PWS Resources and Treatments

There is no cure for PWS (yet!), but we have pursued a variety of resources and treatments for Dean. This is not a medical endorsement, so please do your own research, but this is what we have found to work for our little one. Many of the medications are necessary for Dean's physiological health, but the supplements seem to be needed for his optimal *functioning* in what we can observe about him. Then again, when the nutrient deficiencies show up in blood work, I guess that's as medical as it gets!

*Tev-Tropin (growth hormone) - 0.8 mg/day
*Carnitor (Levocarnitine) - 700 mg/day
*Nasonex - 1 spray per nostril/day
*Pulmicort - 1x/day (2-3x/day during respiratory illness)
*Levothyroxine - 12.5 mcg/day
*Modafinil - 50 mg/day
*Montelukast (Singulair) - 1 tablet/day
*PharmaNAC - 450 mg (1/2 tablet)/day

*Vitamin B12 (cyanocobalamin form) injections - 1,000 mcg/2 weeks
*Fish oil - 1 Coromega packet/day
*Animal Parade chewable multivitamin (1/day)
*Vitamin D3 - 2,000 IU/day
*Gentle Iron - ~8 mg/day
*Vitamin B6 - 125 mg/day

*Speech therapy - 5x/week (includes the OT/speech session)
*Swimming  - 30 min/week
*OT - 1x/week (not including OT/speech session)
*OT/speech combo - 1 hr/week
*PT - soon to be 1 hr/every other week