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 |
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| Total Number of Respondents to the Survey. - 26 | Responses |
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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? | ||||||||
| 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? | ||||||||
| At what age did they begin to walk independently? | ||||||||
| 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? | ||||||||
| 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 | ||
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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 |
5 |
13-18mo | 12 | 19-24mo | 7 | 25-30mo | 2 | 31-36mo | 37-42mo | 43-48mo | >48mo | A/I* | |||||
| Question #2 | 6-12mo | 1 | 13-18mo | 19-24mo | 4 | 25-30mo | 5 | 31-36mo | 6 | 37-42mo | >42mo | 4 | A/I* |
4 |
N/A |
2 |
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| Question #3 | 24-30mo | 3 | 31-36mo | 3 | 37-42mo | 1 | 43-48mo | 7 | 49-56mo | 1 | 57-62mo | >62mo | 3 | A/I* |
5 |
N/A |
3 |
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| Question #4 | 36-42mo | 4 | 43-48mo | 49-56mo | 3 | 57-62mo | 63-68mo | 69-74mo | >75mo | A/I* | N/V |
19 |
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Mowat-Wilson Syndrome Associated Conditions |
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| 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 | ||
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This survey is the sole property of the owners of this
website www.mowatwilson.org
© |
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