CEREBRAL PALSY, INTELLECTUAL

DISABILITIES, AND NUTRITION

Alexia Tomirotti
 Cerebral Palsy + MNT

Intellectual Disabilities + MNT

Case Study Patient

Agenda Hypothetical Tube Feeding

Reflection

Summary
Learning
Objectives
1. Understand how food & nutrition needs is
impacted in individuals with CP and intellectual
disabilities
2. Summarize MNT considerations for individuals
with CP and intellectual disabilities
3. Recognize the importance of
interdisciplinary teams
 Cerebral Palsy
• Definition: Group of neurological disorders that affect movement, muscle tone,
and posture
• Damage to immature, developing brain
• 4 main types of CP:
• Spastic CP – most common
• Increased muscle tone
• Dyskinetic CP
• Difficulty controlling movement of hands, arms, feet, and legs
• Ataxic CP
• Difficulty with balance + coordination
• Mixed CP
• >1 symptom of CP: spastic-dyskinetic CP most common mixed type
Cerebral Palsy
Causes and Risk Factors:
• Abnormal brain development and/or damage to developing brain
• Congenital CP (before or during birth: 85-90% cases)
• Low birth wt, premature birth, multiple births
• Assisted reproductive technology (ART)
infertility treatment
• Infection during pregnancy
• Jaundice and kernicterus
• Medical conditions of mother
• Birth complications
• Acquired CP (after 28 days from birth)
• Infection or head injury
 • Complications:
• Contracture
• Malnutrition***

Cerebral
• Mental health conditions
• Heart and lung disease*
• Osteoarthritis

Palsy
• Osteoporosis*
• Other complications
• Treatments:
• No present cure
• Therapies, drug treatments, surgery,
assistive devices
Cerebral Palsy + MNT
• Per NCM:
• Energy intake – individual's metabolism:
• Amount of activity, muscle tone
• Consider GI conditions:
• Promoted normal GI function through dietary management including
adequate nutrition
• Fiber, fluids, and regular exercise
• Assist in development of bowel program
• Suppositories, enemas, or manual extraction of stool
Cerebral Palsy + MNT
• Per NCM:
• Consider GI conditions continued:
• Upright positioning during and immediately after feeding
• Consider small, frequent meals
• Consider eval for feeding/swallowing difficulties
• Consider anti-ulcer meds, if indicated
• Respiratory conditions*
• Monitor swallowing function
• Monitor for scoliosis
• Monitor for signs of pneumonia
Intellectual Disabilities + MNT
Individuals with • Additional physical and psychological problems that limit
primary disabilities - a person's enjoyment of life and participation in activities
"secondary • Diet affects many individuals' secondary conditions:
fatigue, weight problems, and constipation or diarrhea.
conditions"

Proper nutrition can • Improving existing secondary conditions

increase quality of life • Preventing additional conditions from developing
 Concerns:
• Texture, consistency, temperature

Intellectual
• Coughing, gagging, and/or aspiration

Clarify proper texture + consistency of diet

Disabilities Chewability of foods

+ MNT
• Immature development of rotary chew – tend to
munch on food

Importance of OT/SLP consults

• Specialized feeding equipment
• Appropriate consistency of food
Intellectual Disabilities + MNT
• Increased energy intake?
• "Calorie boosters" added to food: powdered nonfat milk, undiluted evaporated milk, cheese, wheat
germ, vegetable oil, mayo, butter, margarine, gravy
• Commercial liquid supplements
• Address underlying cause of low food consumption: tooth pain? Depression? Lack of access to food?
Med-induced anorexia?
• Decreased energy intake?
• Smaller portion sizes, modifying food prep techniques – less added fat, limiting added sugar in food/bev
• Modified feeding environment
• Referral to + collaboration with community resources
CASE STUDY PATIENT
 Overview

Patient: DP - Female, 39 YO
• CP + intellectual disability

LOS: 6 days (8/31/23 - 9/6/23)

Admitted for: Pyelonephritis

• Rule out bowel obstruction per Group Home

Pt on previous dysphagia diet

• Diet: Level 4-Pureed; Level 3-Moderately thick (nectar)
Reason for Consult:
• SLP eval: possible moderate dysphagia
• Diet: Level 4-Pureed; Level 3-Moderately Thick (Honey)
• Recommended VFSS
• High recommendation for dietitian input: able to
sustain adequate nutrition/hydration orally with
recommendations for supplement?
• Dietitian consult per physician:
• Poor intake
• Concern for malnutrition
Background:
Problem list:

• Polynephritis, acute cystitis w/o hematuria, sepsis d/t escherichia coli without acute
organ dysfunction, hypokalemia, bacteremia, constipation, seizure disorder,
iron deficiency anemia 2/2 inadequate dietary iron intake, pressure injury
of sacral region (stage 2), pharyngeal dysphagia, spastic quadriplegic cerebral
palsy*, intellectual disability*

Pertinent PMH:

• CP, moderate intellectual disabilities, dependent edema, hemiplegia, iron deficiency

anemia
• Admitted 8/22-8/25 to OSF for stercoral colitis, constipation, & urinary retention
 Wt Readings from Last 10
Nutrition Assessment:
Encounters:
08/31/23 61.2 kg (134 lb 14.7 oz)
08/22/23 86.2 kg (190 lb) - per OSF
Healthcare note
08/14/23 86.2 kg (190 lb) - per OSF
Healthcare note
08/02/23 88.9 kg (196 lb) - per OSF
Healthcare note
05/12/22 61.2 kg (135 lb)
01/16/20 61.2 kg (135 lb)
Anthropometrics:
• Height: 152.4 cm (5')
• Weight: 61.2 kg (134 lb 14.7 oz)
• BMI: 26.3 kg/m2 (overweight)
WT Changes and Hx:
- Can't appropriately assess wt d/t
unknown previous wt methods
- Likely pt has UBW of ~135 lbs

04/18/19 74.7 kg (164 lb 10.9 oz)

Nutrition Assessment:
Review of Systems Per Flowsheets: Vitals:
Neuro: A&O BP: 153/101 (09/01)
HEENT: Missing teeth; poor dentition, HR: 89 (09/01)
excessive drooling Respiratory Rate: 18 (09/01)
GI: Last BM Date: (PTA) (08/31/23 2300)
Skin/Wounds/Edema: Temp: 36.8 °C (98.2 °F) (09/01)
•Skin: dry, warm, excoriation, erythema SpO2: 100 % (09/01)
•Edema: non-pitting O2 Device: None (Room air) (09/01)
•Braden Score/Nutrition: 17/4

I/O: Since admit: +775

8/31-9/1: IV +1000, IV piggyback +100, Urine -325 = I/O +775
Nutrition Assessment:
IVF/Drips: D5W + 0.45% NS with KCl 20 mEq (100 mL/hr) - 408 kcal/d, Rocephin
1g in NS, Rocephin 2g in NS, Lovenox injection 40mg, Keppra 250 mg in NS

Nutritionally significant meds: Dulcolax, ferrous sulfate syrup 300mg (not

given), robinul (not given), keppra, lisinopril (not given), protonix (not given), glycolax
(not given), senna-docusate, milk of magnesia 400 mg/5mL prn

Nutritionally significant labs: (9/1): Na 146 (H), Cl 112 (H), Ca 8.2 (L), Osmo
300 (H), ALT 11 (L), Alb 2.0 (L), Total pro 5.9 (L), Hgb 10 (L), WBC 10.99 (H); Urine
Ketones (10), (8/31) positive blood cultures, POC gluc 101-114 (8/31)
Nutrition Assessment:
Pt visit:

• Decreased appetite + not eating well

• Agreed to ONS

Communication with Group Home Manager:

• Baseline: eats well + mostly independent (upright in chair)

• Exception: sick or doesn't feel well
• Pureed + honey thick liquid diet for long time
• OSF placed pt on nectar thin liquids – staff noticed difficulty
• Pt likes:
• soups + not a picky eater
• No signs of drastic weight change
 Inadequate oral intake related to

Nutrition
decreased appetite (2/2
fever/UTI/pyelonephritis) as
evidenced by suspected <75% of

Diagnosis
EEE > 7 days, urine ketones (likely d/t
poor oral intake), and report of pt
not eating well during periods of
sickness/not feeling well.
Estimated Nutrition Needs:
• Calories equations: 25 kcal/kg of ABW
• 1530 kcal/d
• Protein equation: 1.0-1.2 kcal/d of ABW
• 61-73 g/d
• Fluid equation: 1 mL/kcal
• 1530 mL/d
Anthropometrics:
• Height: 152.4 cm (5')
• Weight: 61.2 kg (134 lb 14.7
oz)
• BMI: 26.3 kg/m2 (overweight)
Nutrition Intervention
Add Chocolate HP Pudding @AM and @AFT snack (155 kcal 6 g PRO per
container)

Add moderately thickened Chocolate Ensure + HP @B (350 kcal 20g PRO)

Total ONS provides: 660 kcal 26g PRO

Order for 1:1 feedings

 Goals:

>50% PO >50% ONS Stable wt (+

meal intake intake or - 5 lbs)

Monitor and Evaluate:

PO intake, ONS, wt, labs, meds, bowels, I&Os
 Nutrition Follow-Up:

• 4 days later (9/1 9/5)

• Diet switch 9/3:
• Dysphagia Level 4-Pureed; Level 3-Moderately Thick
(Honey) NPO-Strict
• Nurses found pt having difficulty swallowing
• SLP noted severe dysphagia – ordered VFSS this date
• Diet progression needed by 9/7
• Possible indication for permanent feeding tube
 Nutrition
9/5/23 53.1 kg (117 lb Bed
Follow-Up (9/5)
1.6 oz) scale
Goals:
9/2/23 59.3 kg (130 lb Bed 1) >50% PO meal intake – Pt NPO
11.2 oz) scale 2) >50% ONS intake – Pt NPO
8/31/23 61.2 kg (134 lb - 3) Stable wt (+ or – 5lbs) - Not met
14.7 oz) 12.7% severe wt loss since admission
x 5 days – possible bed scale
calibration error
Nutrition Follow-Up (9/5)
• IVF/Drips: D5W + 0.45% NS with KCl 20 mEq (100 mL/hr D/C'd on 9/2 = switched to 50 mL/hr on 9/3) -
204 kcal/d, Rocephin 2g in NS, Lovenox injection 40mg, Robinul injection 0.2 mg/mL, Keppra 250 mg in NS,
protonix injection 40 mg
• Nutritionally significant meds: Peridex 0.12% solution 15 mL, ferrous sulfate syrup 300 mg (HELD), robinul
tablet (D/C'd), lisinopril (HELD), protonix (HELD), glycolax (HELD), KCl packet 20 mEq (HELD), senna-
docusate (HELD)
• Labs: Relatively stable
• K+ dropped since 9/3 - 20 mEq KCl orally
• Mg and Phos stable

9/1 9/2 9/3 9/4 9/5

K+ 4.1 3.4 (L) 3.9 3.8 3.6

Mg 2.1 1.9 -- -- 1.9

Phos 3.1 - -- -- 4.1

Nutrition Follow-Up (9/5)
VFSS on 9/5

• Pt passed swallow study

• Placed on: Level 4-Pureed; Level 2-Mildly Thick (Nectar)
• Liquids switched from level 3-mod thick to level 2-mildly thick

Pt visit:

• Liked ONS – agreed to continue

• Counseled pt: consume meals + ONS as best she can for proper intake of calorie and protein
+ maintain muscle mass + stable wt

Switched Choc Ensure + HP to mildly thick (nectar) for B

Hypothetical Tube Feeding
• Jevity 1.5 Cal via PEG-tube
• Standard, mod-high protein
• Fiber
• Nutrient needs:
• 1530 kcal/d, 61-73 g/d pro (67g avg), 1530 mL/d fluid
• Enteral Nutrition Recommendation:
• Initiate Jevity 1.5 via PEG tube, gravity bolus feeds giving an
initial 135 mL Q6 hours (810 kcal, 34.5 g pro, 410.4 mL free
water)
• Advance to 270 mL Q6 hours once tolerated (1 day)
Enteral Nutrition Recommendation
• Jevity 1.5 via PEG tube, gravity bolus 270 mL Q6 hours to
provide total 1080 mL of formula:
• 1620 kcal, 68.9 g pro, 820.8 mL free water
• 120 mL FWF Q4 hours: Total 1540.8 mL fluid (Free water + FWF)
• Home Regimen:
• 1.5 bottles of Jevity 1.5 - 3x per day = 360 mL per feeding
• 1620 kcal, 68.9 g pro, 820.8 mL free water
• 120 mL FWF Q4 hours: Total 1540.8 mL fluid
• Half empty container with potable water

Communication with Social Worker – access to supplies

+ facility assistance with tube feedings
 • First patient with CP + a mental disability
• Nutrition care + considerations
• Tube feeding in patient with CP + mental

Reflection
disability
• Importance of Interdisciplinary Teams
• Social worker, SLP, OT, etc.
• Done differently?
• Observed pt meal-time
• Emphasis patience with 1:1 feedings
• Education on promoting BM's with pt
• Education on iron food sources
Summary
• How food & nutrition needs is impacted in individuals with
CP and intellectual disabilities
• MNT considerations for individuals with CP and intellectual
disabilities
• Importance of interdisciplinary teams

• Case Study Patient with CP + Intellectual disability

• Hypothetical TF situation
Additional Resources:
• How RDNs Help Individuals with Intellectual and Developmental Disabilities:
• https://www.eatright.org/health/health-conditions/intellectual-disabilities/how-rdns-help-individuals-with-intellectual-and-
developmental-disabilities
• Nutrition for Individuals with Intellectual or Developmental Disabilities:
• https://mtdh.ruralinstitute.umt.edu/?page_id=813
• Nutrition interventions for people with disabilities: A scoping review:
• King, Jessica & Pomeranz, Jamie & Merten, Julie. (2014). Nutrition interventions for people with disabilities: A scoping review.
Disability and Health Journal. 7. 157-163. http://dx.doi.org/10.1016/j.dhjo.2013.12.003
• Position of the Academy of Nutrition and Dietetics: nutrition services for individuals with intellectual
and developmental disabilities and special health care needs
• Ptomey, L. T., & Wittenbrook, W. (2015). Position of the Academy of Nutrition and Dietetics: Nutrition services for individuals with
intellectual and developmental disabilities and special health care needs. Journal of the Academy of Nutrition and Dietetics, 115(4), 593–
608. https://doi.org/10.1016/j.jand.2015.02.002
• Optimizing Nutrition and Bone Health in Children with Cerebral Palsy
• Jesus, A. O., & Stevenson, R. D. (2020). Optimizing Nutrition and Bone Health in Children with Cerebral Palsy. Physical medicine and
rehabilitation clinics of North America, 31(1), 25–37. https://doi.org/10.1016/j.pmr.2019.08.001
• Eating and drinking ability and nutritional status in adults with cerebral palsy
• McAllister, A., Sjöstrand, E., & Rodby-Bousquet, E. (2022). Eating and drinking ability and nutritional status in adults with cerebral
palsy. Developmental medicine and child neurology, 64(8), 1017–1024. https://doi.org/10.1111/dmcn.15196
THANK YOU!
Questions?
References
Academy of Nutrition and Dietetics. (n.d.). Disease process - Nutrition care manual CP. Nutrition Care
Manual. Disease Process - Nutrition Care Manual
Academy of Nutrition and Dietetics. (n.d.). Implementation of the nutrition care intervention CP - Nutrition care
manual CP. Nutrition Care Manual. Implementation of the Nutrition Intervention - Nutrition Care Manual
Academy of Nutrition and Dietetics. (n.d.). Nutrition intervention ID - Nutrition care manual. Nutrition Care
Manual. Nutrition Intervention - Nutrition Care Manual
Centers for Disease Control and Prevention. (n.d.). Cerebral palsy (CP).
https://www.cdc.gov/ncbddd/cp/facts.html
Mayo Clinic. (2021). Cerebral palsy. Diseases & Conditions. https://www.mayoclinic.org/diseases-
conditions/cerebral-palsy/symptoms-causes/syc-20353999
National Institute of Neurological Disorders and Stroke. (n.d.). Cerebral palsy. Health Information.
https://www.ninds.nih.gov/health-information/disorders/cerebral-palsy