Haven't been here in a long time...

Discussion in 'General Parenting' started by STRESSEDTOMAX, Oct 11, 2011.



    Hi Everyone -

    I have been on and off this forum for years but never consistently stay. I really don't know why that is because I definitely belong here. For some reason, I find it overwhelming. Anyway, my difficult child is my son Tommy. We first started seeing problems with him when he was about 18 months. We saw that he had an abnormal amount of defiance. He is ten now and the problems have only gotten worse. He has been hospitalized about four times but it seems he's just there a week to be stabilized and then he's home and the same patterns continue. He is on Depakote, Tenex, Prozac and Abilify. In the last two weeks we have seen a MAJOR change for the better. This coincides with the start of the Prozac and the Abilify. I spoke to his teacher and she said he is much more able to calm himself down now. Of course, I just got a call from the school to go pick him up because he was running away from staff. I am at work so my husband is going. This incident reminds me that no matter how good things seem to be going at any given time, it doesn't always last. As far as diagnosis', he has been diagnosed with ADHD, Acute ODD, Obsessive Compulsive Disorder (OCD) and the latest is Pervasive Developmental Disorder (PDD). When he was hospitalized at six, they diagnosed him with a possible thought disorder. I am extremely worried for Tommy. He is the cutest, sweetest child and it seems so unfair to all of us that this is happening but we have to learn how to cope with it. One psychiatric also told us he has Aspergers. I get sooo nuts about all these diagnosis. Anyway, thanks for letting me share. I am going to make a real effort to get to know everyone here because I know there is strength in numbers.
  2. InsaneCdn

    InsaneCdn Well-Known Member

    Well, this is just my take on things, but...

    With that broad a range of dxes and possible dxes... which ones really make sense to you, and which ones have interventions that are working? Toss the rest out, and go looking for more if necessary.

    For example:
    ADHD/ODD/Obsessive Compulsive Disorder (OCD)? maybe. Or, it actually could be Aspergers.
    The problem is... some of the interventions for ODD work directly against how Aspergers would be handled.
    At some level, you need to start experimenting with approaches to the problem and see what works, then pursue more medical evalidation of dxes based on what works.

    By the time you added Pervasive Developmental Disorder (PDD) to the list... and sensory issues... you won't even know yet what all else is going on.

    I don't know the history... who did these dxes? has he ever had a comprehensive evaluation?
  3. buddy

    buddy New Member

    Hi there. I am new, glad you are back. I go crazy with all those labels too. But I only tell people the umbrella ones. Now that you ahve the Pervasive Developmental Disorder (PDD)/Asperger's diagnosis it really can explain most of the other stuff. If people talk about symptoms, well yup, kids with Pervasive Developmental Disorder (PDD) seem very oppositional, have strange sounding thoughts, can be very adhd-like, can be SUPER obsessive, perseverative and compulsive...etc. I get that they have the checklist of symptoms to qualify for other diagnosis but in the end for me, I like to address the symptoms and the behaviors individually in our home plan and IEP, and have people keep the big picture in mind when it comes to the diagnosis/label. I wish there was an easy test to say what the bottom line is. wouldn't that be great? Poor little guy, you are right, he does't deserve it, no one does.

    Hope we hear more from you...(I hate those school calls, you will see it is my biggest ARRGGG right now) hugs, buddy


    I THOUGHT I was taking him for a comprehensive evaluation two years ago when I went to Duke (NC) but it turned out to be a developmental pediatrician who took him off Risperidone and things went NUTS and he wound up back in the hospital. I do have an appointment for him November 7 with a neuropsychologist. I was very excited about this until the psychiatric I saw with him last week (the one who gave us the Pervasive Developmental Disorder (PDD) diagnosis, basically acted like it was a waste of time). I'm still planning on going, however. I have never been successful in finding a place for him to get a comprehensive evaluation...does anyone know where I could go in NC?

    The diagnosis of ADHD, ODD, and Obsessive Compulsive Disorder (OCD) have been given by psychs he has seen and by me, of course...lol. The Aspergers was given by a psychologist who did some testing with him last year. The possible thought disorder came from his hospitalization when he was six and was the result of the Rorschact test, some Mood test and an interview with the psychologist. The whole thing upsets me so much...I feel like I'm always hitting dead ends and not getting him the help he really needs.
  5. keista

    keista New Member

    Hi and Welcome back!

    I find this HUGELY interesting since when my son, and Aspie, was 6-8 y/o, the way he expressed himself was very concerning to say the least. I don't know much about thought disorders, so can't say for sure if it's the same. Things he would say "My brain is making me do this" "My brain told my arm to do that" "My legs just made me run"

    Anyway, I'm glad someone is identifying Pervasive Developmental Disorder (PDD) or Asperger's in your son. Either of those can explain away or be co-morbid with the earlier dxes.

    Hope you stick around this time. :)
  6. keista

    keista New Member

    IF this psychologist had no familiarity with Asperger's, it makes perfect sense. I can totally see my son's responses at that age getting completely skewed.
  7. buddy

    buddy New Member

    me too, still can


    Thank you for the replies...I really appreciate it. My day seems to be going down-hill right now. We just opened a small store - Grandma's Attic - and for the second day in a row it's been VERY slow, which gets me down. Then, I just spoke to my husband, who is home, and just had to pick up difficult child from school because he did, in fact, leave the building. He's suspended for at least tomorrow and maybe longer. THEN I hear from difficult child that my brother, who is visiting from NY, told him he doesn't want to hang out with him because he got in trouble. It never ceases to amaze me that the people who should understand my difficult child the best and be most compassionate, are the people who wind up hurting him.
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    He MAY have a thought disorder. Thought disorders are the same as psychosis or delusion. We don't know enough about him to even take a stab at it. Does he ever talk about things that he thinks are real that are not real? Does he hear or see things that others don't (hallucinations?). Has he ever had a break with reality? These issues have nothing to do with Pervasive Developmental Disorder (PDD)/Aspergers. My son is on the spectrum with no mental health disorders.

    in my opinion you should keep that appointment with the neuropsychologist. The type of testing and evaluating that they do is in my opinion beyond any other level and can pin d own for you where and what the problems are, which is more important than the label. I've had a lifetime of psychiatric care myself and now I have this "differently wired" child. Of all the evaluators both of us have been to, I trust NeuroPsychs the most. That doesn't mean they are perfect, but they certainly don't miss anything...most testing is 6-10 hours (any shorter and I'd question how qualified the neuropsychologist is.).

    Having a laundry list of labels is confusing and to me if always meant, "We have no idea, so we'll say you have everything." Both me and my son have been wrongly diagnosed a lot. Sometimes we were diagnosed with no testing at all and little explanation that made any sense to me.

    I hope the neuropsychologist can shed a more clear light on what is going on with your son. That way you can leave knowing what you are dealing with, as far as assets and deficits, and can go about finding him professional help, school assistance, and community resources. The danger of the wrong diagnosis are heavy duty drugs that can be worse than the problem and cause longterm problems...and many times the child never needed those medications in the first place. In retrospect, (son is eighteen now) I would have been far more cautious about both labels and medications if I had to do it all over again. I am certain he has the right diagnosis now and he has greatly improved with the correct treatment. But we went through hello before we saw the neuropsychologist. It IS confusing and frustrating...hopefully you will get one answer when you ask, "What is wrong?" rather than alphabet soup.

    Use your mom gut too. I am a big believer in mom gut! And take good care of yourself too :)
  10. buddy

    buddy New Member

    how insensitive. I am so sorry for that. Can you talk to your brother and help him understand that punishment upon punishment does not help things. If he is a flight risk that is a huge liability for the school and they need to do an FBA to identify the issues and prevent that. If they only address it with a negative consequence the are not only being ineffective, but they are risking a problem for themselves. I have been on their end of things and I would be embarrased to tell a parent I let their kid get away AGAIN. Did you say if he is on an IEP? Even if not, if he has signs of special needs they need to address this.
  11. Liahona

    Liahona Guest

    I've had one dr bad mouth before, too. Mostly it was ego and insecurity talking instead of an opinion based on fact. I'd go and form my own opinion.


    He does not have hallucinations of any kind. I used to think (and still do) that it was kind of weird how much he would constantly talk when he was by himself but he's not talking to anyone else, just himself. As far as breaks with reality, I have always thought since he was like two, that he considers himself as equal to an adult. The school psychiatric told me that too. That's a big ODD red light. Anyway, a lot of his thinking is to me - off - more like a six year old than a ten year old, which alienates him from most kids his age. They're into sports and such, and he's still talking about Santa Claus and making Leprachaun traps. He has a 504 plan, but not an IEP because the school kept telling me that his academics were on grade level. However, I've heard from several people that he can still have an IEP.
  13. buddy

    buddy New Member

    I'm no ODD expert (other than having a super oppositional kid) but that is also a HUGE Autism Spectrum Disorders (ASD)/Asperger's red flag. They are even called little professors, they are very precocious, relate to adults more than kids. My son talks to himself lots from time to time. Other times shut down. He actually said he felt "fake" and "things are not real" and was treated for anxiety/depersonalization/derealization for years. Ended up it was a form of seizure he was having. Just to share alternatives for you. And yes, for sure, academics are not the only measure used for needing an IEP. It is old thinking and depends on the category....if a child ONLY has a specific learning disability, well then it would have to be interfering with academic achievement , but there is much more to school than grades and test scores and the law very clearly says it also includes social development (which includes in class behavior with teachers). Keep digging, you are on the right road here in my humble opinion.
  14. keista

    keista New Member

    Ditto. My thoughts exactly.

    No, academics is not the only reason to get an IEP, but the schools always try to sell you that BS. Mine wouldn't even set up a 504 for DD1 until it affected her academically. Even then, they were "hesitant", but since her teacher was already accommodating her, they conceded.

    The Pervasive Developmental Disorder (PDD) or Asperger's diagnosis will make it easier to get an IEP, and I highly recommend getting one in place before middle school. the social aspects of middle school can be a nightmare for any kid, but one on the spectrum and/or other issues it can be a real nightmare.


    I am TERRIFIED of Middle School. I am applying to some Charter schools and he was accepted to this partial hospitalization program but that's only short-term. I really don't think home-schooling would work for him. Or me...lol
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

  17. buddy

    buddy New Member

    You know, I was too. In fact I called the middle school teacher several times while he was in 5th grade, poor woman. And I have taught middle school! I love middle school kids but was scared to death with his behaviors that he would provoke someone into killing him. Administration issues notwithstanding, he has had the best experience of all of his years in school. I have had him in charter, Special Education only, secluded classroom, etc. For us a mainstream setting for a few social exposures (and I dont think we can really estimate how much he gets out of glasses like global studies in the mainstream, he cant test well there but he talks about what he hears so I know he is not there just to be with peers.) I have a friend whose son is bigger and so can hurt more, but he is much better off academically. He is doing great in an alternative school for kids with neurobiological disorders. They love him and it has been two years now after not being able to stay in a school for over 5 years! His mom brought a lawyer by the way and when they couldn't find an appropriate placement before this she was paid a salary for teaching him at home! The only one in the district and it was because her parents paid for a private lawyer.