No Long-Sleeved Shirts Please!

No Long-Sleeved ShirtsThis is Stevie, here. I am 10 years old and I do not like to wear clothes. Now that summer is turning fast to a chilly autumn, everyone is worried I will be cold.  They want me to wear sweatshirts or coats, or long sleeve shirts.  I do not want to wear long sleeves. I’d rather be cold than put up with having sleeves on my arms.  Sleeves get in my way, and they are a constant irritant. When I do wear them, I push them up  high above my elbows anyway!  A lot of good that does, and then my elbows are not comfortable either.

When I was little, my skin was covered with an itchy painful rash. It was on my forehead, my eyes, my chin and cheeks. My arms, legs and tummy were covered too. And what was the worst was the tops of my feet!  I couldn’t even wear shoes because they would tie or velcro right on top of the itchy spots! It was horrible

I even remember my eyes itching. I would scratch them in my sleep and then they would hurt so I cried. My mom would come and try to stop me from scratching my eyes.  I think that is when they had me tested for food allergies.  I have a lot of those, it turns out.

One of my allergies is latex.  Do you know how many clothes have latex in them? My mom even found out some of the socks I had? Were made with latex! No wonder I didn’t like socks!  The bands of my underwear had latex, and my carpet was backed with latex.  It was no wonder I was so itchy before we removed all those things!

Even with avoiding latex and the food that makes me sick, my skin is still itchy. Sometimes when I scratch it, the skin will rise up and then it itches even more!  I pinch and twist it to “scratch” the itch so I don’t hurt myself with my nails.  Sometimes I can’t stand to be in my own skin at all, let alone wear clothes on top of it.  That is like wearing 2 skins and it makes no way to get to the itchy spots when they bother me.

When I need to scratch a spot, I will do anything to get to it. I don’t care where I am, I will take off my clothes so I can scratch.

Sometimes loose clothes, like t-shirt sleeves, will lightly brush up against my arm and that makes me cringe. It is like the worst kind of tickle—that light one. I like the deep kind but not the lighter, bugs-crawling-on-me kind.

My mom got me a new kind of shirt that’s stretchy and tight fitting.  I liked that because it doesn’t get in my way.  It doesn’t bad-tickle me either. The only problem is that because it’s tight, it is also hard to get off!  And when I need it off, I need it off right away, so I can scratch all the itches.  I am getting better at asking for help at school now, instead of getting mad and ripping my clothes off. I always ask my mom or dad for help, but since they aren’t at school, I never thought to ask there. But now I do. It’s much better to ask for help than to get really upset.

I just don’t see why I can’t wear the same things all year long.  Short-sleeved shirts and shorts in the winter would be fine with me.  Sure, it’s cold, but that’s ok. I will just be super-fast when I’m getting to and from the bus!  It’s warm inside. So if I layer up and dress for the outside, then I get overheated in the inside. There is just no winning.  I would rather be cold than hot though.  Plus, it is kinda fun to hop off the bus after school wearing shorts when it’s snowing out. My mom always says something about that when I do it. It makes me smile because I’m proud of myself for being me and getting away with it.

This post is written by Stevie's mom, giving voice to Stevie as best she could. This may not represents reality, just his mom's perspective of what her son with autism's reality may be. 

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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. www.kidswithfoodallergies.org