Wednesday, July 7, 2010

Even a single food allergy/intolerance can have an emotional effect on a child

Last night was rather an emotional roller coaster here.  My daughter was sobbing because she wants to eat like everyone else; she wants to eat what everyone else eats.  She feels so left out at school; some kids go so far as to tease her with foods she can't eat and she doesn't think many people understand.  I tried to explain to her that while it may seem unfair that she can't eat foods with dairy in them, I have worked hard to make sure she has yummy alternatives to just about everything that has dairy in it.  I also explained that while she might not be aware of it, there are so many people with food allergies, worse than what she has, who are going through the same thing or worse every day.  It is a matter of accepting that you can't eat something because it isn't healthy for you, realizing that there are so many other things that you can have, and not letting it get to you.  I realize that is difficult for an 8 yr old, but I'm hoping she will embrace that way of thinking one day.

My daughter does not have Eosinophilic Esophagitis like my son does, but she does have a problem with dairy.  It is not a true allergy, but more of an intolerance, yet not just a lactose intolerance.  So she is not actually "allergic" to it, but for the sake of making things easy for others to understand, we occasionally call it an allergy.  Usually, we just say it's a "problem with dairy" and simply explain that it makes her sick.  It is not as simple as a lactose intolerance, as she reacts to the milk, cheese, casein, whey, with or without lactose.  It causes severe stomach pain, leg pain, and occasionally vomiting.  It also messes with her GI motility, to put it nicely.  While it may not be a true allergy, it is an immune system response and we have seen evidence of that in her scopes and biopsy results when we were investigating the cause of her GI problems (when she was younger). 

When she was younger (just before she turned 2), she had C-Diff (clostridium difficile), a bacteria that took over due to antibiotics (for an infection) and anti-fungal use (for thrush).  The C-Diff did damage to her intestines as it was not diagnosed quickly enough.   She was hospitalized for 3 days due to severe dehydration from over 2 weeks of symptoms before she was finally diagnosed.  After that was successfully treated, her body was reacting to everything she ate and she had to get a feeding tube (NG tube).  The treatment for that was the same elemental formula that her brother is now on, which was prescribed to allow her gut to rest and heal.  She had that for 6 months, which was 3 months longer than expected, but then she could eat again.  However, she was still having problems with impacted stool, nausea, vomiting, stomach pain and leg pain which turned out to be from the dairy.  It took several more months to figure that out.

She was also developing some symptoms or behaviors that are commonly seen with autism until I removed the dairy.  I had recognized those things (hand flapping, palilalia, etc) and realized what they are usually associated with due to my experience with her brother.  When we finally realized it was the dairy that was causing her severe gastrointestinal problems, not only did the GI symptoms disappear, but so did the autistic-type behaviors!  That is when I started wondering what the link was, and found out (via her Drs) there have been studies linking malabsorption/malnutrition to Autism Spectrum Disorder (ASD) symptoms.  That makes total sense and could explain why she started to display them (she was suffering from malabsorption as the dairy caused inflammation in her GI tract) and may possibly be why so many kids with eosinophilic disorders are on the spectrum (it isn't uncommon with celiac, etc as well).  However, that's a topic for another time...

Unfortunately, people aren't always understanding or thoughtful of how a child might feel and they don't always consider her when choosing snacks, treats, etc.  This really affects her at times, but she gets embarrassed if someone sees her cry, so she won't let them know how hurt she is.  She waits until she gets home and tells me, then I tell others, who don't always believe me because she "seemed fine" or "didn't act upset".

She has been left out of things, but so has her brother.  My heart ached when he told me about an experience he had one day in 3rd grade.  He was solely tube-fed then and wasn't able to eat anything, which everyone was well aware of.  The class was given a survey of their favorite fruits.  He filled it out, based upon what he used to eat, thinking it was just something they had to do.  The next day, the teacher brought in the top choices with chocolate to dip them into.  This was a class REWARD for good behavior or good grades or something!  My son was not only left out, but he was forced to sit in the hallway outside of the classroom door all by himself, listening to the rest of the class enjoy themselves, which was more of a punishment to him.  There was also nothing offered to him (non-food item) or anything.  Not only was this NOT a reward for him, but it was pure emotional torture for an 8 yr old child.  That is the same school that my daughter is now in.

I have worked really hard to make sure she has safe foods that are substantially similar to what everyone else has.  I bake or buy safe foods when she is going somewhere and others will be eating something like cake, cookies, ice cream, pizza, etc.  Whole Foods has an awesome vegan cupcake and often has a freshly made cheese-free tomato pizza in the refrigerated section (ready to be cooked in the oven) that I can buy in a pinch when I have enough warning.  Rice Dream or soy ice cream is delicious!  Silk soy milks are delicious.  Daiya "cheese" is now available and that helps tremendously.  There are some great options out there.  However, there are times when I don't know that the class is going to have a treat and she'll feel left out just eating a cracker or a pretzel when they're having cookies because there is no attempt by the school to let the parents know there is a food allergy or sensitivity (or whatever it is) in the classroom.  Our former Brownie troop consistently made her feel left out and didn't consider her needs or feelings, to the point she had decided to quit.  Instead, we switched to a WONDERFUL new troop with an absolutely amazing leader.  They are careful to make sure everyone is included and no one is left out.  They make sure that snacks, etc are safe for EVERYONE!  That's the way it should be everywhere!  Unfortunately, it's at a different school, so she doesn't get to socialize with the local girls, which is one main reason why we got involved in Brownies to begin with.

So, it's summertime...why in the world would she have gotten so upset when she has not been at school, or any event where she might have been left out?  Well, when I was away with my son at camp a couple of weeks ago, she and her dad visited her grandmother for a few days.  Her grandmother doesn't remember things like what the kids can and can't have.  It wasn't on purpose - it was an honest mistake.  There's no blame; it just is what it is.  Dad was not keeping track of what her grandmother was feeding her for lunch one day and my daughter ate a sandwich with cheese, even though she knew better than to do so.  She said she didn't have any GI problems after ingesting it, so now she thinks she has outgrown it.  On occasion, she has had times when she has eaten something with dairy and for some reason, she doesn't have a problem, but that is rare.  Whether it's because she has stayed away from it for so long and she can have that one bite without a problem, or whatever.  However, other times she has had something and had an awful reaction where she has been up all night screaming and crying in pain, retching, etc.

This lack of a reaction has happened before on rare occasions and on two such occasions we let her have some more to prove to her that it will happen again, hoping that she will remember for the next time.  I am not doing that again.  I am not going to go that route again because, although it is my job to help her understand, it is also my job to keep her healthy.  Exposing her to something that I know for a fact will make her sick when I know for a fact that she has not "outgrown" her reactions to it, just to try to prove something to her (again) is not the right thing to do in my opinion. 

It didn't help that one of my family members told her during a holiday get-together that she should eat tiny amounts of dairy every day and she'll grow out of it.  That was one of the worst possible things she could have told my daughter (who was only 7 1/2, by the way).  Since she thought this family member was a Dr (because she works in a hospital), my daughter didn't believe me that she was mistaken.  It was leading to behavioral issues and emotional outbursts, too.  I wound up having to take her to an allergist at CHOP, who explained to her that this is not the sort of "allergy" that she will outgrow.  She will have to avoid dairy to stay healthy.  I reminded her that Grandmom (my mother) gets sick from dairy, which she is WELL aware of and has experienced the effects.  Others in my family have a problem with dairy.  I just happen to be the only mutant in the family who doesn't have the same problems or even allergies for that matter. 

Dairy is not an uncommon thing to be allergic or intolerant to.  It is not uncommon for it to cause tummy problems and other various problems.  People don't usually think of it (and/or other foods like wheat) as the possible cause for chronic ear infections, asthma or sinus infections (especially in kids), so they don't know to try to eliminate it from their diets to see if that will help.

Foods can sometimes cause different delayed symptoms instead of the hives or anaphylaxis that most people think of with immediate allergic reactions.  Whether they are "true allergies" or not, they are an immune-system response of some sort.  The body gets confused and reacts inappropriately.  This is something I have learned as a mom, but I never understood it as a kid and didn't fully appreciate all that my mother had gone though with her childhood allergies and related illnesses.  My mother wasn't expected to live through her childhood.

Thankfully, last night ended on a good note after lots of crying and frustration.  I'll continue to do my best to promote awareness at school for her food issues as well as food allergies in general, despite the general lack of understanding or cooperation on the part of her particular school.  That will mean I'll volunteer to be a room mom again, continue to buy safe snacks for the entire class and continue to try to ensure that she has a safe alternative treat available at all times.  She will do her best to try to accept the lack of dairy vs fighting it and mourning it.  We'll see how that goes.  I do have faith that she'll understand one day, but for now she's a little girl and it's to be expected that she'll be conflicted.  I just wish it didn't have such a huge affect on her.

1 comment:

  1. I'm so sorry that her school didn't understand your child's needs. That's just awful that they had to sit in the hallway and listen to the other children eating. How insensitive! I hope that you let them know that it was unacceptable behavior.

    I have two boys, age 6 and 4. My 6 yr old was dx with EE. We are getting ready for another patch test, food trial and scope. My 4 yr old is going for an endoscopy soon to rule out EE. He has multiple food allergies too, along with ulcers, hernia, and thickened esophagus. Altogether, we are avoiding 23 foods....makes it fun cooking!

    I also work at a school and advocate for children with food allergies. It just happens that my son also goes to the same school. I'm going to sign up as room Mom again next year. If you can't beat them, join them and be in charge! LOL.

    Did you hear that Greenville Hospital System in Greenville, SC is hosting the annual APFED conference? It's happening in July. You can check it out at I can't wait to meet people who have been going through some of the same things. At times, it's so isolating.

    I've been reading your posts and they are very helpful. I'm going to visit your blog again. I haven't figured out how to do them in order. With kids, it's hard to concentrate. Thanks again!