Question
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Questionnaire
# 1
2001
58
participants
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Questionnaire
# 2
2002
variable
# for each ?
|
Questionnaire
# 3 2002-03
(81
participants)
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Child’s Sex
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Male 53.4% (31)
Female 46.6% (27)
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Male: 61.54% (24)
Female: 38.46% (15)
(39 responses)
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Male: 58% (47)
Female: 41.2% (34)
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Age at time of questionnaire
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Deceased: 9
Under 1: 22.3% (13)
1 year old: 6.8% (4)
2 - 6 years old: 32.7% (19)
7-10 years old: 15.4% (7)
11-15 years old: 11.9% (5)
16 and over: 1.7% (1)
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Deceased: 2
Under 1: 24.33% (9)
1 year old: 10.82% (4)
2-6 years old: 37.85 (14)
7-10 years old: 13.52% (5)
11-15 years old: 5.41% (2)
16 and over: 1.7% (1)*
(37 replies)
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Deceased: 16% (13)
Under 1: 18.5% (15)
13-18 mos.: 2.46% (2)
19-24 mos: 3.7% (3)
25 months-3 years: 18.5% (15)
4 years: 5 % (4)
5 years: 3.7% (3)
6 years: 6.17% (5)
7 years: 3.7% (3)
8 years: 2.46% (2)
9 years: 6.17% (5)
10 years: 1.23% (1)
11 years: 3.7% (3)
12 years: 0
13 years: 2.46% (2)
14 & 15 years: 0
16 and over: 6.17% (5) *
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Who is child living with?
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Birth family: 60.3% (35)
Extended family 5.2% (3)
Adoptive family: 24.1% (14)
Foster family: 6.9% (4)
Other: 1.7% (1)
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Birth family: 60.53% (23)
Extended family: 5.26% (2)
Adoptive family: 23.68 % (9)
Foster family: 7.89 % (3)
Other (2.63%)1
(38 replies)
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Birth Family: 49.38% (40)
Extended Family: 7.4% (6)
Adoptive Family: 27.16% (22)
Foster Family: 9.87% (8)
Other: 2.46% (2)
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Age of mother at time of child’s birth
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Under 14: 1.7% (1)
14 years: 1.7% (1)
15 years: 1.7% (1)
16 years: 17.2% (10)
17 years: 8.6% (5)
18 years: 6.9% (4)
19 years: 6.9% (4)
20-25 years: 29.3% (17)
26-30 years: 13.8% (8)
over 30: 10.3% (6)
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Under 14:0
14 years: 8.33% (3)
15 years: 0
16 years: 11.11% (4)
17 years: 8.33% (3)
18 years: 2.78% (1)
19 years 8.33% (3)
20-25 years: 33.33% (12)
26-30 years: 19.44 % (7)
over 30: 8.33% (3)
(36 replies)
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Under 14: 0
14 years: 5 % (4)
15 years: 1.23% (1)
16 years: 11.11% (9)
17 years: 7.4% (6)
18 years: 7.4% (6)
19 years: 9.87% (8)
20-25: 27.16% (22)
26-30: 23% (19)
over 30: 6.17% (5)
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Did mom have prenatal care?
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Yes: 67.2% (39)
No: 32.8% (19)
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Not asked
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Yes: 65.43% (53)
No: 30.86% (25)
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Suspected Reason for condition
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Prenatal stroke: 43.1% (25)
Prenatal infection: 8.6% (5)
Death of twin in utero: 6.9% (4)
Prenatal drug use: 5.2%
(5)
Other: 8.6% (5)
Unknown: 41.4% (24)
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Prenatal stroke: 43.59% (17)
Prenatal infection: 5.13% (2)
Death of twin in utero: 2.56% (1)
Prenatal drug use: 7.69% (3)
Other: 10.26% (4)
Unknown: 30.77% (12)
(39 replies)
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Prenatal stroke: 38.27% (31)
Prenatal drug use: 11.11% (9)
Prenatal infection: 7.4% (6)
Death of twin: 5% (4)
Unknown: 44.44% (36)
After birth: 2.46% (2)**
Some of the other causes mentioned were: alcohol abuse,
placental abruption, blood clots in baby, incompatibility due to mom
being HLA1a.
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At what age was your child diagnosed with hydranencephaly?
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Before birth: 19.0% (11)
At birth (less than 24 hrs after birth): 41.4% (24)
Less than one month: 13.8% (8)
1-12 months 15.5% (9)
over 12 months 3.4% (2)
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Not asked
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Before birth: 33.33% (27)
birth (>24 hrs old): 34.56% (28)
Less than one month: 18.5% (15)
1-12 months: 5% (4)
over 12 months: 1.23% (1)
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What are your child’s most common health concerns?
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Respiratory: 41.4% (24)
Neurological (shunt/seizures) 62.1% (36)
Feeding: 31.0% (18)
Spasticity: 19.0% (11)
Other: 15.5% (9)
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Respiratory: 28.57% (12)
Neurological (shunt/seizures): 38.1% (16)
Feeding: 11.9% (5)
Spasticity: 9.52% (4)
Other: 11.9% (5)
(42 replies)
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Respiratory: 51.85 (42)
Neurological (shunt/seizures): 71.6% (58)
Feeding: 40.74% (33)
Spasticity: 55.55% (45)
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Does your child have allergies?
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Yes: 32.8% (19)
No: 63.8% (37)
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Yes: 35.71% (10)
No: 64.29% (18)
(28 replies)
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Yes: 35.8% (29)
No: 60.49% (49)
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What is your child allergic to?
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Latex: 6.9% (4)
Environmental:19.0% (11)
Medications: 15.5% (9)
Food: 8.6% (5)
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Latex: 13.04% (3)
Environmental: 17.39% (4)
Medications: 17.39% (4)
Food: 4.35% (1)
Other: 8.7% (2)
Nothing: 39.13% (9)
(23 replies)
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Latex: 3.7% (3)
Environmental: 16% (13)
Medications:14.8% (12)
Food: 7.4% (6)
Other: 8.64% (7)
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Does your child have a shunt?
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Yes: 70.7% (41)
No: 27.6% (16)
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Yes: 66.67% (20)
No: 33.33% (10)
(30 replies)
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Yes: 60.49% (49)
No: 38.27% (31)
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Does your child have:
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Tracheostomy: 5.2% (3)
Current DNR: 22.4% (13)
Previous DNR: 24.1% (14)
Ventilator: 1.7% (1)
Hypothyroidism: 6.9% (4)
Asthma/Reactive airways disease: 24.1% (14)
Diabetes Insipidus: 19.0% (11)
Diabetes: 0
Premature Puberty: 22.4% (13)
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Tracheostomy: 11.11% (4)
(36 replies)
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Tracheostomy: 7.4% (6)
Ventilator: 6.17% (5)
Diabetes Insipidus: 27.16% (22)
Diabetes: 0
DNR: 17.28% (14)
Previous DNR: 18.5% (15)
Bipap: 3.7%(3)
Asthma/RAD: 19.73% (16)
Premature puberty: 19.73% (16)
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Has your child had bacterial or viral pneumonia?
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Yes: 43.1% (25)
No: 56.9% (33)
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Yes: 37.93% (11)
No: 62.07% (18)
(29 replies)
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Yes: 32.1% (26)
No: 60.49% (49)
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Has your child had aspiration pneumonia?
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Yes: 29.3% (17)
No: 69.0% (40)
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Yes: 26.67% (8)
No: 73.33% (22)
(30 replies)
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Yes: 33.33% (27)
No: 62.96% (51)
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Does your child use oxygen at home?
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Yes: 20.7% (12)
No: 77.6% (45)
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Yes: 17.24% (5)
No: 82.76% (24)
(29 replies)
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Yes: 24.69% (25%)
No: 72.83% (59)
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Does your child need suctioning?
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Yes: 37.9% (22)
No: 58.6% (34)
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Yes: 39.29% (11)
No: 60.71% (17)
(28 replies)
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Yes: 46.91% (38)
No: 51% (41)
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Does your child get gurgly?
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Yes: 58.6% (34)
No: 39.7% (23)
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Yes: 71.43% (20)
No: 28.57% (8)
(28 replies)
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Yes: 70.37% (57)
No: 22.22% (18)
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Is your child more likely to have a:
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high temperature: 12.1% (7)
low temperature: 60.3% (35)
16 people didn’t respond to this ?
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High temperature: 31.03% (9)
Low temperature: 68.97% (20)
(29 replies)
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High temperature: 13.58% (11)
Low temp: 34.56% (28)
Both: 30.86% (25)
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Does your child have seizures?
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Yes: 75.9% (44)
No: 20.7% (12)
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Yes: 82.76% (24)
No: 17.24% (5)
(29 replies)
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Yes: 75.3% (61)
No: 19.73% (16)
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Has your child had any urinary tract infections?
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Yes: 24.1% (14)
No: 75.9%
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Yes: 23.08% (6)
No: 76.92% (20)
(26 replies)
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Yes: 20.98% (17)
No: 75% (61)
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Does your child have Kidney problems?
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Not asked
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Not asked
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Yes: 8.64% (7)
No: 90.12% (73)
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Has your child had any ear infections?
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Yes: 51.7% (30)
No: 44.8$ (26)
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Yes: 81.48% (22)
No: 18.52% (5)
(27 replies)
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Yes: 51.85% (42)
No: 45.67% (37)
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Has your child
had tonsillitis?
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Yes: 10.3% (6)
No: 89.7% (52)
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Yes: 19.23% (5)
No: 80.77% (21)
(26 replies)
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Yes: 16% (13)
No: 81.48% (66)
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Does your child get “junky” eyes
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Not asked
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Not asked
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Yes: 49.38% (40)
No: 49.38% (40)
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Does your child
have “coma” incidences (hard
to rouse, low temp., low heart rate,
etc?)
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Yes: 55.2% (32)
No: 41.4% (24)
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Not asked
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Yes: 46.91% (38)
No: 50.61% (41)
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Does your child
have trouble
sleeping?
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Yes: 55.2% (32)
No: 41.4% (24)
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Yes: 44.83% (13)
No: 55.17% (16)
(29 replies)
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Yes: 53.08% (43)
No: 44.44% (36)
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Have you tried Melatonin?
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Yes: 13.8% (8)
No: 62.1% (36)
14 people didn’t answer
this question.
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Yes: 34.78% (8)
No: 65.22% (15)
(23 replies)
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Yes: 19.73% (16)
No: 75.3% (61)
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Did it work?
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Yes: 1.7% (1)
No: 13.8% (8)
Not tried: 39.7% (23)
26 people didn’t answer
this question
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Yes: 6.25% (1)
No: 43.75% (7)
Not tried: 50% (8)
(16 replies)
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Out of the 16 who tried it, it worked for 1 child.
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Does your child
Take anticonvulsants
/seizure medications?
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Yes: 67.2% (39)
No: 29.3% (17)
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Yes: 85.71% (24)
No: 14.29% (4)
(28 replies)
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Yes: 66.66% (54)
No: 12.34% (10)
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What seizure medications does
your child take?
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Not asked
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None: 6.9% (4)
Tegretol: 6.9% (4)
Klonopin
8.62% (5)
Depakene 5.17% (3)
Dilantin 1.72%
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Tegretol: 12.34% (10)
Frisium: 1.23% (1)
Klonopin: 13.58% (11)
Tranxene: 6.17% (5)
Neurontin 0
Lamictal: 6.17% (5)
Mogadon: 2.46% (2)
Phenobarb:29.62% (24)
Dilantin: 1.23% (1)
Mysoline: 1.23% (1)
Topomax: 13.58% (11)
Depekene: 17.28% (14)
Sabril: 3.7% (3)
Valium: 9.87% (8)
Ativan: 6.17% (5)
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Is your child on any respiratory/asthma medications?
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Yes: 39.7% (23)
No: 56.9% (33)
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Yes: 45.83% (11)
No: 54.17% (13)
(24 replies)
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Yes: 44.44% (36)
No: 54.32% (44)
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What respiratory medications does
your child take?
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Not asked
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Not asked
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Intal: 6.17% (5)
Ventolin: 34.56% (28)
Serevent: 0
Theophyline: 0
Beclovent: 1.23% (1)
Prednisone: 3.7% (3)
Singulair: 3.7% (3)
Xopenex: 6.17% (5)
Pulmicort: 11.11% (9)
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Does your child take any digestive aids or reflux medications?
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Yes: 36.2% (21)
No: 56.9% (33)
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Yes: 64% (16)
No: 36% (9)
(25 replies)
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Yes: 45.67% (37)
No: 53.08% (43)
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What medications are your child taking to aid digestion or
control reflux?
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Not asked
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None: 14.2% (5)
Propulsid: 8.75% (3)
Zantac: 28.57% (10)
Tagamet 0
Prilosec 8.57% (3)
Prevacid 2.86% (1)
Reglan 14.29% (5)
Motilium: 8.57% (3)
Other: 14.29% (5)
(35 replies)
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Propulsid: 5% (4)
Reglan: 17.28% (14)
Motilium: 3.7% (3)
Erythromycin: 2.46% (2)
Zantac: 16% (13)
Tagamet: 2.46% (2)
Pepcid: 3.7% (3)
Sulcrafate: 1.23% (1)
Prilosec: 11.11% (9)
Levasin: 0
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Does your child take any medications to help him/her sleep?
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Yes: 27.6% (16)
No: 67.2% (39)
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Yes: 37.04% (10)
No: 62.96% (17)
(27 replies)
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Yes: 33.33% (27)
No: 62.96% (51)
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What medications does your child take to help him/her sleep
|
Not asked
|
Not asked
|
Chloral Hydrate: 17.28% (14)
Valergan: 3.7% (3)
Valium: 1.23% (1)
Benadryl: 3.7% (3)
Trazodone: 2.46% (2)
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Does your child take any laxatives?
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Yes: 48.3% (28)
No: 44.8% (26)
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Yes: 69.23% (18)
No: 30.77% (8)
(26 replies)
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Yes: 60.49% (49)
No: 38.27% (31)
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What Laxatives does your child take?
|
Not asked
|
Not asked
|
Miralax: 22.22% (18)
Dulcolax: 7.4% (6)
Glycerine suppositories: 25.92% (21)
Agarol: 2.46% (2)
Mineral Oil: 1.23% (1)
Colace: 6.17% (5)
Senekot:: 9.87% (8)
Lactulose: 7.4% (6)
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Does your child take any other medications?
|
Not asked
|
Not asked |
Yes: 38.27% (31)
No: 53.08% (43)
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What other medications does your child take?
|
Not asked
|
Not asked |
Baclofen for spasticity: 23.45% (19)
Saltropine for drooling: 1.23% (1)
Scopolamine patch for drooling: 2.46% (2)
Robinul for drooling: 7.4% (6)
Nilstatin for yeast infections: 9.87% (8)
DDAVP for Diabetes Insipidus: 7.4% (6)
Zertec for allergies: 1.23% (1)
Synthroid for Hypothyroidism: 3.7% (3)
Carnitor: 2.46% (2)
Rhinocort for allergies: 1.23% (1)
Claritan for allergies: 7.4% (6)
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Does your child take medication to relieve spasticity?
|
Not asked
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Yes: 37.04% (10)
No: 62.96% (17)
(27 replies)
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See section on Other Medications
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What is the first medication your
child was put on for seizure control?
|
Not asked
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Dilantin 9.09% (1)
Phenobarb: 45.45% (5)
Lamotrigine: 9.09% (1)
Tegretol: 36.36% (4)
(11 replies)
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Not asked
|
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What medications are being used/have been used to relieve
spasticity in your child?
|
Not asked
|
