Lily's Medication

I was asked the other day what medication Lily was on.  I thought, instead of emailing the person directly, that I would post the list of her medication and some trouble that we've had with it along the way.


Miralax:  Dave gives Lily this in the morning while he's getting ready to go to work.  She gets 1 teaspoon mixed in 4 ounces of water.  This helps with Lily's constipation.


Erythromicin:  (Not sure I spelled this one correctly.)  Lily gets 1 ml of this before she has her formula.  Every time.  We had a time with this one at the pharmacy.  The generic version was on backorder at the pharmacy we go to, so I had to go downtown to the hospital pharmacy to pick up this one.  Not very convenient, unless Lily had an appointment there.  But now the pharmacy down the road has it, so we can get it from there.  The weird thing is that the medicine we got from the pharmacy was white and didn't have to be refrigerated, nor did it expire.  The medicine from the closer pharmacy is pink, has to be refrigerate, and only lasts for ten days.  I think I'd rather get the medicine from the hospital pharmacy, even though time/distance-wise it's a little more inconvenient.  Lily takes this because her stomach empties slowly, which can cause vomiting and reflux.


Zantac:  Lily gets 2 teaspoons of this at her first feeding and her last feeding.  This helps with reflux.  When she first started this, she was on it for only two weeks.  After we stopped all of her medicine and realized she needed to back on it all, we came back to the Zantac (generic version of it) and have stayed on it this time.  Whereas last time Lily's vomiting was sporadic, this time, it's been quite under control.  Lily takes this medicine for reflux.


Prevacid:  UGH!!!  This medicine has been the biggest headache for us!  At first, Lily was on the generic solutab version of this.  I'd put it in a medicine dropper, pull up water, and then put it in her g-tube.  Easy enough, although one time it did clog her tube, and I had to do a tube switch here at home by myself.  (Not something I'm a big fan of doing, but at least I can do it.)  Now, however, the generic version does not exist.  INSURANCE--one of the biggest, greediest, I'll-pretend-I'm-helping-you-while-I-really-rip-you-off entities out there--(sorry, can you tell I've been a round or two with them?)--won't approve the brand name because it just so happens to cost $200 for a thirty day supply (I was also told it costs $600, but I didn't want eyeballs to pop out.)  So while I'm waiting. . .and waiting. . .on a prior authorization (which is the BIGGEST joke because why can't the insurance company see that the doctor prescribed it in the first place for a REASON!!)  (Oh, we've had the same run-in with Xopenex--which isn't supposed to increase heartrate, but is more expensive, and Albuterol, which causes high heartrate (Lily's heartrate generally runs high, she doesn't need a medicine that makes it worse.)  But I digress, the prior authorization hasn't been approved, so we're giving Lily over-the-counter capsules that we have to break open and give via water.  Problem is, the little tiny balls get stuck in the medicine dropper and in her extension tube, so she's not completely able to get this medicine.  It just bothers me because she's been doing so well, and I'm so afraid she's going to revert back to the vomiting.  Lily gets this medicine once a day.  


Nasonex:  I'll admit that I'm bad with this medicine.  I don't always give it to Lily because I just can't stand to think that she's on so much medicine.  This is more for her allergies, which haven't seemed to be acting up, so I've not felt the need to give it to her.  A nurse did tell me that a good way to handle it is to give it on three months, off three months:  March - May and Sept. - Nov.  (I think those are the months she said.  Anyway, the allergy-season months.)  


Poly-Vi-Sol with Iron:  Not a medicine, but a vitamin.  Lily's hemoglobin came back low at one of her appointments, so she was put on that.  One ml once a day.


There you have it.  Those are Lily's medicines.  We wish she didn't have to be on so many, but if it makes her systems work, they're better for her.  I know that, compared to other children with her condition, it's not a whole lot, and for that I'm thankful, but like I said, I wish she didn't have to be on any.  Sorry about my bitterness with insurance.  I'm grateful that we have it, no doubt, but they are out there to make a profit, and when money gets in the way of making decisions about people's health, I just have trouble accepting that.  Big trouble!


Lily's on the floor going c.r.a.z.y. right now.  She's so happy and rolling back and forth and beating her arms like she's playing the drums.  I think she needs a little stimulation before bedtime.  :)