. But his “symptoms” conformed to the Papolos’ criteria for EOBD. He is, therefore, a schmipolar child.


New Member
Wow your post has made me so emotional. I'm so happy that things are going better for you and your son. The things you said just really make you think whats going on??? With our kids, the doctors, just everything.

Its so hard, especially when you have to deal with problems on an increasingly frequent basis not to want an answer or solution to help your child. Maybe thats why so many times parents take the diagnosis from theses ph.d, who lets be honest are basically just guessing.

I struggle with this as well, I guess I just want a problem I can fix or an answer as to what in petes sake is causing these behaviors.

My thoughts are with you and all others who are struggling with their kids.


Active Member
Janna, I'm a huge crusader for a thorough multidisciplinary evaluation right up front. Even then it doesn't mean medications won't be suggested prematurely--difficult child's developmental pediatrician reccomended Prozac at the first appointment when we hadn't even completed the process with him, much less any of the other specialists. But I do think parents stand a much better chance at seeing the fuller picture through that route and developing more accurate treatment plans.

I will say that I think insurance companies are partly to blame. Our insurance company would have picked up most of the cost for any and all medications he would have been on indefinitely but they
1) cut the developmental pediatrician coverage in half when they learned his issues were "developmental",
2) wouldn't pay for any speech/language assessments or therapy unless he'd been in an accident
3) wouldn't pay for any Occupational Therapist (OT) assessments or therapy unless he'd been in an accident
4) Not one dime towards the Occupational Therapist (OT) equipment in our house which has helped more than any medication ever did without a single side effect.

Now we had the money in savings at the time to follow up with those assessments, therapies, supplies and, equipment (drained the account but we had it). The insurance companies wouldn't pay but a small fraction overall towards those things that would have the greatest potential to help difficult child's issues be identified and worked on so he could function at his highest potential in life *and* become less dependent on the health care system. Without question they were willing to pay full coverage for medications which I suspect would have made him drug dependent for life.


Hound dog

Nana's are Beautiful

I remember the post when you refused to call Dylan difficult child and so named him by name. Lordy, was it really that long ago??

And I recall alot of the other as well.

Now, I have a question. Dylan is doing well off the medications. Okay, so not perfect, but well. So why are they considering more medications? Why not just wait a good long time and see?

I really worry when little kids are being diagnosed and I see them on long lists of medications. (heck I worry when I see adults on long lists of medications) And I also worry because for some reason as a society we tend to have diagnosis fads. First it was the ADHD. Any child who had extra energy was ADHD, toss them medications and quiet them down. (I'm talking 60's-70s here) Now bipolar and autism are the big hits.

Have you guys seen the new commercial? The one where the Mom puts her toddler into the car seat and they say something about so many getting hurt in auto accidents, but one in 166 have autism??

WHAT??? Don't they see something wrong with their own statistic??? 1 child in 166 has some form of autism. No way. That's simply outragious. If that was true you might as well say autism is normal! Sorry. No way am I going to believe it. Because if that IS true then we'd better start a MAJOR campain and find out WHY it's true. Cause there is something seriously wrong.

When I talk to other parents about this sort of thing I always advise them to be over and above careful. Get 2nd and 3rd opinions. Make sure of who is doing the dxing.


New Member
Wow! What an amazing post..thank you for sharing it. I agree with everything that you said. :bravo:

We have been though so much too with our son. And early on when it was sooo bad and we were in over our heads we were just happy to get a diagnosis. Now five years and a million medications later the diagnosis was wrong. I too think parents of small children need to slow down and get thorough evaluations done before only taking the word of one psychiatrist who only basis his diagnosis on what he hears from parents. I know their are kids out there getting true diagnosis's, but there are too many getting misdiagnosed these days. It's scary! :smile:

I hope that parents of younger children can learn from some of our experiences and not have to go through some of the hard lessons that we have had to learn the hard way. Although everyone needs their own experiences to to able to appreciate the good & the positive when it happens, no matter how small.

Thanks again for sharing your insight. And I happy to hesar things are going well... :smile:



Well-Known Member
Thank you for a thought-provoking post, Janna. What a long process this has been!
Kathy, I almost posted that Rosemond colunn last wk, but I'm glad you did it here, where it is more appropriate to this discussion.


Active Member
Lisa, that statistic is true, as far as I can determine. If anything, it's an underestimate. I had to use numbers like 1 in 100 (from our own Autism Association figures in Australia) for Pervasive Developmental Disorder (PDD) in general, 1 in 200 high-functioning autism and Asperger's. These were the numbers I was using in my campaign and no educator queried them, they accepted those numbers. The figures are high, perhaps because the diagnostic criteria are now being more broadly interpreted, plus more kids have access to proper assessments.

Janna, you and Dylan have really been through the mill. I think the important thing now - in the confusing map of all the possibilities of where you have been and where you are going, there is a small signpost saying "you are here". I don't think you've confidently had that before.

Where to now? You've already covered a lot of places on the map, you don't have to go back there. I can't tell you what else you will find, but you and Dylan are on the path together and for Dylan, that is what counts.



Well-Known Member
Janna, you're going through what I still go through. "Why did I let them put my son on 100 medications???" Why did they say he was bipolar? Well, let's see. His birthmother was a drug addict so she obviously had bipolar. She couldn't possibly be self-medicating for any OTHER reason, right? So he's hyper and seems happy (not sad) so, ah, he's MANIC!
I get worried too when I hear, "My three year old is bipolar and is on Risperdal."
The scary part is my son DID have a MDE (two of them) and they group of them got him wrong. One said ADHD, one bipolar. The bipolar was done at the same hospital that the doctor was on staff at, so my scary guess is that they were not going to override his diagnosis, even though they said he had "concrete thinking" and "autistic traits." What the heck is autistic traits???? It's Autism Spectrum Disorders (ASD)!!! For years I asked about it because Lucas had a speech delay, sensory issues, he used to methodically rock himself to sleep, he talked to himself (oh, psychiatrist thought he was hallucinating...lol). etc. Three medication free years later, my son is clearly a happy boy on the Spectrum. He has no moodswings. He is probably the most "even keeled" person in our family. How did they get bipolar out of THAT? THe psychiatrist who diagnosed him saw him for one hour. The neuropsychologist who asked, "WHO said he was bipolar?" saw him for twelve hours and tested him in every way.
I have trouble responding to parents of little kids on heavy duty drugs too--but I try to tell them to see a neuropsychologist, get a second opinion and go slow. in my opinion most of our kids will get a new diagnosis. when they get older and things become more clear.
Well, better quit before I bust my keyboard, pounding on the keys. Glad Dylan is doing so well. I can really relate to Dylan singing alone by a tree..lol. Lucas talks to himself when he's standing outside waiting for the bus. I can hear him. I was told that kids with processing disorders often talk out loud because words make more sense to them when they do. Lucas knows better than to talk to himself in front of his peers and he certainly isn't hallucinating. All those antipsychotics...gotta go before I explode...lol.


That was an amazing educational post. Can definately agree that I just want an answer. I would LOVE there to be a drug to just "fix it". But what I have learned along the way is not so much the drug as the education. When you can educate yourself, you can learn how YOU can deal with the situations. I tried to convince myself for a long time that there is nothing wrong, I tried to make him do things other kids did. Then I had to admit, this is just not right. The more I read, the more I learned how to help ME deal with him. Things are so much better right now than a year ago, or two or ten. But I also know that can change in an week, day, hour or minute. So, I am enjoying him at this moment and not stressing over what might happen.

good post


Going Green
Your post really got me thinking back too. When we got difficult child at the age of 9, he was on Tenex, Adderall and Zoloft. The explainations that the social workers gave us were: Adderall - because he is ADHD (but no explanation of exactly what that entails), Zoloft - because he suffers from depression and Tenex because he gets angry and has rages. (They actually told us that the Tenex is an anti-hypertension medication and he is on it because if his blood pressure is lower, he won't get as angry. :surprise: WHAT???) After a year of pure he**, he was hospitalized and diagnosed with BiPolar (BP) and had a complete medication wash and change. Once he was on the Depakote, it was like an almost instant change as far as the rages went. Yeah, he still had his moments but I didn't really have to restrain him anymore.

But.......let's break this down. ADHD? Oh yeah, no arguments there, keep the Adderall.

Depression? The kid has been in and out of foster care his entire life and consistently since the age of 4. He has been in numerous foster homes, had 2 (BACK TO BACK) failed pre-adoptive placements (one of which was with members of his birth family)and probably thinks that no one wants him and that he's a bad kid. Yeah, I'd be depressed too. But clinical depression? Probably not so no more Zoloft.

Tenex - Now we know that that is a good medication for him but the reasoning we were given? These people are out of their flipping minds.

And the kicker for me? I went back through some old reports that I had gotten my hands on before we adopted him. (because AFTER the adoption, we wouldn't have the RIGHT to see his old medical records). He had, at an earlier time, been diagnosis'd with BiPolar (BP) and had been on the Depakote. Was it kept up on? Nope. Gee, you think the resulting rages might have something to do with why people felt they couldn't handle him and would send him back because of behavioral issues??? That burned me to no end when I found that out. Yeah, we may not have wound up with him if they had kept him on his Depakote but he may have wound up either with some of his birth family or closer to his siblings. Or, hmmmmm...maybe not had to go through some of the disruptions and moves from home to home. Ya think?!

Granted, on his medications (when they are at good levels) he's still not a little angel but they definately help. I know that some of his "issues" are related to his time in foster care whether specifically or in a sense that it contributes or feeds his BiPolar (BP) symptoms but sometimes it's hard to distinguish. I am glad that we got him and not his birth family, because honestly, their kids aren't turning out the best and that's WITHOUT diagnosis's. (I think in their case, parenting is an issue) But at the same time, for him, I wish that he could have stayed with one of the other families so he could have grown up closer to his sibs. (We live about 2 hours from his original county) We use to have some contact but we would always be the ones to initiate it. I stopped doing it and they NEVER call. (yeah, off on a tangent here but it always gets me worked up)

Anyway, I'm not sure what I'm trying to say here. :hammer: I guess it's that I agree with you Janna. There are so many diagnosis's flying around at early ages that either aren't right or if they happen to land on a good one, sometimes it's not followed through. Then you have all of this time that could have been better and wasn't and things that happen that shouldn't have.

And yes, I remember the tools! LOL We should start a "destruction pile". I can contribute the power washer that was smashed against a tree during play and then tossed over the fence so we wouldn't see it. (That was just a couple of years ago!) Also, numerous mops, brooms, missing tools, tape, bolts (a lot of them were REMOVED from things), appliances with the cords cut off, household decorations, towels, ummmm....oh yeah, our desktop computer.....and so many more things. You know, I think if we all contributed to the pile, our space program could save a lot of money out of their budget. We wouldn't need rockets to get to space.....just scale the pile!


New Member
It’s a fairly safe bet that Janice and Dimitri Papolos, the authors of The Bipolar Child, would have said this child was in the throes of what they call early-onset bipolar disorder.-John Rosemond
Regardless of which side of this issue someone is on, unless this child was actually diagnosis Early Onset Bi-Polar (EOBP) by Janice and Dimitri Papolos, I think that's an irresponsible statement to make, especially for a professional. I find it hard to believe that any competent doctor would make a diagnosis of Early Onset Bi-Polar (EOBP) based solely on the fact that the child has tantrums. It took us a year to get a bipolar diagnosis for my son, and he was in his mid-teens. Even then, his therapist at that time told me he didn't have it, because "kids don't have bipolar." Okay, then give me something else that makes sense, because I'd love for it to be something easier to fix. We spent a lot of time in h... in the year it took to make that diagnosis.

Having said that, I think what SRL said about getting a thorough evaluation up front is important, especially in the case of younger kids. However, as she pointed out, I think it's also extremely difficult to accomplish. I'm very glad I didn't have to weigh the pros and cons of medicating my son when he was much younger. By the time I did have to make that decision, we were desperate and ready to try just about anything.


New Member
SRL, you have touched on something so imporatant. The saddest part is, you're right. I'm now fighting to try to get Dylan O.T. outside of the school. I have to have this evaluation, then this evaluation, then see this person. It's like a 3 ring circus.

But getting him on a drug? No problem. Whatcha need?

I'm not anti medications. Trust me, I'd be a hypocrite LOL! But, I do think there are alot of kids on alot of medications that may not necessarily need to be. I also think alot of these medications may be making alot of these kids worse.

And just as a side note, I'm not speaking of anyone here. Remember, I run a Childhood Bipolar Support page. So, I have 400 people that I talk to ~ alot.

I also see alot of the "I asked my son to get off the computer, he spit on me so I left him there another 6 hours until my husband got home" emails, and "because he's ODD, what can I do but leave him there".

Pay attention to how many people respond positively when you tell them about behavior mod over how many people will respond positively when you talk to them about medications. When I spend 20 minutes typing up a great email about how to implement some type of behavior mod into their life, they don't email me back. Or tell me "he's ODD, that will never work". But if I say "hey, have you tried a mood stabilizer yet?", oh yeah, buddy, they're listening then.

Alas, we did the MDE thing with Dylan. Heck, he was in Early Intervention at pre-school with an IEP at age 3 1/2 due to severe speech delays. He was getting Occupational Therapist (OT) then. He was in a school room with a teacher and aide, a psychologist, an Occupational Therapist (OT), and nobody saw Autism. Nobody mentioned Autism. I didn't hear the words "Pervasive Developmental Disorder (PDD)-not otherwise specified" until 2003. And that didn't come from any of them that had spent 5 hours per day, 7 days a week, coming from my kids. And even then, that psychiatrist, a board certified M.D., said "ehh, maybe Pervasive Developmental Disorder (PDD) ~ he's complex, I dunno".

I think there are 1,000 different ways things could play out. And alot of kids don't tell their side of the story. I'm sure there are parents that post here, that email me, that may lack in certain skills, or are angry at home, yell, spank, that don't actually TELL YOU they do it. Which can cause issues in itself, that may make the child seem one way, but isn't really the case. And how is the psychiatrist or doctor to know?

Hmm, did that make sense?

I think this takes time. And I was one of the rushers that couldn't wait to find the miracle drug. I just feel so sad for my son that I had to put all that junk into him and maybe he just didn't need it.

Lisa ~ the reason we're still exploring medications with Dylan is because of the hyperactivity/impulsivity/severe (and I mean severe) lack of focus. He has a 1:1 in the classroom, because he cannot finish any assignment. It's not that he's defiant and not doing it. It's that he's all over the place. He rocks, shakes, twiddles his fingers. To watch him, it's so sad. He's like Rainman. Rocking side to side. Front to back. Chewing on his shirt (anxiety probably). I don't want to drug him for every thing ~ not worried about the anxiety. Working on that with therapy. But the lack of focus and the inattentive behaviors, we're hoping something will help that. He is so smart! Not gifted, but able to make it at grade level. But in his current, unmedicated status, that is impossible.

Glad I gave everyone something to think about. I may repost this on my blog, just food for thought for everyone else. The sad thing is, so many people take offense to so much :censored2: nowadays, you just have to be careful every little thing you say, even on the internet on your own web page lol.


New Member
I first joined this group when my son was 5 and we were trying to figure out what was going on. His first diagnosis was adhd and some unspecified behavior disorder. The behavior disorder has gone by the wayside, but he is on the autism spectrum. Aspergers.

This last summer I was referred to an article on something called autistic catatonia. This can happen to kids entering late teen early 20s but isn't very common. So now I have something else to watch out for.

I went a couple of years without posting anything and my registration got lost, so I rejoined, cause I'm constantly referring parents I meet to this site.

At the moment things are fairly stable.


Roll With It
We started interventions later than many of you. We were blessed with a psychiatrist who really listened to us and to difficult child. She did a lot of testing.

She did prescribe medications, but EVERY time we talked about a change or a new medication she gave us info then told us to go home and think about it. Then we came back and told her what we thought. Sometime we took 3 months of back and forth to decide on a new medication.

After we moved we had a great developmental pediatrician. He and his coworkers did close to 20 hours of testing, over several weeks, BEFORE any medication changes were made. He kept us on what difficult child was already on, but made no changes until after the evaluation, and he also gave us time to THINK about each medication or change.

He worked with me via email, thank heavens, and was amazing. But he seriously cut his practice due to his own family problems, and we were sad to lose him.

I really hate it when I see pediatrician prescribing these medications. I knowmy daughter was given prozac byour pediatrician. And as soon as we noticed problems with it we were scheduled with a psychiatrist. pediatrician said she could help with ptsd and anxiety if they were very simple, but they werenot.

I really respect this pediatrician, and she is awesome to this date.

Good post, I know many of the positive changes we found were when we were on the same page and using discipline correctly to manage behaviors (NOT to punish the child, but to manage behaviors).

Hugs to all.



Well-Known Member

It's good to read your introspection and reflection on the past. I believe, that as parents of difficult children, we need to do that a lot. It's important to remember from where you came and how you got to the now.

When I first came here in 2003, my difficult child was in the full blown school raging period. Clearing the classroom was a several times a week occurance. Dumping desks and destorying work were commonplace.

Now he's in middle school. Last year he ran for school office and won! All his teachers in middle school speak to what an intellegent, good kid he is. Doesn't mean he doesn't have his molments, but the good definately outweigh the bad and the trying.

Changes in diagnosis and medications are as common here as the winter cold. Some of our kids remain puzzles to the most experienced docs. I don't believe there are any pat answers or any pat medications. I think, above all, knowing our kids to the core is the most important way to help. That way to help could be therapy, behavior mod at home, medications, or even stepping away and turning it over to someone else.

Knowing our children is the best way we can help them. Knowing them takes the ability to look back and look ahead at the same time.

Life with our difficult children is ever challenging. But I believe they are true gifts from God. Whether they are a blessing or a curse at any given time is the nature of the being.

Thanks for sharing your thoughts. I'm so glad to hear that Dylan is doing well. I know it was very touch and go when he first entered the program. He is a sweet boy who will one day make the corner of his world a better place!


What a great post. It really has me thinking... Sharon basically said what I believe to be true much better than I ever could.

I guess, looking back, I was lucky in the sense that no doctor offered any medications for either one of my difficult children when they were young. At the time, I just remember being incredibly frustrated as each new doctor we saw, came up with a different diagnosis for difficult child 2. (No one thought difficult child 1 was anything other than a "difficult child" with ODD back then.)

I was lucky because given all the diags we've had on difficult child 2, I'm positive he would have been prescribed drugs that wouldn't have helped him and may even have made him worse.

difficult child 2 is currently going through extensive evaluations again. Hopefully, we will get a diag or diags that we believe are accurate. Only when we believe he has accurate diags, will we be willing to try medication.

difficult child 1 didn't receive his diags until he was 14 years old. He received extensive evaluations before he was started on Trileptal. We waited until this year before putting him on an antipsychotic because my husband was afraid of over medicating him and of the side effects. However, in difficult child 1's case (16 yrs old), I truly believe, at this moment in time, he needs to be medicated.

I'm so happy that Dylan is doing so well. He is very lucky to have you for his mother. You did everything in your power to help him. Finally, all of that hard work is paying off.

You are right. It is a long and frustrating process when trying to find the right diags and the right type of help - whether it be therapy and medication or just therapy. Thanks again for sharing your thoughts.

And Way To Go Dylan!!!:bravo: (This cyber auntie is very, very proud of you!!!) WFEN