Topics Include: Expecting to Transition - Reframing the Journey presented by Amy Miller, MSN, MA, PCNS-BC, ACHPN, Individual Education Program (IEPs) presented by Dena Hook, Telling Your Story presented by Patricia Moore and Dietary Therapies: Creative Strategies presented by Stephanie Criteser, RD, CSP and Natalie Cummings, RD

2. EXPECTING TO
TRANSITION: REFRAMING
THE JOURNEY
AMY BRIN MILLER, MSN, MA, PCNS-BC, ACHPN
EXECUTIVE DIRECTOR
CHILD NEUROLOGY FOUNDATION
WWW.CHILDNEUROLOGYFOUNDATION.ORG

3. CNF’S TRANSITION INITIATIVE IS CO-SPONSORED WITH EISAI.
DISCLOSURES

4. EVERYONE IS MY TEACHER. SOME I SEEK. SOME I
ATTRACT BECAUSE OF WHAT I MUST LEARN.
YOU MIGHT BE UNAWARE OF WHAT YOU TEACH
ME. I BOW DEEPLY TO YOU IN MY GRATITUDE
FOR WHAT YOU HAVE TAUGHT ME.
NEESHIA JASMARA

5. WHAT I HOPE OUR CONVERSATION TODAY WILL GIVE
YOU:
 Have a working understanding of the term medical transition
 Be aware of the CNF’s Transition Initiative, and how it may be of help to you
 Begin to understand your role in expecting your loved one deserves a successful
transition
 Identify strategies to help you begin to establish your expectations related to
medical transition
 Reflection on what a successful transition will mean to you and your life’s
‘organization’

6. LET’S LAY THE GROUNDWORK.

7. UNDERSTANDING THE VOCABULARY.
 Medical transition: The expected process (beginning in early
adolescence) to prepare children to receive care within the adult
system. **Includes caregivers.
 Social transition: The expected process (beginning in early
adolescence) to prepare children to live as independently as able.
**Includes caregivers.
 Transfer: The defined act of one provider handing over care to
another provider (i.e. intensivist to pediatrician, child neurologist to
adult neurologist).

8. DECLINE IN HEALTH DURING TRANSITION
• Renal transplant loss Andreoni et al. 2013
• Sickle cell disease complications Blinder et al. 2013
• Increasing obesity Lee et al. 2011
DECLINE IN HEALTH CARE DURING TRANSITION
• Worsened adherence Annunziato et al. 2007
• Decreased follow-up Devernay et al. 2009
• Lapses in insurance coverage Goudie et al. 2011
UNDERSTANDING THE SIGNIFICANCE.

9. UNDERSTANDING THE NUMBERS.
 1 in 6 U.S. children live with
neurologic disease
 18 million; 18-21 yo in U.S. will be
moving into adult healthcare
system in 2013
 Only 40% of youth report (or per
caregiver report) discussing
transition with a healthcare
providers
 One third or more of children
with epilepsy will continue to
have seizures through
adulthood and ˜20% never
have a period of remission.
 70% - 80% of children with
epilepsy have cognitive,
behavioral, or psychological
comorbidities.
Beghi, Camfield, & Camfield; 2014

10. UNDERSTANDING BARRIERS.
 Patients, parents/caregivers unwilling to transition
 Adult providers lack experience
 Adult providers difficult to access
 Difference in pediatric vs adult culture
 Aging out, but still youth is unready/ unwilling to take adult responsibility
 Insurance changes
 Transportation/ Access
 Patient seen by multiple providers without a medical home (fragmentation of care)
 No time to discuss transition

11. UNDERSTANDING TRANSITION CONSIDERATIONS:
LENNOX-GASTAUT SYNDROME
 Intellectual disability
 Intractable epilepsy
 Complex co-morbidity needs (CP, hip dysplasia, metabolic, gastrostomy, bone
density)
Camfield, PR., Bahi-Buisson, N., & Trinka, E. 2014. Transition issues for children with diffuse cortical malformations, multifocal postnatal lesions, Lennox-Gastaut
and similar syndromes. Epilepsia. 55(3); 24-28.

12. UNDERSTANDING PROVIDER PAST RESPONSE.
• American Academy of Pediatrics, American Academy of Family Physicians and American
College of Physicians = Primary care providers
• Consensus statement provides EXPECTATIONS of primary care providers role in health care
transitions
 Practical, detailed guidance on how to plan and implement better health care
transitions for all patients (algorithm)
 Integrating transition planning into medical home care with ongoing chronic care
management
 Called for specialist providers to outline same detailed guidance
American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group Pediatrics
2011;128:182-200.

13. A Health care transition-planning algorithm for all youth and young adults within a medical home
interaction
©2011 by American Academy of Pediatrics

14. REMEMBER THE CALL TO SPECIALTY
COMMUNITY?
NEUROLOGY WILL BE THE FIRST TO FORMALLY RESPOND.

15. NEUROLOGY COMMUNITY RESPONSE.
 “The Neurologist’s Role in
Supporting Transition to Adult
Health Care: A consensus
statement.” (pending publication)
 Endorsed by Child Neurology Society,
American Academy of Neurology,
American Academy of Pediatrics
 Author panel: child and adult
neurologists, med/ped physician,
nurse, occupational therapist, patient,
caregiver, and medical informatician
 Content:
 8 Common Principles
 5 disease-specific vignettes
illustrating Core Principles
implementation

16. COMMON PRINCIPLES
YOUR TOOL TO SETTING EXPECTATIONS FOR YOUR NEUROLOGY PROVIDER.

17. COMMON PRINCIPLE – 1.
The child neurology team discusses with the youth and
caregiver(s) the expectation of the future transition to the
adult health care system. This discussion should be initiated
early and documented no later than the youth’s 13th
birthday.

18. COMMON PRINCIPLE – 2.
The child neurology team assures that an assessment of the
youth’s self-management skills begins at age 12 and
continues on an annual basis. These assessments should be
documented in the medical record and communicated to
other health care providers.

19. COMMON PRINCIPLE – 3.
The child neurology team engages each youth and his/her
caregiver(s) in phased transition planning, patient education,
and transfer readiness at least annually at scheduled visits,
beginning at age 13 years. Yearly planning sessions address:
(1) the youth’s medical condition
(2) current medications and potential side-effects
(3) signs and symptoms of concern
(4) genetic counseling and reproductive implications of the condition (5)
issues of puberty and sexuality
(6) driving, alcohol and substance use, and other risks
(7) emotional/psychological concerns and wellness

20. COMMON PRINCIPLE – 4.
The child neurology team
(1) initiates discussion by age 14 years with the caregivers regarding the youth’s
expected legal competency (whether there is a need for legal guardianship and
powers of attorney)
And
(2) documents an assessment (including an assessment of typical decision
making capacity and legal competency) in the medical record. If the youth’s
expected legal competency is unclear, an assessment of that capacity should be
made annually. The team supports interventions to maximize the youth’s
decision-making ability and assists caregiver(s) to address the legal implications
of the assessment.

21. COMMON PRINCIPLE – 5.
By age 14, the child neurology team assures a transition plan
that meets the comprehensive needs of the youth is developed
in collaboration with the youth, caregiver(s), other health care
providers, school personnel, vocational professionals,
community services providers, and legal services (as needed).
The plan addresses health care finance and legal concerns,
primary care, other specialty care, education to employment,
housing, and community services. The child neurology team
reviews and assures the adequacy of the transition plan
annually.

22. COMMON PRINCIPLE – 6.
The child neurology team develops and verifies the
neurological component of the transition plan of care and
updates it annually.

23. COMMON PRINCIPLE – 7.
The child neurology team, in collaboration with the youth
and caregiver(s), identifies appropriate adult provider(s) for
the neurological condition(s) before the anticipated time of
transfer. The child neurology team coordinates the transfer
utilizing the transfer packet.

24. COMMON PRINCIPLE – 8.
The child neurology team directly communicates with the
appropriate, identified adult provider(s) to ensure that the
identified provider agrees to accept the patient and an
appointment is made and kept. The child neurology team
documents the youth’s transfer into the medical record.

25. UNDERSTANDING HOW THE COMMON PRINCIPLES
APPLY TO LGS PATIENT & CAREGIVER.

26. CASE STUDY
• Lisa is a 12-year-old female with LGS. She is followed by a child
neurologist at an academic center. Lisa attends a special education
(life skills) school program; she is able to follow simple commands
and communicates with a few words supplemented by gestures.
She ambulates and feeds herself but otherwise needs assistance in
activities of daily living. Her mother is the primary caregiver with
some assistance from her stepfather; they do not receive any
nursing or community services.

27. APPLYING THE COMMON PRINCIPLES
1. Setting expectations | starting early: Lisa’s child neurologist initiates a discussion of transition of care with
her mother when she is 13 years old; together they decide that transfer of care will occur after Lisa’s 18th
birthday. A brochure outlining the neurology office’s transition policy and offering contact information for
questions is provided to the mother.
2-3. Continuous self-assessment: Over the next several years, transition issues are reviewed and addressed by
a member of the child neurology team during scheduled office visits. Given Lisa’s severe intellectual disability,
self-management skills are quite limited. At age 14, the family first hears about the legal need to establish
guardianship by the time Lisa is 18, as she is not expected to be able to manage her needs independently.
These discussions are documented in the medical record.
4. Legal competency: At a regular review of the transition plan when Lisa is age 15, the mother indicates she
has initiated the discussion of transition of care with some but not all of Lisa’s health care providers. She is
encouraged to continue working on this issue; and by the next year, when Lisa is 16 years old, her mother has
discussed transition of care with all providers and understands how they will assist in finding adult providers
for Lisa.

28. APPLYING THE COMMON PRINCIPLES
5. Comprehensive needs: A member of the neurology team reviews recent school testing and her individualized
educational plan (IEP), which will allow her to remain in school until she is 21 years of age. The mother states
that the family wishes to care for Lisa at home for the foreseeable future but inquires about the possibility of a
group home as Lisa becomes an adult and her parents age. Contact information for community resources is
provided. The mother is also informed that Lisa will need to recertify for Medicaid by adult criteria at the state’s
required age.
6. Transfer Packet: Between ages 17 and 18 years, the child neurologist outlines the neurological history,
including all current medications, previous antiepileptic drug regimens and why they failed, procedure dates,
and relevant diagnostic studies. The child neurologist communicates with Lisa’s pediatrician, who requests that
the neurology team coordinate the transition process. The child neurologist assembles a unified shared medical
summary and care plan, shares the first draft of this transfer packet with Lisa’s other providers, and confirms
that transition planning is ongoing in all subspecialty areas.

29. APPLYING THE COMMON PRINCIPLES
7. Identifying Adult Provider: Meanwhile, a member of the child neurology team looks for an adult
neurologist in the area. In addition, preparation for a court hearing regarding guardianship is underway. In
order to assist the judge on determining legal competency, the child neurologist completes state-specific
forms in conjunction with a licensed social worker and psychologist. A court hearing is held when Lisa is 18
1/2 years old, and her mother is named legal guardian.
8. Transfer: At the next office visit, at age 19, the child neurologist confirms that an accepting adult
neurologist has been located, and Lisa has a scheduled appointment. The mother’s knowledge about LGS,
medications, and seizure care are confirmed, and the child neurologist emphasizes that the family is welcome
to contact the office if further questions arise. A copy of the transfer packet is provided to the family, and
another one is sent to the accepting adult clinicians. After this last visit, a member of the child neurologist’s
team confirms receipt of Lisa’s transfer packet by the adult provider’s office.

30. ON TUESDAY - SET YOUR EXPECTATIONS!
 Get informed:
 www.gottransitions.org
 www.medicalhomeinfo.org
 http://www.childneurologyfoundation.org/patients-or-caregivers/transition-into-
adulthood/
 Begin dialogue with self, family, and youth regarding transition expectations (health care v.
social)
 Begin dialogue with your provider regarding transition expectations
 Reach out to your community – YOU ARE NOT ALONE!

32. WE ARE HERE SO YOU NEVER HAVE TO WALK ALONE.
AMILLER@CHILDNEUROLOGYFOUNDATION.ORG

34. Understanding the IEP Process
Dena Hook, Vice President of Outreach
Tuberous Sclerosis Alliance
801 Roeder Rd.
Silver Spring, MD 20910
dhook@tsalliance.org
1-800-225-6872

35. Members of the IEP Team
 Parents
 Special Education Teacher
 Regular Education Teacher
 District Representative*
 Student (when appropriate)
 Someone to Explain Evaluations
 Anyone Else Requested to be in the Meeting (OT, PT, SP)
Page 2

36. Exceptions …..
Regular Education Teacher Can Be Excluded when:
 Their area of curriculum is not being discussed
 The teacher gives written input into the meeting prior to the IEP
 Parents and district agree in writing that the teacher should not attend
Page 2

37. District Representative Criteria
A District Rep must:
 Supervise special education and/or teach special ed
 Be knowledgeable in the general education curriculum
 Be knowledgeable about and able to designate resources
Page 3

38. IEP Components
 Present Levels of Performance (PLOP)
 Measurable Goals
 Special Education Services
 Related Support Services
 Special Factors

39. Present Level of Performance
Academics
 Math Skills (at the child’s modified level)
 Reading Skills (at the child’s modified level)
Functional
 Self Care Skills
 Socialization
Understandable & Agreeable to Everyone
Page 4

40. Present Level of Performance
Does the PLOP:
 Provide level of functioning skill level grade/age level?
 Build a foundation for identifying needs, developing goals, and determining
services?
 Explain how the disability impacts progress in general education curriculum?
 Current evaluation information (date or time period)?
 Understandable to all of the IEP team?
“The PLOP is your Baseline for Your IEP Goals”
Page 5

41. Rule of Thumb #1
There should NEVER be a goal on an IEP that doesn’t have a
Present Level of Performance!!!
Page 5

42. Goals
Goals must be:
 Measurable and observable skills
 Support baseline data from the PLOP same unit of measure
 What action and/or how the student will do the action
 Expectations for achievement in one school year
 How it will be measured
 Progress understandable and agreeable to everyone
Page 5

43. Special Education and Related Services
 Speech-language
 Physical therapy
 Occupational therapy
 School health services
 Adaptive physical education
 Transportation (special support)
 Support services (aide, intervention services, resource room)
 Methodologies

44. IEP Specifics
Avoid:
 Services written in minutes for a
school year
 Services written in minutes for a
month
 Services will start after schedules
are developed
Avoid:
 Services written in minutes for a
school year
 Services written in minutes for a
month
 Services will start after schedules
are developed
 Mondays & Fridays as days services
are provided
Page 6

45. IEP Specifics
Support Service Time Location Service Provider
Speech Therapy 30 min. once a
week
Resource
Room/one on one
Speech Therapist
Support Service Time Location Service Provider
Speech Therapy 120 min. one to two
times a month
Classroom Teacher and Speech
Therapist
Not Specific
More Specific
Pages 6 & 7

46. Rule of Thumb #2
“If it is not written in the IEP it WILL NOT happen”

47. Special Factors
Behavior
“When a student’s behavior interferes with their learning or the learning of others
behaviors have to be addressed in an IEP”
 A Functional Behavior Assessment (FBA) must be done
 A Behavior Intervention Plan (BIP) must be developed by the IEP Team and incorporated
into the IEP
More Information:
Go to www.tsalliance.org clinic on “for school issues” go the bottom of the page and click,
download, and print the following publications:
 Understanding the Individuals with Disabilities Education Act “Parent’s Rights (pages 18-
23)
Page 9

48. Transition Plan
Must:
 Developed by age 16
 Have Outcome Oriented Goals
`To Look at achieving best quality of life
`What skills & resources are needed to achieve the best quality of
life

49. Age of Majority
Transfer of rights at age of majority. Beginning not later than one year before the child reaches
the age of majority under State law, the IEP must include a statement that the child has been
informed of the child’s rights under Part B of the Act, if any, that will transfer to the child on
reaching the age of majority under §300.520. [§300.320(c) IDEA
A State must establish procedures for appointing the parent of a child with a disability, or, if the
parent is not available, another appropriate individual, to represent the educational interests
of the child throughout the period of the child’s eligibility under Part B of the Act if, under
State law, a child who has reached the age of majority, but has not been determined to be
incompetent, can be determined not to have the ability to provide informed consent with
respect to the child’s educational program.

50. Questions and (Hopefully) Answers
“There is no such thing as a dumb question”

51. Survivors….
“Life is filled with unanswered questions, but it is the courage to seek those
answers that continues to give meaning to life. You can spend your life
wallowing in despair, wondering why you were the one who was led
towards the road filled with pain, or you can be grateful that you are strong
enough to survive it.”
J.D. Stroube

53. {
Telling
Your
Story
Patty Moore
Alpha Resource Center of Santa Barbara
April 30, 2016

54. Importance
Development
Presenting
Evaluating

55. Factual or Fictional Narrative: the
account of an event or series of events

56. Educates
Informs
and is only yours to
tell

57. Make abstract ideas real,
personal and concrete
Build a connection
Demonstrate larger
social successes
(and failures)
Positive Stories Create Change

58. One you love
to tell

59. Purpose or intent
Key character or subject
Presents outcome through challenge or success
Creates highpoint or climax
Can be detailed and visual
Includes 5 “W’s” and a how
Beginning, middle, end
Can be short and to the point

60. We are People First.

61. Your goals shape
your story.

62. What
do
you
want?

63. Who
What
When
Where
Why
How
?????

64. Developing your story.

66. Listen
Gather information
Filter the facts
Define what you want
Define what your child needs
Seek qualified resources
Be open
Articulate your goal
Determine flexibility
Say what you want to say
Respectfully
Listen

67. Family Voices of CA
www.familyvoicesofca.org
The Right Question Institute
www.rightquestion.org
Alpha Resource Center
www.alphasb.org
Patty Moore
pjmoore@alphasb.org
805.683.2145

69. STEPHANIE CRITESER, RD, CSP
NATALIE CUMMINGS, RD
CHELSEY STILLMAN, PA-C
JENNIFER OLIVER, CPNP
CHILDREN’S HOSPITAL COLORADO
Diet Therapies for Epilepsy

70. Disclosures
 No relevant financial or nonfinancial relationships to disclose.

71.  Define the basic concepts of the Ketogenic Diet and Modified Atkins
Diet.
 Be familiar with the side effects of diet therapies used to treat epilepsy.
 Provide useful tips for better acceptance of the Ketogenic Diet and
Modified Atkins Diet.
Objectives

72. The Ketogenic Diet - History
 Biblical origins mentioning fasting as a way to cure convulsions
 1921 – first year of U.S. reports regarding fasting as a way to provide
seizure control
 1920’s-1930’s – diet used widely
 1937 – discovery of diphenylhydantoin (Dilantin®) and decline of diet
therapy for epilepsy
 1993 – Charlie Abrahams started the Ketogenic Diet at Johns Hopkins
with Dr. Samuel Livingston and his dietitian, Millie Kelly.

73. The Ketogenic Diet
 “Tricking” the body into starvation mode
 Limit carbohydrate sources in the diet to minimize glucose production
such as…
 Instead, provide high fat diet to stimulate production of ketone bodies…

74. The Ketogenic Diet
 High in fat
 Adequate in protein
 Low in carbohydrate
55%
15%
30%
Typical American Diet Macronutrient Breakdown
Carbohydrate
Protein
Fat
3%
7%
90%
Ketogenic Diet Macronutrient Breakdown
Carbohydrate
Protein
Fat

75. How Does the Diet Reduce Seizures?
 It is unknown exactly how the Ketogenic Diet or any diet therapy
reduces seizures.
 There are multiple hypotheses including:
 Reduced carbohydrate intake/stabilization of blood sugar
 The ketones themselves having anti-epileptic properties
 The Ketogenic Diet works in metabolic disorders such as Glut-1 and
PDHD by offering the body a different energy source to use instead of
glucose.

76. Diet Therapy – Efficacy
 Diet therapy is effective for ~2/3 of patients
 Efficacy based on at least a 50% reduction in seizures
 ~10% of patients become seizure-free
 ~1/3 of patients do not respond to diet therapy at all
 There is no way to determine which children will become seizure free
and which will not show any benefit prior to starting the diet.

77. What Does the Ketogenic Diet Ratio Mean Anyway?
Ratio = grams of fat: grams of carbohydrate and protein combined
 4:1 Ratio = 4 grams of fat to every 1 gram of carbohydrate and protein
combined
 The ratio is thought of as the “strength” of the diet with a 4:1 ratio
typically being the strongest.

78. Initiation of the Ketogenic Diet
 At CHCO, the Ketogenic Diet is typically initiated during a 5 day
hospital admission.
 Hospitals around the world initiate the Ketogenic Diet in a variety of
ways.
 The metabolic change from using glucose as an energy source to using
ketones can be difficult.
 Ketones = acidic
 Acidosis can cause lethargy, decreased appetite, nausea, vomiting
 IV fluids, juice, and medications can help decrease the symptoms of acidosis

79. The Ketogenic Diet in an Oral Eater
 All food must be weighed out on a gram scale in order to make sure it
provides the correct ratio.
 Gram scale should weigh out to the tenth of a gram.
 Each meal/snack is calculated exactly in order to provide a specific
amount of calories and protein daily.
 The child needs to eat 100% of the meal (and no more) in order to
make sure they receive the correct calories and ratio for that meal.
 Use a spatula to scrape the plate clean.

80. The Ketogenic Diet in an Oral Eater
Sample Meal for a 7 year old on a 4:1 Ketogenic Diet
350 calories and 5.5 grams of protein
52 grams of 36% heavy whipping cream
+
10 grams unsweetened applesauce
+
21 grams of chunk light StarKist tuna in water
+
18 grams mayonnaise
+
15 grams avocado
*Can mix tuna with mayo and avocado; give applesauce separately; add stevia and/or to heavy
whipping cream to make “milk”

81. The Ketogenic Diet – Tube Feeding
 All ingredients are measured either to the exact mL, ounce, or gram.
 All ingredients in the formula recipe must be mixed together in order to
provide the correct ratio.
 Water will NOT change the ratio of the Ketogenic Diet, but will affect
calorie and protein provision if less volume is actually provided when
water is increased.

82. Modified Atkins Diet
 Similar to Ketogenic Diet in that goal is ketosis by providing high fat and
minimal carbohydrate.
 Does not require hospital admission for initiation, 1-2 hour outpatient
education session with RD only.
 Does not require weighing foods and is less restrictive.
 Counting carbohydrates, typically limited to 10 grams per day.
 Net carbohydrates = grams of total carbohydrate – grams of fiber per
serving (do not subtract sugar alcohols)
 Pushing fat at each meal/snack (butter, oil, mayonnaise) not only helps
increase ketosis, but also helps prevent weight loss.

83. Modified Atkins Diet
FREE FOODS ON MAD

84. Modified Atkins Diet
LOW CARB FOODS ON MAD

85. Modified Atkins Diet
 The Modified Atkins Diet is two-fold:
 1. Limit net carbohydrates
 2. PUSH FAT

86. Other Considerations on Diet Therapy
 Children on diet therapy should not receive dextrose in their IV fluids
unless it is cleared by the Ketogenic Diet team.
 All medications must be in tablet or capsule form*.
 Toothpaste, chap stick, sunscreen, lotions, etc. can all contribute
carbohydrate to the child’s system.
 The Charlie Foundation has a list of resources detailing which products
are safe to use while on diet therapy.
https://www.charliefoundation.org/resources-tools/resources-3/low-carb

87. Diet Therapies for Epilepsy – Side Effects
The Ketogenic Diet is NOT natural!
 Nutritional deficiencies
 Vitamin/Mineral supplementation is almost always necessary
 Typical supplements include a multivitamin, Calcium, and Vitamin D
 May need additional bicarbonate, Carnitine, Selenium, Zinc, and salt supplementation

88. Diet Therapies for Epilepsy – Side Effects
 Constipation
 Ensure adequate calorie-free fluid intake (aim high)
 Oil may be used to help increase ketosis and alleviate constipation
 Increase fiber
 Use of Miralax, Smooth Move Tea, Aloe Vera Juice

89. Diet Therapies for Epilepsy – Side Effects
 Kidney stones
 Ensure adequate calorie-free fluid intake (aim high)
 Citrate supplementation

90. Diet Therapies for Epilepsy – Side Effects
 Decreased bone growth and bone density
 Use of Calcium/Vitamin D supplementation to meet at least 100% DRI from the
beginning
 Adequate protein intake – may need to adjust ratio if energy needs are low

91. Diet Therapies for Epilepsy – Side Effects
 Cholesterol abnormalities
 High Cholesterol, LDL, Triglycerides and/or low HDL
 May resolve on it’s own
 Use of monounsaturated fatty acids or fish oil
 MCT Oil or Carnitine may help
 May need to decrease Ketogenic Diet ratio

92. Diet Therapies for Epilepsy – Side Effects
 Pancreatitis
 Only side effect that the Ketogenic Diet is typically stopped ASAP

93. Weaning the Ketogenic Diet
 Consider weaning the Ketogenic Diet if:
 The diet is no longer providing seizure benefit
 The diet is no longer sustainable for the family
 The child has been on the diet for approximately 2 years with good seizure control
 Wean the diet slowly to prevent breakthrough seizures
 No exact way to wean either the Ketogenic Diet or Modified Atkins Diet
 Keto: wean by 0.25-1 full diet ratio every week-month depending on sensitivity
 MAD: wean by adding 5-10 grams of carbohydrate every week-month depending on
sensitivity

94. Diet Therapy – Tips and Tricks
Great Resources
modifiedmom.wordpress.com
ruled.me

95. Diet Therapy – Tips and Tricks
MEAL TIME IDEAS
Schedule meal and snack times
Don’t push or force
Continue family meals if possible
Make meals fun
Parents are not short-order chefs
Allow good choices
Reward good behavior

96. Diet Therapy – Tips and Tricks
 Modification of food/meals:
 Recipes that are the same ratio in every bite (pancakes, waffles, muffins, etc.)
 Use cookie cutters to make foods into fun shapes
 Make “sushi”
 Use vegetable peeler, slicers, spiralizers to make fruits and vegetables look bigger on the
plate and change some vegetables into “noodles”
 Make popsicles or slushies to increase fluid intake
 Use smaller plates to make food appear larger
 Try to create foods that “look” similar to normal foods, i.e. pizza or grilled cheese
 Small snacks as “free treats” in the right ratio

97. Diet Therapy – Tips and Tricks
Gadgets and Tools

98. Diet Therapy – Tips and Tricks
WHAT DO YOU DO WITH ALL THAT FAT?
Sauces:
Alfredo – butter, garlic, heavy cream, cheese, salt, pepper
Ranch – add butter or mayonnaise to ranch + hot sauce for spicy ranch
Aioli – mayonnaise, garlic, lemon juice OR oil, garlic, egg yolk, dijon, lemon juice
Pesto – olive oil, garlic, cheese, basil
Browned Butter – butter
Hollandaise – egg yolks, butter, lemon juice, salt, spice
“medicine” from a
syringe
FAT BOMBS Creamsicles
Whipped Cream “Ice Cream” or “Mousse” Flavored Cream “milk” Butter lollipops

99. Diet Therapy – Tips and Tricks
Pass the (keto) bread!

100. Diet Therapy – Tips and Tricks
Foods Doing Double Duty
= rice, pizza crust, tater tots, mashed potatoes
= noodles, chips, fries, pizza crust
= pizza crust, french toast, pancakes, chips,
fried foods

101. Diet Therapy – Tips and Tricks
Foods Doing Double Duty
= pancakes, frosting, dips, spreads
= fried foods, pizza crust, desserts
= pancakes, breads, “muffins”

102. Diet Therapy – Tips and Tricks
Snack Ideas
 Almonds or other nuts
 Cheese
 Pork rinds + sour cream or avocado
 Veggies + cream cheese
 Fruit + “whipped cream”
 Sugar-free jello + “whipped cream”
 Olives
 Chocolate
 Beef jerky

103. QUESTIONS?