Hemolytic Anemia & G6PD Deficiency: How I survived intravenous corn derivatives.

If you’ve ever read my posts on ER Safety, Hospital Safety, or the Hidden Corn- Medical Supplies post, you probably know that blood transfusions contain corn derivatives. I’ve known this a while and made plans for eventually having to have an emergency treatment that would require corn exposure in order to save my life. But I had always hoped it just wouldn’t happen to me. But of course it did, last July.

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Hospital and Medical Safety With a Corn Allergy

Updated 2/21/2017

I’ve written a bit about how to stay safe in emergency situations, but not about longer hospital stays and planned surgeries. There’s no possible way for me to cover every possibility, so the best way to stay safe in a medical context is to familiarize yourself with where corn hides in medical supplies, in food, and in medications, and familiarize yourself with the list of ingredients commonly derived from corn and if possible train a family member or loved one on these things so that they can help advocate for you.

Here are just a few suggestions for staying safe in a hospital setting. This document is very much work-in-progress, but I feel it’s important to share as much as I can think of  as soon as I have time to rather than continue waiting until I have time to be complete.

Create an Advance Healthcare Directive

If you are an adult, and you are conscious and of sound mind, you legally should always (to my knowledge) have control of your medical care (or the medical care of your dependent child). However if you are unconscious, or are deemed not to be of sound mind, someone else can (and will) make decisions regarding your care for you (or your dependent). Claiming to have adverse reactions to such commonplace ingredients such as citric acid and dextrose, or displaying fear of just about any and every medication, can seem like paranoia to physicians. It unfortunately HAS happened that those with corn allergies have been treated with psych medication instead of antihistamines, or been given medication that they had severe reactions to while they were unconscious or unable to advocate for themselves.

There is no way to guarantee that this won’t happen, but creating an advance healthcare directive, or living will, can help. Here’s more info on how to do that. What you put in that advance directive will be individual. Please do this as soon as you are able and well ahead of any planned procedures, and work with your team of medical professionals as well as your trusted corn allergy resources on the correct content.

Wear A Mask

If you are airborne reactive this is a must. If you are not usually airborne reactive, have a mask anyway, because it is likely you will be so bombarded with allergens in the hospital that you may become airborne reactive where you usually aren’t. You can find out what masks I use on my product list page.

Negotiate Safe Meds

Get the NDC # for any medication they want to use. This is found on the package insert. The paper package insert has the inactive ingredients somewhere on it, but it is hard to find in all that tiny print. Rather than scouring the inserts, look the NDC # up on DailyMed and skip to the last section, “Ingredients and Appearance.” There should be a section on inactive ingredients which you can cross reference with the corn derivatives list. 

I’ve also made a google doc spreadsheet available containing some of my findings on medications. This list was using for open heart surgery for someone, so it isn’t exhaustive of every possible med you would ever want to use. It also was done basically in one night on an emergency basis, so it is really just my off-the-cuff response after eyeballing the ingredients list. However it is a better starting place than nowhere.

When negotiating safe medications, consider not discussing corn. Explain that you have a history of allergic reactions to “excipients and preservatives” in medications, and that you really need your meds to be preservative free for your safety.

This includes premade saline flushes for iv lines. I found that out the hard way when I was recently admitted to the hospital.

When You Can’t Negotiate 100% Safe Meds, Pre-Medicate

I recently had to have blood transfusions, and not only is there  corn in blood bags, but reactions to blood transfusions are common even in those without allergy problems. This was scary, but I didn’t have a choice. I needed blood. The hospital admitted me even though transfusions are typically an outpatient procedure, and we agreed on a premedication protocol before proceeding with any transfusions.

If you need to do transfusions or any other procedure that may cause you to react, or if you need to take a medication for which you cannot find a corn free form, you just have to take medication to help prevent severe reactions, and remain under observation so that any reactions can be treated.

You will want to consult with your doctor on the right premedication protocol for you. I use a version of what The Mastocytosis Society recommends. I do have MCAS, however those who have “just” allergies and not mast cell disease can follow mast cell protocols with quite a bit of success.  That protocol is:

  • Corticosteroids, either intravenous 2 hours beforehand (if  this needs to be done right away), or orally starting 2 days beforehand (if you have time to plan).
    • If you receive an injection of steroids before a procedure, you need a taper of steroids to begin after the injection wears off to account for biphasic reaction or further irritation from the medication or procedure.
    • The length of the taper will depend on the procedure and your particular reactivity. Consult with your doctor.
    • For me personally, my preferred steroid injection is solu-medrol (methylpredisolone sodium succinate powder for injection- mixed in water only, no ethanol).
  • Intravenous or intramuscular benadryl  25-50 mg 1 hour before and 25-50mg IV, IM, or orally every 4-6 hours after  until chance of reaction is passed. (This may be several days depending on the procedure or medication.)
    • This needs to be intravenous or intramuscular if at all possible because it is much more effective than oral.
    • Hospira brand is safest for me diphenhydramine hcl for injection is safest for me.
    • If you are concerned about having a reaction to the benadryl or an ingredient in it, wait until the steroids have kicked in, and choose intramuscular over intravenous as it will “mute” the reaction somewhat.
    • You may be able to use another strong H1 antihistamine such as hydroxyzine if you cannot use benadryl. Consult with your doctor.
  • Oral, intravenous, or intramusculer H2 antihistamine (pepcid 40mg or zantac 150mg) 1 hour before and every 4-6 hours after until chance of reaction has passed.
    • This increases the effectiveness of the benadryl (or other h1 antihistamine).
    • This is less of a big deal to do IV or IM, and can be oral. Meaning if you can’t find a safe injectable version, ask the hospital staff to allow you to take your own H2 if you have one.

All meds should of course be prervative free and corn free.

 

Cook Ahead

If you have a corn allergy, it’s highly unlikely that you will be able to eat any hospital food, even if they swear they can cook you something corn-free. Most people, not even medical staff, just cannot understand what “corn free” is to the degree that we have to avoid it. If you know you are going to have be inpatient, cook yourself enough meals in advance to cover your planned stay and then some, and keep it in the freezer. If you don’t have a lot of freezer space, consider investing in a separate freezer. Even in an apartment it’s likely you can make room for at least a small freezer. You can likely create some vertical storage shelving above it to reclaim some of that space. (I originally said you can store stuff on top of it, and then found a TON of manufacturer advice not to do that because it interferes with venting!)  If money is a concern, you should be able to find used freezers on craigslist, although you’ll possibly need to do some work to decontaminate it since it may have had unsafe food in it. (I realize that *any* money is still money that many of us don’t have, and I totally understand and sympathize- I’m just making my ideal-world recommendations.)

As far as what to cook ahead, that depends on your preferences and safe foods. I honestly haven’t found too many things that I eat that don’t freeze and reheat well, maybe cooked eggs (which I personally am allergic to) and some types of dairy products such as cream and un-melted cheeses may get gross. When cooking for hospital visits, probably go with things that are easy to chew and somewhat bland as if you aren’t feeling well you may not enjoy chewing or spicy items, and even consider freezing or canning (more on corn-free canning here) some plain bone or meat broth in case you’re feeling too ill to tolerate anything else. I try to keep bland soups, baby-food style meat purees, broth, and fruit purees on hand for illness or a possible hospitalization.

You will need to get permission from the hospital to bring your own food. Be polite but firm about this- it’s not optional. You will also need to arrange for a place to keep frozen food and a way to reheat it.

Pack Ahead

Create a “hospital bag” (or in my case a suitcase) that contains everything you need for a hospital stay. The exact contents will depend very much on your sensitivity and needs, but I would err on the side of over-preparing, as you may find that in a hospital context, your reactivity and sensitivity ratchets up quite a bit.

Here is what is in my hospital bag:

  • 3x Twin Sheet Sets (I will react to the laundry detergents used by the hospital so need to bring my own clean bedding)
  • 3x spare twin fitted sheets (You may sweat, bleed, or otherwise soil the sheets in a hospital context, so bring spares!)
  • 2x Vog n99 Carbon Filter mask *with* head strap accessory.
  • 2x Extra mask filters (I use I Can Breathe  removable filters inside my vog mask to “double up” and help protect from airborne reactions better.)
  • 1x 3M Half Facepiece Respirator with  the  3M 60926 Multi Gas Filter Cartridges.
  • 4x hospital gowns (washed in my safe detergent)
  • 4x hospital socks (“hospital socks” refers to the kind with the treads on the bottom so you can’t slip)
  • 2x allergen pillow cover
  • 2x blanket
  • 3x panties (probably I could stand to have more, who knows how long I’ll be in there)
  • 6x cloth menstrual pad
  • 3x cotton lined waterproof mattress pads (mostly for sweat, I hope, but who knows!)
  • Towels, washcloths
  • body soap/dish soap
  • baking soda (For brushing teeth, washing hands, cleaning “whatever” – I use Karlin’s Finest)
  • shea butter (dry skin or lips, NOW brand is safe for me)
  • jojoba oil (dry skin or lips, NOW brand is safe for me)
  • hand soap in pump bottle (this is largely for setting in the room for nurses and visitors to use instead of the corny stuff)
  • phone charger (with a nice long cord so you can use it from bed while still plugged in)
  • coban tape
  • t-shirt sleeve for under pressure cuff (many react to the sanitizers used on the cuffs between patients)
  • Safe plate, bowl, spoon
  • HEPA filter (run in your room constantly and request the door be kept closed)
  • plastic tub to use as a dish washbasin
  • Safe water filter or safe bottled water (many corn allergics react to tap water or certain brands of bottled water such as Dasani)
  • safe sippy cup  with straw (if you’re sick you’ll spill- heck, I spill when not sick. I use a mason jar with a silicone koozie, a plastic sippy lid, and silicone straws)
  • 3 days worth of all daily & rescue medications.  (The hospital will not want to allow you to take your own medications but if you use the instructions above to check for corn in the medications they want to administer, and cannot identify a corn-free option, they may allow you to take your own if you calmly and rationally explain to them that you are likely to react to the excipients and preservatives in the medications they have on hand.) 

Laminated Signs

At shift changes, nurses don’t always carefully read every patients’ chart, and may mix up and forget individual patients’ needs. Hang signs anywhere there is a hazard for you to help reduce the chance of them doing something that will make you react. I have a home laminator and have pre-printed laminated signs in my bag. You can certainly use neatly hand-written signs though. But better to come up with what you need in advance than scramble while sick/injured.

  • No HAND sanitizer sign for front door
  • Keep Door Closed sign for door
  • Mop Floors with Water Only sign (consider getting translated into some commonly spoken local languages in case the cleaning staff do not read english well)
  • small do not use signs for hand soap & sanitizer
  • NO DEXTROSE NO GLUCOSE NO CITRIC ACID NO LACTIC ACID sign for iv pole

More Resources/Links

ER Safety with a Corn Allergy

ER Protocol for Mobile Devices

List of Commonly Corn Derived Ingredients (Corn Allergens List)

Hidden Corn – Medical Supplies

Hidden Corn – Food

To Epi or Not to Epi?

If you haven’t read about Natalie Giorgi’s tragic death due to an allergic reaction already, catch up here. It’s a sobering story: her parents did everything right, yet she still died.


This article by Dr. Mark Greenwald
states that the problem is that the guidelines for epipen use are incorrect. His opinion is that if a patient has a known potential for anaphylaxis and a known or suspected exposure to the allergen, epi should be given, even if symptoms have not presented. He holds that the “wait and see” approach, despite being what is advised by the medical community, is what killed Natalie.

I don’t have much more to say about it at this time. I’ll just link you to the article to read. With most articles I advise that folks don’t read the comments because of the rampant stupid, but the ones I read from this article were actually as informative as the article itself. I didn’t read them all though, so my apologies if you scroll to the bottom and someone has said something just awful.

Tragic Loss of Sacramento Teen Reveals Flaws in Anaphylaxis Guidelines

ER Safety: Emergency Medical Treatment With a Corn Allergy

Updated 2/21/2017

Emergency Medical Instructions – For Mobile

Emergency Medical Instructions – Letter size (designed for front and back)

Corn products are in many  medical supplies. In particular, dextrose and glycerin (both usually from corn) seem to be in a number of injected drugs, and those two have in the past caused me severe–even anaphylactic– reactions when they come in contact with a mucus membrane. The last time I allowed a glycerin-based gel to touch my lip, everywhere it touched swelled immediately, and my tongue swelled on that side of my face, all the way into my throat. It was terrifying.

Injections aren’t the only danger, either. Disinfectants, lubricants, preservatives, and disposable  paper products also contain enough corn to give me at least a small problem, if not a dangerous reaction. Even the sugar used to treat dehydration and restore electrolyte balance is corn-based.

Even those without such severe and immediate reactions can and have experienced significant discomfort as a result of corn in medical products. GI reactions, migraines, or rashes may not block off your airway, but they are definitely unpleasant and can still be dangerous.

The idea that someone could kill me while trying to save me keeps me up at night, so I’ve been asking a lot of questions trying to figure out how a medical responder can avoid killing me when trying to save me. I don’t have all of the answers, but I have a plan, and I hope it works.

  1. Wear some kind of medical alert bracelet. I have a MedicAlert brand bracelet, the largest size available, to fit as much as possible, which still isn’t enough. The text reads: TREAT WITH IV SALINE. ANAPHYLAXIS TO LACTATED RINGERS, GLUCOSE,DEXTROSE, SUCROSE, PCN.  (PCN is short for penicillin.) I have a membership so that I can use MedicAlert’s online medical history service but there are definitely other services out there that do similar, and plenty of other jewelry-only type vendors.
  2. Keep a thorough but succinct treatment plan in several places on your person. The document below is my best attempt at this. It is formatted to fit on a letter-sized sheet of paper, front and back. I also want to make small laminated cards to keep in my wallet and a version on an In Case of Emergency app on my mobile phone.
  3. Keep a more detailed medical history on your person and/or an online repository. There are also USB medical bracelets that you can buy and wear.
  4. Consider putting together a hospital bag ahead of time for inpatient stays that contain necessities.

I don’t know how well this will work, but I really hope it will at least keep me alive in a medical emergency.

And, of course, I am sharing what I have so far. The following is a publicly available Google Doc that you can copy to your own google doc and alter as you like. My doc includes notes on what you should change to customize for yourself. And of course it only covers a corn allergy, so if you have other allergies, such as penicillin, that need to be mentioned, it is only a starting point. Here it is:

Corn Allergy Emergency Medical Instructions – Letter size (designed for front and back)

Corn Allergy Emergency Medical Instructions – formatted for mobile

I’ll update here as I get more formats set up for wallet cards and mobile apps.  Different ICE apps have different features, but they all usually provide a widget so that the info can be accessed from the lock screen without unlocking the phone. This is important to me since I have all of my email and social networking accounts hooked up to my phone. While I’m not particularly concerned that an EMT would stop trying to safe me to try to hack into my stuff, I think that my phone could end up in ANYONE’s hands if I were incapacitated.

Note that the document is only meant to cover emergency room procedures- not routine medical care, nor longer term or inpatient procedures. I now have a post about longer hospital visits that is very much work-in-progress.

Dealing with Skeptics

Something that comes up often in any medical situation is skepticism that corn can be the root cause of all the reactions to various chemical derivatives. Rather than argue this in an emergency situation, the following tactics have worked in the past:

  • Claim chemical sensitivity: Say that you react to “preservatives,” “dyes,” and “additives.” People are for some reason more likely to believe that one can have a non-specific sensitivity to these things than that one can be reacting to the corn source of them.
  • Claim multiple sensitivities: For some reason people are more willing to believe that you are separately allergic to citric acid, potassium benzoate, polyethylene glycol, glycerine, and a dozen other ingredients than that you are only allergic to them when they are derived from corn.
  • Use the term “sensitivitiy” or “adverse reaction” rather than “allergy” unless you have a positive IgE test result to show. “Allergy” means something specific in the medical world, so if your adverse reactions are not proven to have IgE as a mediator, it’s only going to hurt your case to insist that you have an allergy. Adverse reactions can still be severe, so make sure that you stress that you have had severe adverse reactions to corn derivatives, preservatives, and excipients in medications.
  • Remain calm and be as logical as possible. If you seem emotional, you will not be taken seriously. I realize that the fear and the coursing adrenaline in emergent situations make this difficult. Try to breathe. If they are insisting that there is no choice other than a product or medication you fear you will react to, ask if they can try a small amount or do a skin test to make sure it’s safe. Also ask what their protocol is for severe reactions or anaphylaxis. This is both so that you understand what will be done if you react, and to remind them that anaphylaxis is a possibility.