Families and physicians alike benefit from the advances and ease of the Internet. Similarly, both can be unaware of harmful misinformation circulating the Web. In this article, we describe the presentation of 2 unrelated infants, within 1 week of each other, with vitamin D deficiency rickets and severe extraskeletal manifestations of hypocalcemia, including seizures and cardiac arrest, from homemade, vegan formula found through Pinterest (San Francisco, CA). Despite good parental intentions this formula did not meet macronutrient and micronutrient standards, particularly regarding vitamin D, phosphorus, and calcium content, and led to rare, life-threatening complications in both cases. Before presentation, both patients followed appropriately with their pediatrician and discussed feeding in detail, although neither family disclosed the use of homemade formula. Pediatricians must be aware of these dangerous homemade alternative formulas, consider the manner and depth of their feeding history questioning, and continue to counsel against homemade formula to prevent further harm to children.

Advances in technology and popularization of social media have improved accessibility to medical information. Patients and caregivers receive information from physicians via telehealth and easily access recommendations from sources, such as the American Academy of Pediatrics, online. However, caregivers have similarly easy access to parenting Web sites full of persuasive advice, making it increasingly difficult to deduce which recommendations are safe.13  A growing trend on social media is the promotion of homemade, plant-based infant formula, including 1 vegan formula recipe composed of coconut water, hemp seed hearts, dates, sea moss, and alkaline water, which has been popularized on multiple platforms. We describe the clinical courses of 2 unrelated infants with severe systemic manifestations of hypocalcemia because of this homemade formula.

A five-month-old, previously healthy, Black male infant presented to the hospital after a seizurelike episode of extremity stiffening, perioral cyanosis, and apnea lasting several minutes after a postfeed emesis. This was his third episode in 10 days, all following feeds; he also developed stridor at rest and worsening tachypnea with feeds. He was evaluated by his pediatrician for these episodes 5 days before presentation and was diagnosed with laryngomalacia and reflux.

He was initially breastfed and supplemented with traditional cow’s milk formula and then transitioned to exclusive cow's milk formula at 1 month of age. He was experiencing fussiness, gas, and constipation, which parents attributed to formula. In efforts to mitigate these symptoms, they researched organic formula recipes online and fully transitioned him to the aforementioned homemade formula at 3 months of age. He was tolerating 4 oz feeds every 2 hours, with improvement of gastrointestinal symptoms. He did not receive vitamin D supplementation. No complementary foods were introduced. He was gaining weight (although his weight percentiles were down-trending), his length was also initially down-trending (although it increased before admission), and his head circumference (HC) remained <3% (Figs 13). He was immunized and managed appropriately by his pediatrician.

FIGURE 1

Weight measurements in kilograms for patient 1 (circles) and patient 2 (triangles) plotted on a World Health Organization Growth Chart for Boys 0 to 24 months of age.

FIGURE 1

Weight measurements in kilograms for patient 1 (circles) and patient 2 (triangles) plotted on a World Health Organization Growth Chart for Boys 0 to 24 months of age.

Close modal
FIGURE 2

Length measurements in centimeters for patient 1 (circles) and patient 2 (triangles) plotted on a World Health Organization Growth Chart for Boys 0 to 24 months of age.

FIGURE 2

Length measurements in centimeters for patient 1 (circles) and patient 2 (triangles) plotted on a World Health Organization Growth Chart for Boys 0 to 24 months of age.

Close modal
FIGURE 3

HC in centimeters for patient 1 (circles) and patient 2 (triangles) plotted on a World Health Organization Growth Chart for Boys 0 to 24 months of age.

FIGURE 3

HC in centimeters for patient 1 (circles) and patient 2 (triangles) plotted on a World Health Organization Growth Chart for Boys 0 to 24 months of age.

Close modal

At presentation, he was dehydrated with delayed capillary refill but otherwise well appearing with normal vital signs. The initial lab work revealed low total calcium of 4.5 mg/dL, phosphorus of 4.9 mg/dL, elevated alkaline phosphatase of 1021 U/L, transaminitis, prolonged prothrombin time, and metabolic acidosis (Table 1). An electrocardiogram (ECG) revealed sinus rhythm with prolonged QTc of 526 ms. He received 1 20 mL/kg normal saline bolus and 2 100 mg/kg doses of intravenous (IV) calcium gluconate. Repeat calcium increased to 6.0 mg/dL.

TABLE 1

PICU Admission Laboratories for Patient 1 and Patient 2 as Compared With Normal Values

Patient 1Patient 2Normal
Total serum calcium, mg/dL 4.5 4.0 8.8–11.2 
Ionized calcium, mmol/L 0.87 0.82 0.97–1.3 
Intact parathyroid hormone, pg/mL 502 1350 10–65 
Alkaline phosphatase, U/L 1021 145 146–477 
Aspartate aminotransferase, U/L 99 919 15–37 
Alanine aminotransferase, U/L 52 463 12–41 
Albumin, g/dL 3.9 1.1 2.9–5.5 
Lactate, mmol/L 2.7 5.4 <2 
pH 7.4 6.67 7.34–7.43 
Bicarbonate, mmol/L 13 18–28 
pCO2, mm Hg 22 54 35–45 
Magnesium, mg/dL 1.7 3.5 1.6–2.5 
Phosphorus, mg/dL 4.9 10 3.8–6.7 
25-hydroxyvitamin D total, ng/dL <6 <6.0 20–50 
1,25-dihydroxyvitamin D, pg/mL 12 <8 24–86 
Creatinine, mg/dL <0.2 0.9 0–0.5 
Serum urea nitrogen, mg/dL 22 1–14 
Hemoglobin, g/dL 11.4 6.6 9.8–12.4 
Platelets, B/UL 552 44 150–400 
Prothrombin time, s 15.7 Uninterpretable 10.9–14.1 
International normalized ratio 1.29 Uninterpretable 0.8–1.2 
Patient 1Patient 2Normal
Total serum calcium, mg/dL 4.5 4.0 8.8–11.2 
Ionized calcium, mmol/L 0.87 0.82 0.97–1.3 
Intact parathyroid hormone, pg/mL 502 1350 10–65 
Alkaline phosphatase, U/L 1021 145 146–477 
Aspartate aminotransferase, U/L 99 919 15–37 
Alanine aminotransferase, U/L 52 463 12–41 
Albumin, g/dL 3.9 1.1 2.9–5.5 
Lactate, mmol/L 2.7 5.4 <2 
pH 7.4 6.67 7.34–7.43 
Bicarbonate, mmol/L 13 18–28 
pCO2, mm Hg 22 54 35–45 
Magnesium, mg/dL 1.7 3.5 1.6–2.5 
Phosphorus, mg/dL 4.9 10 3.8–6.7 
25-hydroxyvitamin D total, ng/dL <6 <6.0 20–50 
1,25-dihydroxyvitamin D, pg/mL 12 <8 24–86 
Creatinine, mg/dL <0.2 0.9 0–0.5 
Serum urea nitrogen, mg/dL 22 1–14 
Hemoglobin, g/dL 11.4 6.6 9.8–12.4 
Platelets, B/UL 552 44 150–400 
Prothrombin time, s 15.7 Uninterpretable 10.9–14.1 
International normalized ratio 1.29 Uninterpretable 0.8–1.2 

On admission to the PICU, he was well appearing with widened fontanelle, no craniotabes, negative Chvostek and Trousseau signs, and no obvious musculoskeletal deformities. Additional lab work was notable for a low ionized calcium of 0.87 mmol/L, elevated intact parathyroid hormone (PTH) of 502 pg/mL, decreased 25-hydroxyvitamin D of <6.0 ng/mL, and decreased 1,25-dihydroxyvitamin D of 12 pg/mL. Radiographs revealed diffuse bone demineralization with fraying of metaphyseal contours, consistent with rickets (Fig 4).

FIGURE 4

Frontal view of knee and wrist. Diffuse bone demineralization with flaring and irregularity of the metaphyses of the long bones as can be seen with rickets. A, Knee. B, Wrist.

FIGURE 4

Frontal view of knee and wrist. Diffuse bone demineralization with flaring and irregularity of the metaphyses of the long bones as can be seen with rickets. A, Knee. B, Wrist.

Close modal

During his hospitalization, he received multiple IV calcium gluconate and magnesium sulfate riders, enteral calcium carbonate, and enteral cholecalciferol supplementation. He developed hungry bone syndrome and required a 4-day inpatient stay. He had no further seizurelike episodes or evidence of laryngospasm. He was discharged on cow’s milk formula, oral calcium, and high-dose vitamin D supplementation with outpatient endocrinology follow-up.

A four-month-old, previously healthy, Black male infant presented via ambulance for acute respiratory distress after waking from a nap. He was lethargic, mottled with agonal breathing requiring urgent intubation. He developed a bradycardic arrest, requiring 3 rounds of epinephrine and chest compressions before return of spontaneous circulation. After transfer to the PICU, he had a fourth bradycardic arrest requiring cardiopulmonary resuscitation with epinephrine and 20 mg/kg calcium chloride with resolution of his rhythm disturbance and return of spontaneous circulation.

He was exclusively breastfed until 1 month of age when his family started supplementing with the aforementioned homemade formula because of a decline in maternal breast milk supply, concern for commercial formula causing constipation, and parental vegan preferences; his parents found the recipe through social media. He fed 8 times daily with no reported difficulties. He did not receive vitamin D supplementation. No complementary foods were introduced. He was gaining weight, although his weight percentiles were down-trending; his length and HC percentiles were initially down-trending, although both parameters had increased before admission (Figs 13). He was unimmunized but managed appropriately by his pediatrician.

The initial lab work was notable for a low total calcium level of 4.0 mg/dL, low ionized calcium of 0.82, elevated phosphorus of 10 mg/dL, and elevated PTH of 1350 pg/mL. His 25-hydroxyvitamin D level was <6.0 ng/mL, and his 1,25-dihydroxyvitamin D level was <8 pg/mL. He was anemic and thrombocytopenic, and his initial coagulation assays were uninterpretable because of a lack of calcium (Table 1). An initial ECG after calcium replacement revealed sinus tachycardia, QTc of 393 msec, and upsloping ST depressions. An initial postarrest echocardiogram revealed normal anatomy and mildly depressed left ventricular function, with an ejection fraction of 48%.

He required epinephrine and norepinephrine infusions for inotropic support until his calcium improved. He required a week-long calcium chloride infusion for persistent hypocalcemia. For >10 days, he received daily IV electrolyte replacements for persistent hypokalemia, hypomagnesemia, hypophosphatemia, and hypocalcemia as well as enteral vitamin D, calcium chloride, calcitriol, potassium, magnesium, and phosphorus supplementation. Radiographs revealed bone demineralization, with fraying of the metaphyses, consistent with rickets (Fig 4). Once his electrolytes stabilized, ECG and echocardiogram findings normalized. Five days postarrest, an MRI of the brain revealed diffuse hypoxic ischemia with acute infarctions within the cortex and brainstem. He was ultimately hospitalized for 5 weeks managing postarrest complications and is currently undergoing intensive outpatient physical, occupational, and feeding rehabilitation.

The American Academy of Pediatrics recommends exclusive breastfeeding in the first 6 months of life with continuation of breastfeeding as complementary foods are added.4,5  For families who are unable or choose not to breastfeed, commercial infant formulas are the only recommended replacement. Breastfed infants should receive at least 400 IU of vitamin D daily; formula fed infants should also receive vitamin D supplementation until consuming 32 oz of formula per day.6 

In vitamin D deficiency, low ionized calcium leads to increased PTH secretion and calcium mobilization from bones, leading to the demineralization seen in rickets. Severe vitamin D deficiency can also cause extraskeletal manifestations of hypocalcemia including tetany, seizures, apnea, laryngospasm, coagulopathy, cardiomyopathy, and death.7  Neuromuscular irritability manifests as tetany, characterized by paresthesias and muscle cramps.8  Calcium is required for cardiac myocyte contraction and vascular smooth muscle function, and hypocalcemia has been shown to affect vascular tone, leading to hypotension. ECG findings of hypocalcemia include delayed ventricular depolarization, evidenced by QT prolongation, nonspecific ST-T wave segments, and, rarely, ventricular arrhythmia. Calcium is required for hemostasis and coagulation, including platelet adhesion and intrinsic function of vitamin K–dependent coagulation factors.9 

The recently diagnosed reflux and laryngomalacia in patient 1 was possibly unidentified laryngospasm from hypocalcemia. His seizure activity was likely a manifestation of hypocalcemia, and his prolonged QTc was also secondary to his profound hypocalcemia causing conduction abnormalities throughout the myocardium. Patient 2 demonstrated tetany, circulatory collapse, and coagulopathy, all likely due to his severe hypocalcemia.

The extreme presentations in our patients were atypical for vitamin D deficiency, even with the risk factor of dark skin in both cases. We speculate both mothers were vitamin D deficient because of vegan diets, causing insufficient transfer of vitamin D and calcium in utero and during breastfeeding. We also speculate that the extremely high phosphorus content of hemp seeds in this formula contributed to the infants' severe hypocalcemia by decreasing intestinal calcium absorption. A total of 24 oz of this formula would contain 2721 mg phosphorus and 129 mg calcium (Table 2). For reference, the recommended daily allowance of phosphorus for infants aged 0 to 6 months is only 100 mg, and the recommended daily allowance of calcium is 200 mg.10 

TABLE 2

Comparison of Vitamin D, Calcium, and Phosphorus Content in Breast Milk, Similac Advance Formula, and the Homemade Vegan Formula Fed to These 2 Patients.

Nutrient Content per 24 fl oz
Vitamin D, IUCalcium, mgPhosphorus, mg
Breast milk19  9.4 142–177 85–99 
Similac Advance20  342 374 201 
Homemade formula, estimated21  126 2667 
Nutrient Content per 24 fl oz
Vitamin D, IUCalcium, mgPhosphorus, mg
Breast milk19  9.4 142–177 85–99 
Similac Advance20  342 374 201 
Homemade formula, estimated21  126 2667 

The homemade formula recipe calls for 3 cups alkaline water, 1 cup hemp seeds, 4 dates, and one-half tablespoon of sea moss, for an ∼24-oz yield.

Despite evidence-based recommendations, some families choose to feed their infants homemade formulas. Reasons for using homemade formula include the cost of commercial formula, perceived nutritional superiority of homemade formula, and distrust of medical establishment.11  Recipes found online may include raw or unpasteurized milk, goat’s milk, and plant-based beverages, none of which are appropriate for newborn consumption.11,12  Recipes and blogs do not often provide a disclaimer that caregivers should consult their pediatrician before use,11  and nutritional misinformation posted online rarely goes unchallenged by medical providers.11 

Caregivers are frequent Internet users, especially for information about their children's health, and research reveals that they desire more guidance regarding reputable Web sites for medical advice.13  Social media carries particular risk of unreliable information, with user-generated content blurring the lines between producers and consumers of health information as well as a sense of community building false trust.14  Caregivers may be hesitant to volunteer information obtained online for fear of judgment by their pediatrician,13  and neither of our patients’ families had disclosed that they were using a homemade formula at their appointments. It is vital for pediatricians to both cultivate a trusting relationship with families to discuss concerns and seek out detailed nutritional histories, including the primary feeding method, how formula is mixed, additives, vitamins or nutritional supplements, cultural feeding practices, and food insecurity. We also speculate that the current coronavirus disease 2019 pandemic and associated reduced rate in health care use1518  may be related to families seeking alternative sources of medical information online. Although it has always been important for pediatricians to advocate breastfeeding and formula safety, it is also important pediatricians validate caregivers’ fears but promptly correct misinformation and warn of the dangers of homemade formula, both in office visits with individual patients and on social media platforms. Consistent efforts are needed to better educate families and to keep children safe.

Drs Vieira, Kube, van Helmond, and Slamon conceptualized and designed the manuscript, drafted the data, and reviewed and critically revised the manuscript; Drs Hanley, Graber, and Bialo contributed to the interpretation of data, critically reviewed the manuscript for important intellectual content, and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: No external funding.

     
  • ECG

    electrocardiogram

  •  
  • HC

    head circumference

  •  
  • IV

    intravenous

  •  
  • PTH

    parathyroid hormone

1
Hoffman
BL
,
Felter
EM
,
Chu
KH
, et al
.
It’s not all about autism: the emerging landscape of anti-vaccination sentiment on Facebook
.
Vaccine
.
2019
;
37
(
16
):
2216
2223
2
Tangherlini
TR
,
Roychowdhury
V
,
Glenn
B
, et al
.
“Mommy Blogs” and the vaccination exemption narrative: results from a machine-learning approach for story aggregation on parenting social media sites
.
JMIR Public Health Surveill
.
2016
;
2
(
2
):
e166
3
Pilgrim
K
,
Bohnet-Joschko
S
.
Selling health and happiness how influencers communicate on Instagram about dieting and exercise: mixed methods research
.
BMC Public Health
.
2019
;
19
(
1
):
1054
4
Eidelman
AI
.
Breastfeeding and the use of human milk: an analysis of the American Academy of Pediatrics 2012 Breastfeeding Policy Statement
.
Breastfeed Med
.
2012
;
7
(
5
):
323
324
5
Wagner
CL
,
Greer
FR
;
American Academy of Pediatrics Section on Breastfeeding
;
American Academy of Pediatrics Committee on Nutrition
.
Prevention of rickets and vitamin D deficiency in infants, children, and adolescents [published correction appears in Pediatrics. 2009;123(1):197]
.
Pediatrics
.
2008
;
122
(
5
):
1142
1152
6
Abrams
SA
.
Vitamin D in preterm and full-term infants
.
Ann Nutr Metab
.
2020
;
76
(
suppl 2
):
6
14
7
Holick
MF
.
Resurrection of vitamin D deficiency and rickets
.
J Clin Invest
.
2006
;
116
(
8
):
2062
2072
8
Kelly
A
,
Levine
MA
.
Hypocalcemia in the critically ill patient
.
J Intensive Care Med
.
2013
;
28
(
3
):
166
177
9
Wray
JP
,
Bridwell
RE
,
Schauer
SG
, et al
.
The diamond of death: hypocalcemia in trauma and resuscitation
.
Am J Emerg Med
.
2021
;
41
:
104
109
10
National Academies of Sciences, Engineering, and Medicine
;
Health and Medicine Division
;
Food and Nutrition Board
;
Committee to Review the Dietary Reference Intakes for Sodium and Potassium
;
Oria
M
,
Harrison
M
,
Stallings
VA
, eds.
Dietary Reference Intakes for Sodium and Potassium
.
Washington, DC
:
National Academies Press
;
2019
.
11
Abrams
SA
,
Daniels
SR
.
Protecting vulnerable infants by ensuring safe infant formula use
.
J Pediatr
.
2019
;
211
:
201
206
12
Davis
SA
,
Knol
LL
,
Crowe-White
KM
,
Turner
LW
,
McKinley
E
.
Homemade infant formula recipes may contain harmful ingredients: a quantitative content analysis of blogs
.
Public Health Nutr
.
2020
;
23
(
8
):
1334
1339
13
Kubb
C
,
Foran
HM
.
Online health information seeking by parents for their children: systematic review and agenda for further research
.
J Med Internet Res
.
2020
;
22
(
8
):
e19985
14
Dalmer
NK
.
Questioning reliability assessments of health information on social media
.
J Med Libr Assoc
.
2017
;
105
(
1
):
61
68
15
Zhong
Y
,
Clapham
HE
,
Aishworiya
R
, et al
.
Childhood vaccinations: hidden impact of COVID-19 on children in Singapore
.
Vaccine
.
2021
;
39
(
5
):
780
785
16
Santoli
JM
,
Lindley
MC
,
DeSilva
MB
, et al
.
Effects of the COVID-19 pandemic on routine pediatric vaccine ordering and administration - United States, 2020
.
MMWR Morb Mortal Wkly Rep
.
2020
;
69
(
19
):
591
593
17
DeLaroche
AM
,
Rodean
J
,
Aronson
PL
, et al
.
Pediatric emergency department visits at US children’s hospitals during the COVID-19 pandemic
.
Pediatrics
.
2020
;
147
(
4
):
e2020039628
18
Macy
ML
,
Huetteman
P
,
Kan
K
.
Changes in primary care visits in the 24 weeks after COVID-19 stay-at-home orders relative to the comparable time period in 2019 in metropolitan Chicago and Northern Illinois
.
J Prim Care Community Health
.
doi:10.1177/2150132720969557
19
Kleinman
R
.
Pediatric Nutrition
. 8th ed.
Itasca, IL
:
American Academy of Pediatrics
;
2019
20
Abbott
.
Similac Advance
.
Available at: https://abbottnutrition.com/similac-advance. Accessed February 24, 2021
21
US Department of Agriculture Agricultural Research Service
.
FoodData Central
.
Available at: fdc.nal.usda.gov. Accessed February 24, 2021

Competing Interests

POTENTIAL CONFLICT OF INTEREST: Dr Graber is a contributing author to Merck Manuals. Drs Vieira, Kube, van Helmond, Hanley, Bialo, and Slamon have disclosed no financial relationships relevant to this article.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.