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mayrose_medication_and_food_schedule.docx
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 6:15 a.m. 
1.  Famotidine (Pepcid) (40mg/5ml susp) (10 mg)
(1.25ml) (reflux) (15 min before exjade & food) 
2.
 
Trihexyphendile (Artane) (.4mg/ml elixir) (2 mg) (5ml) (spasticity) (3)Baclofen Susp (Gablofen) (5mg/ml susp) (5 mg) (1ml) (spasticity) 
3.  
Clobazam (Onfi) (2.5mg/ml susp) (5 mg) (2ml) (seizures)
4. 
Poly-Vi-Sol Drops (50 ml bottle – A-1500IU, C-35mg, D-400IU, E-5IU, B1-.5mg, B2-.6mg, B3-8mg, B6-.4mg, B12-2mg) (1 ml) (multivitamin)
5. 
Vitamin D3 – 1200 unit liquid (240 ml bottle)  (7.5 ml) (osteopenia)
6.  
Calcium (1250 mg/5ml liquid) (1250 mg) (5 ml) (osteopenia)
7.  Flush Gtube w/ 10 ml water
8. 
Fleet Liquid Glygerin Suppositories (Dismotility) (every Saturday & Wednesday, and other days as needed)

 6:30 a.m.               
1. 
Exjade tablets (125 mg tablets) (
3 tablets)  (must be given 30 min before or 2 hours after food)
(DO NOT CRUSH EXJADE)  
2.  Give Exjade WITH crushed tablet of  Lactose Fast Act Relf Cap (60s cap)
(1 tablet) & ½ cup Orange Juice (room temperature)
3. 
Use 20 ml water to give remainder of residue & flush with 10 mls water

7:00 am                 
1.  300 ml gtube blended diet by pump or manipulation over 20 to 30 minutes
2.  Flush with 10 mls water

8:00 am                 
VENT 15-30 minutes


8:30 am                 
1.  Miralax (17g)
4 teaspoons must be mixed w/8 oz water (dismotility)
2. 
Flush with 10 mls water

11:00 am               
1.  300 ml gtube blended diet by pump or manipulation over 20 to 30 minutes
2.  60
ml water by gravity

12.00 pm               
1. 
Trihexyphendile (Artane) (.4mg/ml elixir) (2 mg)
(5ml) (spasticity)
2. 
Baclofen Susp (Gablofen) (5mg/ml susp)  (3.75 mg) (0.75ml) (spasticity)
3. 
Flush with 10 ml water

12:30 pm              
VENT 15-30 minutes

3:00 pm                 
1.  300 ml gtube blended diet by pump or manipulation over 20 to 30 minutes
2.  6
0 ml water by gravity

4:00 pm                 
VENT 15-30 minutes


5:00 pm
1.
  Miralax (17g)
4 teaspoons must be mixed w/8 oz water (dismotility)
2. 
Flush with 10 mls water

5:30 pm                 
1. 
Triamcinolone Acetonide nasal spray (
1 spray per nostril) (seasonal allergies)
2. 
Famotidine (Pepcid) (40mg/5ml susp) (10 mg) (1.25ml) (reflux)
3. 
Trihexyphendile (Artane) (.4mg/ml elixir) (2 mg) (5ml) (spasticity)
4.  Baclofen Susp (Gablofen)
(5mg/ml susp) (7.5 mg) (1.5 ml) (spasticity)
5.  Clobazam (Onfi (2.5mg/ml susp) (5 mg) (2ml) (seizures)
6.  Calcium (1250 mg/5ml liquid) (1250 mg) (5 ml) (osteopenia) 
7. 
Zyrtec-Cetirizine (5 mg/ 5ml elixir) (5 mg) (5 ml) (seasonal allergies)
8.  Flush
with 10 mls water

 6:00 pm                 
1. 
300 ml gtube blended diet by pump or manipulation over 20 to 30 minutes
2. 
Flush with 10 mls water

7:00 pm
VENT 15-30 minutes


 8:00 pm
1.  Give
670 mls water over 9.5 hours using pump (70 mls/hour) Vent simultaneously
2. 
(prevents dehydration, gas and vomiting caused by too many daily liquids )

 As Needed
1.
  Zofran-Ondansetron (4mg/5ml sol) (3 mg) (
3.75 ml) every 6 hours) (Nausea)
2.  Bifidobacterium-lactobacillus (Kidslac Probiotics packet by mouth once a day)


Important: Must mix 2 ounces water per teaspoon of Miralaz--this water cannot be substituted with daily water

Note: If MayRose’s stoole is not ice cream consistency,  consult with mom re Miralax dosage

Note: Food must be given at 4 hour intervals over 20-30 minutes to reduce reflux and vomiting

Adverse Reactions: Ativan, Intralipids, Sulfameth-trimeth, Flagyl, Protonics, Lanzoprazole (any drugs with a listed adverse effect as possible pancreatitis--no matter how small the risk)