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Feeling isolated. (Respond).


R TK has a 4-year-old daughter with Angelman syndrome (AS). Her symptoms include microcephaly microcephaly /mi·cro·ceph·a·ly/ abnormal smallness of the head.microcephal´ic

mi·cro·ceph·a·ly
n.
Abnormal smallness of the head. Also called nanocephaly.
, uncontrollable laughter Laughter
Democritus

(c. 460—c. 370 B.C.) the laughing philosopher. [Gk. Phil.: Jobes, 430]

hyena

rapacious scavenger, known for its maniacal laughter. [Zoology: Misc.
, seizures In counterdrug operations, includes drugs and conveyances seized by law enforcement authorities and drug-related assets (monetary instruments, etc.) confiscated based on evidence that they have been derived from or used in illegal narcotics activities. , absent speech, feeding difficulties and sleep problems. TK believes that the child is not receiving proper medical care and feels lost, alone and isolated.

I have a 27-year-old daughter with AS. She was not diagnosed until she was 25. Your little girl will grow up to be a wonderful person. When she becomes an adult, she will mellow mel·low  
adj. mel·low·er, mel·low·est
1.
a. Soft, sweet, juicy, and full-flavored because of ripeness: a mellow fruit.

b.
 and calm down. Our Patricia is a delight now, but it was very difficult until she was about 20 years old.

--CS via the EP Web site

We have a 4-year-old son who has AS with similar symptoms. You might want to visit the Angelman Syndrome Foundation's Web site, which has many links for medical professionals as well as information for families. For instance, most states have a Local Parent Contact for families who are coping with this disease. There is also an annual picnic. Meeting other Angelman families helps to build new friendships, establish support and benefit our angel kids. We have met many families in the past 3 years at picnics and other gatherings. To contact the foundation, call: (800) IF-ANGEL or visit their Web site at: http://www.angelman.org See .org.

(networking) org - The top-level domain for organisations or individuals that don't fit any other top-level domain (national, com, edu, or gov). Though many have .org domains, it was never intended to be limited to non-profit organisations.

RFC 1591.
 

--DT via the EP Web site

In addition to the Angelman Syndrome Foundation Web site, which includes a directory that lists parents of children who have AS, there are many other support groups for parents of children who have special needs. Our public school preschool program is a wonderful resource, and our speech therapist speech therapist Speech pathologist, speech/language therapist A health professional trained to evaluate and treat voice, speech, language, or swallowing disorders–eg, hearing impairment, that affect communication. See Speech pathology.  has worked with several AS children before. She currently has 2 AS, non-verbal girls in her care now, and I love hearing about their progress. Periodic crying jags and depression are definitely normal. Our daughter has a severe sleeping disorder, which is also typical of an AS diagnosis.

--BK via the EP Web site
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Publication:The Exceptional Parent
Article Type:Letter to the Editor
Date:Feb 1, 2002
Words:316
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