We went to the neuropsychologist!

Discussion in 'General Parenting' started by agee, Jan 19, 2010.

  1. agee

    agee Guest

    And.....tada! They are saying difficult child has Pervasive Developmental Disorder (PDD).
    A mixture of stuff: hyperactivity, impulsivity, lack of focus; difficulty related to people/creatures; mood issues; and some large and small motor difficulties.
    All of which I told them, then they saw for themselves.
    They cannot say Fetal Alcohol Syndrome (FAS) (or Fetal Alcohol Effects (FAE)) because he has no physical markers and we have no proof of parental alcohol consumption. They told me they'd help us with-school stuff but it's a constant problem for families like ours and we'd do well to find somewhere private or a charter that specializes in kiddos like ours. Which is fine and dandy, but we live in the country so transportation to anywhere would be a 2-hour round trip.
    But they're going to work with us. We're going to have an ongoing discussion. And they treat lots of kids adopted from EE with similar issues. They basically said kids like him could end up with-mood disorders, stay ADHD, or other alphabet soup diagnosis., or he could end up just fine. Early help is key.
    (That's why we've gone to dr. after dr. since he was 3, dr.)
    He's going up on Risperdal and adding back in a stimulant. May try some other things in 2 weeks.
    So no rockets going off here, but at least I feel confident in future help. The P.A. who we talked to after the dr. joined me in my derision for sticker charts, which gave me confidence. And I only cried once for about 2 minutes. ;)
    p.s. when they asked me why I was there I said some moms on a message board told me to go. The power of Dr. Internet!
  2. Shari

    Shari IsItFridayYet?

    Great news. Its not the end of it all, but it at least gives you a road map to follow on the journey.

    And yeah...this place saved me and my kiddos for sure.
  3. TerryJ2

    TerryJ2 Well-Known Member

    Way To Go, Agee! Validation is great.
    I wish you had some educational resources closer to you.
  4. DaisyFace

    DaisyFace Love me...Love me not


    Sounds like you are finally on your way to getting the correct help. What a relief!!

  5. pepperidge

    pepperidge New Member

    good that you got some clarity or as much clarity as you can have with a kid that young. And very good that they have had experience with what you are dealing with. STicker charts are so not helpful for kids like ours....

    At some point you may want to ask whether Abilify might be a medication to consider in the future.

    And even if you are "stuck" with your current school system having some clarity on what you are dealing with and what to ask for in an IEP can be very helpful.

    Way to go, warrior mom!
  6. agee

    agee Guest

    Ummm....so I met with someone today who is an experienced warrior mama like you all and she told me that what difficult child and I did on Tuesday was not a neuropsychologist exam.
    So now I'm confused.
    We went to the office, meet with neuropsychiatrist and P.A., as well as an assistant, and gave a history. The dr. examined my son, asked some questions about behavior, watched my son write his name and walk across the room, then we went to a little room with a computer where my son took 3 tests (basically banged on the keyboard), came back to the exam room, talked some more, and then the P.A. gave us some medication tweaks.
    We are going back in a week and a half to discuss.
    Was this not a neuropsychologist exam? What is a neuropsychologist exam, then?
    That's what I asked for when I made the appointment.
    Feeling grrrr....
  7. Marguerite

    Marguerite Active Member

    surprise, surprise... [tongue firmly in cheek]

    It may not have been a formal neuropsychologist test, but they did a lot of the right things. I'm guessing they saw enough to give you the diagnosis. I would ask if there is going to be more detailed testing further down the track.

    What you asked for - you say you asked for a neuropsychologist assessment, but did you also say, "I want to know what is wrong with my son."? Because that is what they have given you.

    How much did they charge? How long were you there? How long was the computer-based test that he did? There may have been more in that, than you realise.

    Plus you are going back in a week to discuss it. I would ask then, for a breakdown on exactly what it was they did to assess him (they are probably going to tell you this anyway) and also where you go form here, in determining his strengths and weaknesses. Ask to see a copy of the psychometric testing that he did, especially looking at the sub-scores, so you can get an idea of his strengths and weaknesses; where he is gifted and where he needs remedial help.

    Psychometric testing (formerly known as IQ testing) can give a lot of useful detail. But the testing can be at various depths. If you think of a swimming pool (or maybe a community swimming pool centre) you have multiple levels depending on a person's age and swimming ability. And how long they have to spend training.
    First you have the baby pool, little more than an ankle-deep (at most knee-deep) wading pool.
    Then you have the next pool where it might come up to your waist, but it still a good place for younger kids to actually try swimming a few strokes.
    Next you have the olympic-sized pool with lap lanes. Experienced swimmers dive off the deep end to practice for their races.
    Finally you have the really specialised diving pool, with the high diving boards at one end.

    It sounds to me like you have been in the wading pool here.
    Now, it is a start. Whatever testing was done, can be added to. It could be tat the testing that was done, was similar to the level that a lot of schools can/will do.

    We went down this road also. The school did some fairly basic testing, but it was still enough to back up the diagnosis.
    We then took the school's results to someone else, who looked at it, knew what not to bother about with further testing, and who then focussed on specific areas of interest, in further testing. This saved us a fair bit of money as well as a lot of time and effort.

    Sometimes good neuropsychologist testing can take place over multiple practitioners and stretches of time. I think it is preferable to do it all in the same place with the same people, in dedicated longer sessions. Some kids need it broken up; some need it all done together. The younger the kid, the more they may need to break it up, to avoid the kid refusing.
    difficult child 1 did that - while being tested (about age 7), he simply said, "I don't want to answer any more questions. I want to talk about birds instead."
    [and that bloke didn't see Asperger's screaming at him? I still marvel at that]

    Give these people a bit more rope. They've given you something to go on with. As long as they didn't charge the same amount that people pay for all-day sessions of intensive testing, then you have (so far) gotten what you paid for. And they may be continuing the process.

    But once they can see enough to say, "Well so far we have seen enough to tell you, your child clearly fits into this category. So we can stop looking in other areas, this is clear-cut," then they are trying to give you some useful answers.

    Now, they said he definitely has Pervasive Developmental Disorder (PDD). But it needs to be more defined tan this. It does sound to me like the process with them is not complete. This may simply be how they work - progress reports as and when things become obvious to them, but they still keep working on things until they can be more specific.

    As for what you do from here - we went through a lot of early diagnostics with the diagnosticians saying to us, "Now you know what it is, there will be elp available. Go to this doctor, that organisaiton, and tey will look after you from here."

    The reality is - it doesn't work like tat. The doctors and organisations we were referred to, were overloaded and at best could only be of peripheral use. We had to find out own way. Yes, it opened doors to help at school. But we had to find out own way to other out of school groups. I actually had to start up a couple of things myself - you CAN do this, you know. At a social skills class for autistic teens organised through a charity, us parents were sitting drinking coffee waiting for our kids, when we decided to start a social group, all going out together as families, taking our kids to various places. We went on picnics and bowling. It was wonderful to see the friendships developing, but it also helped the parents. And we did this ourselves.

    Much of what we have done for difficult child 3, we have done ourselves from home. We developed our own therapies. We found our own therapists then adapted what they were doing into our everyday life.

    Through our social skills group we developed other networks and made more contacts. We shared information on what worked and what didn't. Some kids had money thrown at them and went to expensive private tutors. Some had poor parents and have had to make things work within the public system. Seeing the various outcomes of these kids tells us a lot about what is worth the money and what is not.

    I hope this helps. Give this mob a bit more time to give you what you asked for. I don't think they're done yet.

    We did go through similar things ourselves - I rang around Sydney trying to find people who could help. One doctor in particular told me he could help us get a diagnosis as well as some ongoing therapy. He had an opening that afternoon so I drove across the city (two hours' drive) almost in tears of relief. He ushered us all in (me and four kids), listened to the story (which I had also told him over the phone) and I waited to hear his words of wisdom. He got up, walked round the desk, opened the door to let us out and said, "You do have some concerns here. I hope you find what you need. Do let us know how you get on."

    We hit about half a dozen of these situations before we finally found the answers. But in a way, they were all stepping stones. And in the end - once we knew, we got on with doing it ourselves. And the kids are doing great! You could spend a lot of money and not do any better.

  8. agee

    agee Guest

    They didn't do any "testing," as far as I know. We were there about 2.5 hours and there was a lot of me talking, the physical exam, the computer exam, which I watched him do and he ignored the instructions and banged on the keyboard the whole time. It lasted about 10 minutes. That was it. That's what I'm puzzled about.
    And I called them today, as instructed, and no one called me back.
    I guess I had high expectations but the reality was - meh. No revelations. Plus now I don't think they did what I asked - which was a "neuropsychologist evaluation." But maybe that means different things to different people.
  9. agee

    agee Guest

    Oh, and they charged $1000, which included an EKG.
  10. SRL

    SRL Active Member

    Sorry to hear that you've been looking for answers since age 3. Unfortunately we hear it all the time with Pervasive Developmental Disorder (PDD)--unless it's classical Autism it often slips under the radar.

    When parents here refer to "neuropsychologist" evaluations they are meaning a neuropsychologist, who is a psychologist with extra training and clinical experience in diagnosing neurological conditions. Typically they do a parent history, see the patient, and do various tests (hours and tests depending on need and age of the child). Your appointment was with a neuropsychiatrist, who is a medical doctor that probably specialized in psychiatry first, and then went on for additional training in behavioral neurology. That's why he did "doctor" things like examine your son and could direct the PA about medications.

    I think you're off to a good start here. You have someone who will work closely with you on medications. You now have an idea of the general areas in which your son's issues lie (Pervasive Developmental Disorder (PDD), hyperactivity, impulsivity, etc) so you can start doing your research and find out strategies that tend to work best with kids with Pervasive Developmental Disorder (PDD). You have a diagnosis and hopefully a report with recommendations to use with the school. Consider this a starting point--read about other conditions that Pervasive Developmental Disorder (PDD) kids often struggle with such as speech issues, auditory processing or language processing problems, sensory processing problems and executive function problems. You may decide that in the near future you want to pursue further evaluation, either with a neuropsychologist or some of the other specialty areas.
  11. SRL

    SRL Active Member

  12. Marguerite

    Marguerite Active Member

    Thanks, SRL. When it comes down to "neuropsychologist" vs "neuropsychiatrist" I'm a bit in the dark since it is a little different here, we're starting to do things the US way in some areas.

    But basically you said what I was trying to - even if what they did was not what you asked for, Agee, it is still a very good start and could be leading exactly where you asked anyway. This could simply be a staging post along the way.

    $1000 for the number of people you had involved plus the level of specialisation plus the time involved - ask around but it could well be fairly standard.

    You WILL need to use professionals of varying kinds over the years, but in the meantime, and each time, you will learn what you can do for him for yourself, to help him.

    What worked for us - think from his point of view. Listen to him. Without simply letting him run wild, where you can and where it is 'no skin off your nose' give him what he wants and then watch, and take notes. For example when my boys asked for the big cardboard box the new washing machine came in, I gave it to them, and watched. They put cushions in it. They put a blanket in it. They cut a window in it so they could watch TV through the window. They had the box in the living room, them inside, all top flaps closed, only the little window open. They had threaded the computer game controllers through the window and were playing computer games on the TV outside the box while they were squashed together inside the box, on cushions snuggled under the blanket. It didn't bother me to let them do this and I found it very interesting. I knew the box would fall apart sooner rather than later but in the meantime, the boys had fun and were also exploring interesting aspects of their own Sensory Integration Disorder (SID). I then talked to them about Temple Grandin and the personal "cattle crush" machine or squeeze machine she made for herself, where she was able to control the strength of the squeeze for herself. That was what she wanted - to be held, but on her terms and when she wanted. She says she finds it calms her down, the same way being in a crush seems to calm cattle.

    There can be surprising things you can discover for yourself and which he can also discover, especially once he realises it's OK and not 'sick' to explore his own feelings and interests like this.

    You have begun a long, involved journey which is a different path to the one you expected 7 years ago, but has its own rewards.