Today M-D-Y
Today M-D-Y
What is the age of your child?
* must provide value
0 to 2 years 2 to 4 years 4 to 5 years 5 to 6 years 6 to 12 years Over 12
Male Female
Is this your first, second, third...child?
please specify
SSADH Deficiency
GABA-T Deficiency
AADC Deficiency
Other
Please Specify 'Other' Diagnosis:
Father of Patient's Name:
Mother of Patient's Name:
Email Address:
* must provide value
Name of Referring Physician:
Referring Physician Email Address:
Referring Physician's Hospital:
Lives at home with parents/guardians Lives in a separate household but not independently Lives in a separate household independently Lives in a special institution/nursing home
If the patient no longer lives with parents please enter approximate date when the patient moved out:
Today M-D-Y
Educational Profile of Patient:
Did not attend school.
Attended a school for children with special needs.
Attended regular school, and was part of a special program
Attended regular school
Patient has not reached school age
Highest Level of Education Achieved:
Primary School
Secondary School
High School/High School Equivalent
College
Age at Onset of Disorder:
Birth-6 Months
6-12 Months
1-2 Years
2-4 Years
4-6 Years
7-12 Years
Over 12 Years
Unknown/NA
Birth-6 Months
6-12 Months
1-2 Years
2-4 Years
4-6 Years
7-12 Years
Over 12 Years
Unknown/NA
Neurological Symptoms: Please select all symptoms which apply
Please list other symptoms:
Autonomic Symptoms: Please select the symptoms which apply
How many bowel movements does your son or daughter pass per week?
sweats excessively
decreased sweating
Excessive salivation, drooling
Decreased salivation, frequent dry mouth
always thirsty
never thirsty, force to drink water
How many glasses of water does your son or daughter drink per day?
Does your child have virtually constant stuffy or runny nose, or frequent nasal discharge?
Yes
No
Does your child show any evidence of bone deformity or frequent fractures (e.g., scoliosis/curved spine, kyphosis/bulging spine)?
Yes
No
Does your child show very frequent fever or other signs of inflammation, more so than his or her siblings and/or peers?
Yes
No
Fine Motor Abilities:Reference: Eliasson AC et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurology 2006; 48:549-554.
No limitations
Level I (mild limitations): Handles objects easily and successfully but slight limitation with precision and hand coordination. May need adult assistance when handling objects compared to other children of the same age. Limited in holding very small, very heavy, or fragile objects.
Level II (mild to moderate limitations): Handles most objects, but with somewhat reduced quality or speed. May use alternative strategies, such as using only one hand instead of both or switching hands, or use a hard surface for support instead of both hands.
Level III (moderate limitations): Handles objects with difficulty and slowly; often needs help by having objects placed in front of him/her.
Level IV (moderate to severe limitations): Handles a limited selection of objects; needs constant adult help; at best, can perform simple actions: grasping or releasing objects.
Level V (severe limitations): Does not handle objects and has severely limited ability to perform even simple actions. At best, can push, touch, press, or hold on to a few simple items.
Gross Motor Abilities (Age up to 2nd Birthday):Reference: Palisano R et al. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurology 1997; 39: 214-23.
No limitations: Reached all developmental milestones for age without delay.
Level I (mild limitations): Sits on the floor, crawls, holds onto and "cruises" furniture, and holds objects in both hands without assistance.
Level II (mild to moderate limitations): Relies on hands or the assistance of others when sitting upright on the floor. Can crawl on hands and knees.
Level III (moderate limitations): Needs continuous lower back support and assistance in order to sit up, but able to move forward ("creep") while prone (on the abdomen).
Level IV (moderate to severe limitations): Able to roll back and forth without assistance, but needs adult help to sit up.
Level V (severe limitations): Voluntary control of limbs is limited. Requires assistance in sitting up, rolling over, and holding the head up.
Gross Motor Abilities (2 years - 4th Birthday):
No limitations
Level I (mild limitations): Some delay or hypotonia (low muscle tone). Walks without assistance, and can sit easily while holding objects in both hands without assistance.
Level II (mild to moderate limitations): Requires assistance while sitting upright on the floor, may begin to hold himself/herself up via furniture and cruise (walks along furniture).
Level III (moderate limitations): Crawling is the preferred method of moving around, using hands and knees. Sits up unsupported, but in a "W" position with knees rotated and legs facing backwards.
Level IV (moderate to severe limitations): Sits up alone, but needs to use hands and arms to maintain position. Needs adaptive equipment for sitting and standing. Crawling preferred method for movement.
Level V (severe limitations): Extremely limited mobility. Needs assistance in all areas of movement.
Gross Motor Abilities (4 years - 6th Birthday):
No limitations
Level I (mild limitations): Some balance and coordination difficulty. Sits down and stands up without assistance; climbs stairs; emerging ability to run and jump.
Level II (mild to moderate limitations): Needs help with walking (aside from short distances) and may need to hold onto a table or furniture. Unable to skip, hop, or jump. Able to sit in a chair without assistance and climb stairs with assistance (railing).
Level III (moderate limitations): Walking requires assistance, either from an adult or a mobility assistance device. Sits with trunk support, lifts self up while holding onto something sturdy; can climb stairs with assistance.
Level IV (moderate to severe limitations): Walks short distances with adult supervision; needs to be monitored because of balance and coordination issues. Needs trunk support while sitting.
Level V (severe limitations): Can sit alone in chairs, but needs assistance to protect from falling. Needs assistance in all areas of mobility.
Gross Motor Abilities (6+ years):
No limitations
Level I (mild limitations): Speed, balance, and coordination are reduced. Runs, jumps, climbs stairs, and walks without assistance.
Level II (mild to moderate limitations): Minimal ability to run and jump. Needs assistance when climbing steps (needs railing) or walking on uneven surfaces or an incline. Otherwise able to walk indoors and outdoors with little to no help.
Level III (moderate limitations): Able to walk indoors and outdoors with the assistance of a mobility device (ex - walker, cane). Climbs stairs using handrails or with assistance . Cannot walk long distances.
Level IV (moderate to severe limitations): Using mobility assistance, such as wheelchair, more so than before.
Level V (severe limitations): Mobility is extremely limited. Dependent upon others for movement.
Age when Absence Seizures First Occurred:
months
Age when Generalized Seizures First Occurred:
months
Age when Myoclonic Seizures First Occurred:
months
Age when Atonic Seizures First Occurred:
months
Age when Simple Partial/Focal with Intact Awareness Seizures First Occurred:
months
Age when Complex Partial/Focal with Impaired Awareness Seizures First Occurred:
months
Age when Status Epilepticus First Occurred:
months
Age when Other Seizures First Occurred:
months
Typical Length of Seizure:
Unknown 1 Minute or less 1-5 Minutes Over 5 Minutes
Frequency of Seizures (please specify days/weeks/months/years):
please answer as ## per month/week/day
Does the Patient take any Medication for Seizures:
Yes
No
Siblings First Cousins Second Cousins Other
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