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    Old 10-13-2006, 08:00 PM   #1
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    Newly Diagnosed...Help

    My son is 12 and newly diagnosed sort of....the psychiatrist said he is either
    PDD-NOS or Asperger's she hasn't quite decided which as of yet. She has placed him on Risperdal 1 mg. and so far it seems to be doing nothing except making him want to eat all the time. My real question is has anyone ever heard of a child being diagnosed as late as 12 yrs? He has been being treated for ADHD since he was about 3yrs. and it seems strange to me that after all these years he is just now getting diagnosed with autism. I really don't know what to think. Also, Risperdal seems like a pretty potent drug to be giving a child when you aren't even really sure about the diagnosis. I have expressed my concerns to the psychiatrist but she is very persuasive about trying the risperdal at a higher dose for a longer time. I feel more than a little lost and confused. I have tried to do research on my own but from what I have found even the so-called-experts don't have a clear consensus about PDD-NOS. I would appreciate any comments.

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    Old 10-13-2006, 08:31 PM   #2
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    Re: Newly Diagnosed...Help

    My son was on Respirdal for a little more than a year. My suggestion is that if you're not comfortable with it then make a change. I would not increase the dosage. I did let our Dr. make an increase, and he is huge now. All he wanted to do was eat. The more they grow, the more necessary is an increase in meds. My son is on Abilify now and is still big, but maintaining his weight, rather than getting bigger. Hopes this helps a little.

    Old 10-14-2006, 12:46 AM   #3
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    Re: Newly Diagnosed...Help

    If you don't feel comfortable I would stop giving it to him.

    Two of my 4 boys were diagnosed with ADHD and one of those 2 has tourettes and the other has aspergers.

    I just started my children on a natural dietary supplement therapy. They were tested and found that they do not digest carbs which causes them to have the add symptoms. They also tested high in one area showing need for further testing for heavy metals....waiting for the results on that one. Heavy metals also showed links to add and adhd and other neurological problems.

    I started them on supplements last week.... DHA, Neurmins, GABA, DMAE, Phosphatidylserine, Melissa, and DMG. All of the research I have done shows it works in all areas my boys have problems with.

    Check with a natural wellness center or similar and see if they can help you out.

    I believe people don't just have things......I believe that there are reasons behind every outward behavior.

    I don't want to mask our kids problems but treat and get rid of the problems.

    Good luck!

    Old 10-14-2006, 07:42 AM   #4
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    Re: Newly Diagnosed...Help

    I'm a 19-year-old Aspie. I was diagnosed in March, when I was 18 1/2. Asperger's isn't very well-known about; it's only starting to get publicity. Thus, a child who has demonstrated the symptoms since birth may only be getting a diagnosis now because doctors now know what to look for. I had so many red flags as a child, but back when I was a very young child, Asperger's wasn't even in the DSM-IV. It wasn't put in the DSM-IV until I was seven. I clearly have it, always have, but nobody knew the pattern of symptoms until these past few years. Even now, the only people who can tell I have it without me telling them are people who know what to look for, either professionals who deal with Asperger's or people who know an Aspie or are an Aspie themselves. I struggled for years, and am now able to understand why I struggled. I am very fortunate that I have been able to get as far academically as I have (I'm a college sophomore), considering all of my learning deficits. I'm on Lamictal, 100 mg, for my outbursts due to sensory overload. It has done wonders for me. I also have just begun seeing a new therapist who specializes in Asperger's and comorbid anxiety. (I also have OCD and panic attacks.) So, yes in short, it is quite possible that your son would only be getting a diagnosis now. Good luck, God bless, and if you have any questions, feel free to ask!
    "Not everything that steps out of line, and thus 'abnormal,' must necessarily be 'inferior.'"
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    Old 10-14-2006, 08:39 AM   #5
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    Re: Newly Diagnosed...Help

    I agree with all of those who said, if you don't feel comfortable with a medication, and if it has adverse effects on the child, discontinue it. I was given Ritalin when I was a child and it didn't work at all. It turned me into a zombie. I take Zoloft and that does work for me.

    Like Gatsby, I feel fortunate to have accomplished as much as I did, especially in the academic area. I have four college degrees, an Associate's, Bachelor's and Master's in English and an Associate of Occupational Science in Legal Office Systems from my local business college. I have had a job at the library for four years that I love and that I am ideally suited for. I think I am perfectly adapted, with my brain wiring, to that sort of work. It plays to my strengths: organization, broad general knowledge base, and abilty to find and categorize items. I am in my 40s and Asperger's was not know about until 1994 in this country. I first read about it in 1997 and thought the characteristics really fit me. I do have one outstanding marker of AS, unusual interests in both kind and intensity. Some are unusual for a person of my age (a 42 year old person interested in Roger Bannister) and some are common interests (such as a love of cats) that is more intense than usual. Fortunately, I found lots of friends on a cat site and many of my co-workers are animal lovers.

    There are some things I still can't do (I prefer to think of them as things I haven't done yet), but I hope to work on them. Like Roger Bannister, I prefer to think nothing is impossible. He is a source of encouragement to me. From his biography, I can see that he may himself have been an incredibly high functioning person with Asperger's. For him, I think his unusual gifts and characteristics helped him accomplish more than a typical person in his generation, both athletically and in life.

    Old 10-14-2006, 12:40 PM   #6
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    Re: Newly Diagnosed...Help

    Originally Posted by momfirst
    My real question is has anyone ever heard of a child being diagnosed as late as 12 yrs? He has been being treated for ADHD since he was about 3yrs. and it seems strange to me that after all these years he is just now getting diagnosed with autism.
    Our DS was dxd PDD-NOS at age 15 yrs., with a previous ADHD dx at age 10 yrs., and a Mood Disorder NOS dx at age 14. My DH & I have felt he was sort of Aspie since age 18 mos., however general peds laughed us off, as he was & is a kid who looks normal, is & has always been very well-behaved, a great student, with special talents in several artistic & technical areas.

    I think as a parent you have to use your gut instincts about meds. If your child is in great need of the Risperadal, for issues of violence or self-injury, it may be a very reasonable option for you.

    We did have one doc who suggested that med for our son, & we were horrified, felt it was totally unjustified. This is, afterall, an antipsychotic medication. In the absence of psychosis or some other extreme of behavior, IMO the risks & very serious potential side-effects may outweigh potential benefit. But you will know more about risk/benefit for your child as your trial of the drug continues, and as you research more.

    Our son has done better with alternative med approaches than with any meds we have tried, with the exception of a brief period during which an SSRI was very helpful. We have tried a number of meds, and our experience has been that for mild symptoms, the side-effects have been worse than the symptoms that the med was given for. Having said that, you should know that our son does have well-defined metabolic issues (not uncommon in autism),and he does perhaps process meds differently than the average child.

    A word to the wary, drugs are what psychiatrists have in their toolbox, besides talk therapy. They are usually gonna recommend drugs -- it's what they do. And there are usually incentives in place for them to recommend certain drugs to patients. As a parent, I find that part of my job is to discern to what extent drug recommendations are being made for my son, vs. other possible agendas.

    You may be interested in another thread from earlier this week, entitled FDA approves new medication for autism. Risperdal has its fans -- and its critics, both.

    Best wishes.

    Old 10-14-2006, 04:37 PM   #7
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    Re: Newly Diagnosed...Help

    I want to thank everyone for their comments. It especially helps to hear from those who are living with these issues. I have spoken to my son's pediatrician and he also supports taking him off the risperdal so that is what I am going to do.

    Old 10-16-2006, 01:09 PM   #8
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    Re: Newly Diagnosed...Help

    Twelve is by no means too late for a diagnosis. I did not get a diagnosis until I was 40. I had been to psychologists and psychiatrists for years and all anyone picked up on was anxiety and depression and bonding issues with my mother. No one ever got to WHY I had bonding issues or why I had anxiety or depression. The psychiatrist who picked up on it had an Asperger child in his family and had extensive contact with Asperger patients. He noted that the way my daughter and I interacted was suggestive of Asperger's. I then did research and finally I knew why I am the way I am and I finally had explanations for so many unanswered questions from my childhood. This psychiatrist's initial diagnosis of my daughter was PDD,NOS also. Some clinicians don't even believe there is such a thing as PDD,NOS--just autism spectrum disorders--so don't sweat the specific diagnosis. My daughter and I also have ADHD and that diagnosis came about years before the AS. My daughter was on Risperdal for a short time and I do not recommend it and here's why. My understanding from the psychiatrist as to why she was prescribing it was to treat aggressiveness, temper-tantrum type behavior and for sleep. My daughter's issues in that category were mild so to be prescribed a drug that is classified as an anti-psychotic I was not comfortable with. Every drug has side effects so always balance what help the drug is having against the downside of side effects. My daughter was on a stimulant from ages 6-8 to help her with reading and schoolwork. When she was 8, I read that current studies indicate that after 2 years on these types of stimulants, the kids may not be doing better any longer, and in fact, can be doing worse, than a control group. I took my daughter off of the drug to see what effect it would have. Her schoolwork did NOT decline (the original reason she was on it) and most importantly, her personality blossomed. Her sense of humor increased and she started to initiate social contact--which she had not been doing. I had been told by the psychiatrist (who made the PDD,NOS diagnosis) being able to socially relate and interact with ones peers by the age of 9 is critical to a child's development or that child may become at high risk for depression. (I had not been able to relate to my peers during childhood and I was suicidally depressed around the age of 9--so I feared this for my daughter). Therefore, I have kept my daughter off of medication since that time. Her ADHD traits can drive me up a wall but I have to balance that against her Asperger traits as well as her healthy development. My best advice to you is: Do your own research on ADHD and autism spectrum disorders so you are well-informed, never be dictated to by a health professional and follow your maternal instincts as to what is best for your child.

    Old 10-17-2006, 12:35 PM   #9
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    Smile Re: Newly Diagnosed...Help

    I am also new to this site, I am a mom who is a college student in Canada going to school to be an Educational Assistant. I will be working with children with Special Needs. The reason I joined this site is for an assignment on a specific disability, I chose autism, this disorder is very interesting and there is so much to learn about it. I have taken a few workshops at the Geneva Centre in Toronto Canada. The Geneva Centre is a place for you as parents, me as a teacher to help with different strategies in working with children with autism.

    Now, to answer 'Newly Diagnosed' in respect to the medication your child is on, are there other contributing factors that why your doctor would want your child on medication, because in my research there is no medication for autism unless there are other signs of ADHD, tourettes etc in order to control the other ticks. Unless there are other factors go with your own judgement or until you have all facts about the disorder, keep him off medication.
    Good luck

    Old 10-19-2006, 01:41 PM   #10
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    Re: Newly Diagnosed...Help

    Unfortunately my son was not diagnosed until he was a senior in high school at the age of 18. I guess it has to do with doctors and teachers not knowing what to look for and we had no idea......we knew he had learning disabilities but no one came out and said anything. Getting a PDD-NOS diagnosis can be bad if you are trying to get funding with help from the government.......they do not recognize the PDD-NOS as autism. We just went through to get help for my son through the Agency of Persons with Disabilities and the psycho-nuerologist had him put down as Atypical autism and put the number down for we were denied. Went back to him to get further testing and he did not write that number down and he got accepted after re-application. Apparently I have heard of more people who's kids get diagnosed later because they know more now than they did when our kids were smaller.

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