Multiple Complex Developmental Disorder
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Actually - yes, I have heard of it. I googled it, and there is a whole lot more out there on it now, but google also pulled up a post I did on it 6 years ago (doesn't seem like it was 6 years ago, LOL). http://www.conductdisorders.com/forum/f13/multiplex-developmental-disorder-not-dsm-268/
http://medicine.yale.edu/childstudy/autism/information/autism.aspx
Found another link that has some good info (http://www.mcdd.be/informatie_en.htm), and also states (my emphasis added): "It would be better though that autism related disorders aren't seen as a milder form of autism. Several symptomatological factor analyses have revealed that the autism spectrum can be divided in four groups:
I have felt for years that my kid was on the spectrum. I didn't get much help from psychiatrists because he certainly never has fit the more traditional criteria for Autism/Pervasive Developmental Disorder (PDD). The closest we ever got was a rule out Asperger's diagnosis at 17, but... by that time it was far too late for meaningful intervention (he was way past noncompliant). To this day he still nails the 3 criteria for MCDD (social skill problems, affect problems, and disordered thinking).
Just from life with thank you, I think MCDD is an excellent description of some of our kids who just don't fully fit into other diagnostic boxes. He's had a boatload of diagnoses over the years - bipolar is the one that stuck, but obviously treatment and management plans for a kiddo on the spectrum have to be different than for a kiddo who is straight bipolar. I have to wonder if MCDD were being used as a diagnosis 15 years ago if we would have had a better shot at addressing not only the mood aspect, but also his *severely* impaired social skills (and later life skills).
I will say that at age 20, while he's definitely still "off", he has managed to find a niche for himself socially (and not *all* of his friends seem to be of the difficult child variety), has had (way too many, LOL) girlfriends, and the magical thinking has morphed a bit to a different type of thought process, obsessed with causing pain, blood, gore, dismemberment, etc. I think at this stage the biggest challenge is that his affect is still on the bizarre side of things and it's making employment virtually impossible. on the other hand, he has somehow managed to live on his own for 2 years, and is maintaining very well here at home now. Starts college in a couple of weeks.
http://medicine.yale.edu/childstudy/autism/information/autism.aspx
Found another link that has some good info (http://www.mcdd.be/informatie_en.htm), and also states (my emphasis added): "It would be better though that autism related disorders aren't seen as a milder form of autism. Several symptomatological factor analyses have revealed that the autism spectrum can be divided in four groups:
- the classical Kanner-type autistic patients
- a group of Kanner-type autistic patients with mental retardation
- a group of atypical patients with more organic disturbances
- a group of patients with more affective and schizoid symptoms can be distinguished (Dahl et al, 1986; Siegel et al, 1986; Szatmari et al, 1989) and these matches the group of multiple-complex developmental disorders (Cohen et al, 1986). "
I have felt for years that my kid was on the spectrum. I didn't get much help from psychiatrists because he certainly never has fit the more traditional criteria for Autism/Pervasive Developmental Disorder (PDD). The closest we ever got was a rule out Asperger's diagnosis at 17, but... by that time it was far too late for meaningful intervention (he was way past noncompliant). To this day he still nails the 3 criteria for MCDD (social skill problems, affect problems, and disordered thinking).
Just from life with thank you, I think MCDD is an excellent description of some of our kids who just don't fully fit into other diagnostic boxes. He's had a boatload of diagnoses over the years - bipolar is the one that stuck, but obviously treatment and management plans for a kiddo on the spectrum have to be different than for a kiddo who is straight bipolar. I have to wonder if MCDD were being used as a diagnosis 15 years ago if we would have had a better shot at addressing not only the mood aspect, but also his *severely* impaired social skills (and later life skills).
I will say that at age 20, while he's definitely still "off", he has managed to find a niche for himself socially (and not *all* of his friends seem to be of the difficult child variety), has had (way too many, LOL) girlfriends, and the magical thinking has morphed a bit to a different type of thought process, obsessed with causing pain, blood, gore, dismemberment, etc. I think at this stage the biggest challenge is that his affect is still on the bizarre side of things and it's making employment virtually impossible. on the other hand, he has somehow managed to live on his own for 2 years, and is maintaining very well here at home now. Starts college in a couple of weeks.
Hm. difficult child 2 also doesn't fit well into anybody's category. I just went through doing his hx with the social worker at the MIND Institute (took more than 5 hours) and she kept saying "this is just like the deficits of kids with autism but clearly he isn't autistic". As in muttering it at least 10 times over the 5 hours. And I agree with her (and others) that he is not quite "autistic" but has considerable overlap with autism in the executive function deficits, in the inability to take another person's perspective and to some extent with language processing problems.
But he also has considerable mood lability (his psychiatrist of 4 years said "he is either unresponsive or waaaay over the top in his emotional responses"). I think he is anxious pretty much all of the time and that anxiety is driving a lot of his maladaptive behaviors at home.
It is also clear that he has some level of distorted thinking, particularly when it comes to family relationships. He has some trouble with peers too. His disordered thinking is mostly in the "ideas of reference" category. Not all the way to paranoia but definitely suspicious thinking happening.
He has been diagnosed by speech pathologist as being unable to take another person's perspective and his psychiatrist agrees. She says it is a developmental problem with his brain when I confess to feeling like it is "all my fault" and that it is NOT all my fault.
I'm going to e-mail the social worker at the MIND about this in case it is something that they might be able to diagnose.
Thanks for the links.
Will keep you posted.
But he also has considerable mood lability (his psychiatrist of 4 years said "he is either unresponsive or waaaay over the top in his emotional responses"). I think he is anxious pretty much all of the time and that anxiety is driving a lot of his maladaptive behaviors at home.
It is also clear that he has some level of distorted thinking, particularly when it comes to family relationships. He has some trouble with peers too. His disordered thinking is mostly in the "ideas of reference" category. Not all the way to paranoia but definitely suspicious thinking happening.
He has been diagnosed by speech pathologist as being unable to take another person's perspective and his psychiatrist agrees. She says it is a developmental problem with his brain when I confess to feeling like it is "all my fault" and that it is NOT all my fault.
I'm going to e-mail the social worker at the MIND about this in case it is something that they might be able to diagnose.
Thanks for the links.
Will keep you posted.
Some links with interesting info on three Pervasive Developmental Disorder (PDD)-not otherwise specified or early onset psychiatric disorder sub-classifications that have not made it into DSM IV but appear to have sufficient research evidence to support them as distinct disorders:
McDD - Multiple Complex Development Disorder
MDI - Multidimensionally Impaired Disorder
PAD - Pathological Avoidant Disorder
http://www.scielo.br/pdf/rbp/v28s1/en_a03v28s1.pdf
[URL="http://works.bepress.com/jean_frazier/79/"]http://works.bepress.com/jean_frazier/79/
http://apt.rcpsych.org/cgi/content/full/7/4/310
[/URL]
McDD - Multiple Complex Development Disorder
MDI - Multidimensionally Impaired Disorder
PAD - Pathological Avoidant Disorder
http://www.scielo.br/pdf/rbp/v28s1/en_a03v28s1.pdf
[URL="http://works.bepress.com/jean_frazier/79/"]http://works.bepress.com/jean_frazier/79/
http://apt.rcpsych.org/cgi/content/full/7/4/310
[/URL]
No, I was honest with Camp Oasis about his 2 recent psychiatric hospital and they said "Um no, we don't think he's stable enough to come down here." which was actually fine with me. I just wanted them to be the ones to say no instead of me.
He did go to camp in Livermore and "did fine" according to the adult medical staff. According to difficult child 2 all was NOT fine but I think whatever the problems they all happened at the cabin counselor level and didn't get brought to the adult staff. The medical staff did admit (when questioned) that they had to give him medications to help him sleep the first 3 nights and that he was up at 6 am long before everyone else every day. when you look at the photos from camp you hardly see him in them. He says he didn't do any of the evening activities - he was too tired. I tried to e-mail the camp and ask for info from the camp counselors but got no reply.
The evaluation hasn't happened yet. The first step is to do the history with the social worker who then summarizes it for the psychologist and passes on the records so she can decide what assessments to start with and how many hours to ask for from the insurance company. I'm still waiting to hear about an appointment. I'm guessing it will be September at the earliest given that we still haven't heard yet.
The psychologist is supposed to be really good. She's on staff at the MIND Institute. And she will be drowning in records. I put together a DVD with scanned PDF or digital copies of every report and assessment he's had done since he was 6. Including his neonatal hospital record complete with APGAR's. I already maintain a summary of all the assessment results in a Word document to make it easy to see who did what and what were the results. I added a side bar of comments about things that were going on at the same time as the assessments. That list now runs to 14 pages. A while back I put together a different summary that's a time line based on his hearing loss. I did that when I got the head of assessment at the school for the deaf to look over his records 3 years ago. I updated that because it does a better job of giving a comprehensive picture. It includes hearing loss, health conditions/procedures/crises, assessments, medications, school placement by school year.
So she won't be able to complain about a lack of records.
He did go to camp in Livermore and "did fine" according to the adult medical staff. According to difficult child 2 all was NOT fine but I think whatever the problems they all happened at the cabin counselor level and didn't get brought to the adult staff. The medical staff did admit (when questioned) that they had to give him medications to help him sleep the first 3 nights and that he was up at 6 am long before everyone else every day. when you look at the photos from camp you hardly see him in them. He says he didn't do any of the evening activities - he was too tired. I tried to e-mail the camp and ask for info from the camp counselors but got no reply.
The evaluation hasn't happened yet. The first step is to do the history with the social worker who then summarizes it for the psychologist and passes on the records so she can decide what assessments to start with and how many hours to ask for from the insurance company. I'm still waiting to hear about an appointment. I'm guessing it will be September at the earliest given that we still haven't heard yet.
The psychologist is supposed to be really good. She's on staff at the MIND Institute. And she will be drowning in records. I put together a DVD with scanned PDF or digital copies of every report and assessment he's had done since he was 6. Including his neonatal hospital record complete with APGAR's. I already maintain a summary of all the assessment results in a Word document to make it easy to see who did what and what were the results. I added a side bar of comments about things that were going on at the same time as the assessments. That list now runs to 14 pages. A while back I put together a different summary that's a time line based on his hearing loss. I did that when I got the head of assessment at the school for the deaf to look over his records 3 years ago. I updated that because it does a better job of giving a comprehensive picture. It includes hearing loss, health conditions/procedures/crises, assessments, medications, school placement by school year.
So she won't be able to complain about a lack of records.
gcvmom
Here we go again!
So she won't be able to complain about a lack of records.
If that doesn't help them come up with an accurate picture so that they can develop a treatment plan, I don't know what will!
That's too bad about camp, but his stability is really more important right now. He's still got one more year before he ages out for camp, right? This is difficult child 1's last year
He's not sure if he wants to try being a camp leader next year or not.Sigh. I really hope they look hard at all your reports and can come up with a solid plan for difficult child.
Hang in there, mom!
