Benefitting the Cystinosis Research Network,
in honor of Alexis & Evan LeBeau
Evan
(4 years old - diagnosed at 3 months old)

Wake-up

7:30am
    -Cystagon - 2 big pills
Depletes Cystine content by approx. 90% in all cells- must be
given every 6 hrs
    -1 eyedrop in each eye

After Breakfast (8:30am)
    -Polycitra K - 4ml
    -Carnitor - 1 Tablet
    -Calcitrol - 1 pill
    -Repeat Eyedrops

These supplements replace the electrolyte loss due to Fanconi's syndrome/Kidney Damage. 

9:30am
    -Repeat Eyedrops

10:30am
    -Repeat Eyedrops

11:30am
    -Repeat Eyedrops

1:30pm
    -Repeat Cystagon dose
    -Repeat Eyedrops

3:30pm
    -Repeat Eyedrops

4:30pm
    -Repeat Eyedrops

5:30pm
    -Repeat Eyedrops

7:30pm
    -Repeat Cystagon dose
    -Prilosec - 1 pill
    -Repeat Eyedrops

Prilosec - reduces stomach acid build up and vomiting by medicines and disease

8:00pm (bedtime)
    -Polycitra K - 4ml
    -Carnitor - 1 Tablet

1:30am
    -Repeat Cystagon dose
Alexis
( 6 years old - diagnosed at 2 1/2 years old)

Wake - up

7:30am
    -Cystagon, 2 big pills
Depletes Cystine content by approx. 90% in all cells-must be
given every 6hrs.
     -1 Cysteamine Eyedrop in each eye

After Breakfast (8:30am)
    -Potassium Citrate - 1 Tablet
    -Carnitor - 1 Tablet
    -K-Phos Neutral Tablet
    -Calcitrol, 1 pill
    - Repeat Eyedrops

These supplements replace the electrolyte loss due to Fanconi's syndrome/Kidney Damage.

9:30am
     -Repeat Eyedrops

10:30am
     -Repeat Eyedrops

11:30am
     -Repeat Eyedrops

1:30 pm
   -Repeat Cystagon dose
   -Repeat Eyedrops

3:30pm
     -Repeat Eyedrops

4:30pm
     -Repeat Eyedrops

5:30pm
     -Repeat Eyedrops

7:30pm
     -Repeat Cystagon dose
     -Prilosec - 1 pill
     -Repeat Eyedrops

Prilosec - reduces stomach acid build up and vomiting caused by medicines and disease.

8:00pm (bedtime)
   -Potassium Citrate - 1 Tablet
   -Carnitor - 1 Tablet
    -Indocin - 1 Pill
    (Needs Diaper for Bedtime and water)

Indocin, a NSAID that reduces excessive thirst and urination by some 60% therefore
improving quality of life significantly but long term use causes further damage to kidney and
bleeding ulcers in stomach.

1:30am
    -Repeat Cystagon dose
    (Change Diaper in middle of night, refill water)
* Note - The Cysteamine eyedrops are given to deplete the cystine crystal build up in the corneas that causes severe sensitivity to light and significant pain.  They are not FDA approved and
must be given 8-12x/day for the rest of their lives. 
They are obtained at the
National Institute of Health in Bethsada, Maryland.