Feeding, behaviours, health problems and developmental behavioural in the newborn and infancy period.
1.1 Did the child reside with you in (ANGNewbornInfancyReside)
| No | Code | Question | Response |
| 0.1.1 | ResideNewborn | The first 4 weeks of their life? | 1 – Yes; 2 – No (Range/ RadioButton; PVG YesNo) |
| 0.1.2 | ResideNewborn | The first 1-12 months of their life? | 1 – Yes; 2 – No (Range/ RadioButton; PVG YesNo) |
1.1 Newborn (0-1 month) (ANGNewbornHistory)
| No | Code | Question | Response |
| 1.1.2 | ANGHOWFEDINFANCY | Describe feeding during infancy | 1 – Breastfed; 2 – Bottlefed; 3 – Other |
| 1.1.6a | ANGAgeStoppedBreastfeeding2 | At what age was breastfeeding stopped? | |
| 1.1.6b | ANGAgeStoppedBottlefeeding2 | At what age was bottlefeeding stopped? | |
| 1.1.3 | ANGFeedingDifficulties | Does/did the individual with Angelman Syndrome experience feeding difficulties as a newborn? | 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown |
| 1.1.4 | ANGBreastFedEffort | If difficulties were experienced, was assistance used at any time in their infancy (e.g. lactation support, syringes, spooning in pumped milk)? Please note that there is an option to provide more details below | As above |
| 1.1.5 | ANGIfUnableToBreastBottleFeed | If the individual was unable to breast or bottle feed, please describe how he/she is/was fed as a newborn. | Participant specifies |
| 1.1.8 | ANGRefusalToNurse | Is/was there refusal to nurse? | 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown |
| 1.1.9 | ANGCouldNotLatch | Can/could not latch? | As above |
| 1.1.10 | ANGIneffectiveSuck | Ineffective suck? | As above |
| 1.1.11 | ANGBiting | Was there biting? | As above |
| 1.1.15 | ANGIrritablefeed | Does/did he/she appear irritable in association with feeding? | As above |
1.2 Newborn (0-1 month): Health and Behavioural (ANGNewbornHistory2)
| No | Code | Question | Response |
| 1.1.12 | ANGVomiting | Was there vomiting? | As above |
| 1.1.13 | ANGArching | Was there arching? | As above |
| 1.1.14 | ANGExcessiveMovement | Does/did he/she show excessive movements? | As above |
| 1.1.1 | ANGDifficultyMaintainingTemp | Does/did the individual with Angelman Syndrome have difficulties maintaining or regulating proper body temperature? | 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown |
| 1.1.17 | ANGNewbornSleep | Was there difficulty sleeping? | As above |
| 1.1.18 | ANGNewbornCryExcess | Please describe your child’s crying | 1 – Excessive/ constant; 2 – Rarely or never cried; 3 – Unusual sounding cry |
| 1.1.19 | ANGOthBehList | Were there any behavioural or developmental concerns? (check any/ all that apply) | 1 – Excessive irritability; 2 – Developmental delays; 3 – Unusual or repetitive movements; 4 – Unusual or repetitive behaviours; 5 – Smiling/ Laughter; 6 – Did not communicate needs (eg cry when hungry); 7 – Did not respond/ seem interested in caregiver/ people; 8 – Did not seem interested in surroundings; 9 – Other |
| 1.1.16 | ANGOthBehProblems | Please specify | |
| 1.1.20 | ANGOtherHealthProblems | Were there any other health problems? (check any/ all that apply) | 1 – Gastrointestinal problems/ reflux; 2 – Failure to thrive; Intolerances or allergies; 3 – Breathing/ respiratory difficulties; 4 – Seizures; 5 – Vision/ Eye problem; 6 – Illness requiring medical care; 7 – Other |
| 1.1.21 | ANGOtherHealthProblemsYES | Please describe |
1.3 Infancy (1-12 months): Temperament (ANGInfancyHistory)
| No | Code | Question | Response |
| 1.2.1 | ANGHappy | Is/was the individual with Angelman Syndrome happy in the first 12 months of their life? | 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown |
| 1.2.2 | ANGPlacid | Is/was he/she easy going in the first 12 months of their life? | As above |
| 1.2.3 | ANGEasyGoing | Is/was he/she easy going in the first 12 months of their life? | As above |
| 1.2.4 | ANGAffectionate | Is/was he/she affectionate in the first 12 months of their life? | As above |
1.4 Infancy (1-12 months): Feeding (ANGInfancyHistory2)
| No | Code | Question | Response |
| 1.2.5 | ANGSuckSwallow | Are/were there any difficulties with suck/swallow? | As above |
| 1.2.6 | ANGFailGain | Are/were there any difficulties with failure to gain weight? | As above |
| 1.2.7 | ANGRefluxGastroOesoph | Are/were there any reflux/gastro/oesophageal problems? | As above |
| 1.2.8 | ANGTransitionSolid | Are/were there any difficulties with transitioning to solid food? | As above |
1.5 Infancy (1-12 months): Respiratory (ANGInfancyHistory3)
| No | Code | Question | Response |
| 1.2.9 | ANGAsthmaWheezing | Are/were there any difficulties with asthma/wheezing? | As above |
| 1.2.10 | ANGCoughing | Are/were there any difficulties with coughing? | As above |
| 1.2.11 | ANGpneumoniadiff | Are/were there any difficulties with pneumonia? | As above |
| 1.2.12 | ANGbronchitis | Are/were there any difficulties with bronchitis? | As above |
1.6 Infancy (1-12 months): Other Health and Behavioural (ANGInfancyHistory4)
| No | Code | Question | Response |
| 1.2.16 | ANGInfancySleep | Was there difficulty sleeping ? | 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown (Range/ DefaultWidget; ANGBEHDEVFUNCTIONSCALE) |
| 1.2.17 | ANGInfancyCryExcess | Please describe your child’s crying | 1 – Excessive/ constant; 2 – Rarely or never cried; 3 – Unusual sounding cry |
| 1.2.18 | ANGOthBehList | Were there any behavioural or developmental concerns ? | 1 – Excessive irritability; 2 – Developmental delays; 3 – Unusual or repetitive movements; 4 – Unusual or repetitive behaviours; 5 – Smiling/ Laughter; 6 – Did not communicate needs ; 7 – Did not respond/ seem interested in caregiver/ people; 8 – Did not seem interested in surroundings; 9 – Other |
| 1.2.13 | ANGOthBehProblems | Are/were there any other behavioural issues during this period? | |
| 1.2.19 | ANGOtherHealthList | Were there any other health problems ? | 1 – Gastrointestinal problems/ reflux; 2 – Failure to thrive; Intolerances or allergies; 3 – Breathing/ respiratory difficulties; 4 – Seizures; 5 – Vision/ Eye problem; 6 – Illness requiring medical care; 7 – Other |
| 1.2.15 | ANGOtherHealthProblemsYES | Please describe |
