One Step Closer to a Cure?

If you look back in the history of this blog, you will find a disproportionate amount of postings deal with Madeline's feeding issues.  If you really think about it, we have to feed her every 3-4 hours of every day and it is a problem that extends past a normal feeding time.  

Let's take a stroll down memory lane for a quick recap of where we have been with this issue.  We started out breast feeding and supplementing with Enfamil with Lipil.  To put it in perspective, we were buying that formula in bulk at Costco and using a coupon and could get approximately 48 ounces of powder for about $20.  When she became allergic to that, we moved onto Nestle Good Start with Soy.  That formula comes in a 32 ounce container and costs about $25.  A negligible difference, but after only 3 days, she was showing signs of allergic reaction there too.  Next, we went to Nutramigen, a hypo-allergenic formula made by Enfamil for children with milk protein and soy allergies.   I thought that was the end of the road, so after finding it online at a discounted price, about $20 for a 16 ounce can (regularly $27 per 16 ounce can), I bought 12 cans.  We have also had her on two different meds for her acid reflux, which is actually a slighly seperate problem.  

That should bring everyone up-to-date.  Sorry to my die-hards who already knew those things.  Ok, so Madeline also could not tolerate the Nutramigen and Dr. Hertzer suggested that we meet with a peds gastorentorologist about how to best help Maddy.  We went to Dr. Kaplan yesterday.  After an hour meeting of questions, tests, and an exam, we got a formal diagnosis and some new things to try.  Madeline has a severe milk protein allergy and acid reflux.  

For the reflux, we are not changing the medication, just the dose.  Easy enough.  The milk protein allergy means a new formula (and yes, we still have some Nutramigen left).  This formula is called Neocate and here is the kicker, you cannot buy it in stores.  You have to buy it directly from the manufacturer and you have to buy it in 4-can cases.  Each case costs $139-$149 and each can now only 14 ounces.  Oh, did I mention that it is also a 1:1 ration of formula and water, as opposed to the usual 2:1 that all of the other formulas we tried had!  

If this new regiment works, I will gladly fork over the money (well maybe not gladly), but I will pay it and reap the rewards.  The doctor said that over the next two weeks, if we do not see an improvement, we should go back to the Nutramigen because if it does not work, it isn't worth the money.  

She also suggested that we adjust her crib on an incline and never feed her more that 4 ounces every 3-4 ounces.

What have I noticed so far in terms of improvement? I am not sure.  Maddy screamed her head off all afternoon to the point that I called Alex at work, but then she woke up in a great mood this morning and has yet to cry.  That is new, I suppose.  I am not ready to draw a conclusion (or order the formula in bulk just yet), but again, I remain cautiously optimisitic.