Mowat-Wilson Syndrome Behavior Survey Results
Here are the results of the Behavior Survey for individuals with MWS.
For best results when printing use Landscape Mode.
If you would like to participate on this page you can fill out and submit a survey from our Behavior Survey Page or
click here to return to the Community Page

Disclaimer - The information compiled below is by no means a scientific study but an informal survey. It is information compiled 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 is 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. - 42 Responses

#

 Responses

#

 Responses

#

 Responses

#
Has your child had a formal IQ or developmental assessment? Yes 32 No 10        
If yes, what level of intellectual disability does you child have? Mild 7 Mod. 6 Severe 24 Profound 5
Can your child sit up on their own? Yes 37 No 1 A/I* 4    
If yes, at what age were they able to do so?

See Question #1 Below

  
Does your child walk? Yes 26 No 7 A/I 9    
If yes, do they walk with an unusual gait? Yes 25 No 1 A/I* 10 N/A 6
If no, do they walk? Assisted 4 Walker 1 P/D** 3    
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 13 No 27 A/I* 2    
If yes, how many words? (apx.) 12 or less 9 12to40 2 40 or > 2 Non Verbal 27
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 6 Sign 4 Pointing 1 Other 17
Comb. of All 6 A/I* 7        
Have you attempted toilet training? Yes 19 No 15 A/I* 3 S/R*** 5
If yes, what results have you had? None 23 Timed 9 Fully 2 S/R*** 6
Does your child have regular bowel movements? Yes 19 No 13 A/I*   S/R*** 10
Does your child feed themselves independently? Yes 5 No 17 Assisted 17 A/I* 3
Does your child dress themselves? Yes 1 No 31 Assisted 8 A/I* 2
Does your child sleep through the night? Yes 25 No 17 A/I*      
Tends to be shy. Not Typical 30 Somewhat 10 Very Typical 2    
Cries easily Not Typical 30 Somewhat 8 Very Typical 4    
Likes to be with other people Not Typical   Somewhat 13 Very Typical 29    
Is always on the go Not Typical 8 Somewhat 10 Very Typical 24    
Prefers playing with others rather than alone Not Typical 17 Somewhat 17 Very Typical 8    
Tends to be a loner Not Typical 25 Somewhat 15 Very Typical 2    
Makes friends easily Not Typical 14 Somewhat 14 Very Typical 14    
Is off and running as soon as they awake in the morning Not Typical 16 Somewhat 7 Very Typical 19    
Is very sociable Not Typical 3 Somewhat 7 Very Typical 32    
Is very energetic Not Typical 7 Somewhat 11 Very Typical 24    
Takes a long time to warm to strangers Not Typical 29 Somewhat 9 Very Typical 4    
Is very friendly with strangers Not Typical 6 Somewhat 18 Very Typical 18    
Is somewhat of a loner Not Typical 28 Somewhat 14 Very Typical      
Gets upset easily Not Typical 25 Somewhat 10 Very Typical 7    
Reacts intensely when upset Not Typical 18 Somewhat 9 Very Typical 15    
Hits or bites their self. Never 15 Sometimes 16 Often 11    
Impulsive, acts before thinking Not Typical 15 Somewhat 11 Very Typical 16    
Noisy and boisterous Never 5 Sometimes 24 Often 13    
Poor sense of danger Not Typical 9 Somewhat 3 Very Typical 30    
Repeated movements of hands, body, head, hand flapping or rocking Never 4 Sometimes 16 Often 22    
Resists being cuddled, touched or held Not Typical 18 Somewhat 18 Very Typical 6    
Screams a lot Never 21 Sometimes 16 Often 5    
Avoids eye contact Not Typical 18 Somewhat 14 Very Typical 10    
Bangs head Never 19 Sometimes 17 Often 6    
Bites or pinches others Never 21 Sometimes 14 Often 7    
Chews or mouths objects Never 1 Sometimes 11 Often 30    
Fussy eater Not Typical 22 Somewhat 11 Very Typical 9    
Grinds teeth Never 9 Sometimes 16 Often 17    
Sleeps too little Not Typical 21 Somewhat 12 Very Typical 9    
Sleeps too much Not Typical 34 Somewhat 1 Very Typical 7    

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.
Question #1 6-12mo

8

 13-18mo 16 19-24mo 9 25-30mo 4 31-36mo   37-42mo   43-48mo   >48mo   A/I*

5
Question #2 6-12mo 1 13-18mo 3 19-24mo 6 25-30mo 7 31-36mo 9 37-42mo 1 >42mo 4 A/I*

9

 N/A

2
Question #3 24-30mo 5 31-36mo 4 37-42mo 4 43-48mo 7 49-56mo 2 57-62mo 1 >62mo 3 A/I*

10

 N/A

5
Question #4 36-42mo 7 43-48mo 1 49-56mo 4 57-62mo   63-68mo   69-74mo   >75mo 1 A/I* 6 N/V

25

Return to top

 

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  60  

Percentage
Childs Gender M 32 F 28 49% M
Clinical or Genetic Diagnosis? C 13 G 47 79% G
Was your child diagnosed with Hirschsprung's? Y 35 N 25 58% Y
Was your child diagnosed with any heart condition? Y 42 N 18 69% Y
Was your child diagnosed with Agenesis of the Corpus Callosum, ACC? Y 32 N 28 54% Y
Was your child diagnosed with Pyloric Stenosis? Y 12 N 48 19% Y
Was your child born with Hypospadias? (males only) Y 19 N 13 66% Y
Does your child have any kidney disorder? Y 15 N 43 27% Y
Does you child have seizures? Y 45 N 15 76% Y

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.