Who finally narrowed down your child's diagnosis?

Discussion in 'General Parenting' started by allhaileris, Dec 10, 2008.

  1. allhaileris

    allhaileris Crumbling Family Rock

    I called our regional center to get an appointment for a complete evaluation for Eris for Autism Spectrum Disorders (ASD)-Pervasive Developmental Disorder (PDD) based off of our observances, new issues in school, and feedback from various forum parents on this and another board that she fits many of the signs. So right now I'm waiting for the call back to make the appointment, which will be 4+ months away. There are no developmental pediatricians in our county, but I'll look for somebody further out once we get this done.

    On Monday we went in for a pre-meeting for her IEP review. It was to fill out forms, give a quick rundown of what our feelings are on where she's at. The school psycologist said he didn't think she has autism, but he agreed she has tendencies and that she's both motor skilled and developmentally delayed.

    I was talking online to another mom who has a son with autism (high functioning) and she said she's heard most of the info they use is stuff they get from the parent and that the diagnosis almost always comes from that info. I said most people would never even think Eris has an issue unless they're around her, and unless they're around a ton, they don't see the autism traits. She said it was the same for her son, he's congintivaly fine, and to most people he seems normal.

    I'm all for her being better than I fear, but I also fear she really does have more issues than they think and she'll fall behind in school more and more each year because nobody but us sees these issues.

    I'm wondering how often it is that the parents really have figured out what is going on way before the docs (especially with the internet around now, not like 20 years ago)? How often do they come out with a diagnosis (that's correct) that we as parents don't expect at all?
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    A private neuropsychologist.
    There is no way I'd personally trust the school district and psychiatrists kept saying he had bipolar, even though he really isn't moody. In fact, most of the time he seems very contented and calm. It didn't make any sense to hub and I and he was put on heavy duty medications. I really like the way NeuroPsychs seem to have their feelers out for every disorder rather than focusing on one OR thinking "what medications can I give?" I always recommend neuropsychologist evaluations. They are 6-10 hours and include a lot of testing. Nobody else does that. They give you very intensive reports too. I would never trust a diagnosis that came from somebody who just listened to me give symptoms and didn't interact intensively and for long periods of time with my son. in my opinion that's not responsible. Yes, Autism Spectrum Disorders (ASD) kids can seem very social, but they are socially inappropriate. They are also usually NOT mentally slow, although sometimes they can't apply the things they learn in school.
  3. TerryJ2

    TerryJ2 Well-Known Member

    My s-i-l figured it out yrs ago and I took my son to a neuropsychologist, which was a total waste of 15 min.
    Yrs later, I was convinced she was right (with-a lot of help from this bb) and took my son in for testing several places.
    He may still be a touch bipolar, or just have anxiety, but the major factor is Asperger's.
    The teachers would not have figured it out. The principal said that judging from his latest round of testing, there is some Learning Disability (LD) going on, but she would never have put a name on it.
    Don't know if that helps at all ...
  4. gcvmom

    gcvmom Here we go again!

    If I remember right, we live in the same county and there isxa developmental pediatrician who shares an office with a pediatrician Neuro in Laguna Niguel. PM me if you want the number.

    My difficult child 2 was pegged as possible Early Onset Bi-Polar (EOBP) by our pediatrician psychiatrist. But he won't commit that to writing until difficult child is out of puberty. He diagnosis'd his ADHD when he was 4 and has been watching him as things have evolved over the years. The neuropsychologist we saw last Spring essentially confirmed things and clarified just where difficult child 2's deficits were, which was especially helpful in getting IEP accommodations and services.
  5. klmno

    klmno Active Member

    We don't have it as a definite answer- but we have it narrowed down. In our case it was two (three if you want to count the psychiatrist at the psychiatric hospital) child/adolescent psychiatrists. I tend to think that the accuracy of the diagnosis depends a lot on the nature of the problem (ie- if it's a psychiatric disorder/chemical imbalance), a good psychiatrist might realize that first. If it is purely psychological, a good psychiatric., etc. Although, difficult child has a mood disorder and psychiatrists did better at nailing that down and simplifying for me, I also have suffered from anxiety and depression and I wouldn't give you a dime for the one psychiatrist I saw for myself.
  6. smallworld

    smallworld Moderator

    My kids have been diagnosed by child psychiatrists because they have mood disorders. But all three have also undergone neuropsychological testing because their psychiatrists wanted to make sure they didn't miss any co-morbid issues.
  7. Sheila

    Sheila Moderator

    I knew long before the pros that my son was on the spectrum.
  8. Jena

    Jena New Member

    We had several evaluations done, yet it was once i began here that the answers started to come, because everyone advised me to get a neuropsychologist evaluation and that gave alot of insight into my daughter with-o a doubt.

    narrowed it done, yes. she has severe anxiety disorder, Obsessive Compulsive Disorder (OCD), and adhd, and major depressive disorder (diagnosis last year) which we now feel and her doctor's that it is probably bipolar we are dealing with. Which certainly does explain the sleepless nights and the bouncy jump behaviors.
  9. maril

    maril New Member

    Now, there are some good psychiatrists! I wish I had had more proactive professionals involved with my son, realizing this after coming to the conclusion that the possibility of a wrong diagnosis or a coexisting one might exist.

    MidwestMom's advice about neuropsychologists is encouraging.
  10. lillians

    lillians lillians

    we knew from the start , as bio told doctors at birth she was high,, and he tested positive for cocaine, no 2 was tested as the doctors knew of bios state,, she had an engorged navel and was severly delayed, then constantly monitored by child developement team,, and health nurse , then sent on to a doctor at a childrens hospital, and another doctor at a diagnostic center in bc, then on to the neuro at childrens hospital,,daughter tested mre easily then older son, as tourettes takes at least one year to be observed by all involved with him and all individual reports, to say ok his tics are real,,,,
    Lasted edited by : Dec 11, 2008
  11. We had a dawning awareness of difficult child's problems over the years - they were just so obvious. We reached out for assistance to the schools - no help, to a private psychologist - no help, many years of therapy with a private therapist - no help.

    We finally got a neuropsy evaluation and the correct diagnosis was just as clear as it could be. All of the signs were there. If only we had done that in the very beginning - it would have saved us lots of wasted time. I highly recommend having one done!
  12. Nancy423

    Nancy423 do I have to be the mom?

    We knew something was up when difficult child was around 2. We got some diagnosis's at age 4-6 but we're still working on the rest. It took us about 4 psychiatrists, 3 psychiatric's, and 2 therapist/counselors to get this far. The psychiatrists and neuro pushed ADHD medications but she's certainly not textbook so I don't believe it. (Plus, stims never worked)

    It's almost official that the SD is paying for her to see a neuropsychologist and I'm hoping the rest (or even something) comes out of it.
  13. Lothlorien

    Lothlorien Active Member Staff Member

    This year, we were at our breaking point. We called a state-funded service that sends a psychologist to the home. I thought "this ought to be interesting"....I honestly thought we were going to get some young, fresh-out-of-college, inexperienced social worker. What we got was this amazing woman who has worked at the local children's psychiatric hospital and actually trained with Ross Greene. She pinpointed Missy diagnosis from the first day she spoke with us. She came once a week for six weeks. She was here for over two hours with us, each time. Missy's neurodevelpmental doctor still hasn't changed his official diagnosis of adjustment disorder, mood disorder and adhd as a differential, which is a crock of you-know-what. We tried the stims, just made her manic. Abilify helped, but fizzled out. Risperdal and the Trileptal is the only combo that has "normed" her out.

    That particular psychologist recommended a psychiatrist, whom I will be making an appointment with in January. I would rather work with two professionals that will work together. The neurodev doctor did nothing but put this woman down, when she was the only person that actually made suggestions and gave me pointers to work and help Missy. There is no point in arguing with arrogance.
  14. lillians

    lillians lillians

    how great is that,, we also had a phsycologist come to our home for 8 weeks to help and from there he reccommended much
  15. allhaileris

    allhaileris Crumbling Family Rock

    Thanks all. I hate to have to go through months (or more) of different docs and testing and want to just get it done with! I *know* she needs to see a neuropsychologist but can't afford it right now, assuming insurance will only cover part of it. I guess if I can find one, I'll have to figure that out.
  16. Lothlorien

    Lothlorien Active Member Staff Member

  17. smallworld

    smallworld Moderator

    Schools really aren't equipped to diagnose complicated childhood disorders like autistic spectrum disorders and mood disorders.
  18. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    We had no luck with schools either. They were not very good for us. And I personally wouldn't want to see any neuropsychologist that the school recommended. They do have an agenda--spend as little $$$ on your kid as possible so to me anything connected to the SD is tainted.
    I knew my son was on the spectrum when we adopted him at two. Only took nine years for the professionals to agree. They minced around it and called it everything BUT Autism Spectrum Disorders (ASD), which made it harder for us to fight for services.
  19. smallworld

    smallworld Moderator

    Schools don't generally employ neuropsychologists; they employ school psychologists who at least in my SD don't have PhDs but rather have medications. They just don't have the qualifications to diagnosis our kids.