childhood disintegrative disorder or late onset autism.

Heather - posted on 03/24/2012 ( 10 moms have responded )

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Looking for someone to talk to about my son his dr. Says he has childhood disintegrative disorder or late on set autism. Needing some advice on the whole situation or if anyone knows a dr. That has treated this first hand or any information of this diease thanks so much

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Katherine - posted on 03/25/2012

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Childhood disintegrative disorder, also known as Heller's syndrome, is a condition in which children develop normally until ages 2 to 4, but then demonstrate a severe loss of social, communication and other skills.



Childhood disintegrative disorder is very much like autism. Both are among the group of disorders known as pervasive developmental disorders, or autism spectrum disorders. And both involve normal development followed by significant loss of language, social, play and motor skills. However, childhood disintegrative disorder typically occurs later than autism and involves a more dramatic loss of skills. In addition, childhood disintegrative disorder is far less common than autism.



Treatment for childhood disintegrative disorder involves a combination of medications, behavior therapy and other approaches.



Children with childhood disintegrative disorder typically show the following signs and symptoms:



Dramatic loss of previously acquired skills in two or more of the following areas:



Language, including a severe decline in the ability to speak and have a conversation

Social skills, including significant difficulty relating to and interacting with others

Play, including a loss of interest in imaginary play and in a variety of games and activities

Motor skills, including a dramatic decline in the ability to walk, climb, grasp objects and other movements

Bowel or bladder control, including frequent accidents in a child who was previously toilet-trained



Loss of developmental milestones may occur abruptly over the course of days to weeks or gradually over an extended period of time.



When to see a doctor

Children typically develop at their own pace, but any loss of developmental milestones is cause for concern. If your child has suddenly lost previously acquired language, social, motor, play, thinking (cognitive) or self-help skills (such as toilet training and feeding) contact your doctor. In addition, if you suspect that your child has gradually shown a loss in any area of development, talk to your doctor.







So you need to find a behavioral therapist first thing. Where do you live? Try your chapter of autism speaks too.

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Heather - posted on 03/25/2012

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Beth oh my gosh what dr did you see that told you ear infections may have caused this ear infections my son had his first tubes at 13 months second set 22 months had a ear perforation back to back in both ears which caused the tubes to come out. He had tympanic patch. Done in the right side at 25months the left at 27 months then kept getting ear inf. Again tubes again At age 3 then those came out he Was 4 to find out that. Both ear drums needed. To be reconstructed and had to have skin graphs in april he had is first ear surgery the second in aug. Those last two surgeries we horrible they cut both ears almost off leaving a small section in the front attached. This all got much worse after the last ear surg. Thank you so much any info you have that may help me please email me on msg. Me on here my. Email is heatherdanyelle@hotmail.com I also added you to my circle thank you again

Heather - posted on 03/25/2012

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Beth oh my gosh what dr did you see that told you ear infections may have caused this ear infections my son had his first tubes at 13 months second set 22 months had a ear perforation back to back in both ears which caused the tubes to come out. He had tympanic patch. Done in the right side at 25months the left at 27 months then kept getting ear inf. Again tubes again At age 3 then those came out he Was 4 to find out that. Both ear drums needed. To be reconstructed and had to have skin graphs in april he had is first ear surgery the second in aug. Those last two surgeries we horrible they cut both ears almost off leaving a small section in the front attached. This all got much worse after the last ear surg. Thank you so much any info you have that may help me please email me on msg. Me on here my. Email is heatherdanyelle@hotmail.com I also added you to my circle thank you again

User - posted on 03/25/2012

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Hi my name is Beth. I have a son who has a diagnosis of Pervasive Developemental Disordor Not Otherwise Specified . He is fortunate to receive special Education services through our school district. He also has what's called an I.E.P. that legally specifies a plan of services the school will implement for your child to successfully meet the curriculum's requirements for the academic school year. I live in Connecticut , and I was fortunate to be told by my pediatrician at my son's one year check up about screenings provided by a group called "Birth to Three ". Once I called the group , they informed me that the screening was optional, and could either be done at my home, or at my child's day care. The screening was largely paid for by the state, and a portion was also paid by my husband's insurance . Two specialists came to my home. A speech language pathologist and a physical therapist. My son did have significant speech and motor skill delays. I would learn before his second birthday that both types of delays were due to scar tissue.that had built up after repeatedly perforating his ear drum , due to severe ear infections. HaThe fluid in his ears and constant infections led to ear tube surgery. Before the age of three I took him to see so many specialists , hoping for some answers. The diagnosis given was P.D.D.N.O.S After reading a mothers story about her son with Aspergers syndrome called "Eating an Artichoke" I personally believe my son has Aspergers . My son is now 13 and is in the 7th grade. He is one grade belowe where is typical for his age,as he completed an additional year of public pre-school at age 5.

Please don't hesitate to get in touch with me with any questions or concerns you might want to have a sympathetic person to talk to about our children . Sincerely Beth

Heather - posted on 03/25/2012

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I live in Tennessee and we don't have very much in Tennessee. For autism or CDD his dr. Is in Clevelnd Ohio, we were seen first in Nashville they revered us to Cleveland but they have not seen any cases of CDD , so I would like for a dr. That has saw this disorder check him out he hasn't lost any thing but social skills he still talks to us and is very smart he said the other day do you know what 6 plus 6 plus 6 is I asked him what he said 18 . He is also very good at video games but simple things he has trouble with his is 5 years old, be also is very attached to me, in the beginning he saw things scary monsters etc. He was childrens for a week with altered mental status when all this was going on, they had no idea what was wrong then in dec. He spent another week in children's with head twitching and involuntary movements and altered mental status again they also done epilepsy monitoring for 4days after that and that test turned out normal . Now he zones out and is in his own world looking up and has mouth movement,and he also works his hands he is a very sweet child to me and my husband others he just ignores them.he also hates the sun will not play outside unless the sun has gone down, he does not play much with children but will play with me, but his favorite is video games. Thank you for the info. I appreciate it so much.

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