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Disability Tax Credit Time Tracker: Task Ideas for Medical Nutrition Therapy

Purpose: This page can help families and adults identify tasks that may be part of daily, weekly, monthly, or yearly medical nutrition therapy. Use the dropdowns below as prompts. Keep only the tasks that apply to your own care plan and remove anything that does not apply. The federal government requires that an individual complete 14 hours of therapy a week in order to apply. This document will help you see whether you have this or not.

This page is not medical, legal, or tax advice. It is a planning support tool to help you think through the time spent on therapy-related tasks. Your clinic, accountant, or qualified advisor can help you decide what is appropriate for your situation.

Before you begin Disorder-specific notes Task dropdowns Tracking your time

Before you begin

Personalize the tracker before entering time. Replace placeholder wording with the full name of the disorder, the acronym, and the amino acid or other metabolite your body is unable to process. For example, PKU may reference phenylalanine, while other disorders may require different wording.

Enter time in minutes. Place the time in the frequency column that best matches how often the task happens: daily, weekly, monthly, or yearly. Delete lines that do not apply.

Disorder-specific notes

Disorder or situation	How to use the task list
PKU	Many nutrition, formula, medical food, grocery, bloodwork, clinic, school, work, travel, and education tasks may apply. Do not include specialist tasks such as optometry unless they are part of the person's documented care plan.
HCU	Nutrition therapy, formula, medication, vitamins, clinic monitoring, bloodwork, bone health, vision or optometry, vascular, kidney, cardiology, and other specialist tasks may apply depending on the person's care plan.
MSUD	Nutrition therapy, formula, emergency planning, illness management, bloodwork, clinic monitoring, neurological care, MRI, travel planning, and specialist follow-up may apply depending on the person's care plan.
UCDs	Nutrition therapy, medication, emergency planning, ammonia-related monitoring, clinic follow-up, neurological care, liver or GI care, nephrology, MRI, and other specialist tasks may apply depending on the person's care plan.
Children, youth, school, daycare, camp	Parent and caregiver tasks, school planning, camp planning, IEP or educational supports, teaching, supervision, lunch and snack planning, bullying or inclusion support, and emergency-care communication may apply.
Adults	Use the self-management, work, clinic, tracking, grocery, travel, education, advocacy, and specialist sections. Remove parent-only lines unless another caregiver is providing that support.

Task dropdowns

Having what you need

Scrutinizing and purchasing proper vessels and tools to make, store, measure and consume medical formulaRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Monitor/Planning and keeping track of stock
Ordering medical formula and medical foods on a regular basis from specialized supplier or warehouse (by phone, on-line, in person)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Arranging delivery of medicine (Eg. Kuvan) delivery including confirming delivery address, being available to accept delivery, keeping track of current supply & updating current weight for prescription
Arrival of Medical Foods and Formulas: Delivery, unpacking, labeling and storing medical food (perishable and non-perishable) and medical formula, rotating stockRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Scrutinizing and selecting vitamins without gluten or aspartame (no the relevant amino acid marker), and with zinc, iron, magnesium, vitamin D, Omega, calcium etc. (and are palatable)
Time spent on managing the shortages that have affected the your disorder community such as medical formula and medical foods such as natural protein restricted (low protein) pastaRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.

In the Kitchen

Measurement of prescribed medical formula powder to create a medical formula drinkRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Measurement and noting times when formula has not been fully consumed (e.g., illness)
Modification of recipes to make natural protein restricted (low protein) version, finding recipes, calculating protein and calories per serving size for those new recipesRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Planning/preparation/cooking to have natural protein restricted (low protein) options on hand by using specialized raw ingredients to create additional staple foods for low-protein therapy (bread, muffins, crackers, cookies etc)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Daily meal planning to ensure correct grams of protein is distributed between all meals & snacksRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Measurement/weighing of "Green" food in preparation of each meal or snack
Measurement/weighing of "Yellow" food in preparation of each meal or snack
Preparation/cooking for the medical food which is protein-restricted (not including the time for any non-medical foods available at a grocery store) On a daily basis but also special occasions like potlucks, holidays, school/work parties.Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Measurement/weighing of food actually consumed at each meal or snack at home to determine accurate protein and calorie intake (planned minus not consumed/left over)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Calculate daily protein and calorie consumption from entire day to determine what protein, if any, is allowed and what calories needed for evening snack (adjusting calorie needs according to exercise that day)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Making adjustments to the daily intake in consideration of additional physical activity.

Consumption of medical necessary foods, formulas, and supplements

Measurement, Preparation and consumption of prescribed medicine specifically for the treatment of your disorder (for person with rare)
Parent: Supervision of Measurement, Preparation and consumption of prescribed medicine specifically for the treatment of your disorderMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Consumption of medical foods for natural protein restricted (low protein) therapy (for person with rare)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Parent: Supervision of consumption of medical foods for natural protein restricted (low protein) therapy.Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Consumption of medical formula for a natural protein restricted (low protein) therapy (for person with rare)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Parent: Supervision of medical formula consumed for natural protein restricted (low protein) therapyMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Administration of daily vitamins (multi-vitamin, Omega, Vitamin D in winter) due missing nutrients in the medically modified treatment plan (for person with rare)
Parents: Supervision of consumption of daily vitamins (multi-vitamin, Omega, Vitamin D in winter) due missing nutrients in the medically modified treatment planMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Implementation of strategies when the medical formula begins to be unpalatable (e.g., flavourings, flavour straws, verbal strategies)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Management of Headache care (related to your disorder) - treatment, providing medication when needed, educating about link between headaches and your disorder therapy (e.g., calorie intake)

School/DayCare/Camp Programming

Parent: Communication and planning with school staff and camp staff regarding child's medical condition at the start of the year to ensure a good start.Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Parent: Communication and planning with school staff and camp staff regarding child's medical condition during the year or duration of activityMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Creation, Implementation, Review of IEP or Educational Assessments for supports due to increased likeliness of learning disabilities as a result of your disorder
Parent: Communication and meetings with teacher/school principal prior to longer trips/sleepover trips, packing and preparing food portions prior to such school tripsMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Parent: Communication with teachers, parents, peers regarding any bullying and exclusion situations related to the medical conditionMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Parent: Assisting with homework (due to inconsistent focus at school), re-teaching, arranging for a tutor, spending time organizing workMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Parent: Deciding and measuring school/camp snacks and lunch every week day (before and after school or summer camp)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Implementation of strategies, treatments, self-monitoring to manage anxiety, obsessive-compulsive behaviours, learning disabilities, dyslexia, ADHD, anxiety, depression, emotional regulation, and attention/executive functioning concernsInclude if ADHD assessment, treatment, accommodations, or appointments are connected to the person's daily functioning and care.

Work

Implementation of strategies, treatments, self-monitoring to manage anxiety, obsessive-compulsive behaviours, learning disabilities, dyslexia, ADHD, anxiety, depression, emotional regulation, and attention/executive functioning concernsInclude if ADHD assessment, treatment, accommodations, or appointments are connected to the person's daily functioning and care.
Making adjustments/requests to have food modified for special events, appreciation dinner etc
Booking time off work for other medical appointments/obligations like bloodwork.Relevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.

Grocery Stores

Staying up to date on changes to foods available in a grocery store to help locate more affordable alternatives/available items to medical foods which may assist in decreasing the financial burden of living with your disorderRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Checking labels when shopping, determining and calculating protein and calories in foods (looking for natural protein restricted (low protein) items with high calories)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Continuing to keep an eye on product changes to items that can be purchased in stores to ensure that no changes have been made to ingredient lists which affect the protein balance that we are expecting it to haveRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.

Clinic Appointments

Preparation for attending IN PERSON clinic appointment (List what you do eg. Make hotel arrangements, arrange special travel, complete 3 day detailed food records including accurate measurements of all foods consumed - not just counted proteins) notify school/daycare/work, prepare travel foods etc)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Clinic appointment IN PERSON with metabolic dietitian (not the visit for seeing the whole team) (for person with rare)Relevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Parent: Time spent regarding IN PERSON Clinic appointment with metabolic dietitian (Not the visit for seeing the whole team)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Clinic appointment IN PERSON with metabolic team (Physician, dietitian, social worker, nurse) (for person with rare)Relevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Parent: Time spent regarding IN PERSON Clinic appointment with metabolic team (Physician, dietitian, social worker, nurse etc)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Time away from home for travel to and from IN PERSON Annual Clinic Appointment (for person with rare) (Remove the duration of actual appointment time)Relevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Parent: Time away from home for travel to and from IN PERSON annual clinic appointment. (Remove the duration of the above noted actual appointment time)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Preparation of VIRTUAL annual clinic by recording and sending in 3 days worth of detailed food records including accurate measurements of all food consumed (not just counted protein)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Time spent on a VIRTUAL appointment with the clinicRelevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Parent: Time spent on a VIRTUAL appointment with the clinicMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Communication with clinical dietitian: (via phone or email) regarding formula recipe, medical food, formula and pharmaceutical prescription, weight and height growth, allotted protein intake, calorie requirements, vitamins. (adjusting medical treatment of daily protein allowance & updating weight when needed)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.

Tracking and Accountability

Tracking food on a daily basis using an app called HowMuchthe relevant amino acid marker or a daily journal
Parent: Teaching child about conducting home blood tests and interpreting blood the relevant amino acid marker results (green-yellow-red zones)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Special Trips to hospital/lab/clinics for bloodwork or tests (for person with rare)Relevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Parent: Special Trips to hospital/lab/clinics for bloodwork or testsMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Conducting AT HOME blood tests & preparing for delivery to lab (collecting blood on card, filling out blood dot card & labeling envelope) (for person with rare)Relevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Parent: Time spent assisting child with conducting AT HOME blood tests and preparation for delivery to the labMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Time spend deliverying blood spot cards - whether sending via post or delivering to labRelevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Receiving and Examination of blood the relevant amino acid marker level results via phone, email and/or post to assess levels and changes if requiredRelevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Making any adjustments to planners, notes, journals of changes for others to be able to help manage

Going Away

Preparation/Planning for anticipating travel away from home (clinic letter, contacting airlines re: food travel, airport security, hotel staff re: equipment, refrigeration)Relevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Preparation/Measuring of medical foods and formula for travel away from home (preparing, measuring & storing food in luggage for duration of the trip)Relevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.

Teaching the Child with Rare

Parent: Educating the importance of asking before eating to ensure the right foods are consumed.Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Parent: Educating child about the importance of protein/the amino acid(s) affected by your disorder control, ingestion of medical formula, and need for sufficient caloriesMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Parent: Teaching how to maintain a low-protein therapy (allowable foods, measuring foods, teaching how to use the food scale, tracking protein, preparing formula & how to talk to friends and family about it)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Parent: Teaching the child how to prepare/cook/bake natural protein restricted (low protein) items in the kitchen. How to adapt recipes etcMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Child Attending your disorder workshops (education, cooking, therapy, support)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.

Teaching yourself (Parent or individual with Rare)

Attending your disorder workshops hosted by organizations (education, cooking, therapy, support)
Attending your disorder workshops hosted by clinics (education, cooking, therapy, support)Relevant when clinic monitoring, bloodwork, food records, or dietitian communication is part of the care plan.
Attending online groups/workshops (education, cooking, therapy, support)
Self Education on living with your disorder and the evolution of science and treatment options

Teaching others about Rare

Time spent explaining your disorder to other doctors (family, pediatrician, emergency)
Advocacy regarding issues that are a direct result of living with your disorder
Communication with family/friends members in preparation for gatherings, parties, birthdays, holidays, ensuring there is appropriate food
Parent: Communication with family/friends members in preparation for sleepovers or emergency care ensuring someone knows how to help your child if you cannot (written, verbal, etc)Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Communication with waitresses/restaurants etc. re: your disorder, protein content of foodsRelevant for disorders where medical nutrition therapy, formula, medical foods, protein restriction, or amino acid tracking is part of the care plan.
Time spent on insurance forms, requests, updates etc.
Parent: The additional time spent with an occasional babysitter (night off, not daily care) to ensure the needs of the child are met appropriately to manage their conditionMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.

Appointments - Additional Specialist

Self: Time spent on appointments for ADHD as a result of living with your disorder (not mentioned above)Include if ADHD assessment, treatment, accommodations, or appointments are connected to the person's daily functioning and care.
Time spent on appointments for ADHD as a result of your disorder (not mentioned above)Include if ADHD assessment, treatment, accommodations, or appointments are connected to the person's daily functioning and care.
Time spent on appointments for Anxiety as a result of living with your disorder (not mentioned above)Include if anxiety support, treatment, or appointments are part of the person's care needs.
Parent: Time spent on appointments for Anxiety as a result of your disorderInclude if anxiety support, treatment, or appointments are part of the person's care needs.
Time spent on appointments for Depression as a result of living with your disorderInclude if depression support, treatment, or appointments are part of the person's care needs.
Parent: Time spent on appointments for Depression as a result of your disorderInclude if depression support, treatment, or appointments are part of the person's care needs.
Time spent on appointments for Dyslexia as a result of living with your disorderInclude if learning support, assessment, or appointments are part of documented needs.
Parent: Time spent on appointments for Dyslexia as a result of your disorderInclude if learning support, assessment, or appointments are part of documented needs.
Time spent on appointments for emotional dysregulation of care as a result of living with your disorder
Parent: Time spent on appointments for emotional dysregulation of care as a result of your disorderMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Time spent on appointments for executive function dysregulation of care as a result of living with your disorder
Parent: Time spent on appointments for executive function dysregulation of care as a result of your disorderMost relevant for parents, caregivers, children, youth, school, daycare, or camp situations.
Time spent on appointments/treatments for living with a learning disability as a result of living with your disorder (not mentioned above)Include if learning support, assessment, tutoring, accommodations, or appointments are part of documented needs.
Parent: Time spent on appointments/treatments for living with a learning disability as a result of your disorder (not mentioned above)Include if learning support, assessment, tutoring, accommodations, or appointments are part of documented needs.
Time spent on appointments for Obsessive-compulsive behaviours care as a result of living with your disorderInclude if OCD-related care or appointments are part of documented needs.
Parent: Time spent on appointments for Obsessive-compulsive behaviours care as a result of your disorderInclude if OCD-related care or appointments are part of documented needs.
Time spent on appointments/support and care due to Visual Impairments care as a result of living with your disorderUsually more relevant for HCU or anyone with documented vision concerns. Do not include for PKU unless it is part of the person's care plan.
Parent: Time spent on appointments/support and care due to Visual Impairment care as a result of your disorderUsually more relevant for HCU or anyone with documented vision concerns. Do not include for PKU unless it is part of the person's care plan.
Time spent on appointments/support and care due to Physical Impairments care as a result of living with your disorder (Help getting dressed, feeding etc)Include if physical assistance, mobility support, feeding support, dressing support, therapy, or appointments are part of documented needs.
Parent: Time spent on appointments/support and care due to Physical Impairments care as a result of your disorder (Help getting dressed, feeding etc)Include if physical assistance, mobility support, feeding support, dressing support, therapy, or appointments are part of documented needs.
Alternate Caregiver: Time spent on appointments/support and care due to Physical Impairments care as a result of your disorder (Help getting dressed, feeding etc)Include if physical assistance, mobility support, feeding support, dressing support, therapy, or appointments are part of documented needs.
Time spent on appointments/treatment for Epilepsy as a result of living with your disorderMay be relevant for MSUD, UCDs, or anyone with seizures or seizure monitoring.
Parent: Time spent on appointments/treatment for Epilepsy as a result of your disorderMay be relevant for MSUD, UCDs, or anyone with seizures or seizure monitoring.
Time spent on appointments/treatment for Diabetes as a result of living withyour disorderInclude only if diabetes care is connected to the person's medical plan or complications.
Parent: Time spent on appointments/treatment for Diabetes as a result of your disorderInclude only if diabetes care is connected to the person's medical plan or complications.
Time spent on appointments/treatment for Eczema as a result of living with your disorderInclude only if treatment or appointments are connected to the person's medical plan.
Parent: Time spent on appointments/treatment for Eczema as a result of your disorderInclude only if treatment or appointments are connected to the person's medical plan.
Time spent on appointments/treatment due to a Hearing Impairment as a result of living with your disorderInclude only if hearing care is part of the person's documented needs.
Parent: Time spent on appointments/treatment due to a Hearing Impairment as a result of your disorderInclude only if hearing care is part of the person's documented needs.
Time spent on appointments/treatment for High Blood Pressure as a result of living with your disorderMay be relevant for HCU, kidney care, vascular risk, or other clinic-directed monitoring.
Parent: Time spent on appointments/treatment for High Blood Pressure as a result of your disorderMay be relevant for HCU, kidney care, vascular risk, or other clinic-directed monitoring.
Time spent on appointments/treatment for Hypertonia as a result of living with your disorderMay be relevant for MSUD, UCDs, neurological symptoms, or mobility-related therapy.
Wellness:Parent: Time spent on appointments/treatment for Hypertonia as a result of your disorderMay be relevant for MSUD, UCDs, neurological symptoms, or mobility-related therapy.
Time spent on appointments/treatment for Migraines as a result of living with your disorderInclude where headaches or migraines are part of documented care related to the disorder or treatment plan.
Parent: Time spent on appointments/treatment for Migraines as a result of your disorderInclude where headaches or migraines are part of documented care related to the disorder or treatment plan.
Time spent on appointments/treatment for Neurological Symptoms as a result of living with your disorderMay be relevant for MSUD, UCDs, HCU, or anyone with documented neurological symptoms.
Parent: Time spent on appointments/treatment for Neurological Symptoms as a result of your disorderMay be relevant for MSUD, UCDs, HCU, or anyone with documented neurological symptoms.
Time spent on appointments/treatment for Bone Health as a result of living withyour disorderMay be relevant for HCU, PKU, MSUD, UCDs, or anyone whose clinic monitors bone health, nutrition, mobility, or long-term therapy effects.
Parent: Time spent on appointments/treatment for Bone Health as a result of your disorderMay be relevant for HCU, PKU, MSUD, UCDs, or anyone whose clinic monitors bone health, nutrition, mobility, or long-term therapy effects.
Time spent on appointments/treatment for Osteoporosis management as a result of living with your disorderMay be relevant where osteoporosis or low bone density is being monitored or treated.
Parent: Time spent on appointments/treatment for Osteoporosis management as a result of your disorderMay be relevant where osteoporosis or low bone density is being monitored or treated.
Wellness:Time spent on appointments/treatment of Cirrhosis as a result of your disorderMay be relevant for some UCDs or liver-related care plans. Only include if this applies to the person.
Parent: Time spent on appointments/treatment of Cirrhosis as a result of your disorderMay be relevant for some UCDs or liver-related care plans. Only include if this applies to the person.
Time spent on appointments/treatment at a GastroIntestinal Specialist for reasons not mentioned above as a result of your disorderMay be relevant for UCDs, MSUD, HCU, PKU, feeding issues, formula tolerance, constipation, reflux, or other GI concerns.
Parent: Time spent on appointments/treatments at a GastroIntestinal Specialist for reasons not mentioned above as a result of your disorderMay be relevant for UCDs, MSUD, HCU, PKU, feeding issues, formula tolerance, constipation, reflux, or other GI concerns.
Time spent on appointments/treatments at a Nephrologist for reasons not mentioned above as a result of your disorderMay be relevant for UCDs, HCU, medication monitoring, kidney stones, high blood pressure, or kidney-related concerns.
Parent: Time spent on appointments/treatments at a Nephrologist for reasons not mentioned above as a result of your disorderMay be relevant for UCDs, HCU, medication monitoring, kidney stones, high blood pressure, or kidney-related concerns.
Time spent on appointments/treatments at an Optometrist as a result of living with your disorder (Not listed above)Usually more relevant for HCU or anyone with documented vision concerns. Do not include for PKU unless it is part of the person's care plan.
Parent: Time spent on appointments/treatments at the Optometrist care as a result of your disorder (Not listed above)Usually more relevant for HCU or anyone with documented vision concerns. Do not include for PKU unless it is part of the person's care plan.
Time spent on appointments/support/treatment and care for Ultrasonic care as a result of your disorder (for person with rare) (for reasons not mentioned above)May be relevant when ultrasound imaging is part of the person's care plan, such as liver, kidney, vascular, or abdominal monitoring.
Parent: Time spent on appointments/support/treatment and care for Ultrasonic care as a result of your disorder (for reasons not mentioned above)May be relevant when ultrasound imaging is part of the person's care plan, such as liver, kidney, vascular, or abdominal monitoring.
Time spent on appointments/treatment for MRI as a result of your disorder (for person with rare) (for reasons not listed above)May be relevant for MSUD, UCDs, neurological symptoms, stroke-like episodes, or clinic-directed monitoring.
Parent: Time spent on appointments/treatment for MRI as a result of your disorder (for reasons not mentioned above)May be relevant for MSUD, UCDs, neurological symptoms, stroke-like episodes, or clinic-directed monitoring.
Time spent on appointments with a Cardiology specialist as a result of living with your disorder (for reasons not mentioned above)May be relevant for HCU, high blood pressure, vascular concerns, or a clinic-directed heart assessment.
Parent: Time spent on appointments with a Cardiology specialist as a result of your disorder (not listed above)May be relevant for HCU, high blood pressure, vascular concerns, or a clinic-directed heart assessment.
Any other time spent with specialists for reasons not listed above as a result of living with your disorder (not listed above) Please explain:
Parent: Any other time spent with specialists for reasons not listed above as a result of your disorder (not listed above) Please explain:Most relevant for parents, caregivers, children, youth, school, daycare, or camp situations.

Tracking your time

Tracking reminder: Record one time amount per task. Use minutes, not hours. Choose the frequency that best matches the activity. For example, use daily for tasks that happen every day, weekly for weekly planning, monthly for clinic or ordering tasks, and yearly for annual appointments, travel, or forms.

The spreadsheet can then calculate weekly totals from the daily, weekly, monthly, and yearly entries. Keep comments for anything unusual, such as shortages, travel, illness, school trips, treatment changes, or extra clinic communication.

Last updated: May 2026. If you notice information that should be updated, please contact website@canpku.org.