Behavior_Survey

Mowat-Wilson Syndrome Behavior Survey Results
Here are the results of the Behavior Survey for individuals with MWS.
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Disclaimer - The information compiled below is by no means a scientific study but an informal survey. It is information complied from the responses supplied to us from a survey of the members or our MWS Email Support Group. Keep in mind that the range of ages of the people that the answers apply to are from infants to adults. Many of the answers may change as children grow and mature. It was created to give those newly diagnosed with MWS a means to get some idea of what others have experienced in the same situation.
Total Number of Respondents to the Survey. - 26	Responses	#	Responses	#	Responses	#	Responses	#
Has your child had a formal IQ or developmental assessment?	Yes	19	No	7
If yes, what level of intellectual disability does you child have?	Mild	4	Mod.	4	Severe	15	Profound	3
Can your child sit up on their own?	Yes	26	No		A/I*
If yes, at what age were they able to do so?	See Question #1 Below
Does your child walk?	Yes	18	No	4	A/I	4
If yes, do they walk with an unusual gait?	Yes	18	No		A/I*	5	N/A	3
If no, do they walk?	Assisted	3	Walker	1	P/D**
At what age did they cruise?	See Question #2 Below
At what age did they begin to walk independently?	See Question #3 Below
Does your child speak?	Yes	7	No	19	A/I*
If yes, how many words? (apx.)	12 or less	3	12to40	2	40 or >	2	Non Verbal	19
If yes, at what age did they begin to speak?	See Question #4 Below
If no, do they use any other means of communication and what form?	Pecs	5	Sign	3	Pointing		Other	16
	Comb. of All	2	A/I*
Have you attempted toilet training?	Yes	14	No	8	A/I*	1	S/R***	3
If yes, what results have you had?	None	14	Timed	8	Fully	2	S/R***	3
Does your child have regular bowel movements?	Yes	13	No	7	A/I*		S/R***	6
Does your child feed themselves independently?	Yes	5	No	9	Assisted	12	A/I*
Does your child dress themselves?	Yes	1	No	19	Assisted	6	A/I*
Does your child sleep through the night?	Yes	17	No	9	A/I*
Tends to be shy.	Not Typical	18	Somewhat	7	Very	1
Cries easily	Not Typical	19	Somewhat	4	Very	3
Likes to be with other people	Not Typical		Somewhat	8	Very	18
Is always on the go	Not Typical	7	Somewhat	5	Very	14
Prefers playing with others rather than alone	Not Typical	12	Somewhat	10	Very	4
Tends to be a loner	Not Typical	14	Somewhat	11	Very	1
Makes friends easily	Not Typical	9	Somewhat	8	Very	9
Is off and running as soon as they awake in the morning	Not Typical	9	Somewhat	3	Very	14
Is very sociable	Not Typical	1	Somewhat	6	Very	19
Is very energetic	Not Typical	5	Somewhat	7	Very	14
Takes a long time to warm to strangers	Not Typical	18	Somewhat	5	Very	3
Is very friendly with strangers	Not Typical	4	Somewhat	9	Very	13
Is somewhat of a loner	Not Typical	16	Somewhat	10	Very
Gets upset easily	Not Typical	16	Somewhat	5	Very	5
Reacts intensely when upset	Not Typical	12	Somewhat	4	Very	10
Hits or bites their self.	Never	9	Sometimes	11	Often	6
Impulsive, acts before thinking	Not Typical	7	Somewhat	7	Very	12
Noisy and boisterous	Never	4	Sometimes	13	Often	9
Poor sense of danger	Not Typical	4	Somewhat		Very	22
Repeated movements of hands, body, head, hand flapping or rocking	Never	4	Sometimes	10	Often	12
Resists being cuddled, touched or held	Not Typical	13	Somewhat	10	Very	3
Screams a lot	Never	13	Sometimes	10	Often	3
Avoids eye contact	Not Typical	10	Somewhat	9	Very	7
Bangs head	Never	13	Sometimes	10	Often	3
Bites or pinches others	Never	12	Sometimes	10	Often	4
Chews or mouths objects	Never		Sometimes	6	Often	20
Fussy eater	Not Typical	15	Somewhat	6	Very	5
Grinds teeth	Never	2	Sometimes	11	Often	13
Sleeps too little	Not Typical	14	Somewhat	7	Very	5
Sleeps too much	Not Typical	22	Somewhat	1	Very	3
A/I=Age Inappropriate - Physical Disability - S/R**=Does not apply due to Ostomy etc.
This survey is the sole property of the owners of this website www.mowatwilson.org © Any reproduction or reuse of the survey without the prior written consent of the owners of this website is expressly forbidden unless for personal private use.

Mowat-Wilson Syndrome Associated Conditions Listed Below is a Condensed Version of Our Associated Conditions Survey. You Can View the Complete List by Clicking Here If you would like to participate in this survey you can do so by clicking Here
Number of respondents to survey 44
Childs Gender	M	23	F	21
Clinical or Genetic Diagnosis?	C	10	G	34
Was your child diagnoses with have Hirschsprung's?	Y	26	N	18
Was your child diagnosed with any heart condition?	Y	28	N	16
Was your child diagnosed with Agenesis of the Corpus Callosum, ACC?	Y	21	N	23
Was your child diagnosed with Pyloric Stenosis?	Y	9	N	35
Was your child born with Hypospadias? (males only)	Y	12	N	11	N/A	21
Does your child have any kidney disorder?	Y	9	N	35
Does you child have seizures?	Y	33	N	11
This survey is the sole property of the owners of this website www.mowatwilson.org © Any reproduction or reuse of the survey without the prior written consent of the owners of this website is expressly forbidden unless for personal private use.