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
compiled from the |
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| 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? | ||||||||
| 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? | ||||||||
| At what age did they begin to walk independently? | ||||||||
| 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? | ||||||||
| 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 | ||
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A/I*=Age Inappropriate - **Physical Disability - S/R***=Does not apply due to Ostomy etc. |
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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. |
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| Question #1 | 6-12mo |
8 |
13-18mo | 16 | 19-24mo | 9 | 25-30mo | 4 | 31-36mo | 37-42mo | 43-48mo | >48mo | A/I* |
5 |
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| 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 |
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Mowat-Wilson Syndrome Associated Conditions |
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| Number of respondents to survey 60 |
Percentage |
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| 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 |
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This survey is the sole property of the owners of this
website www.mowatwilson.org
© |
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