Discovering Resources!

This seems to be my full time job lately--finding resources for funding for expensive medications and the nutritional supplements that are considered over the counter. Our insurance company considers Pediasure Peptide and AquADEKs vitamins as "over the counter" and therefore are not paid for. I've been trying to find resources to be able to help us out since Pediasure Peptide is $166 for a case of 24 and Wade needs to drink 2-3 a day. 


I'm submitting paperwork to Abbott Laboratories to hopefully have them assist me with the price of Pediasure Peptide since our insurance denies coverage. Hopefully they will be kind enough to provide us with product or at the very least a partial reimbursement!


I've also found a great program to receive some freebies just for needing to be on pancreatic enzymes. Zenpep, a brand of enzymes, offers a program called Live2Thrive, in which anyone with a Zenpep prescription can receive free enzymes until age 2 (then after that age, a $50 voucher for each refill), free ADEK vitamins once a month, and your selection of free nutritional drinks (Scandishake, Scandical, or Carnation Instant Breakfast) once a month. Wade was on Creon, a brand that only offers freebies for Cystic Fibrosis patients. But after finding out about the Zenpep program, we're switching brand names and now we'll be getting his enzymes for free until he's two years old and free one-month supplies of vitamins and high-calorie shakes! This program is Awesome!


Earlier this week, Wade started his Neupogen shots and he needs them three times a week. The original specialty pharmacy, Coram, that the doctor called the prescription in at told me that EACH shot would cost $279.73. This was going to go towards his deductible, rather than paying a prescription copay. After having a week supply (3 shots) delivered to us, I questioned why this price was so high. So, I called our insurance and basically found out that Coram isn't their "preferred" specialty lab. So I asked who was and wanted a quote from them to compare the costs. They put me in touch with Accredo and I spent about 45 minutes on the phone with them to find out that a 28-day supply of Neupogen would cost........are you ready?.......$40 total. So, needless to say, we're switching pharmacies to Accredo. For a 28 day supply, I could have paid $3356.76 with Coram, but now I'll be paying $40 for a 28 day supply!! I was frustrated that I spent so much time on the phone and on hold, but this call was definitely worth it!!


And, I received a call yesterday from the Severe Chronic Neutropenia Registry to let me know that they received some of the paperwork for W. She asked for the rest of the paperwork from his doctor and then they could begin registering him into the registry. Remember, this is the registry that provides Neupogen for FREE once we're signed up, which may take about a month or so.

First Week of Enzymes

W started taking enzymes and AquADEKs vitamins on January 17. He needs an enzyme before every bottle or solid food feeding and the multivitamin once a day with a fatty snack (ie. peanut butter). The enzymes are little capsules and the multivitamin is a crushed up chewable tablet.

Let me just tell you that it has been a stressful week, for both me and W, to get the medicine down. You're supposed to mix the enzyme with applesauce, then feed it to him on a spoon. Yeah, that didn't go over well when W tried taking the spoon with the precious enzymes and either flinging the applesauce, spitting them out, or getting them all over his hands.


Luckily, I have the wonderful support of the SDS yahoo group--so I turned to other SDS moms and received some other ways to give enzymes. Suggestions included chocolate syrup, pudding, pear sauce, putting it in a straw, putting it in a syringe, and just dumping the enzymes straight into his mouth, then offering the bottle/sippy cup.


I tried all of them except the pear sauce, but luckily I found a method that works better than the rest. Believe it or not, the dumping it in his mouth and offering the bottle method has seemed to work the best! It's still not a perfect method, because W is now learning that when he sees the enzyme is in my hand he should glue his mouth shut! Arrggg!