Even if the medication you want is generally OTC (like Benadryl or Tylenol), you will still need to have a doctor's prescription to get it filled at a compounding pharmacy.
Some doctors aren't willing to do this, and will try to tell you that "a little bit of corn starch won't hurt you". But it can, and most likely will. If your doctor is one of these, please find a new doctor. Nothing is more dangerous than a doctor who does not take your extremely valid, potentially deadly condition seriously.
Getting a medication compounded, even once you find a willing doctor, can be a little tricky.
Each compounding pharmacy is a little different. Some pharmacies will do compounding, but their compounding experience is merely crushing up the pills to mix together into a salve, or crushing up an adult dose medication into one suitable for a child. These pharmacies are NOT where you want to have your prescription filled.
What you're looking for is a pharmacy that primarily does compounding. To locate a potential pharmacy for this please visit International Academy of Compounding Pharmacists and search for a pharmacy near you under the "Compounder Connect" button on the side. This will give you a good place to start.
Once you've found a potential compounding pharmacy, you're going to want to ask them some questions before you get anything filled there. You'll want to talk to an actual pharmacist or the person who will actually be making your medications, so be sure to call ahead or visit during a slow time (usually mid-morning, mid-afternoon, or late night) to make sure they can give you their full attention. Bring with you a copy of the Corn Allergen List and what medications you'd like to have compounded.
Not every medication is able to be compounded corn-free. Newer medications still under their original patents (aka those new meds on commercials) will not be able to be compounded corn-free. However, there are quite a few medications that can be compounded corn-free.
When talking to your potential new pharmacist, do make sure to ask if they compound medications from the pure powders and not from crushed pills. Be careful to explain to them that you cannot take the premade pills, and would need them to obtain a pure powder that does not contain any corn derivatives (this is where the list comes in handy).
Once you've gotten this far, and they're willing and able to get the pure powders to formulate your medications for you, you'll need to inquire about fillers. Fillers are what is mixed with the pure medication in order to get it in a dosable form. IE: taking a nano-gram speck of a medication is not sensible for you, or them. So they mix the medication (dilute) with fillers to make it easier to measure and dose.
You can get medications compounded into liquid form, or put into capsules. Both have some risk of containing corn, but capsules are a little easier to get corn-free than liquid.
With liquid medications, pharmacists will want to add flavorings and sweeteners to make it tolerable to swallow. Most of the flavorings or sweeteners will contain some form of corn. Some mothers have reported being able to get the liquid unflavored and unsweetened, and mix a dose at home with a homemade sugar syrup or in applesauce. Do keep in mind that liquid is not always very portable, and usually needs to be kept refrigerated. It also tends to expire quicker.
Capsules are easier, and the filler is generally just a simple powder. You will need to double check the source of the capsule to make sure it isn't corny. Most pharmacists will work with you on this, as well as with the filler. Lactose and corn starch are the two they generally work with, but most will allow you to bring in a safe starch for use with your pills (tapioca, potato, arrowroot, etc). Compounded capsules usually expire 6-12 months from date of fill, and are easily portable - just like any other pill. Some mothers get medications this way, open the capsule into a safe applesauce or similar to give to children.
Talk to the pharmacist about these options, and decide which way you'd like to go, and the risks of each. Make sure to ask about the ingredients and investigate each and every filler they may want to use. Write down for future reference what they can and cannot use with your scripts as you may need to give them a copy of this information with each fill. A good pharmacy will keep this info on record, but you can never be too careful.
Compounding medications also costs quite a bit more. It can be quite time consuming for pharmacists and their staff to make each pill (often by hand), so there are reasons for its price. Though for most of us who have experienced compounded vs corny pills, the compounded ones are priceless. :)
Costs of compounding are different for each pharmacy you use. I've heard of compounding costing from $1-$3 per pill. Some pharmacies give you a price break for quantity, in which the more pills you get per fill, the less cost per pill it is. You'll want to discuss this with the pharmacist as well.
Most insurances do not cover compounded medications. So make sure to call your insurance and find out what their coverage is. Some compounding pharmacies will submit your claims for you, some will not. You may have to manually submit your claims yourself. Most insurances that do cover compounded medications will only cover it at the highest cost copay on your plan.
Once you've figured out where you can get your medications, and which medications you can obtain through compounding.. It's time to get your scripts written.
Many doctors, even if they're willing, don't have a clue on how to write a compounded prescription. Most compounding pharmacies are used to this and will call the doctor with any info they need or if they have a question. But the following are the "usual" on what needs to be said in a compounded script:
Drug Name: avoid brand names. Doctor should write diphenhydramine not Benadryl, or acetaminophen not Tylenol. It may be allowable to write "Generic Benadryl" or the equivalent in some states.
Strength: milligrams or grams needed.
Dosage: How many and how often to take them.
Quantity: How much to give you.
For example: Diphenhydramine 25mg, 1-2 every 6 hours as needed. quantity: 60 25mg capsules.
It's best to have your doctor add (especially if the pharmacy you're working with is in any way belligerent) "Formulate corn-free" or "Corn-free" on the script. This will give you a little more leverage with the pharmacy, and some pharmacies may require this wording - so ask the pharmacy before you get the script.
Once all this is done, you'll need to double check when you drop off the script or remind them of your previous discussions and what is safe for you. When you come back to pick up the prescription, you'll need to also double check on what was used in your medication. As you and your compounded pharmacy get better acquainted through future fillings, you may not have to be quite so rigorous in double checking everything, but its worth it to be extra careful.
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Update 9/2013 - Some "compounding" pharmacies are not pure compounding pharmacies. If your pharmacy orders their compounding products from McKesson, then change to a pharmacy that doesn't. McKesson supplies regular pharmacies and is a distributor. Their supplies of "pure" powders for compounding often contain corn derivatives and aren't pure. A "compounding" pharmacy that orders from McKesson is not a pharmacy that regularly does compounding and will likely not be able to make what you need corn-free.
There are other suppliers of compounding powders which do not have the added corn such as PCCA or Letco, and likely a few others. So make sure to ask where they're purchasing their supplies from.
