Responses collected between November 26, 2007 and May 28, 2012.
Here are the results of the Behavior Survey for individuals with MWS.
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.
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Total Number of Respondents to the Survey. - 58 | Responses | # | Responses | # | Responses | # | Responses | # |
Has your child had a formal IQ or developmental assessment? | Yes | 41 | No | 17 | | | | |
If yes, what level of intellectual disability does you child have? | Mild | 1 | Mod. | 8 | Severe | 27 | Profound | 6 |
Can your child sit up on their own? | Yes | 50 | No | 2 | A/I* | 6 | | |
If yes, at what age were they able to do so? | See Question #1 Below | | | | | | | |
Does your child walk? | Yes | 36 | No | 12 | A/I* | 10 | | |
If yes, do they walk with an unusual gait? | Yes | 36 | No | 1 | A/I* | 11 | N/A | 10 |
If no, do they walk? | Assisted | 7 | Walker | 2 | P/D** | 4 | | |
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 | 19 | No | 36 | A/I* | 3 | | |
If yes, how many words? (apx.) | 12 or less | 13 | 12to40 | 2 | 40 or > | 4 | Non Verbal | 36 |
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 | 7 | Sign | 4 | Pointing | 2 | Other | 22 |
| Comb. of All | 10 | A/I* | 9 | | | | |
Have you attempted toilet training? | Yes | 26 | No | 22 | A/I* | 4 | S/R*** | 6 |
If yes, what results have you had? | None | 31 | Timed | 12 | Fully | 4 | S/R*** | 7 |
Does your child have regular bowel movements? | Yes | 26 | No | 19 | A/I* | 1 | S/R*** | 12 |
Does your child feed themselves independently? | Yes | 7 | No | 25 | Assisted | 24 | A/I* | 4 |
Does your child dress themselves? | Yes | 1 | No | 45 | Assisted | 9 | A/I* | 3 |
Does your child sleep through the night? | Yes | 36 | No | 22 | A/I* | 0 | | |
Tends to be shy. | Not Typical | 44 | Somewhat | 12 | Very Typical | 2 | | |
Cries easily | Not Typical | 13 | Somewhat | 9 | Very Typical | 4 | | |
Likes to be with other people | Not Typical | 1 | Somewhat | 15 | Very Typical | 42 | | |
Is always on the go | Not Typical | 12 | Somewhat | 14 | Very Typical | 32 | | |
Prefers playing with others rather than alone | Not Typical | 24 | Somewhat | 22 | Very Typical | 12 | | |
Tends to be a loner | Not Typical | 39 | Somewhat | 16 | Very Typical | 3 | | |
Makes friends easily | Not Typical | 20 | Somewhat | 19 | Very Typical | 31 | | |
Is off and running as soon as they awake in the morning | Not Typical | 19 | Somewhat | 9 | Very Typical | 44 | | |
Is very sociable | Not Typical | 5 | Somewhat | 10 | Very Typical | 33 | | |
Is very energetic | Not Typical | 10 | Somewhat | 15 | Very Typical | 6 | | |
Takes a long time to warm to strangers | Not Typical | 39 | Somewhat | 13 | Very Typical | 23 | | |
Is very friendly with strangers | Not Typical | 12 | Somewhat | 23 | Very Typical | 0 | | |
Is somewhat of a loner | Not Typical | 41 | Somewhat | 17 | Very Typical | 8 | | |
Gets upset easily | Not Typical | 36 | Somewhat | 14 | Very Typical | 19 | | |
Reacts intensely when upset | Not Typical | 25 | Somewhat | 14 | Very Typical | 13 | | |
Hits or bites their self. | Never | 22 | Sometimes | 23 | Often | 21 | | |
Impulsive, acts before thinking | Not Typical | 23 | Somewhat | 14 | Very Typical | 17 | | |
Noisy and boisterous | Never | 12 | Sometimes | 28 | Often | 40 | | |
Poor sense of danger | Not Typical | 11 | Somewhat | 7 | Very Typical | 29 | | |
Repeated movements of hands, body, head, hand flapping or rocking | Never | 6 | Sometimes | 23 | Often | 9 | | |
Resists being cuddled, touched or held | Not Typical | 25 | Somewhat | 24 | Very Typical | 7 | | |
Screams a lot | Never | 31 | Sometimes | 20 | Often | 12 | | |
Avoids eye contact | Not Typical | 27 | Somewhat | 19 | Very Typical | 6 | | |
Bangs head | Never | 27 | Sometimes | 25 | Often | 11 | | |
Bites or pinches others | Never | 30 | Sometimes | 17 | Often | 42 | | |
Chews or mouths objects | Never | 2 | Sometimes | 14 | Often | 15 | | |
Fussy eater | Not Typical | 30 | Somewhat | 13 | Very Typical | 23 | | |
Grinds teeth | Never | 13 | Sometimes | 22 | Often | 10 | | |
Sleeps too little | Not Typical | 34 | Somewhat | 14 | Very Typical | 9 | | |
Sleeps too much | Not Typical | 46 | Somewhat | 3 | Very Typical | | | |
A/I*=Age Inappropriate - **Physical Disability - S/R***=Does not apply due to Ostomy etc. | | | | | | | | |
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Question #1 | 6-12mo | 10 | 13-18mo | 21 | 19-24mo | 12 | 25-30mo | 5 | 31-36mo | 2 | 37-42mo | 1 | 43-48mo | 0 | >48mo | 0 | A/I* | 6 |
Question #2 | 6-12mo | 1 | 13-18mo | 3 | 19-24mo | 7 | 25-30mo | 11 | 31-36mo | 11 | 37-42mo | 3 | >42mo | 7 | A/I* | 10 | N/A | 5 |
Question #3 | 24-30mo | 7 | 31-36mo | 4 | 37-42mo | 6 | 43-48mo | 9 | 49-56mo | 3 | 57-62mo | 1 | >62mo | 6 | A/I* | 12 | N/A | 8 |
Question #4 | 36-42mo | 9 | 43-48mo | 2 | 49-56mo | 7 | 57-62mo | 0 | 63-68mo | 0 | 69-74mo | 0 | >75mo | 2 | A/I* | 7 | N/V | 33 |
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Mowat-Wilson Syndrome Associated Conditions
Listed Below is a Condensed Version of Our Associated Conditions Survey.
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Number of respondents to survey 76 | | | | | Percentage |
Childs Gender | M | 41 | F | 35 | 55% M |
Clinical or Genetic Diagnosis? | C | 15 | G | 61 | 80% G |
Was your child diagnosed with Hirschsprung's? | Y | 43 | N | 31 | 57% Y |
Was your child diagnosed with any heart condition? | Y | 53 | N | 22 | 70% Y |
Was your child diagnosed with Agenesis of the Corpus Callosum, ACC? | Y | 41 | N | 33 | 54% Y |
Was your child diagnosed with Pyloric Stenosis? | Y | 14 | N | 60 | 18% Y |
Was your child born with Hypospadias? (males only) | Y | 25 | N | 17 | 60% Y |
Does your child have any kidney disorder? | Y | 16 | N | 58 | 21% Y |
Does you child have seizures? | Y | 60 | N | 16 | 79% Y |
/* Here you can add custom CSS for the current table */ /* Lean more about CSS: https://en.wikipedia.org/wiki/Cascading_Style_Sheets */ /* To prevent the use of styles to other tables use "#supsystic-table-5" as a base selector for example: #supsystic-table-5 { ... } #supsystic-table-5 tbody { ... } #supsystic-table-5 tbody tr { ... } */
This survey is the sole property of the owners of 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.