After 2+ weeks beginning his medicine cocktail with strictly Ibuprofen, Armand has been doing well with it. Typically, he would now be starting the second medication, most likely the acne medication (used for it’s anti-bacterial and antioxidant properties) whose name escapes me. However, due to the excitement among the team about recent studies showing positive effects of miglustat, they are skipping drugs 2 and 3 for now, and moving ahead with the miglustat (brand name Zavesca). I’ve mentioned this drug many times before, this is the highly expensive drug that is also the lynch pin of the treatment — this is the one that will “turn off the faucet” of lipids that are building up in Armand’s cells.
The three main concerns we have is wondering how long our funding will hold out (*fingers crossed*), wondering when we’ll really be able to notice if it’s working or not (*toes crossed*), and wondering how he’ll do with the new diet that’s involved. Miglustat has several diet restrictions, such as no lactose (milk, cheese, yogurt, ice cream) and highly reduced sugar and starches. Basically, he has to go on a non-dairy Atkins diet — which will be hard because he’s not a carbon-based life form, he’s a carbo-based life form. The kid would bathe in mashed potatoes and Cheez-Its if I let him. No candies (Halloween?), no cookies (we love our Ari-Daddy Cookie Nights!), no pizza. No bread (at least for the time being), no pasta.
However, he does like some of the stuff we can feed him, like berries, apples, avocado, veggies (he gets that from his mom), chicken, steak, turkey, sausage, eggs and lactose-free stuff like soy milk / yogurt / cheese.
Our journey has led us directly to this moment where we feel real treatment is beginning; real hope is beginning.