I called around and found a pharmacy not far from our pediatrician and hospital, which is roughly 45 minutes to 1.5 hours from us, depending on traffic. I'm out there quite often, so it really isn't out of our way. I can drive there in my sleep by now. I asked if they could make her appetite stimulant into a suppository and they said yes, the pediatrician faxed the order in, and it was ready the next day. When I picked it up, the pharmacist said, "You know, we can make medications into transdermal gels, too. It is less intrusive than these are." He went on to tell me it is frequently done with Zofran and can be done with just about any medication. KayTar takes acetaminophen suppositories for her episodes, because it is all the pain relief we can get in the proper form, and she takes phenergan suppositories also due to the available forms. But now, this pharmacy can make ibuprofen and Zofran into transdermal gels to be applied to her wrist during an episode, and we never have to physically disturb her. It was like the clouds parted and the angels sang. I almost kissed the man. It was a heavenly moment. We have an entire new world open to us now, a world where KayTar can get any medication she needs and we never have to get it close to her mouth. It is amazing and I wish we had known about it sooner. I am thrilled! The downside is that they don't take insurance up front, you have to file a claim to be reimbursed. However, the up front cost is minimal for the service they provide. We got a month of KayTar's appetite stimulant for roughly $30. Ask me if it is worth it. Because it so is. If you have trouble getting your child or infant to take medications, I highly recommend it. They can also neutralize the bitterness of medications, unlike Walgreens or the like that just add an additional flavor over the top. They can make gummie bears or lollipops. They can do just about anything with these medications.
As for how KayTar is doing on the medication? It is making a difference. Not such a difference that we can stop Pediasure, but she is desiring to eat now, almost daily. Most days she still refuses to eat until the evening...but then she might take two jars, or a jar and a yogurt, or a yogurt and chips. She ate like a hog (okay, for HER) on Monday...1 serving of chips, 2 meat circles from her brother's lunchable, 1 Oreo, 2 jars of food. It was amazing, not only because she ate, but because of WHAT she ate. She's NEVER touched that sort of meat before this weekend. And Oreos are a no-no because of the cream inside, but she chowed down on that sucker. We are still letting her take the lead, but it doesn't feel like such a crisis, because I know most days, eventually she'll eat something...and even if she doesn't, SHE IS FINE. We saw her ECI nutritionist for the last time Monday and the squirt has finally gained! She is 29 pounds now, finally, after not gaining an ounce in what feels like forever. I've finally breathed that sigh of relief...I know that even without the food, she is okay. The eating is just icing on the cake (without all that pesky gagging). I'm so glad we found a pharmacy that enables us to get this medication into her. Surprisingly, she has no qualms about getting her twice daily "bummies" as we call them. She says "Bummies go ight hee-yah ina diaper." I think it is so strange that she prefers that to swallowing a bit of medication, but then, she's KayTar, so it makes sense. I'd love to peek inside that little brain of hers and experience this world the way she does. It would be an eye opening experience for sure. Knowing she processes things differently is one thing, but to be able to experience it? That would be amazing. Maybe one day the scientific community will be able to simulate what it is like for these sorts of kiddos, so we can all really understand what it is like to walk a mile in their shoes. I'd love to know.