Our visit at Tufts with ds-6 Elijah

Discussion in 'General Parenting' started by jcox, Jan 16, 2009.

  1. jcox

    jcox New Member

    :DI was very impressed with Tufts. They did read the paperwork that I mailed them prior to the appoinment. He met with three doctors who work as a team. Hey three heads are better than one I think...Two of them asked me questions about Elijah, while the other doctor observed Elijah and also asked a couple questions.

    They asked me a series of questions pertaining to Elijah¬Ęs background, sensory issues, pregnancy, birth, developmental history, etc.

    Diagnoses: They told me that thier preliminary diagnoses are that Elijah has Pervasive Developmental Disorder (PDD) (Pervasive Development Disorder) which is part of the Autism spectrum, but higher functioning. I always wondered about this, but none of his previous psychiatrists even suggested it. From all I read about it, I always wondered. They also say he has moderate to severe ADHD as well as a mood disorder that they will not specify at this time.

    They mentioned to me that his educational needs are obviously not being met. That he needs social skills groups, sensory integration through PT, and speech therapy. He needs high structure.

    I asked the doctor the criteria for hospitalization. He told me that Elijah does not need to be hospitalized just because he is sexually touching people. He told me that if he attacks somebody and seems uncontrollable, then bring him to the ER and have them transfer him to Tufts. That made me happy because they are supposed to be one of the best inpatient child psychiatric units in the state and it is usually hard to get in there. He told me that they would have a bed for him because he is a patient there. I would actually be comfortable sending him there from what I see of the doctors. He told me to tell them at the ER his psychiatric doctors are at Tufts and to call them. He said if that becomes necessary then they can do all the workups he needs while he is admitted. At this time he told me he does not believe that he needs to be hospitalized, but if he does what is stated above then he does.

    I am so happy that it seems like doctor's are finally having an understanding of him, and doing all they can to get the correct diagnoses. They made us an appointment with genetics to do a complete genetic work up to rule out any type of diseases etc. After they get the results from that they are sending him for an MRI of his brain, an EKG, and possibly more testing. They also referred him to the Center for Children with Special Needs at Tufts who do complete "whole child" assesments in many areas. They specialize in ADHD, mood disorders, and Autism Spectrum Disorders as well as other things.

    "The professional staff of the CCSN includes developmental-behavioral pediatricians, neuropsychologists, educational specialists, speech-language pathologists, occupational therapists, physical therapists and social workers. Tufts Medical Center is a teaching hospital and trainees are often part of the evaluation team."

    I was very impressed with Tufts. They would not change any medications yet, or even fill his prescriptions though because they said for me to see his current psychiatrist for another month while they do atleast the genetics testing, and then they will take on his medication management and most likely make some changes. They want to get to know him better first and finish his intake assessment that takes a few visits.

    Well thanks again to all who listen and continue to offer support.

  2. klmno

    klmno Active Member

    I am so happy for you!! You did an amazing thing for your son and this could really be what saves him from a childhood that pigeon-holed him with a wrong label and inadequate treatment and supports!! I think sometimes ADHD is really a diagnosis of symptoms of other problems and if people see adhd and never look further, so many other things can be overlooked. You did a great job for your son!!
  3. klmno

    klmno Active Member

    Oh- Can you get all that in writing from them? Can I go with you when the school reads it? (JK)
  4. klmno

    klmno Active Member

    Also, if you've ever wanted to sue somebody, I personally think you have mmore than enough reason and grounds to sue his school system.
  5. gcvmom

    gcvmom Here we go again!

    WOW! Sounds like an awesome interview and you are well on your way to getting your kiddo the help he needs. That has to be a great feeling -- Way To Go mom! :D
  6. TerryJ2

    TerryJ2 Well-Known Member

    Oh, Janice, that's wonderful! You really made a lot of progress.

    I hope you get it all in writing.

    There's more work to be done, but you are on a roll. Congratulations. They sound awesome.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Oh, Janice, finally somebody is helping your precious little one. It sounds like they rock. If you want to do something to help, look up treatment for Pervasive Developmental Disorder (PDD) (my son has that) and make sure he gets the interventions in school. (((Hugs))) I'm so happy for you and for little Elijah!
  8. Ropefree

    Ropefree Banned

    Jcox: REading this brought gave me goose bumpes and tears to my eyes! What wonderful news! A full work up and MRI and a nice neat llist of appropriate indiivigual educational needs.
    Try to remember as you are discussing these with his school psycologist to ask if other children in the district are needing these special needs met and if they district is currently staffed to provide the needs of all at this time. ANd whom do you contact if not.
    Now you have an excellant treating provider. i am doing my hula hoop dance!
    Better days are coming...watch.
    COngratulations! Woo!
  9. DDD

    DDD Well-Known Member

    Great post! I can feel your muscles relax as I read from start to finish. How wonderful that you have excellent help available. Congrats! DDD
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Fantastic news! I am so glad for you and your little Elijah. I hope things go better with the school now. Hugs.
  11. susiestar

    susiestar Roll With It

    Sounds like AMAZING progress - and someone finally listened to you! A Pervasive Developmental Disorder (PDD) diagnosis opens a LOT of doors right now.

    I will caution you with medications that from everything I have read, with a mood disorder on board, mood stabilizers should be trialed first, with-o any other medications on board. then, once moods are stable things like ADHD can be addressed. But ADHD medications, as well as many other medications including some cold medications, can send our kids cycling. Antidepressants can do this too. These are recommendations from the American Acadamy of Child and Adolescent Psychiatrists, and somewhere there is a link to them.

    this is also in the book, The Bipolar Child, which I STRONGLY recommend you read. Even though they say "Mood Disorder" a lot of the info in The Bipolar Child will be helpful, I think.

    But WOW, today was a victory for you! Someone who listens, and "gets it", esp a team of docs, that is a great relief.

    Oh, have them do a sleep deprived EEG (test of brain waves) so that you can get an idea of if there is any seizure activity - it can look like many other things and can really impact behavior.

    Gentle Hugs, and this weekend you get to rest on your victory!