Sketch And Our Journey with Food Allergies

This week is Food Allergy Awareness Week.  So I’m dedicating this post to my youngest (for now) son Sketch, who has Autism, Adhd & Food Allergies.

Sketch and our journey with food allergies:

It seems like Sketch was born with eczema.  as an infant he had it all over his face, patches on his arms and legs, and thickly on the top of his feet.  He didn’t wear shoes for the first 2 summers, because the heat of the socks & shoes made his eczema too itchy to bear.

Sketch also had severe reflux, which made laying down flat painful for him, and the angle of the infant car seats made the reflux worse, a guarantee to spit up all over himself & the seat.  He stomach emptying problems that made the reflux worse so his food would stay in his tummy longer than it should, making it easier to spit up even hours after he ate.

Around the age of 10 months, the ear infections started.  They didn’t stop until he had tubes put in place at the age of 2.

Around the age of 11 months, we went to the Pediatric Gastroenterologist. The bloodwork came back showing elevated Ig-E levels, meaning he had allergies.  They couldn’t tell yet if it was to food or environmental things, but they wanted to do a test for EE (Eosinophilic esophagitis), that required to put him under anesthesia.  We decided to put that test off, because he was so sick all the time, we didn’t want to put him “under”.

At the same time the tubes were put in place (age 2), the asthma started. Severe asthma.  He spent much of the next two years on nebulizer treatments and steroids to control his breathing.  This was an extremely scary time! Little did we know, that some of those severe asthma attacks were likely his body going into anaphylactic shock.  I always kept a couple doses of steroids on hand, so we wouldn’t be caught after hours without any help.

Also around this time (between 18mo and 2 yrs) Sketch started self-limiting the foods he’d eat. He started out being the best eater in the house!  He would eat a variety of colors and textures with no problems at all.  At this point (he’s now 6) he will only eat a handful of foods that are brand-specific, and his protein is self-limited to yogurt. No meats, no vegetables (unless you count Lays Potato Chips, or all natural Cheetos (corn)),and one fruit (apples).

We thought once the ear infections were under control with the tubes, that he’d start eating better.  But, the opposite happened.

So we decided to have him tested for food allergies.

Although painful for everyone involved, it did reveal the cuprit.  This first test showed severe Egg allergy.  We were advised to wash all the dishes, pots/pans and counter top/tables with vinegar, to break down the egg protein. At this point Sketch refused to eat eggs (one of his previous favorite foods), so we were surprised that this was causing his problem. However, the rest of us ate eggs and the proteins on the plates were not being properly broken down by regular washing. We needed the vinegar to break it down further.  No eggs.  Do you know how many things have eggs in them?  Who’da thought Mayonnaise and Salad Dressings or French Vanilla Ice Cream could be life threatening!   No more bought baked goods…everything had to be made from scratch to avoid the egg.

We thought we were going to see great progress in Sketch’s health at this point, but we didn’t. He was still breaking out in eczema, having severe asthma attacks, and now hives.  The allergist did not think there were more food allergies so he refused to re-test.  We changed allergists at this point and re-did the food (and environmental) tests.  Sketch (now 3 1/2 years old)  tested positive (severe) to Eggs, mild to Peanuts and mild to Banana.  Do you know how many antihistamines have natural banana flavor in it???  And since Banana is not a major allergen, the FDA does not require it to be posted on a label.  So we had to call all these companies to ask. Yes, his Zyrtec has banana in it. Time to find a new antihistamine!

(Oh yeah, and that dog we had?  We trained her on peanut butter.  Gone is the dog.  Well, actually we had already given her away — long story for another post!  But, quick warning:  If a “service dog” is sold for way less $$ than other service dogs…she’s probably not a service dog at all!”)

After eliminating the Peanut & Banana along with the Egg, the Asthma finally got better.  He maybe needed the nebulizer once or twice through the next year, only when sick with bronchitis.  The next year was even better. We still give him his controller and albuterol treatments when needed (usually when he’s sick) but we have needed no nebulizer treatments or steroids for over a year!!

However… Sketch was still breaking out in full-body eczema and mild hives.  We suspected more food allergies and had him retested this past fall.  The recent results are Severe Egg and Severe Tree Nut allergies.  Peanuts and Banana’s no longer tested positive, but because Peanut allergies are so life-threatening, and tests are not 100% accurate, they said to continue to act as if he’s allergic to Peanuts.  He can now have Banana, although, he won’t eat it so who knows if he’d react???

We are sure that Sketch’s food aversion is related to all these allergies. He’s learned that food hurts. It’s a hard thing to unlearn or understand (some food hurts and some doesn’t), and will probably take many years of teaching and trying.  Meanwhile, his weight either drops or he remains the same as his height continues to tower.  We supplement with Udo’s 3-6-9 oil (hidden in yogurt) because he has zero Omega fatty acids in his diet. He’d deficient in Vitamin D (which we supplement) and many B vitamins, and fiber.  His calorie intake is insufficient.   Now we are trying to find supplemental drink mixes to boost his calories and nutrition since he refuses food. The challenge:  To get him to drink it!!!

How it effects us:

Fear.  Panic.  Will they remember at school?  What if someone doesn’t wash their hands?  What if someone doesn’t recognize one of the many hidden ingredients that contain egg?  How can we go to someone else’s house for a playdate, or a meal?  Will we ever go out to eat again?  Will I have time to bake everything allergen free for Sketch, who won’t even eat the food I make? 

It’s just awful.  And it is very real.  

This week Sketch was playing on the playground at school, picked up some allergen off the equipment (kids at lunch outside before this) and rubbed his eye.  His eyes swelled and hives started all over his face.  He became extremely tired (low blood pressure is a sign of pending anaphylactic shock).  The school caught it in time and gave him benadryl, called us to come get him.   He was just being a kid playing on a playground. It really shouldn’t be another thing we need to worry about, but it is!  

The best description for what it is like to have a child with severe food allergies, is this video from the Food Allergy Initiative:

To complicate it even more…add in the autism.  With the autism comes an inability, or reduced ability to communicate and understand language. Sketch can quote to you the foods he’s allergic to, but that won’t stop him from reaching out a the grocery store to grab a carton of eggs.  He doesn’t  “get it”.  And if he finally tries a new food, like toast, which is safe at home… will he understand that not all bread is safe because many are made with eggs?  Is he then more vulnerable to ingesting allergens?? The black & white-ness of the thinking with autism is a help and a hinderance. 

The Treasure in the tragedy: 

The fear & panic are very, very real, as is the danger.  

But the security handed to me by a loving God is bigger than that. 

He has proven to be watching over us and protecting us over and over again.  

His promise to protect us, His ability to see everything, along with His promise to  use everything for good, is what provides the anecdote to the anxiety.  

He knows where all those hidden allergens are, and He is able to protect my vulnerable child.  

And, when the reactions happen anyway, it isn’t because He wasn’t looking, He wasn’t on a break, snoozing away or  distracted.  He has a plan for that.  In the big picture, He has plans to use that for some very great good.  In that I can rest. (Well, at least until I forget and then I worry again until I remember)

Food Allergy Stats:

* A new study has found that one in 12 U.S. children has a food allergy and for 40% of these children, the allergy is life-threatening. 
* Injectible epinephrine is the only way to reverse anaphylaxis, a serious allergic reaction. 
* People with food allergies must carry epinephrine with them at all times. 
Proud Supporter of KFA profile picture* Oral ingestion is the most common and serious form of exposure to a food allergen. 
* Prior to eating, food labels should be read since ingredients can change at any time. 
* Scraping off or picking allergens off of food will not make it safe.
* Sharing utensils, beverages or food with a food-allergic child is not safe.
* Saliva from other people or pets can contain allergens and may cause an allergic reaction for a food-allergic child.

Provided by an organization that has provided incredible support and information to us, Kids With Food Allergies. http://www.kidswithfoodallergies.org

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Mothers Day in a Spectrummy Kinda Way

What a day!  I was just starting to wake this morning, with the gentle breeze blowing the sheers in the window along with the yellow rays of sunlight, when my dear Princess Buttercup enters the room.  Perfect timing.  She carried a silver tray with a heirloom coffee pot full of that wonderful, favorite dark roast blend, full-caffiene coffee that I love, mixed with perfect dashes of cream and sugar.

On the tray was also a wonderful breakfast with freshly baked muffin, freshly picked berries from the garden, a beautifully folded veggie omlet and home-made hashbrowns.  She’d been up for a while, it seems!  She balanced all of this on her 8 year old hand, and carried it up the stairs to me, dressed in fine lenin,  wild flowers tucked into her french braids and corsage on her wrist!  When did she learn to french braid her own hair?

Next comes Dash, the Princess’ twin brother.  He is wearing a 3 piece suit with boutonnière.  Perfectly groomed, he comes bearing gifts of various sizes.  And behind him comes the youngest little cherub, Sketch (6), also dressed formally with boutonniere.  Sketch has drawn beautiful pictures, fit for an art gallery, of sunshine and roses dancing around his family.  What a portrait!

Mr. Incredible had already fed the 3 little ones, and made sure they were all ready for church this morning.

We walk into the building beaming with the wonders of Mothers Day… the children calm and beautiful.

Lunch afterward was even better.

We went to a very expensive, fancy restaurant… Mr. Incredible had made reservations so there was no waiting.  The children sat in their chairs at the table, engaging in polite conversation as we enjoyed our meals.  A piano was being played in the background… more wonderful coffee…the atmosphere just perfect.

Once home, Mr. Incredible and I snuck in an afternoon nap as the children cleaned the house.  We woke up to sparkling floors and lemon-scent bathrooms. No dust in sight!

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Ok, what really happened was more like this:

We wake up to Dash (for those who don’t know, he has autism & a heavy dose of adhd) yelling in his room because he’s frustrated with his k’nex.  He decides he’s hungry so he finds his most irritatingly fussy voice, pushes our door open and with it demands, “I’m hungry. I want some food to eat!”  Correct pronouns…but really???

This does not wake us into a good mood at all…so we tell him to go this his room and be quiet!  Waiting for a more inviting moment to get up, we listen to him continue to complain and fuss.  Giving up on that idea, I sneak downstairs to take my shower so we will have enough time for church.

Mr. Incredible makes sure to give Dash his medication for adhd so he will be easier to live with calm down and be more likely to get ready for church.

After my shower, I entertain the kids while Mr. Incredible gets cleaned up and ready for church.  This means, I sit next to Sketch (also with autism & adhd) and draw copies of DVD covers, perfectly according to his specifications, and including all the fine print, just like the past 100 times he had me do this!!!  But Sketch is happy…

Princess Buttercup is dressed in jeans and her butterfly shirt she’s worn the last few days, hair un-brushed.  Dash clothed himself in a red t-shirt and baggy jeans…hair mixed with breakfast crumbs!  At this point, Sketch is still dressed in his routine outfit of unraveling blue knit hat, and undies.

Mr. Incredible made an adorable Mothers Day video for me, with the kids all saying, “Happy Mothers Day! I love you, Mommy!”  It was very cute.   Then came some Mothers Day presents and cards.  I do have a very nice cup of coffee (k-cup style, dripped directly into a stained & cracked mug) this morning!

Finishing getting ready for church went fairly smoothly, with only one or two meltdowns.  This morning it is because Dash’s worst fear confronted him as a wasp flew into the kitchen.  Full-blown panick-stricken child of 8 tears through the house to his bedroom where he is “safe”.  We don’t see him again until it is time to load up the car…and of course, there is a bumblebee in the greenhouse right next to the car!

On the way to church, Dash concludes that he will play outside again in the winter, when it is safe because there are no bees.

Church went wonderfully.  The kids stayed in their sunday school class and no one had meltdown, and no one was kicking other children… That was sooo nice.

On the way out of church though, was another story.  Dash’s phobia of bees is worse this year. He screamed the entire way to the car because the sun was out and there may be a bee…ugh!

Besides that screaming fit,  they behaved very well at Sunday School, and we told Sketch if he was good we could go through the drive through at McDonalds (cheers from all the kids, and Sketch was truly beaming in excitement!).

Now, he (Sketch) doesn’t eat ANYTHING there, nor can he (except for a pre-packaged juice box, but he won’t drink that because it isn’t White-Grape juice, and it has to be in his Nalgene sippy cup) because of food allergies. He was incredibly excited though, because he got to listen to the drive-thru attendant talk through the speaker, and watch the entire transaction. HEAVEN!

We didn’t get lunch there, we just got some Vitamin Water… never underestimate the power of a Vitamin Water bribe!

At home I cook lunch.  Dash throws a major fit because Sketch came in the house and left the door open for a few seconds (bees could come in, you know!) so he ends up in his room to calm down.

I had bought some toaster waffles (so I didn’t have to cook) and microwave organic sausages, and pears.  Just heat & serve on Solo paper plates!  The afternoon continued as any Sunday afternoon would… a couple meltdowns, a couple defiant I-don’t-want-to screams, watching Veggie Tales, trying to sneak in a nap, cooking & dishes.

Dinner plans you ask??  Well of course!  Frozen Pizza!  Newmans Own.  Just heat & serve!

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This was a typical Mothers Day for us.  Knowing we wouldn’t go out to eat today, I made things the kids would love  & enjoy (and eat without complaining) with minimal “work”.  They loved it and were very happy to have it, which makes me very happy too.  Meals can be big stressors around here, so by eliminating that for the day is very much a break for us all!  Incorporating things like drive-thru’s to make a child beam in delight is another easy thing to make the day go more smoothly and joyfully.  If I could have contained all the bees in the area today, I would have done that too!  It is because of my kids that I am given the title of Mom.  Giving them a less-stress day is just as meaningful to me as if I were relaxing on Mothers Day.

Typical days are full of stress in a house with kids on the spectrum.  Stress often leads to short tempers, and harsher-than-intended words (like this morning with Dash).

Today at church we sang a wonderful song called More Than Amazing.  In the chorus, it says, “Forgetting all my sins, You remember all your promises”.  What a wonderful thing to be reminded of:  That our God does not make his promises to us (to help, protect, love, provide, etc.) contingent on our “good behavior”.  He remembers all his promises and applies them to our lives even when we are messing up over & over again.  And you can bet your bottom dollar that enjoys giving rest to his children too!

Psalm 127:2
It is useless for you to work so hard from early morning until late at night, anxiously working for food to eat; for God gives rest to his loved ones.

Isaiah 40: 29-31

29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Happy Mothers Day everyone!

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