Expanded Newborn Screening: Expanded Newborn Screening:
The Nutrition PerspectiveThe Nutrition PerspectiveNutrition 526Nutrition 526
November 5, 2008November 5, 2008Beth Ogata, MS, RDBeth Ogata, MS, RD
[email protected]@u.washington.edu
Nutrition Involvement in NBSNutrition Involvement in NBS
PolicyPolicy Diagnostic/coordinationDiagnostic/coordination ClinicalClinical CommunityCommunity
Example: infant with galactosemiaExample: infant with galactosemia
Symptoms in newborn, if Symptoms in newborn, if untreateduntreated– Vomiting, diarrheaVomiting, diarrhea– Hyperbilirubinemia, hepatic Hyperbilirubinemia, hepatic
dysfunction, hepatomegalydysfunction, hepatomegaly– Renal tubular dysfunctionRenal tubular dysfunction– CataractsCataracts– EncephalopathyEncephalopathy– E. coli septicemia resultE. coli septicemia result– Death within 6 weeks, if Death within 6 weeks, if
untreateduntreated AlsoAlso
– Duarte variantDuarte variant– galactokinase deficiencygalactokinase deficiency– uridine diphosphate-uridine diphosphate-
galactose-4-epimerase galactose-4-epimerase deficiencydeficiency
Galactose-1-phosphate uridyl transferase (GALT) deficiency
Example: infant with galactosemiaExample: infant with galactosemia
Primary source is milk Primary source is milk (lactose= galactose + (lactose= galactose + glucose)glucose)
Secondary sources are Secondary sources are legumeslegumes
Minor? sources are Minor? sources are fruits and vegetablesfruits and vegetables
Food labelsFood labels– milk, casein, milk solids, milk, casein, milk solids,
lactose, whey, hydrolyzed lactose, whey, hydrolyzed protein, lactalbumin, protein, lactalbumin, lactostearin, caseinatelactostearin, caseinate
Medications Medications (lactose is (lactose is often an inactive ingredient)often an inactive ingredient)
Dietary supplementsDietary supplements Artificial sweetenersArtificial sweeteners
Monitoring: galactose-1-phosphate levels <3-4 mg/dlMonitoring: galactose-1-phosphate levels <3-4 mg/dl
Treatment: eliminate all galactose from dietTreatment: eliminate all galactose from diet
Example: Infant with galactosemiaExample: Infant with galactosemia
POLICY
RD participated on State Advisory Board to select disorders, including galactosemia
DIAGNOSIS & COOORDINATION
“Presumptive positive” RD in contact with family and local providers to discuss appropriate feeding practices and arrange clinic appointment
CLINICAL MANAGEMENT
RD provides nutrition care as member of the Biochemical Genetics Team:
•Initiation of formula
•Guidelines for monitoring intake
•Plans for follow-up
RD as case manager
COMMUNITY
RD at local health department provides ongoing education to family, local care providers
Nutrition and NBS: PolicyNutrition and NBS: Policy
Screening process (disorders, procedures) Screening process (disorders, procedures) RD participated in Advisory Board meetings, providing RD participated in Advisory Board meetings, providing input about nutrition-related treatmentinput about nutrition-related treatment
Services and reimbursementServices and reimbursementNutrition consultant to state CSHCN ProgramNutrition consultant to state CSHCN Program
RD provides input about relevant state Medicaid policiesRD provides input about relevant state Medicaid policies
Training and educationTraining and educationRD provides information about management of metabolic RD provides information about management of metabolic disorders to local WIC agenciesdisorders to local WIC agencies
Nutrition and NBS: Clinical Nutrition and NBS: Clinical Management – PKUManagement – PKU
PhenylketonuriaPhenylketonuria– Phenylalanine hydroxylasePhenylalanine hydroxylase– Dihydropteridine reductaseDihydropteridine reductase– Biopterin synthetaseBiopterin synthetase
Establish diagnosisEstablish diagnosis– Presumptive positive NBS Presumptive positive NBS
resultsresults > 3 mg/dL, >24 hrs of > 3 mg/dL, >24 hrs of
ageage
– Differential diagnosisDifferential diagnosis serum phe, nl tyrserum phe, nl tyr r/o DHPR, biopterin r/o DHPR, biopterin
defectsdefects
Current Treatment GuidelinesCurrent Treatment Guidelines
With effective NBS, children are With effective NBS, children are identified by 7 days of ageidentified by 7 days of age
Initiate treatment immediatelyInitiate treatment immediately Maintain phe levels 1-6 mg/dl (60-Maintain phe levels 1-6 mg/dl (60-
360 umol/L)360 umol/L) Lifelong treatmentLifelong treatment
Outcome ExpectationsOutcome Expectations With NBS and blood With NBS and blood
phenylalanine levels phenylalanine levels consistently in the consistently in the treatment rangetreatment range– Normal IQ and physical Normal IQ and physical
growth are expectedgrowth are expected
With delayed With delayed diagnosis or diagnosis or consistently elevated consistently elevated blood levelsblood levels– IQ is diminished and IQ is diminished and
physical growth is physical growth is compromisedcompromised
Clinical Management: PKUClinical Management: PKU
Goals of Nutrition TherapyGoals of Nutrition Therapy Normal growth rateNormal growth rate Normal physical Normal physical
developmentdevelopment Normal cognitive Normal cognitive
developmentdevelopment Normal nutritional Normal nutritional
statusstatus
Clinical Management: PKUClinical Management: PKU
Correct substrate Correct substrate imbalanceimbalance– Restrict Restrict
phenylalanine phenylalanine intake to normalize intake to normalize plasma plasma concentrationconcentration
Supply product of Supply product of reactionreaction– Supplement Supplement
tyrosine to maintain tyrosine to maintain normal plasma normal plasma tyrosine levelstyrosine levels
Phenylalanine -------------------//----------------------- Tyrosine
(substrate) phenylalanine hydroxylase (product)
Goals of Nutrition Support for Goals of Nutrition Support for Phenylketonuria (PKU)Phenylketonuria (PKU)
Maintain plasma phenylalanine (phe) Maintain plasma phenylalanine (phe) between 1-6 mg/dlbetween 1-6 mg/dl– Without PKU, phe ~ 1.0 mg/dlWithout PKU, phe ~ 1.0 mg/dl
Maintain plasma tyrosine (tyr) Maintain plasma tyrosine (tyr) between 0.9–1.8 mg/dlbetween 0.9–1.8 mg/dl– Normal = 0.9-1.8 mg/dlNormal = 0.9-1.8 mg/dl
Goals of Nutrition Support for Goals of Nutrition Support for Phenylketonuria (PKU)Phenylketonuria (PKU)
Interpretation of phenylalanine levelsInterpretation of phenylalanine levels
~1 mg/dl~1 mg/dl NormalNormal
1-6 mg/dl1-6 mg/dl ExcellentExcellent
6-10 mg/dl6-10 mg/dl GoodGood
10-15 mg/dl10-15 mg/dl CautionCaution
15-20 mg/dl15-20 mg/dl DangerousDangerous
> 20 mg/dl> 20 mg/dl Very damagingVery damaging
Phe Levels from NBS to TxPhe Levels from NBS to Tx
Blood levels every 2 daysbecause of rapid growth
Equilibrium achieved by 14 days of age
Diagnostic levels
Adjustments necessary to maintain Adjustments necessary to maintain “safe” blood phe levels“safe” blood phe levels
Usual intake of pheUsual intake of phe– Newborn on formulaNewborn on formula
20 oz x 22 mg phe/oz = 440 mg phe20 oz x 22 mg phe/oz = 440 mg phe
– 1 yo child on “regular” diet1 yo child on “regular” diet30 g protein = 1500 mg phe (DRI = 13.5 g)30 g protein = 1500 mg phe (DRI = 13.5 g)
– 7 yo child on “regular” diet7 yo child on “regular” diet50 g protein = 2500 mg phe (DRI = 19 g)50 g protein = 2500 mg phe (DRI = 19 g)
Phenylalanine requirementPhenylalanine requirement– 250 mg/d250 mg/d
Management ToolsManagement Tools
Specialized formula Specialized formula providesprovides– 80-90% energy intake80-90% energy intake– 89-90 % protein intake89-90 % protein intake– tyrosine supplementstyrosine supplements– no phenylalanineno phenylalanine
Phenylalanine to meet Phenylalanine to meet requirement from infant requirement from infant formula or foodsformula or foods
Formula CompositionFormula Composition
Regulated by FDARegulated by FDA– Renal solute loadRenal solute load– Carbohydrate Carbohydrate
sourcesource– Fat sourceFat source– Amino acid sourceAmino acid source– Vitamin and mineral Vitamin and mineral
contentcontent
Designated by Designated by clinicianclinician– Protein/energy ratioProtein/energy ratio– Specific amino acidSpecific amino acid– Fluid balanceFluid balance– Total proteinTotal protein– Total energyTotal energy
Effect of a single amino acid Effect of a single amino acid deficiency on growthdeficiency on growth
Food Choices for PKUFood Choices for PKU
Sample Menu: ~1 year oldSample Menu: ~1 year oldFoodFood Protein (g)Protein (g)
¼ cup Cheerios¼ cup Cheerios 0.80.8
½ banana½ banana 0.60.6
½ cup milk½ cup milk 44
2 graham crackers2 graham crackers 22
½ cup milk½ cup milk 44
¼ tuna sandwich¼ tuna sandwich 88
½ peach½ peach 0.60.6
2 saltines2 saltines 0.60.6
¼ cup juice¼ cup juice 00
½ cup milk½ cup milk 44
½ banana½ banana 0.60.6
¼ cup cottage cheese¼ cup cottage cheese 77
¼ cup green beans¼ cup green beans 0.30.3
TOTALTOTAL 32.532.5
>>1625 mg phe>>1625 mg phe
Total Protein:
32.5 grams
(1625 mg phe)
DRI (protein):
13.5 grams (~675 mg phe)
Phe requirement:
250 mg
Sample Menu: ~1 year oldSample Menu: ~1 year oldFoodFood Protein (g)Protein (g)
¼ cup Cheerios¼ cup Cheerios 0.80.8
½ banana½ banana 0.60.6
½ cup milk½ cup milk 44
2 graham crackers2 graham crackers 22
½ cup milk½ cup milk 44
¼ tuna sandwich¼ tuna sandwich 88
½ peach½ peach 0.60.6
2 saltines2 saltines 0.60.6
¼ cup juice¼ cup juice 00
½ cup milk½ cup milk 44
½ banana½ banana 0.60.6
¼ cup cottage cheese¼ cup cottage cheese 77
¼ cup green beans¼ cup green beans 0.30.3
TOTALTOTAL 32.5 5.5 g protein32.5 5.5 g protein
>>1625 250 mg phe>>1625 250 mg phe
To meet 250 mg phe minus milk, tuna, cottage cheese:
Total Protein:5.5 g
•Is this adequate protein to support growth?
•Is this adequate energy to support growth?
•What about adequacy of other nutrients?
Tools of Management: Low protein Tools of Management: Low protein food productsfood products
Phe content of regular Phe content of regular productsproducts
Phe content of low protein Phe content of low protein productsproducts
RiceRice 300 mg/cup300 mg/cup LP riceLP rice 23 mg/cup23 mg/cup
PastaPasta 163 mg/cup163 mg/cup LP pastaLP pasta 5 mg/cup5 mg/cup
BreadBread 105 mg/slice105 mg/slice LP breadLP bread 10 mg/slice10 mg/slice
CheerioCheerioss
93 mg per ½ cup93 mg per ½ cup LP LoopsLP Loops 5 mg per ½ cup5 mg per ½ cup
SaltinesSaltines 65 mg/5 crackers65 mg/5 crackers LP saltinesLP saltines 3 mg/5 crackers3 mg/5 crackers
PotatoesPotatoes 145 mg/cup145 mg/cup
Typical Food Pattern for a Child Typical Food Pattern for a Child with PKUwith PKU
Energy needs:Energy needs:1000-1300 kcal1000-1300 kcal
Protein needs:Protein needs: 20 20 gg
Phenylalanine Phenylalanine needs:needs: 250 mg250 mg
Formula Formula prescription:prescription:– Phenyl-Free: 125 gPhenyl-Free: 125 g– Similac pdr: 50 gSimilac pdr: 50 g– Water to 40 ozWater to 40 oz
Food prescription:Food prescription:– 25 mg phe, 200 25 mg phe, 200
kcal, 0.5 g proteinkcal, 0.5 g protein
1 year old, weight & length at 501 year old, weight & length at 50thth %ile for age %ile for age
Monitoring Adequacy of TreatmentMonitoring Adequacy of Treatment
Measure plasma amino acidsMeasure plasma amino acids– Maintain in treatment rangeMaintain in treatment range
Monitor nutrient intakeMonitor nutrient intake– Restrict phenylalanine, supplement tyrosine, Restrict phenylalanine, supplement tyrosine,
adequate protein, energy, other nutrients to adequate protein, energy, other nutrients to support growth and ensure good healthsupport growth and ensure good health
Monitor growth incrementsMonitor growth increments– Typical growth expectedTypical growth expected
Monitor cognitive developmentMonitor cognitive development– Typical achievement expectedTypical achievement expected
Effective Blood Level Management Effective Blood Level Management in Childhoodin Childhood
Blood levels once per month, or more frequently if needed for good management
Age of Child Tasks for Children and Parents0-6 months Parents learn about and adjust to PKU6 months Start low-protein solid foods6-7 months Introduce cup8-9 months Introduce finger foods10-15 months Consider weaning from bottle (discuss transition with clinic staff)2-3 years Learn the concept of “formula first”
Learn to distinguish “yes” and “no” foods4-5 years Begin to learn to count foods – “how many”
Begin to use scale – “how much”5-6 years Assist in formula preparation
Teach children how to deal with other children’s curiosity about PKU7-10 years Prepare formula with decreasing supervision
Choose after school snackLearn to pack school lunchBegin to list foods on food recordBegin weighing food regularly on scale
10-12 years Begin to prepare and consume formula independently each day (withparental monitoring)
Prepare simple entrees independentlyKnow what blood levels are ideal
13-14 years Increasing self-monitoring (with continued parent support) in formulapreparation and consumption
Independently manage total phenylalanine intake for the dayLearn menu planningResponsible for food records
15-17 years Responsible for all aspects of self-managementAble to do ‘finger poke’ for blood testAble to explain basics of PKU – “What is it?”Responsible for remembering recent blood levelsContinued parent support
18 years Transition to adult-based clinic careReady to live independently, including:-formula preparation and consumption-food preparation and records-monthly serum phenylalanine levels
PKU PKU Management Management
GuidelinesGuidelines
Self-Self-management management
SkillsSkills
Goal of Lifetime Management of Goal of Lifetime Management of PKUPKU
To maintain To maintain metabolic balance metabolic balance while providing while providing adequate nutrients adequate nutrients and energy for and energy for normal physical and normal physical and intellectual growthintellectual growth
Maternal PKU Concerns/OutcomesMaternal PKU Concerns/Outcomes
Women with PKU are at high risk for Women with PKU are at high risk for delivering a damaged infantdelivering a damaged infant– Placenta concentrates phe 2-4xPlacenta concentrates phe 2-4x
MicrocephalyMicrocephaly Cardiac problemsCardiac problems
Infant IQ directly related to maternal blood Infant IQ directly related to maternal blood phe levelphe level
Outcome improved with maternal blood Outcome improved with maternal blood phe <2 mg/dl prior to conception and phe <2 mg/dl prior to conception and during pregnancyduring pregnancy
Nutrition and NBS: Community – Nutrition and NBS: Community – Glutaric Acidemia, type I Glutaric Acidemia, type I
Defect in lysine and Defect in lysine and tryptophan catabolismtryptophan catabolism
Treatment: Treatment: – LYS- and TRP- restriction LYS- and TRP- restriction
(specialized formula, low (specialized formula, low protein food pattern) protein food pattern)
– RiboflavinRiboflavin– Frequent monitoringFrequent monitoring– Aggressively prevent Aggressively prevent
catabolism catabolism metabolic crisis metabolic crisis Symptoms:Symptoms:
– Macrocephaly, frontotemporal Macrocephaly, frontotemporal atrophy and delayed atrophy and delayed myelinationmyelination
– Myoclonic seizures, ataxia, Myoclonic seizures, ataxia, choreoathetosischoreoathetosis
– Intermittent metabolic Intermittent metabolic acidosisacidosis
Glutaryl-CoA dehydrogenase deficiency
Example: Infant with GAIExample: Infant with GAI 12 month old12 month old Medical conditions:Medical conditions:
– Glutaric acidemia, type 1 (identified by NBS)Glutaric acidemia, type 1 (identified by NBS)– Cystic fibrosisCystic fibrosis– Meconium ileus (repaired)Meconium ileus (repaired)– GERGER
Goals: optimal nutrition status, avoid metabolic Goals: optimal nutrition status, avoid metabolic decompensation decompensation
Simplified nutrition-related historySimplified nutrition-related history– Breastmilk (or Isomil)+ Glutarex-1 to restrict lysineBreastmilk (or Isomil)+ Glutarex-1 to restrict lysine– MCT oil, concentrated formula for weight gain; pancreatic MCT oil, concentrated formula for weight gain; pancreatic
enzymesenzymes– Solid foods introduced when developmentally appropriateSolid foods introduced when developmentally appropriate– NG tube NG tube g-tube placed by 2 mo g-tube placed by 2 mo
Example: Infant with GAIExample: Infant with GAI
““The Players”The Players” Family: Family:
mother, father, infant, mother, father, infant, extended familyextended family
Biochem team: Biochem team: geneticist, nutritionist, geneticist, nutritionist, genetic counselorgenetic counselor
Pulmonary team:Pulmonary team:pulmonologist, nutritionist, pulmonologist, nutritionist, social worker, nursessocial worker, nurses
Primary care:Primary care:pediatricianpediatrician
Community:Community:therapists, WIC nutritionist, therapists, WIC nutritionist, public health nurse, home public health nurse, home infusion companyinfusion company
Example: Infant with GAIExample: Infant with GAI
MNT and monitoring plan:MNT and monitoring plan: Formula – preparation, Formula – preparation,
“recipe,” tolerance“recipe,” tolerance Blood levels – schedule, Blood levels – schedule,
lag between draw and lag between draw and resultsresults
Growth and nutrient needs Growth and nutrient needs – balance approaches for – balance approaches for CF and GA1CF and GA1
Food – introduction of Food – introduction of solids, oral aversionsolids, oral aversion
PrioritizationPrioritization CommunicationCommunication
Nutrition and NBS: CommunityNutrition and NBS: Community
PHN and interpreter make monthly visits to PHN and interpreter make monthly visits to family of young child with MSUD. family of young child with MSUD.
Through pre-arranged phone calls, we can Through pre-arranged phone calls, we can discuss formula composition and discuss formula composition and preparation, and solid foods.preparation, and solid foods.
This helps provide information between This helps provide information between regular clinic visits.regular clinic visits.
Nutrition and NBS: CommunityNutrition and NBS: Community
A woman with PKU is enrolled in te First A woman with PKU is enrolled in te First Steps program (WA State MSS)Steps program (WA State MSS)
The RD with PKU Clinic provides consultation The RD with PKU Clinic provides consultation to the First Steps RD, about management of to the First Steps RD, about management of amino acid levels.amino acid levels.
Nutrition and NBS: CommunityNutrition and NBS: Community
The family of a child with propionic acidemia The family of a child with propionic acidemia receives formula from home infusion receives formula from home infusion company. company.
The home infusion RD is able to make home The home infusion RD is able to make home visits to evaluate growth and intake, and visits to evaluate growth and intake, and communicates with clinic RD.communicates with clinic RD.
This helps to ensure that the family is able This helps to ensure that the family is able to implement recommendations.to implement recommendations.
Nutrition and NBS: CommunityNutrition and NBS: CommunityThe baby has a “positive PKU test”The baby has a “positive PKU test”
What were the blood phenylalanine (phe) What were the blood phenylalanine (phe) or other critical elevated blood levels?or other critical elevated blood levels?
When was the sample collected?When was the sample collected? What is the protocol for confirming the What is the protocol for confirming the
diagnosis?diagnosis? When was the diagnosis made?When was the diagnosis made? Did this referral come from a screening Did this referral come from a screening
test? If so, what is the next step toward test? If so, what is the next step toward diagnosis?diagnosis?
Is the family aware of the results?Is the family aware of the results?
Information Needed by Community and Information Needed by Community and Metabolic Teams Before MNT is InitiatedMetabolic Teams Before MNT is Initiated
If an infant has been identified by NBS:If an infant has been identified by NBS: Which NBS results are positiveWhich NBS results are positive Birth date and age of the infantBirth date and age of the infant Birth weight and gestational ageBirth weight and gestational age Current weightCurrent weight Current form of feeding, and intakeCurrent form of feeding, and intake Current health status of the infantCurrent health status of the infant
Critical Questions about Follow-up Critical Questions about Follow-up and Coordination of Treatmentand Coordination of Treatment
Who is your contact at the metabolic center?Who is your contact at the metabolic center? What is the recommended treatment for the What is the recommended treatment for the
disorder?disorder? What nutrition intervention is required? How is What nutrition intervention is required? How is
this monitored?this monitored? What is the mechanism for follow-up and testing?What is the mechanism for follow-up and testing? Who will prescribe the specialized formulas?Who will prescribe the specialized formulas? How will the community and metabolic teams How will the community and metabolic teams
communicate about intervention?communicate about intervention?
The TeamThe Team
ChildChild Age-appropriate self-mgmt skillsAge-appropriate self-mgmt skills
ParentsParents Health status monitoring, teaching, Health status monitoring, teaching, advocacyadvocacy
NutritionistNutritionist MNT, feeding skillsMNT, feeding skills
GeneticistGeneticist Medical monitoringMedical monitoring
LabLab Laboratory monitoringLaboratory monitoring
Medical HomeMedical Home Well Child Care, family supportWell Child Care, family support
PsychologistPsychologist Developmental monitoring, screeningDevelopmental monitoring, screening
Community Providers Community Providers (RD, PHN)(RD, PHN)
Family support in communityFamily support in community
SchoolSchool Educational programs, tx monitoringEducational programs, tx monitoring
Therapists (OT, PT, SLP, Therapists (OT, PT, SLP, etc.)etc.)
Developmental monitoring and interventionDevelopmental monitoring and intervention
NBS and the Community: NBS and the Community: ChallengesChallenges
Understand the implications of the Understand the implications of the results of newborn screening testsresults of newborn screening tests
Develop a communication system Develop a communication system between the community providers between the community providers and the metabolic team for support and the metabolic team for support of treatmentof treatment
Interact with PCPs and families as Interact with PCPs and families as needed, to support appropriate MNTneeded, to support appropriate MNT
NBS and the Community:NBS and the Community:What you need to knowWhat you need to know
Which disorders are identified by NBS in Which disorders are identified by NBS in your state? Where do you find this your state? Where do you find this information?information?
What is the difference between What is the difference between screening screening and and diagnostic resultsdiagnostic results??
What is the system for follow-up of What is the system for follow-up of presumptive positive NBS results?presumptive positive NBS results?
How do you make referrals to regional How do you make referrals to regional genetics clinics and specialty care clinics?genetics clinics and specialty care clinics?
Caveats to PonderCaveats to Ponder
Is it really a disorder?Is it really a disorder? What are we talking about? What are we talking about?
– Is GA1 really Is GA1 really so so different than GA2?different than GA2?– If we’re out of MSUD Analog, can we use MSUD If we’re out of MSUD Analog, can we use MSUD
Maxamaid?Maxamaid? Screening vs. diagnosisScreening vs. diagnosis Is it really PKU?Is it really PKU?
Scenes from the Scenes from the Annals of Reporting Annals of Reporting and Acting on NBS Resultsand Acting on NBS Results
A primary care physician telephones are A primary care physician telephones are reports there is a new baby with PKU and reports there is a new baby with PKU and asks that you please start the infant on asks that you please start the infant on formula ASAP.formula ASAP.
What additional information What additional information do you need?do you need?
What would you do?What would you do?
Scenes from the Scenes from the Annals of Reporting Annals of Reporting and Acting on NBS Resultsand Acting on NBS Results
You are on-call for the weekend for your You are on-call for the weekend for your local hospital and you receive an order from local hospital and you receive an order from the newborn nursery on an infant with the newborn nursery on an infant with presumptive galactosemia and a request for presumptive galactosemia and a request for the initiation of treatment.the initiation of treatment.
What additional What additional information do you need?information do you need?
What would you do?What would you do?
Additional InformationAdditional Information Washington State Newborn Screening Washington State Newborn Screening http://http://
www.doh.wa.gov/ehsph/phl/newborn/default.htmwww.doh.wa.gov/ehsph/phl/newborn/default.htm Star G-Screening, Technology, and Research in Genetics Star G-Screening, Technology, and Research in Genetics
http://newbornscreening.infohttp://newbornscreening.info National Newborn Screening and Genetics Resource Center National Newborn Screening and Genetics Resource Center
http://genes-r-us.uthscsa.eduhttp://genes-r-us.uthscsa.edu
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