Wednesday, March 16, 2011

Dealing with food allergies and child behavior


After hearing about what other parents I know are going through with their own kids, I thought I'd post a little about where we are in our food allergy journey.  We've come a long way in the past three years, but it's been slow going and learning all the way.  I shudder to think what we might be going through if a wonderful preschool teacher hadn't pointed us in the direction of food allergies.  And that's where the journey really started.  Our daughter is a fairly normal kid, with "quirks" as one parent put it.  But there were some little red flags in the back of my mommy mind early on, like the fact that she didn't point  until she was practically 2½.  She was so well spoken though and used some sign language that communication wasn't an issue.  I do remember the day though that she was trying to get me to notice something and I didn't see it and she said "Right there!  Right where I'm pointing!"  (Something I'm sure she had heard more than a few times.)  I think I almost let out a Hallelujah! right then and there.  But that was a little thing at the time.  Along with other little things like clumsiness, spacial difficulties and 3rd person perspective.  I could point at something right there on the floor and she would look in any direction other than where I was pointing her.  It was frustrating for both of us.  (And yet she is astonishingly good at 3 dimensional computer marble mazes and find-it books like Where's Waldo.)  But she was so quick to memorize songs and books verbatim, I wasn't worried about her intelligence.  She started preschool 2 days a week when she was three - just a 2 hour class.  Her little sister was born a couple months before school started.  And that, I think is where the downhill spiral started. 

I hate to admit it, but our processed and fast food intake at least tripled after having #2.  I just didn't have the energy to cook from scratch as much anymore.  I started getting reports that R was having trouble sitting still in circle time and trouble paying attention.  "Easily distracted" was something that would become an ongoing issue.  We had great communication and tried so many different things, together with the teacher and they would work for a week or so and then stop.  By the time the end of 4 year preschool rolled around, it was "Did we have a good day today, or just okay..."  Then it was, did we manage to have an okay day even!  Then that wonderful teacher pulled me in after school and gave me a book.  She thought I should read it and thought maybe we might be dealing with food allergies.  I read it.  There was so much there that clicked.  The dark under eye circles, the double red ring around the lips, the red scaly skin behind the ears, the eczema that was continually spreading and eventually covered her arms, legs and chest; the extreme differences in artwork and writing from day to day - some days total scribbles and some days meticulous detail.  I learned early on that chemicals like fabric softener and dryer sheets created nasty rashes and welts, as well as unwashed new clothing.  The sensitive skin I think the kids inherit from me.  She was extremely sensitive to fabric textures and lived in yoga pants that entire year.  The day she wore a scratchy Halloween costume to school was a horrible day for her, she melted down and had to have a time out and I felt responsible because she had complained about the scratchiness before school and I should have known.  Then there was just the unpredictability of her behavior.  So many ups and downs and different things going on.  I was worried about autism spectrum disorders as she sometimes was just in a little fantasy world of her own and it made it hard for others to relate to her.  She took things very seriously and personally and would take offense at an offhand remark not even directed at her; then she would carry a grudge about it for months.  I remember her teacher remarking about her bringing up something that had happened at least three weeks prior.  A little thing... to us.  And sometimes things just came out of her mouth out of the blue that were either totally unrelated to what was going on, or completely socially innapropriate.  So we went to an environmental allergist and had a consultation and then food testing.

You can see the worst of the dark circles under the heavy lidded eyes and the horrible cracked lips and red skin surrounding them.  I had been fighting those lips for four months and thought it was just bad winter chapping.  While she is more prone to chapped lips in winter, a heavy dose of soy will make her lips peel off in two days.  And this was AFTER we started getting it under control.

The allergist asked me about history and brought up things like the fact that she had been very active and "pushy" before she was born.  I called her my little rib stretcher.  (And it scared me when he observed little sis running rampant and found out that she walked at 9 months and said that early mobility and her horrible early sleeping habits were a possible indicator of food sensitivities.  I really do not want to go through this with two kids, although R was a fantastic sleeper - that was before the processed onslaught.)  So we discussed the constant fidgetiness, the distractibility, the dilated eyes, all sorts of things.  The fact that she complained after almost every meal that her tummy hurt.  We ran an intestinal profile that indicated inflammation so we did a candida detox regimen.  That was over a month of a natural anti yeast medicine derived from a mycobacterium.  After we finished that, she didn't complain of tummy trouble for over a year.  After all the testing was done we determined that she was sensitive to a whole bunch of things, but the biggest three were corn, soy and rice.  (Thank God that wheat was not on the list as well!)  Rice during testing made her extremely lethargic but we found out later that the delayed reaction was extreme emotional sensitivity the next day or so.  Food allergies can have up to a 36 hour delay.  The corn made her completely goofy, you could have made her drunk or high and gotten a similar reaction.  She was going boneless, melting in a heap and hiding under chairs, looked practically stoned.  And the soy.  Oh, the soy.  It was like giving her a triple espresso and putting bouncy shoes on her.  You could see in her eyes that she was almost desperate for something to hold her attention as her eyes flew around the room and she bounced off the walls.  We also later found that soy made her extremely irritable and grouchy on the second day.  Then there were the ones that just increased her slapped cheek look and red ears or made her eyes dilated or glassy.  You can imagine with 7 different triggers and the delays in symptoms, that my food journaling had not been helpful up to then because I could never narrow down her behavioral issues to what was actually causing them.  So we did an elimination of all of them for a month and started adding back in to find out what affected her the worst.  We also started her on sublingual allergy drops to help her desensitize.  Then it was time for Kindergarten.

Seven months after the previous picture and you can see that the dark eye circles are quite diminished.  The lips are healed.  They are still a good indicator of allergy overload at this point though.  Even the kindergarten teacher was amazed at the rapidity of the reaction when R got hold of a not okay treat.  Her skin problems are 70% better at this point as well.  In addition to removing the offending foods, I switched to completely natural shampoo and conditioner and usually use just water to wash the kids.  At this age, it's all they need.  Even I react to sodium lauryl sulfate with rashes.  I have removed all the chemicals from the house that I can and try to use natural cleaning methods whenever possible.  Calendula cream was helpful in reducing the eczema as well, prior to allergy testing.

At times I feel bad that her preschool teacher didn't get the benefit of the road on which she got us started.  But it wasn't over.  We were once again blessed with a fabulous and understanding teacher and she worked with us all year.  There were ups and downs.  R is fiercely loyal to a few close friends and can be jealous when they spend time with others.  It was harder for her to share relationships and build new friendships even though she wanted to be friendly with everyone.  We finally had a communication breakthrough with  her and the teacher and I one day after school.  It was a relief for all of us and helpful in knowing how to help her deal with her emotions and relate to her classmates.  Some time during the year I also found out that artificial food colors affect her almost as strongly as corn.  That's a whole 'nother book.  I read enough to confirm what I was already seeing.  I made special foods and treats for R so she wouldn't feel left out.  I found acceptable treats for emergencies like those days there is a birthday I didn't know about and everybody else gets those storebought cupcakes full of soy and corn derivatives and food dyes.  To her credit, my precious daughter really seems to get it.  She went to a birthday party and I didn't provide her a special treat, thinking I would just let her indulge and deal with the aftermath with her drops and buffered vitamin C (which can help alleviate allergy reactions.)  But since it was a drop off party and I hadn't told her specifically she could have the treats, she limited herself to the fruit plate and did not eat any cake or candy.  At FIVE years old.  It hurts my mommy heart sometimes when she makes the observation that she can't have the things all the other kids can have.  And yes, she rails against the unfairness of it, but she also follows the rules.  And I try my best to soften the blow.  I even made candy corn from scratch - corn free of course.  It's been a long hard road, we keep learning and keep finding new things that help.  The kindy teacher recommended reading the sensory book, The Out-Of-Sync Child, and there were a lot of things in there that were relevant.  The fact that she still had not chosen a dominant hand.  That food sensitivities often go hand in hand with sensory kids.  The need for sensory stimulation.  R requires loads of sensory input.  It's one of the reasons she is so distractable, her eyes and ears search out things to stimulate her senses and take her off task.  We got her evaluated and started on occupation therapy to teach her better body awareness and strengthen her core and fine motor muscles.  She is weaker and has less endurance than the typical girl her age.  We also got her an orthotic pressure shirt specifically designed for constant, deep pressure proprioceptive stimulation for sensory kids.  It helps calm and provide better body awareness.  She also needed therapy to help train her eyes to work better together.  We spent the whole summer after kindergarten in OT twice a week.

First grade started well, and I was relieved since I did not know how R would handle full day school.  Fortunately she thrives on routine.  She got a good laid back teacher with a background in special education.  She seems to take R just as she is.  Which is wonderful.  I asked how R had been doing one week after she'd had a known allergen exposure and the teacher just chuckled and said, "Oh, she's just R..."  It has been a good match I think.  The kind of teacher we grew up with.  I've only had one call from school this year about behavior and that was due to a known exposure to soy.  My greatest hope is that R will outgrow these sensitivities as her Nana did.  (Never knew my mom had food allergies until this all came up.)  I added in probiotic supplements on a regular basis to help promote a healthy intestinal flora since she is still prone to candida overgrowth.  Fermented cod liver oil has helped too, though it tastes nasty and she prefers to take it only when sick or feeling a cold coming on.  Both of those on a regular basis have cut down on our illnesses significantly compared to last year.  She has only missed two days of 1st grade as opposed to somewhere between 9 and 14 for kindy.  And it seems to me that she is more even tempered as well.

Of course she cannot ever have school lunch.  Full of corn, soy and artificial colors and flavors: frankenfoods really.  To their credit, they do have a salad bar.  But she couldn't have the dressing - soybean oil.  She can't have 90-95% of processed foods because they contain usually both corn and soy in blatant or hidden forms.  Regular corn syrup affects R in about an hour with dark circles and glassy eyes.  High fructose corn syrup affects her in 20 minutes to an extreme.  You might as well give her speed and a joint.  So much for HFCS being "just like sugar."   We went out to lunch once and she had something quite plain like cottage cheese and a fruit or vegetable I think, plus a diet soda.  By the end of the meal, she was bouncing off the bench and her Grandmother wanted to know what she had eaten because she had black eyes.  We couldn't figure it out until it occurred to me to take a sip of her soda.  It was regular HFCS laiden soda.  Personally, I would like to get the soda out of the house completely, but hubby is addicted to diet soda.  He's really cut back recently though.  One step at a time.  I started reading about the Weston A. Price foundation and their stand on traditional food preparation and it really resonated with me.  When we do well with the traditional and non processed foods, we have the best results.  I've been trying to steer my food prep more toward that ideal, but we still do too much fast food, even if it's stripped down to the bones.  The way an animal is fed seems to make a difference too.  I found that too much chicken, even free range, from a processor that I found out fed mostly corn and soy feed to their chicken, would cause an moderate allergy overload.  I was extremely dissapointed to discover their feeding practices and it restricts my options while R is still so sensitive to those specific triggers.  Similarly, while she was originally sensitive to eggs, I discovered that there was no reaction to farm raised pastured eggs as compared to typical intensively farmed grocery store eggs.  Probably just as related to feed.  But a dozen pastured eggs are more than twice as expensive as regular store eggs.  Not to mention that almost all grassfed and organic food is really expensive.  Really puts a strain on the food budget.  I have never been a good meal planner and I'm sure that would help.  And I will certainly need to learn meal planning if I have any chance of doing GAPS successfully.

I can't remember when I first read about GAPS, Gut And Psychology Syndrome, but it made a lot of sense to me as well.   The premise being that your intestinal health and immune system are very strongly connected.  And when there is an overgrowth of yeast, bad bacteria, fungi, parasites and anything else that stems from gut dysbiosis (an unhealthy, improperly functioning intestinal tract), myriads of dangerous toxins are produced. These toxins are able to alter brain chemistry, cause auto-immune reactions, severely hamper immunity against infections and more.  It's also known as "leaky gut" syndrome.  The trouble has been that it is what seems to me a labor intensive diet and healing program in the beginning.  Of course with all the scratch baking and cooking I have to do for R, I don't suppose much would change other than having to plan more.  But it is a scary prospect to embark on something that is initially so limited in choices.  That's the whole point though, to heal the gut by avoiding all foods that irritate it, and by consuming only foods that will nourish and heal it.  Then, or at the same time, repopulating the gut with beneficial bacteria.  This is done by avoiding all foods that feed opportunistic (bad) bacteria/gut flora.  As well, high quality probiotic supplements and traditionally fermented probiotic foods (sauerkraut, pickles, kefir, etc.) are used to actively repopulate the gut while all this cleansing/starving of the bad bacteria is taking place.

Anyway I've been thinking it may be the spring board we really need to get over the last hurdles of food sensitivity and sensory dysfunction.  To that end, I have signed up for a GAPS based cooking class and hope to garner enough confidence and recipes to take the plunge.  My babies and family are worth it.  I have seen so many testimonials of dramatic autistic recoveries, behavioral improvements, healing of depression and reversals of chronic conditions, syndromes and allergies, it's not even funny.  If you want to learn more, just google GAPS diet and you'll get enough info to bury you for a month.

So there is where we stand right now in our fight against food allergies and the like.  And here again is what makes it all worth doing.



12 comments:

Anonymous said...
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Anonymous said...

Was a great review of all we have learned and put into practice in what seems like a short time. Three years, wow time does fly. I love that you used the photo of the tea party for your wrap up comment. Nana

Holli said...

Wow, what a journey. I am cheering for you, and am really intrigued about where you are today.
My son is having trouble with attention, etc and we're doing food sensitivity testing tomorrow. The GAPS diet seems daunting, but I know how important intestinal health is from my daughter's struggle with constipation.
So, I'll keep reading and cheering for you!

Anonymous said...

I am so encouraged to read this. My 4yearold is allergic to milk, eggs, and wheat. She becomes a monster when she is exposed to these foods. The rest of the family is not willing to remove milk, eggs, or wheat from the house. It's frustrating because we often let her "cheat"'and then pay for it in a big way later.
I will be sharing this with the family to show them your perspective. Blessings to you & your family.

hobby baker said...

@Anon - I hope this has been more helpful than overwhelming to you! I totally understand the paying for it after a "cheat" day. Even she finally agreed that it was not worth her out of control brain for the next two days. I give her credit for "getting it" so well at a young age. And we are so fortunate not to have a wheat intolerance on top of the others. I did notice a very marked difference in her early egg sensitivity - she could totally handle grass fed, farm fresh pastured eggs. (Duck eggs were fine too.) It was the standard store eggs where the chickens are fed purely soy and corn feed (which are most definitely GMO if not organic) that caused her to react. As a ray of hope, I will mention that after three years of diligence on what goes into her, she is starting to have more tolerance and showing signs of growing out of some of the worst offenders. We still have to be careful, but there is a light at the end of the tunnel! (Oh, if you are a baker, you might consider some of the ancient grains like spelt and emmer flour as more digestible than modern wheat, if people are unwilling to give up the gluten products.)

Didi said...

thank you for you post detailing your experience with your daughter. My 4-year-old son has a lot of the same symptoms you experienced and we have for a time not suspected allergies. He has been lactose intolerant since birth and we notice changes in his behavior with things like goldfish crackers, fruit snacks and things with yellow dye but are still having a lot of behavioral problems with him and he has the chapped lips and all around his mouth because he licks it. he is also very sensory and from the time he was very little needs to rub my arm for comfort. He is extremely active and has a hard time sitting still or following directions. I have been really worrying over this and this post really helped to give me some resources I can read further on and to know I am not alone! :) I will start the process of helping him now! Thank you!

hobby baker said...

@Didi - I'm so glad you found this post to be helpful. That's really what I hoped from it. While you are learning and looking for resources, you can google "sensory diet" for lots of ideas to help develop his sensory pathways. I know there is mountains of information out there and it is easy to feel overwhelmed. Just take it a step at a time and know that yes, you are not alone! (And there are probably thousands more parents out there who have the same problems and don't know why!)

Nancy said...

I was doing some random googling and found this post. You pretty much described my daughter. She is 3 years old and allergic to dairy, corn, sesame and shellfish. She has the same combination of physical and behavioral reactions to exposure and it lasts up to 3 days at a time. She is amazingly careful of her diet and even incorporates it into her pretend play. We have learned a whole new way of cooking since we started figuring all of this out. Thanks for your post!

hobby baker said...

@Nancy - I'm so glad to hear of the pretend play mimicking your good food decisions, what a great way to reinforce the health choices! And a light for the future: at 8 now, we are seeing more and more signs of tolerance to some of her food triggers, she can now handle small amounts of corn if it is organic. No conventional corn or highly processed, that still gets her. She can handle a tiny bit of soy oil but not soy protein, but that's okay, we avoid that as simply unhealthy anyway. So now we are working on the sensory integration. Every little bit of progress is heartening. ☺

Thanks for commenting!

Anonymous said...

I'm so thankful to have found this post - seems we are finding new foods to eliminate from my 4YO's diet all the time. I'm curious to know how you got your sublingual allergy drops...our allergist said they are not yet available for food allergies. Sounds like I may need a new allergist!

hobby baker said...

@Anon - We were referred to the special allergist by our preschool teacher. I believe he is actually an environmental immunologist and had worked with Dr. Rapp, the author of "Is This Your Child". He is an environmental immunologist and used a technique called provocative neutralization in order to determine not only the sensitivity but also the exact dosage needed to stop the reaction. It is not quite the same as regular allergy testing and not widely known and accepted. It was a Godsend for us though! I believe there is a website by Dr. Rapp that lists doctors and allergists that do well with the issues of child behavior due to food sensitivities. I'll try to find it again. We also have been trying to bolster the intestinal flora. One thing I have noticed about bloggers dealing with severe food allergies is that after time, more and more allergies appear unless you do something to heal the gut. I am really trying to avoid that road!

hobby baker said...

http://www.drrapp.com/ Look under Provocation-Neutralization and there is a Find a Doctor link. :)

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