update to dev pediatrician - proof?

Discussion in 'General Parenting' started by Shari, Mar 4, 2008.

  1. Shari

    Shari IsItFridayYet?

    DevPed wanted an update after the psychiatric appointment last week. As suggested, I'm going to ask psychiatric to send an update to devped, but I came across some info today... I also feel devped maybe isn't "looking" too much anymore for answers, and we need to get on the same page again. Here's what mom and I came up with. What do you think?

    To: DevPed

    Gfgl saw NewPsychr on February 28.

    I felt that it was an interesting and productive visit.

    She spent close to an hour with difficult child, with lots of interaction with him. She had records from OldPsych, as well as information from his BehaviorTherapist, who has been working with him for a couple of years now, ranging in frequency from weekly to the current schedule of every 2-3 weeks. Though difficult child is generally "good" for BehaviorTherpist, she has seen the full range of his behaviors, even having to leave appointments because of his aggression and unsafe behavior. BehaviorTherapist has concerns that we are missing what is going on with this little boy.

    NewPsych had a doll and Legos in her room. difficult child instantly went to the Legos and played intently with them for the duration. Intermittently, he banged the doll around.

    NewPsych asked him questions to gain insight about his relationship with his sister, and his relationship with me, and I'm sure about a lot more that I wasn't even aware of.

    I'm not sure what she got out of the questions about his sister, but she noted that his responses about his mom did not indicate a typical attachment to me. She noted hand flapping and lack of eye contact, and other behaviors that she felt concurred with OldPsych's original diagnosis of Pervasive Developmental Disorder (PDD)-not otherwise specified (which I was not aware had ever been made). She also did not see a heavy indication of ADHD, as during the course of the hour, difficult child really only lost track of their conversation one time, even though he appeared to be focused intently on the Legos. Hyperactivity and impulsivity were definitely noted, but not an attention problem. She felt Pervasive Developmental Disorder (PDD) was accurate, and BiPolar (BP)-not otherwise specified worth considering.

    I had found 2 videos of difficult child that I had taken on my cell phone, and after NewPsych had given me her impressions, she viewed the videos. One was of difficult child eating dinner with his family, the other was during a tantrum. She said both also concur with the original Pervasive Developmental Disorder (PDD) diagnosis.

    She suggested getting him back into Occupational Therapist (OT) full time, as well as asking you about possible access to additional therapies in the autism center. Otherwise, she felt we should continue with behavior therapy, the medications, and monitoring his progress. BehaviorTherpist also has suggested he could benefit from language therapy. NewPsych noted that he’s one of the kids that falls enough in the gray area that he is “falling thru the cracks”.

    I spoke with NewPsych again today and she had further looked into OldPsych's notes, and found where, in December of 2006, OldPsych had completely changed her original diagnoses.

    At the initial time that OldPsych saw difficult child in November of 2006, she diagnosed him Pervasive Developmental Disorder (PDD)-not otherwise specified provisional, and rule out BiPolar (BP) and ADHD (I was unaware of these diagnoses until just today). difficult child then saw Neurologist on 12/07/06. difficult child was very anxious during the appointment, barricaded himself behind the exam table, and threw things at Neuro for the duration, refusing to come out. Please note that Neuro has seen difficult child since he was 6 months old and never seen a display such as this, however, within seconds, Neuro was convinced that Ritalin would change him in 24 hours, "he's just ADHD, and nothing more". This was also during the time that you and the NursePractioner that worked under you at the time were still hearing evidence of seizures, sending difficult child to Neuro, and Neuro was completely dismissing me without hearing me out. I finally asked your NursePractitioner to attend an appointment with Neuro to get it worked out. After NursePractitioner spoke to Neuro and voiced his concerns (which I believe was later in March or April of 2007), Neuro then agreed there was likely a seizure disorder. I was not comfortable with the situation, so I sought a second opinion by a pediatric neurologist from St Louis. He confirmed the diagnosis.

    Anyway, I digress...back to December 2006. After the appointment with Neuro, Neuro called OldPsych prior to the follow-up with OldPsych on 12/12/06, which was the appointment that I felt was a waste of our time. She simply parroted Neuro from 5 days prior, even so much as having changed her diagnoses of difficult child to ADHD and ODD (again, I was not aware of this until today). ODD wasn't even on her list of things to rule out from her previous evaluation!

    By Christmas 2006, some 10 days later, difficult child was literally attacking us. He would get skillets out of the cupboard and come up behind us and take a swing. We had to lock up or remove anything even remotely heavy or dangerous, as he was he!! bent (sorry) on hurting us. We were existing in fear daily, and I made repeated calls to OldPsych, who was in the office when I was placing the calls, but she did not answer us until well into January. We needed HELP. Badly. That is when we ceased to utilize OldPsych and asked you to take the lead on the medications (we feel we need someone accessible in an emergency, and obviously, she was not).

    Anyway, bringing us back to current. NewPsych was confused when I spoke with her today about OldPsych's change of diagnoses, and I had to spend some time reviewing notes before I recalled all that had taken place at that time, so I have not relayed this to NewPsych yet.

    The diagnoses NewPsych made based on her evaluations were impulsivity disorder-not otherwise specified, Pervasive Developmental Disorder (PDD)-not otherwise specified, and BiPolar (BP)-not otherwise specified and disordered attachment considerations.

    Now here's where I'm at. When I found the videos I had forgot about having, I realized the level of chaos that I have just resigned to living with and accepting as "normal". At difficult child's appointment with you in February, prior to finding these videos, I had said things were "better" and you had indicated that I hadn't emailed in some time. Things are better, but they are not good. When he digressed in December again this year, I didn't feel the need to email you - we've found no solution in the past - so we just braced ourselves for the ensuing downward spiral, prepared for the violence to begin again, and hoped it would be short-lived. I was personally in some sort of funk where I had pretty much given up on having some sort of normalcy - I was accepting of having my child attack me and scream and obsess about presents or any other random topic (like there's no ice cream store in our town) for hours or days on end. I had resigned myself to the fact that this was the way difficult child is and there really isn't much more that will help. Its "just ADHD".

    The videos were my personal wake-up call. I showed them to several people, images of what difficult child's daily life is like, and is STILL like, and I realized that, on some level, I had given up. But by seeing them, questioning myself, and interacting with others about it again, I realize, this still is far from "typical" behavior. Things are better than they were a year ago, but we still have a long ways to go. My goal for difficult child is to be a functional, productive member of society. We are making some progress, but, like BehaviorTherapist, I feel we still don’t know what we are dealing with. I’m not doing him any favors by "accepting" that this is as good as it gets. I want a team that will work together and with him to start moving forward again and find answers to help achieve this goal.

    What do we need to do next to move forward from here?
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    in my opinion, make sure he gets a lot of help for the Pervasive Developmental Disorder (PDD)-not otherwise specified. If you want him to someday be a fairly functional member of society THIS is what needs addressing the most. His other tag-on diagnosis. could and probably are all a part of the Pervasive Developmental Disorder (PDD). Pervasive Developmental Disorder (PDD) is more than Occupational Therapist (OT) and behavioral therapy (traditional) isn't all that effective with Pervasive Developmental Disorder (PDD) kids. I think you should contact an autism specialist for ideas--there are a lot of school and community interventions that can really help him (and really helped our son). But you have to look for them and take advantage. The school won't help you, and I truly don't feel a behavioral therapist will help. Pervasive Developmental Disorder (PDD) kids are wired differently--they don't respond to regular behavioral interventions in the "normal" way. If you ignore the Pervasive Developmental Disorder (PDD) and go for the behavioral stuff, in my opinion, you will be shortchanging your child. Our son still gets a little help at school, but it basically mainstreamed. He is still "quirky" but is doing so well that we are thinking of gearing him toward a tech degree of some sort. He may be able to live alone with just a little help as an adult. That is a far cry from where he started out. Perhaps a neuropsychologist could guide you better. Good luck!
  3. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I think you wrote a descriptive letter that gives a great look into what has been going on the last 18 months with various docs. His "new" diagnosis should qualify him for some good services. Begin to research, on your own, what programs are available for autism. With the current rise in awareness, you should find some good support out there. I'm not sure what state you live in, but here are a couple links to get you started.

    neurodiversity.com | autism support & services : midwest

    Resources for Pervasive Developmental Disorders