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Formula and diet Management

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					                                                  Curriculum Goals
                                             Formula and Diet Management


                                                      Age Appropriate Goals
   Topic                                                         The youth can:
                       5-7 year olds               8-11 year olds            12-14 year olds             15-18 year olds
                       (grades K-2)                  (grades 3-5)               (jr. high)                   (sr. high)
Why formula?     state formula:               state formula:            state formula:              state formula:
                 1. promotes growth           1. promotes growth        1. promotes growth          1. promotes growth
                 2. lowers blood phe          2. lowers blood phe       2. lowers blood phe         2. lowers blood phe
                 3. promotes good             3. promotes good          3. promotes good            3. promotes good
                      health and nutrition         health and nutrition      health and nutrition        health and nutrition
                 4. satisfies hunger          4. satisfies hunger       4. satisfies hunger         4. satisfies hunger
Formula prep     prepare own, with            prepare own, with         prepare own                 prepare own
                 supervision                  supervision
Use gram scale   1. weigh 50 gm dry           1. weigh amt of cereal weigh appropriate foods        weigh appropriate foods
                 cereal or crax                    to provide 3-5
                 2. weigh an amount of a           exchanges (45-75
                 specific ingredient               mg phe)
                                              2. weigh snack foods
                                                   to provide 1-2
                                                   exchanges (15-30
                                                   mg phe
Plan meals       plan 3 breakfasts            1. plan 3 breakfasts      1. plan breakfast           plan daily meals
                                              2. plan 5 snacks          2. plan 5 snacks            according to phe
                                                                        3. plan lunch               prescription
Meal prep        assist in breakfast prep     1. prep breakfast         1. prep breakfast           1. prep all meals or as
                                              2. preps snacks           2. prep snacks                  negotiated with
                                                                        3. prep lunch for               family
                                                                             school and home        2. prep grocery list of
                                                                        4. prep grocery list of         desired/required
                                                                             desired/required           foods
                                                                             foods
Diet             not applicable               not applicable            not applicable              state:
adjustments if                                                                                      1. need to contact
diet is D/C’d                                                                                            clinic if
                                                                                                         discontinuing the
                                                                                                         diet
                                                                                                    2. discontinuing diet is
                                                                                                         a serious decision
                                                                                                    3. steps to promote
                                                                                                         good health and
                                                                                                         nutrition when not
                                                                                                         following the diet
Plan for         1.   record breakfast        using a check-off         record food, quantity       1. use a method of
monitoring            intake using a          system:                   and exchanges (mg)          systematically keeping
                      check-off system        1. record breakfast       eaten at:                   track of amount of phe
                 2.   report foods eaten           and snack intake     1. breakfast                eaten throughout day
                      away from family        2. report all foods       2. lunch                    2. record all foods eaten
                                              eaten away from home      3. snacks                   three days prior to blood
                                                                                                    sample




                                                    - ix -
                                    Curriculum Goals (cont.)
                              Control of Blood Phenylalanine Levels


                                                     Age Appropriate Goals
   Topic                                                       The youth can:
                         5-7 year olds            8-11 year olds            12-14 year olds             15-18 year olds
                         (grades K-2)              (grades 3-5)                (jr. high)                  (sr. high)
Risks of high      state high phe levels     state high phe levels     state high phe levels       state high phe levels
phenylalanine      can impact:               can impact:               can impact:                 can impact:
levels             1. school performance     1. school performance 1. school performance           1. school performance
                   2. brain changes          2. brain changes          2. brain changes            2. brain changes
                                                                       3. attention span           3. attention span
                                                                       4. planning and             4. planning and
                                                                            organizing abilities        organizing abilities
                                                                       5. possible, irritability   5. possible, irritability
                                                                       6. MPKU                     6. MPKU
Causes of high     state high phe levels     state high phe levels     state high phe levels       state high phe levels
blood phe          result from:              result from:              result from:                result from:
levels             1. eating too much        1. eating too much        1. eating too much          1. eating too much
                        phe                       phe                       phe                         phe
                   2. not enough formula     2. not enough formula 2. not enough formula           2. not enough formula
                   3. illness                3. illness                3. illness                  3. illness
Prep a blood       1. prep site, lancet      1. prep site, lancet      1. prep site, lancet        1. prep site, lancet
sample                  device, and gather        device, and gather        device, and gather          device, and gather
                        needed equipment          needed equipment          needed equipment            needed equipment
                   2. state why blood        2. obtain blood           2. obtain blood             2. obtain blood
                        sample must be            sample with               sample with                 sample with
                        obtained                  assistance                assistance, if              assistance, if
                                                                            needed                      needed
Reason for diet    not applicable            not applicable            state:                      state:
control prior to                                                       1. unborn baby              1. unborn baby
preg                                                                        harmed by high              harmed by high
                                                                            phe levels at any           phe levels at any
                                                                            time in the preg            time in the preg
                                                                       2. diet adjustment to       2. diet adjustment to
                                                                            lower level to < 6          lower level to < 6
                                                                            mg/dl may take              mg/dl may take
                                                                            considerable time           considerable time
Risks of           not applicable            not applicable            state untreated MPKU        state untreated MPKU
elevated phe                                                           results in offspring        results in offspring
levels during                                                          with:                       with:
preg                                                                   1. small head               1. small head
                                                                            (microcephaly)              (microcephaly)
                                                                       2. poor growth in the       2. poor growth in the
                                                                            womb (SGA)                  womb (SGA)
                                                                       3. heart defects            3. heart defects
                                                                       4. D.D. as child            4. D.D. as child
                                                                            grows                       grows




                                                   -x-
                                   Curriculum Goals (cont.)
                                    Behavioral and Social Skills
                                                       Age Appropriate Goals
   Topic                                                        The youth can:
                        5-7 year olds              8-11 year olds           12-14 year olds               15-18 year olds
                        (grades K-2)                (grades 3-5)               (jr. high)                    (sr. high)
Eat a variety     try one new fruit or        try one new fruit or veg try a fruit or veg in         try a fruit or veg in
of fruits and     veg/week for 3 weeks        each week for 5 weeks     combination with a low       combination with a low
vegetables        (emphasize breakfast        (emphasize snacks)        pro food in a new way        pro food in a new way
                  fruits)
Explain to        repeat rehearsed            apply rehearsed             apply rehearsed            apply rehearsed
friends why on    responses to inquiries      responses to inquiries      responses to inquiries     responses to inquiries
diet              about diet such as:         about diet such as:         about diet such as:        about diet such as:
                  1. I’m a vegetarian         1. I’m a vegetarian         1. I’m a vegetarian        1. I’m a vegetarian
                  2. For health reasons I     2. For health reasons I     2. For health reasons I    2. For health reasons I
                       don’t eat meat             don’t eat meat               don’t eat meat             don’t eat meat
                  3. I have PKU which         3. I have PKU which         3. I have PKU which        3. I have PKU which
                       stands for                 stands for                   stands for                 stands for
                       phenylketonuria            phenylketonuria              phenylketonuria            phenylketonuria
                  4. I’ve had it since I      4. I’ve had it since I      4. I’ve had it since I     4. I’ve had it since I
                       was born                   was born                     was born                   was born
                  5. It’s no big deal-It’s    5. It’s no big deal-It’s    5. It’s no big deal-It’s   5. It’s no big deal-It’s
                       just how I eat             just how I eat               just how I eat             just how I eat
                                                                          Pt able to decide which    Pt able to decide which
                                                                          friends it is helpful to   friends it is helpful to
                                                                          give more info to.         give more info to.
                                                                          Additional info may        Additional info may
                                                                          include: details of the    include: details of the
                                                                          diet, consequences of      diet, consequences of
                                                                          not following the diet,    not following the diet,
                                                                          genetics, and feelings     genetics, and feelings
                                                                          about PKU and              about PKU and
                                                                          treatment.                 treatment.
Select foods in   1.   with parent, plan      1.   with parent, plan      1. with parent, plan       1. plan for parties and
social                 for birthday parties        for birthday parties        for parties and            holidays
situations             and 3 holidays (e.g.        and 3 holidays (e.g.        holidays              2. request water or an
(emphasize             Thanksgiving,               Thanksgiving,          2. request water or an          appropriate
holidays as an         Christmas Season,           Christmas Season,           appropriate                alternative to food
opportunity to         and summer                  and summer                  alternative to food        offered at friends’
enjoy special          picnics)                    picnics)                    offered at friends’        homes
foods but not     2.   request water          2.   request water               homes                 3. choose allowed
to over do)                                   3.   plan for snacks at     3. choose allowed               foods from a fast
                                                   organization or             foods from a fast          food menu within
                                                   sports events (e.g.         food menu within           diet prescription
                                                   scouts, soccer,             diet prescription     4. select free foods
                                                   dance)                 4. select free foods            from menu when
                                                                               from menu when             phe allowance is
                                                                               phe allowance is           exhausted
                                                                               exhausted
Assertiveness     apply to using              apply to organized          apply to acquaintances     apply to new friends/
skills            rehearsed responses         group experience                                       dating situations
                  appropriately
Problem           practice decision-          practice decision-          apply with parents to      apply to friend or
solving skills    making with parents         making with parents         home /family situation     family situation



                                                     - xi -
                                 Curriculum Goals (cont.)
                                         The Science of PKU


                                                   Age Appropriate Goals
   Topic                                                      The youth can:
                     5-7 year olds              8-11 year olds             12-14 year olds             15-18 year olds
                     (grades K-2)                 (grades 3-5)                (jr. high)                  (sr. high)
Cause of PKU    state:                     state:                     state:                      state:
                1. I was born with         1. I inherited PKU         1. I inherited PKU          1. I inherited PKU
                     PKU                        from my parents            from my parents.            from my parents.
                2. It was passed down      2. My liver does not            They are carriers           They are carriers
                     (inherited) from           change phe                 for PKU. They do            for PKU. They do
                     my parents            3. Phe is part of               not have PKU.               not have PKU.
                3. My parents don’t             protein               2. My liver does not        2. My liver does not
                     have PKU              4. Phe builds up (in            make an enzyme              make an enzyme
                4. You can’t catch              my blood) and is           that changes phe.           that changes phe.
                     PKU from me                harmful               3. Phe is part of           3. Phe is part of
                5. My body does not        5. I don’t eat foods            protein, an amino           protein, an amino
                     change phe                 that are high in           acid.                       acid.
                                                protein               4. Phe builds up (in        4. Phe builds up (in
                                                                           my blood) and is            my blood) and is
                                                                           harmful                     harmful
                                                                      5. I don’t eat foods        5. I don’t eat foods
                                                                           that are high in            that are high in
                                                                           protein. I eat low          protein. I eat low
                                                                           protein foods in the        protein foods in the
                                                                           right amounts so            right amounts so
                                                                           my body gets the            my body gets the
                                                                           right amount to phe         right amount to phe
                                                                      6. I drink a special        6. I drink a special
                                                                           medical food to             medical food to
                                                                           give me protein.            give me protein.

Protein         understand:                understand:                understand:                 understand:
digestion and   1. Phe comes from          1. Phe is an amino         1. protein digestion        1. protein digestion
phenylalanine       food                        acid from protein     2. phe metabolism           2. phe metabolism
metabolism      2. My body uses phe             in food               3. the enzyme defect        3. the enzyme defect
                    to grow                2. My body uses phe            in PKU                      in PKU
                3. My body cannot               to grow               4. how the diet             4. how the diet
                    use any extra phe      3. My body cannot              compensates for             compensates for
                4. The diet for PKU             use any extra phe         enzyme defect               enzyme defect
                    has just the right     4. The diet for PKU
                    amount of phe               has just the right
                                                amount of phe
Risk of PKU     not applicable             not applicable             explain autosomal           explain autosomal
in offspring                                                          recessive inheritance       recessive inheritance




                                                 - xii -

				
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Description: Formula and diet Management