Hospitals and Food Allergies

Would you like to try to guess the most food allergy unfriendly place on earth?  What place is completely unsafe?  Who has the most uneducated staff?

You might name several restaurants-like the one where you throw peanut shells on the floor.  That is unsafe, true, but you expect that.  The fact that some restaurants are unaccommodating does not come as a surprise.  After all, there is food in restaurants and the staff are not doctors or nurses.  They do not have medical school training.

I've already blogged about our unsafe experiences at our doctor's office.  That was unexpected!  The department of our allergist had snacks containing peanuts in their office-I found the evidence in the form of boxes in the trash.  No, that place should not be unsafe.

However, I would like to present the award to the most unsafe and least food allergy friendly location to----the hospital!  Yes, you might think you go there to get well.  You think they save lives.  No, the food staff is armed and dangerous with things like dairy and eggs and gluten.  You might not make it out of there!

Before I begin the story-a disclaimer-lest I get angry comments.  This award applies to my local hospital.  I'm sure there are progressive and educated hospitals somewhere.  I'd like to think so at least.  However, I've talked to other allergy families and they've had similar experiences at other hospitals, so I know our case is not an isolated one.  But, please note that this applies to an experience that we had at our local hospital and I am not making a broad generalization of all hospitals, nurses, and other medical staff.  The particular hospital will remain nameless, however.

We had a scary day.  Curly was not feeling well and kept complaining about stomach pain.  She grew pale and weak and was unable to stand steadily on her own.  She curled up on our bed and lay there moaning.  I called our doctor and he told me to head to the ER.  So, we did.

Four hours later we learned that she had appendicitis which was just what I had started to suspect.  She had surgery the following morning and everything went very well.  We got to spend several lovely days stuck in a yucky hospital room while she recovered though.

I informed all the staff and every nurse and every person I saw that Curly had dairy and egg allergies.  Hers are not severe, thankfully, but we do limit her intake of both her allergens as large amounts of either one make her feel sick.

Day 1 was liquid diet only.  She was sent fortified apple juice twice that day.  This apple juice was enriched with protein-DAIRY protein.  No thank you!  The second time, I sent the juice back with an explanation of her allergies.

Day 2 she was sent Pediasure.  Umm, that has dairy too.  It has two types of milk protein in it.  In addition, the top 2 ingredients are water and then sugar.  Next is corn maltodextrin.  Gross!  We are not drinking that either.

I noticed a note on her tray that she was not allowed milk or apples.  Well, I guess they didn't send either of those foods but it was apparent that they had NO IDEA what food allergies meant.

Day 3 she was served BBQ brisket, green beans, and mac and cheese.  That would also be dairy.

At that point I marched to the nurses station and had a few words.  I was sleep deprived, cranky, worried about my child, and beyond exhausted.

I had wised up at the end of Day 1 and sent Prince Charming to the health food store where her purchased allergy safe snacks for Curly.  She enjoyed her own applesauces, juices, crackers, and snack bars without worrying about allergies.

That's when I was thankful that it was only Curly in the hospital and not Bee.  If Bee had been in the hospital and had been served the unsafe juice, she would  have gone into anaphylactic shock.  I was so thankful that despite my exhaustion, my label-reading habit kicked in and I noticed all the unsafe foods.

After we were released I contacted the hospital administration and gave them a few pieces of my mind-nicely but firmly of course.  They were shocked and I was furious at their level of uneducation.  This is a hospital.  These are nurses and supposedly dieticians who are preparing the food for each patient in accordance with medical diets.  They had NO IDEA what they were doing and were completely unaware that the juice contained dairy.  They were unclear as the the ingredients of the Pediasure which is also dairy-based.  I received several follow-up phone calls and I attempted to educate the staff as best I could.  I directed them to online resources to help them learn more about food allergies and ingredients.

I have no idea if my calls made any impact but I hope that the hospital will one day be a safe place for those with food allergies.  Until then, if you are in the hospital:
1) Mention your allergies to every person who walks in the room
2) Question everything
3) Eat nothing
4) Bring your own snacks
5) Get out of there as soon as possible

Here's Curly, at home again, safe at the allergy free hive!

Outgrown Oat Allergy

We have some exciting news!  Bee has seemingly outgrown her allergy to oats.

Several years ago we gave her a small bite of gluten free oatmeal.  She immediately broke out in a rash around her mouth.  Since that day I have not allowed her to have any oats or oatmeal.  Even though Tiger and I often eat GF oatmeal at breakfast, I have always made something else for Curly and Bee.  Bee has never complained or even asked to eat the oatmeal.  It's funny how she seems to almost know that some foods both her as she avoids them on her own without urging from us.

Well, a few weeks ago, Bee demanded a taste of my oatmeal.  That has never happened before.  We had been considering a food challenge or testing her oat allergy again but I wasn't ready this soon.  I spoke with Prince Charming and we decided to do our own food challenge the next day when he would be home.

I made oatmeal and gave Bee one tiny bite.  She loved it and immediately wanted more.  I made her wait a long time and then gave her another bite.  Several minutes later she took one more.  I gave her the buckwheat cereal she normally ate and let her finish breakfast.  We waited and watched.  Nothing.

The next day I let her have more oatmeal.  Nothing happened that day either.

Since that day she has eaten a bowl of oatmeal for breakfast on several occasions.  She has not had one issue.

We are so thankful that we can add a food back to our list and now we have even more baking possibilities with oats and oat flour.

Bee has a new favorite breakfast (which I guess would actually be second after homemade donuts)!

Moving

Our hive has moved across the state!

We are now living in a temporary apartment as we wait for our house to sell.  We left all of our furniture and most of our things back at the house.  For apartment life, we loaded as much as we could fit into both cars and that's all we've got while we're staying here (beside the few pieces of furniture we have rented).

I feel almost like I'm camping-in air conditioning with bathrooms-which is the only way that you will ever find me "camping."  I don't think I have ever felt more disorganized in my life.  It's just not a fun feeling.

Let me say that moving with 4 small children is no easy task.  Moving with an allergy kiddo and worrying about how she'll react at the new apartment, what restaurants we'll find, what the health food stores will carry, and how we'll find new doctors and a good hospital adds a whole new kind of stress.

Thankfully we've moved to a larger area with more health food store options, more restaurants, and major medical centers.  It's going to be great, as soon as we adjust, and I have no idea how long that will take.  So far, we've been here 3 or 4 weeks (the weeks are all running together now) and I still feel completely and utterly dazed and confused.  The kids are finally starting to adjust and we're beginning to find a normal routine.  But overall we are totally out of our element.

The kids are looking forward to meeting new people and making new friends.  I, on the other hand, am not.  I do not look forward to that at all.  Why?  Because it means hours and hours of explaining the food allergies, worrying about people who don't understand or don't know us, and calling ahead to every restaurant, church, and other event to verify policies and notify them of the allergies.  Moving means lots and lots of time spent talking about the allergies.  Not only are we the new people in town, we are are the family with food allergies.

We're here.  We're completely crazy.  The kids are overwhelmed.  I'm totally disorganized.  But it's ok.  This move has been a good thing and we look forward to living here for a while.  Given a little more time, I think we'll begin to love it here.

Allergy to Lotion

Bee has a new allergy....

Calendula!!!

It took me a couple days to get this one figured out.

We had been trying a new lotion because Bee was having more eczema break outs.  This lotion was designed for those with eczema (just not for Bee, as we would learn).

After her shower and jammies, Bee became very itchy.  At first I suspected the soap, because our store had been out of our regular soap and I had to buy one that was a different fragrance.  I doctored her rash and gave her Benadryl and put her to bed.  The next night, I was ready with a different soap that we had used before.  Round 2 of itchy, rashy, hives.

That's when I realized it had to be the lotion.  I put Bee back in the shower and scrubbed her under cool water.  Then I grabbed our old lotion and started covering her.  I mixed in some anti-itch cream and gave her Benadryl.  Within 30 minutes, she was looking much better and was able to go to sleep.

We used the lotion for a week before we noticed any real issues.  Apparently her body had been slowly building histamines against this lotion, until after a week, the constant exposure to the lotion made her break out in all-over hives.

We're back to our old soap and old lotion and we've had no more issues.  That's what we get for trying something new!

So, what's wrong with calendula?  It's a flower and related to the daisy and aster family-also related to the ragweed family.  Bee hasn't been tested for ragweed allergies, but I'm betting she will test high when we test her environmental allergies in a year.  If you're allergic to ragweed, calendula might not be your best option.

Now we have 2 more things to add to our list........

Allergic to the Allergy Doctor

What happens when you have an allergic reaction at the allergist's office?

Yes, we had our big allergy appointment for testing and we were in the room patiently waiting for the doctor when Bee broke out as she was eating her snack.  At first, I suspected the snack, although it was something she had eaten many times before.  Then I began to inspect our room.  In the trash can I found a box which had contained individual packages of a trail mix that contained peanuts.

I immediately found a nurse in the hallway and showed her the trash.  She had the trash taken out and I washed Bee's face and hands.  Within several minutes the hives began to subside.

I'm glad she was ok and the reaction was small.  But I was still furious.  We are at the office of our allergist/immunologist.  No one in that building should be eating a snack containing peanuts.  Many of their patients are peanut allergic and those reactions can be life threatening.

Why don't people think?

Doctor Appointments

Well, we had our big allergy appointment in April (during which time Bee had an allergic reaction) and what information did we learn?  Not. one. thing.

Bee had a respiratory infection the week prior to our appointment and still had a slight cough at the time of the appointment.  After the doctor evaluated her, she would not do any testing because she was worried about her wheezing.  Her concern was that Bee might have a more severe reaction during testing because her breathing was already compromised.

I drove 3 hours round trip to learn nothing!

Instead, we spent 2 hours in the office meeting with our dietician and 2 respiratory therapists.  The doctor ordered Bee to have several doses of medicine with an inhaler.

The doctor insisted that Bee sounded better after her doses, but I couldn't tell a difference in her breathing or her cough.  The medicine did make her jumpy, cranky, and irritable though.  So, I drove home with a coughing cranky kid.

We rescheduled the testing and waited a month for our new appointment.  The day before that appointment, Bee became very sick again.  I cancelled that appointment, knowing that even if I made the trip, no testing would be done and I would be wasting my time.

So, we haven't had our allergy appointment yet!  I was so hoping for answers or lower numbers or any signs of improvement.  I guess we'll keep waiting!

Unexplained

A few weeks ago, Bee had a rash around her mouth at every meal.  This lasted for almost a week.  We have not figured it out.  Food allergies and hives are frustrating but nothing is more frustrating than a reaction with no known cause.

I have gone over each meal to see if there was a link but I can't find a common food among the meals.  I can't think of anything that has changed like our soap, shampoo, laundry detergent, etc.  Nothing is different that I can tell.

The only thing we can pinpoint is the weather.  We've had some crazy weather-hot one day, much cooler the next, a very windy day, and then the next is pouring rain.

My only thought is that the weather changes have affected Bee's allergies, brought out her eczema, and made her have a constant rash.

As an allergy parent, we have many instances of the unknown.  You have to play the role of detective or doctor.  It's such a relief when we are able to pinpoint a new allergy or a cause.  Other times, we just have to live with knowing that we will never have it completely figured out.  It's such a mystery!  How do you find contentment in not knowing?