Benefitting the Cystinosis Research Network, In Honor of Alexis and Evan LeBeau
Copyright 2007. Cystinosis Research Network.
All rights reserved.
Alexis
( 6 years old - diagnosed at 2 1/2 years old)

Wake - up

7:00am
Medicine
    -Cystagon, 2 big pills
Depletes Cystine content by approx. 90% in all cells-must be given every 6hrs.

After Breakfast
Medicine
    -Polycitra K , 7ml
    -Carnitor, 2ml
     -Joules', 3ml
     -Indocin, 2ml
           *given in small amount of OJ
     -Calcitrol, 1 pill
           *given Mon/Wed/Fri

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

1:00 pm
Medicine
   -Cystagon, 2 big pills
   -Polycitra K, 7ml

7:00pm
Medicine
    -Cystagon, 2 big pills
    -Prilosec, 1 pill

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


8:15pm (bedtime)
Medicine
   -Polycitra K, 7ml
   -Carnitor, 2ml
   -Joules', 3ml
    -Indocin, 2ml
        *given in small amount of OJ

1:00am
Medicine
    -Cystagon, 2 big pills
    -Polycitra K, 7ml
         *given in small amount of OJ
12x/day
Medicine
     -Cystamine Eyedrops, 2 drops/eye

Experimental drug.  If compliant with intense schedule, clears the corneas of Cystine Crystals.  Extreme light sensitivity (photophobia), painful corneal abrasions and blindness go away.  Once cleared eyedrops are given 8-10x/day indefinitely.
Evan
(3 1/2 years old - diagnosed at 3 months old)

Wake-up

7:00am
Medicine
    -Cystagon, 2 big pills

Depletes Cystine content by approx. 90% in all cells- must be given every 6 hrs

After Breakfast
Medicine
    -Polycitra K, 4ml
    -Carnitor, 3ml
         *given directly from syringe

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

1:00pm
Medicine
    -Cystagon, 2 big pills
    -Polycitra K, 4ml

7:00pm
Medicine
    -Cystagon, 2 big pills
    -Prilosec, 1 pill

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

8:15pm (bedtime)
Medicine
    -Polycitra K, 4ml
    -Carnitor, 3ml
          *given directly from syringe

1:00am
Medicine
    -Cystagon, 2 big pills