Where to Turn Now?

Discussion in 'General Parenting' started by jal, Nov 24, 2008.

  1. jal

    jal Member

    I am hoping to get feedback regarding which direction I should persue? Some back ground: Ggf has been diagnosis'd ADHD and Bipolar. Stims do not work with him at all. He just started a therapeutic school where they in conjunction with our in home services see possible Pervasive Developmental Disorder (PDD)/high functioning autism. At psychiatrist meeting psychiatrist says there is no way difficult child is on the spectrum (I posted this in another thread where I got a lot of great feedback). He also wanted difficult child to try the Daytrana patch (doesn't help, doesn't work). In home services will be pushing for a 2nd neuropsychologist evaluation. My question is where do I go with this? What specialists should I be making appointment's with? Should I be looking for a developmental pediatrician, a pediatric psychologist or another psychiatrist? Should I wait until after another neuropsychologist evaluation - can it be picked up/ruled out there? For the first time in the 3 yrs since we began all this testing and dr's and etc. I don't know where I should go. I contacted a highly respected clinic today and they want $5500 to do an evaluation. They don't take insurance and I don't have that sitting around right now.

  2. Shari

    Shari IsItFridayYet?

    I was largely in the same position - the MH team saw Autism Spectrum Disorders (ASD), the DevPeds didn't. And I couldn't get them together (still can't). MH wanted more therapy interventions, yet DevPed wouldn't allow them. DevPed decided another neuropsyche evaluation was in order, and I agreed to it, provided they test for things other than Autism Spectrum Disorders (ASD), and they talk to MH before the testing. They ended up doing a second neuropsyche evaluation without meeting either condition, so I really felt it was pointless. It was a waste of my time and money, in my humble opinion.
    So, I have been looking into taking difficult child for a complete new evaluation in Iowa City, Kansas City, or St Louis. I'm working on trying to find a whole new set of eyes to look at this. I am also debating writing a letter and sending it to as many clinics as I can come up with, to see if it will ring any bells with anyone (this has actually worked for me once before).
    In the meantime, I have been grasping at straws and I've taken difficult child to a chiro/holistic health specialist, and to my allergist/immunologist, who I think may be on to something, but we haven't pin-pointed anything yet. But he has discovered some marked sleep disturbances.
    Wish I had a better answer for you, cause we're in the same boat.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    A neuropsychologist should be enough, but I recommend a private one over one hired by the county or school. They just aren't as good...
  4. SRL

    SRL Active Member

    I would contact the nearest chapter of the Autism Society and chat with them about where to go for an evaluation in your area.

  5. smallworld

    smallworld Moderator

    You might want to call your local Autism Society and see who they would recommend to rule in or out Autism Spectrum Disorders (ASD). You might also want to check into children's or university teaching hospitals to see if they have Autism Clinics that evaluate. I think you mentioned you had been to Yale (am I remembering correctly?), but you might also want to consider Hartford Hospital.

    Good luck. I know this is frustrating.
  6. jal

    jal Member

    I have found a Dr who specialized in autsim and devlopmental disorders. The first one I tried to get into has a wait until Aug 09. I am able to get in here in Jan. He takes 3 appointments. I will start with this while voluntary works on the neuropsychologist. At least I will have another opinion from someone who specializes in the field. Thanks Smallworld for the recommendation. I started with that and moved to the children's medical center. I feel a bit better.
  7. Ropefree

    Ropefree Banned

    What i do for my family:Research the options as thoroughly as I can starting from what are the differances in the proffesional training in these specialties.
    I feel that part of the relationship for my family member or friend is learning to appreciate the differance between who can help and how can they help.
    Since these things are not going to go away it is part of the parents role to intergrat our children into the options and to feel our way through the maze with their hand held with our love.
    The knowledge we build up surrounding our childrens needs, the records, our notebooks, the thinking that guides us is a huge part of when and if the proffesionals who are serving these practices move forward.
    The diagnostic tests themselves are helpful tools. As parents we begin to have as
    much understanding as we can what is being detected in them.
    Then there are the behavoral supports as well. Creating the environment rich with the oppertunities for our children to express their thinking so we understand from them how they are making sence and meaning is our only gauge for detecting where they are in their own hearts and minds and thereafter what we may bring to them to broaden their grasp on this dynamic condition of life.
    It is complex.
    "it doesn't work" been there done that is a vital info piece. The pathways and what those treatments do are not applicable. I hate the test to check meathod, myself. One day the brain will be more precisely understood. One day how we check if something works will be less havoc inducing than having the reaction full blown to
    check that box.
    And we are compeled to learn about and make choices and we have to take the opion of someone...we have to find the people who are deeply committed and can
    give us the facts.
    For me it is I have to DO something...I am obligated to make the best choice.
    What are they, who does them and how much do I need to know to decide well?
    Call them. It is alot of money and busness people will talk up a storm if the conversation ultimately leads to their wallet. So go on there consumer bee...find that honey that works for your baby. Take your time.