Discussions By Condition: I cannot get a diagnosis.

down syndrome

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: payers
  • September 19, 2008
  • 02:03 PM

I have a cousin who is 16 with down syndrome. Lately he started having changes in the way he acts. He started pretending he was talking on a phone and laughing out loud at inappropriate times, then he started having accidents in his pants at school and at home. He has been potty trained since he was 5. Last year at school he joined the ROTC and he worked very hard at getting his badges,this year he started out in ROTC but was kicked out because of his behaivor. At home he has lost intrest in all the things he used to like ,like riding his john deere mower and cutting the grass for his mom he was also a big music fan and always listened to Toby Keith. Know he just sit around and pretends to be on a cell phone.His mom took him to his family doctor whom called a gentic doctor and was diagnosed with pyscotetic tendences (not sure if I spelled that right).So his family doctor has suggested putting him in a hospital.His family doen't think that that is his problem and neither do I. Can anyone out there help us? :confused:

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9 Replies:

  • Sounds like the doctor is not right for your cousin. Some docs have a real problem with special needs people, and they are very uneducated about how to best treat them. Try posting your question here: http://www.nads.org/pages_new/forums.html
    aquila 1263 Replies
    • September 19, 2008
    • 04:53 PM
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  • Did the doctor suggest that he be hospitalized permanently or just to get him on medications? He probably does best at home, though. It sounds like he needs some psychiatric medications, so he needs to be evaluated by a psychiatrist.Down's syndrome individuals have early onset dementia and an increased tendency to psychiatric problems...he could be simply depressed and his acting out and psychotic features related to that.Mainly, he needs to be evaluated by a good psychiatrist, so he can begin to get back into his life. Marionstar
    marionstar 228 Replies
    • September 19, 2008
    • 11:07 PM
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  • Okay, this is a common presentation in persons with Down's Syndrome, who incidentally seldom experience psychosis or schizoid tendencies. Person's with Down's Syndrome are far more susceptible to certain disorders and diseases. Whenever changes in behavior and bodily function are observed, the most common cause is due to an underlying medical condition. I am of the opinion that placement in the hospital is not only a very good idea, but would be warranted in this case to determine the underlying cause. This is not a simple variation of the Down's model behavior and his actions are being misinterpreted as such. People with Down's do not have the same capacity to respond to symptoms of underlying problems in the same manner that other people do. It's a form of anosognosia and they alternatively begin acting oddly with changes in bodily functions. He should be hospitalized and you'll find that an underlying medical condition is likely present and requires treatment to restore his pre-morbid behavior and function. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 19, 2008
    • 11:45 PM
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  • Well Doc, the question here is Institution or Hospital??? I would think he could medically be treated without the hospitalization. What's the purpose if they can run the same tests on an out patient basis? I would call a special education team meeting and take a state sponsored parent advocate to the meeting. What is going on at school? Did a girl break his heart? Does he do role playing at school a lot? At the team meeting talk about what changes the school has made in his program and find out what is going on. Then, request a new evaluation, as per your rights under IDEA, completed by a licensed school psychologist. The psychologist will do a behavior rating scale and report the results and come up with recommendations and changes that need to be made for his success at school. If he worked hard to complete the military program and now can't be in it, he may be feeling very badly about that. Yes, he might have a medical explanation, but the school has a responsibility to help the student and the studen'ts family the best that they can.
    Monsterlove 2921 Replies
    • September 20, 2008
    • 01:30 AM
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  • No one mentioned anything about an institution. Your statements are reflecting an emotional factor that has absolutely no bearing on determining this young man's health status. Patients with Down's Syndrome do not have the physical health patency demonstrated in other people and the need to hospitalize this young man is to determine whether the underlying cause could be a serious risk. In-patient status is the most expedient method by which to consecutively run diagnostic tests over the span of potential problems that Down's Syndrome patients can experience. His change in behavior has nothing to do with psychosocial factors. We're not talking about an otherwise healthy young individual who has been snubbed by a girl. Down's syndrome has serious health implications and must be investigated thoroughly because they are unable to effectively communicate their symptoms in some cases. regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 20, 2008
    • 02:29 AM
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  • It doesn't hurt to gather all of the facts and talk with the teachers. His school, at this time, is a big part of his day and the comprehensive evaluation followed up by a team meeting can or may determine some of the reasons for his behavior changes that are not medically caused. I do agree that he needs a comprehensive physical evaluation; there could be something going on in his brain that might require a neurologist, along with other specialists. Mom can take him to another doctor for a second opinion.
    Monsterlove 2921 Replies
    • September 20, 2008
    • 05:50 AM
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  • Hi, friends, I'v been following the posts on this young man...both JCottleMD and Monsterlove have very important points of view and bring a lot of information to the table. I am simply another member with these thoughts...For the mother of this young man, payers, may I suggest that you are person ultimately able to determine how you are able to carry out the full evaluation for your son.Some of his behavioral changes may be psychologically based, or, they may be medically based. Both aspects should be investigated.I think it is admirable that my colleagues at wrongdiagnosis.com have become both intellectually and emotionally involved in payer's case; this speaks to the high quality of this forum, and a reason that I am an active member. Thank you, payers, aquila, jCottleMD and Monsterlove for your posts. Marionstar
    marionstar 228 Replies
    • September 20, 2008
    • 10:55 PM
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  • Whoops! I see that payer is the cousin of the identified Down's syndrome patient, not parent. My mistake. Marionstar
    marionstar 228 Replies
    • September 21, 2008
    • 02:31 AM
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  • I was doing some research about Down's Syndrome when I read this post, so I am reviving this thread. Monsterlove, what happened to your cousin?I think the best way to understand Down's Syndrome is to educate yourself. Go on and read this Childwiki article.
    ethan01 1 Replies Flag this Response
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