And....We pulled the trigger

For the past few months a part of our life has been sitting in limbo.  W's daycare, while an absolutely wonderful place for our older daughter to spend her formative years, was just not equipped to deal with our string of ever growing allergies.  Basically, the rest of our daycare (and the PK - 8th school with which they share a chef) would have to go completely egg-free, peanut-free, wheat-free, dairy-free, and so on, in order to ensure that reactions wouldn't happen and even then it wouldn't guarantee anything.  While accommodations were being made to help control reactions, they just weren't enough and we found ourselves dealing with mystery reactions.

Conversations started a few months ago within our family about whether or not he would be able to stay in daycare.  What would they feed him? How would they ensure that he didn't eat other children's food? or What if another kids ate eggs and then put their mouth on a toy right before W? In the back of my mind, the big daycare question loomed like a ticking time bomb. How many reactions would I be comfortable with him having before I pull him? After much thought, debate, worry, indecisiveness (you get the picture) we decided that W would need to leave his daycare setting and stay home.

Growing Up and Out
I clearly remember going into our first allergist when W was 5 months old and being told that once W was past a year that he would likely have grown out of his egg allergy and be on the path to food normalcy. Well we obviously aren't there, and in fact, the new food allergies (like our most recent tree nut diagnosis) keep coming, bringing the list to now 19 allergies.

So instead of growing up and growing out of our allergies, we are still on the upward climb of this bell curve. In saying that, I do know that there is a downwards slope somewhere on the other side of this mountain.  We will get there and hopefully careen down that hill, laughing all the way (Ho Ho Ho).

A New Reality
The new reality for us at this juncture is that a daycare setting is just not going to be possible for W.  What he needs is an allergy-free environment and for now that can only be found in our home.  This decision was a long time in the making, and certainly wasn't decided without much back and forth, doubt and tears.

I went in to tell the director of the daycare our decision to pull W from the daycare and keep him at home.  I felt like I was quitting something, or even worse, telling them that I didn't trust that they could keep my child safe.  In truth, there are days when I worry that I can't keep him safe myself (back into the bubble!)  They understood and like us, knew that this was likely going to be an eventual outcome.

I am so sad to say goodbye to those that cared for W like he was their own, who looked so scared when he had a reaction but smiled when he took his first steps, and whose faces fell every time I had to alert them to a new allergy but found joy with me when a new food was successful.

Looking to the Future
I made the mistake of clicking on this link and I wish I hadn't.  In my head I see W running down the breezeway of the same school as his older brother and sister, happy and having grown out of some of his allergies. Obviously there are still some children in this world for whom that is not possible.

I try hard not to think about what the future will hold for us and for W's allergies; what God's plan is.  Right now it is easier to take things one day at a time, knowing that we will likely come across new bumps in the road or at other times find easier answers to questions of caring for our sweet boy.

For now he will be cared for by some of the most caring people in his life. People whose desire to keep him healthy is only outweighed by mine. And although its just temporary until we find ourselves on our feet again, there is no better place for a grandchild than in his grandparent's arms.

W with his Grams

Aww Nuts!

With all of W's diet restrictions it is just a matter of time until many of those restrictions will be staple changes to all of our diets. Like most families, there are recipes that end up on rotation and I was excited to start testing substitutions with some of our favorites.  One of those is a copy cat recipe of PF Chang's Lettuce Wraps (from Iowa Girl Eats - its awesome!).  Of course, it has peanuts in hard form and peanut butter in the recipe, so I though I would try it eliminating the peanut pieces completely and substituting Almond Butter to see how much it changed the taste.  It worked wonderfully and no one could even tell. Of course W didn't eat any as we had been discouraged from trying tree nuts and chicken until a later time.

Nighttime Scare
That night I woke up with a start thinking that I had heard a weird sound coming from the monitor.  I went to check on W and he had vomited in his bed. I pulled him out of bed and took him to the bathtub to get him cleaned up.  While he was soaking in the bath, he threw up again and I recognized the weird noise that startled me from sleep.  He was choking, struggling to throw up.

After a few more times of this I got him to hold down some his Zofran and gave him some Benedryl for good measure as he had no fever or other symptoms to rule out an allergic reaction.

Illness or Allergy
The middle of the night episode really shook me to my core.  It wasn't that he threw up.  We were par for the course on that one, but it was the choking that got me and the fact that it was done in the middle of the night when I wasn't there to see it and help him if he couldn't get it out. 

Not knowing whether or not it was the result of illness or allergy, we made an appointment with the pediatrician.  Our regular doctor wasn't in so we saw someone new.  He spent all of 5 minutes with us and when I flippantly commented (mistake #1) that vomiting was a regular thing for W, he immediately said that there was nothing wrong with him and that he would work up a referral to a GI specialist, and out the door he flew.

Not at all comfortable with this prognosis, I immediately called the allergist, who got us in the next day.  We went through the usual of what had he eaten, what had we eaten, etc.  W had been tested for almonds already twice in his life, once when he was 5 months old and once when he was 9 months old.  Both of those tests came back negative. Our allergist, however, still suspected that it was indeed the almond butter and we ran yet another skin test for almonds.

Ding! Ding! Ding! She was right.

Apparently, cooking the almond butter could have gotten the proteins sucked up into our vents, where they sat and got warmed up by our heater, recycling into the air all night long until at last they cause W to react. Really? Sounds crazy and scary, but I am better with that explanation that none at all.

More Substitutions
So now we will eliminate all nuts from our home and I will start looking for yet another substitution. The world of substitute peanut butter and nut butters seems to have come a long way in the past few years and I see advertisements on other allergy blogs for things like WowButter and NoNuts. I have long known about Sunbutter, but since our little man is also allergic to sunflower oil, we must steer clear of that one as well.  Please feel free to share your favorite nut butter substitute and help me find my next experimental ingredient.

Where are all the babies with allergies? REVISITED

A few weeks ago I wrote a post about my frustrations with the lack of information on dealing with food allergies kids that were younger than school age (see it here: Where are all the babies with allergies?). This was at the time that I was facing two difficult realities and was desperate to find people in my same current situation.

Daycare: What can he eat, really?
The first was whether or not we could continue to keep W in a daycare situation. I love our daycare and they have an amazing chef that prepares fresh and healthy meals daily for the children.  Our older kids loved her food and would eat the most amazing things that we would never dream of getting them to eat at home. This menu, however, is not often allergy friendly for W.  They are a peanut free facility, but with his mounting list of allergens, I couldn't expect that they could or would ever be a dairy-free, gluten-free, egg-free facility (not to mention the other 10+ foods.)

As infants, parents can bring in their own food for their children, but as soon as our babies start to walk, they move to toddler classrooms and go onto the school's meal plan.  Needless to say, the day W started walking I secretly felt torn by excitement and fear.  We are taking it a day at a time, and I am still not too sure about what the future holds for us and our daycare needs, but I wanted to find out how others dealt with similar situations. Were there laws that kept daycare facilities from allowing parents to bring in food past a certain age? How long and how hard did parents have to fight before some facilities went peanut- free?  How much in the way of accommodations should I expect?

Baby Talk
The second wake-up call happened when my allergist's nurse told me that W's refusal of certain foods, which typically coincided with an incident of hives or vomiting, was likely his way of communicating that the food "made him feel funny." She said that his mouth could be tingling or even burning from the first bite, and here I am trying to shovel it down his throat. Mom guilt, anyone? When your child is not of an age to say, "Hey mom, this food is making my mouth hurt and I don't want to eat it anymore," how do you know?

The need to connect this time came more as wanting to know that I wasn't the only one out there feeling like I was the cause of some reactions, wanting to share my feelings of guilt and worry of not being able to protect him at all times.  And yes, I wanted to have someone tell me that I was doing my best and to give myself a break every once in a while.

Making a connection
It took me a bit of time, but I finally found a place where I could connect with parents of babies and toddlers with food allergies.  The Kids with Food Allergies Foundation Community exists to educate families and provide them with the tools and resources needed to navigate through parenting a child with food allergies.  They host a huge online community and have a thread on their forum specifically dedicated to parents of food allergy babies, toddlers and preschoolers.  If you or someone you know is searching for this type of community and answers to questions, I urge you to join KFA and visit their Forum, here.

Registration on KFA is free and includes great resources such as recipes, webinars and more.

Ode To My Babies

Top Ten List of How Much I Love You

1. I endured birth for you.  Just getting that one out of the way now, but I will bring it up at least once a year for the rest of your life.
2. I will sooner touch and clean up anything that comes out of your body over that which comes out of my own. Although I could really use a break from the throw-up, okay guys?
3. I let you drink from my cup, eat off my plate, and finish the last of my chocolate bar.  That is saying a lot since according to your father, I am food selfish.
4. I hurt when you hurt, cry when you cry, laugh when you laugh, and so on.
5. You have an innate ability to make me laugh even when you have made me mad.
6. I stopped eating Reese's Peanut Butter Cups, eggs benedict, breakfast tacos and PB&J's because I love your kisses more. Okay, so maybe this only applies to one in reality, but I would have for any of you!
7. There are still times when you can make me feel like one more kid is totally doable (although it's totally not!)
8. You are a wonderful (and sometimes terrifying) mirror of all the best (and sometimes worst) parts of myself. 
9. You have the ability to turn me into a momma bear, a crazy lunatic, a sobbing basket case, and Superwoman (and sometimes all before 8:00am.)
10. And last, but not least of how much I love you.....So much!

J, A, and W, Mommy loves you!

 All photos are courtesy of Feather and Twine Photography - http://featherandtwinephotography.com/

Beware of the Barley in a Pretty Purple Pouch

So after we discovered W's wheat allergy I had several people ask me if we were going to go totally gluten-free.  I wasn't sure at the time, but knew that we would likely lean that direction since the options for gluten free living are so much more abundant these days and it seems like wheat cross contamination can be prevalent with other types of grains.

And then...there was a beautiful purple baby food pouch that called to me.  I know that this sounds ridiculous, and it is. It can be frustrating when you stand in the baby food isle and consistently pick up the same three or four pouches, but still look at every single one because "There have to be more that he could eat," or "Maybe they changed the ingredients." When so little is available to your child, excitement takes over when you find something new that contains none of his current food allergens.

Read the label and there it was, barley.  The main grains that cause issues in Celiac and gluten intolerance are wheat, barley, rye and spelt (as discussed in my earlier post Wheat vs. Gluten).  We have the wheat allergy confirmed, so do we try it and see? How much like wheat is it? He can have oats, so why not barley? Questions, questions, questions! Doubt, guilt, fear!

I am quite often psyching myself out of so much when it comes to W, but fear that all my incessant worries will indeed end him up in a bubble, a la that horrid Jake Gyllenhall movie. So I allowed the newness and purpleness to win over (really people, they spend countless dollars on making the packaging appealing enough that I would eat it!)  W really love it, but I am afraid that it just didn't love him, and back up it came within minutes.

Since all of the other ingredients were things that W had successfully eaten in the past, I am pointing the finger at barley until we can confirm with our allergist. In light of all of this and deciding to embrace my sometimes neurotic intuition, we will be going gluten-free and for now we will beware of the barley!

Allergy Friendly Valentines Day - Thinking Ahead

My sweet boy is just a year old and we are still a few years away from dealing with the sugary sweet onslaught of Valentines.  If anything, however, I am a planner, so I have already started to compile my mental filing cabinet of allergy-friendly Valentine's Day treats. I found a few that are nut, gluten, dairy and egg free.

Surf Sweets Organic Fruity Hearts (nut-free, gluten-free, and vegan)

Premier Chocolates (nut-free, gluten-free, dairy-free and egg-free)

Divvies Candies

(nut-free, gluten-free, dairy-free and egg-free)

 Dum Dums Original Pops 

(nut-free, gluten-free, dairy-free and egg-free)

Threw that last one in there as it was once rumored that I ate a whole bag of them while spending the day with my Great-Uncle.

There are several other allergy-friendly foods that are everyday candies, chocolates, etc available. A great resource for a list of peanut, tree nut and egg-free snacks and candies is the Snack Safely list.  Click here for the latest 2014 version of the list.

NOTE: I decided to start a Pinterest account for the blog so that I could keep all of our allergy friendly recipes, tips and products in one place (feel free to follow me here.)  I have created a board specifically for Allergy-Free Holidays, which is where I have pinned several non-food Valentines ideas and more!

Skin vs. Blood Testing for Allergies

Many people have asked questions about the process of W's allergy testing and the difference between the skin and blood test, so I thought I would share a bit about it.  

Skin Tests

An allergy skin test involves pricking the skin with a trace amount of an allergen and then watching how the skin reacts. The nurse or technician administering the test marks the skin on his back so that they can track which reaction is the result of which prick.  With each of W's skin tests, a positive control (typically a histamine solution) and a negative control (saline usually) have both been administered along with the other pricks.  If I remember correctly, the far right two pricks were the negative (middle) and positive (bottom) in the below picture.  After all of the pricks are made, we wait and watch as hives form (or hopefully don't) on those spots.

I challenge all of you to try to hold a squirmy 3/5/9/ or 11 month old in your lap who has just gotten between 4 and 12 shots in their back, all the while not touching said shots and not letting them touch/itch/rub them either. Oh, and go ahead and do this for 20 minutes. Fun!

W's skin test at age 9 months

After the allotted time has elapsed (shout for joy) the nurse will come in and measure each of the spots using a series of numbers and words that can only be described as a foreign language: wheal, flare, pseudopod and satellites.

Apparently these numbers and words all mean something and correlate into a final ranking.  If your ranking is above a certain number (based on age) then you are considered to have a certain percentage chance of having an allergic reaction (see an example of W's results below.)  These numbers are measures of IgE antibodies released by a persons body in response to that allergen.

W's has had 4 skin tests during the first year of his life, the first at 3 and 1/2 months old.

Blood Testing
Between two different allergist and a few pediatricians, there have been conflicting recommendations on the best course of action to test for allergies. Some say blood tests are inaccurate before a certain age and some said the same for skin tests.  Because W's first reactions occurred before 6 months of age, the consensus was that skin testing was more accurate than blood testing.   Since then, W has had two blood tests  One at 7 months and one at 11 months old. For the most part, blood testing seemed to be ordered to either confirm a skin test allergy or to have a base IgE to compare against. 

Blood testing is just as it sounds, whereas a lab draws vials of blood and sends them off for testing. Unlike the immediate gratification, or lack there of, with skin testing, results take a few days to come back.

Results Example

Because eggs were the first know food allergy for us, it is the one for which W has been tested the most number of times. His first test (skin) at 3 and 1/2 months revealed an IgE level of 5. Children under the age of 2 years are considered to have a 100% change of reaction to eggs at a level 2. The rest of his testing for eggs are as follows:

7 months (blood): IgE level of 14

9 months (skin): IgE level of 30

Eggs will likely be tested again in the coming months to see if his levels continue to rise.

My Little Trooper

I have to say that my sweet boy is such a trooper. Counting only pricks and shots for allergy testing, W has been poked and prodded more than 30 times. While he does cry (I'd be more freaked out if he didn't) he recovers and is back to his sweet and happy self in no time.

Disclaimer: I dropped out of the pre-med program in my sophomore year of college, so please forgive my lack of medical knowledge and any scientific inaccuracies. I am writing according to my understanding and what memory remains after having three children.

Wheat vs. Gluten

I myself have been very confused since W's wheat allergy diagnosis. Does he have to go gluten free?
Is something that is labeled gluten-free guaranteed to be wheat-free by definition? So I got to reseaching.

What is Gluten?

Gluten is a protein that is found in wheat, but is also found in other grains such as barley, rye, and spelt. There seem to be differing opinions as to whether or not oats belong in the gluten category as well.

The difference between Gluten-free and Wheat-free

W's diet will require food items to be wheat-free as his allergy is to wheat, not to gluten. Good news for us is that he can eat foods labeled gluten-free as any gluten-free food will also be wheat-free (ingredient/label reading will likely still prevail). The reverse, however, is not true in that wheat-free may still contain gluten from additional sources listed above.

The recent influx of gluten-free items into the food market have made the lives of those living with Celiac disease rejoice, and I have just jumped onto their bandwagon! It has certainly seemed easier to find substitutions and alternatives to wheat by looking to gluten-free products.

The Controversial Oat

Before I even began to look at gluten-free products for W, I searched and searched for a wheat-free Oatmeal on the regular store shelves to no avail.  They all either listed wheat as an ingredient or included the dreaded bold, "OATS MAY CONTAIN TRACES OF WHEAT" at the bottom.

As I started to search online for "wheat-free oats" I came across lots of information about oat/wheat cross contamination. "Pure Oats," which seem rather hard to find, are those grown, milled and processed exclusive of any other grain types and are thus able to be certified as gluten-free (and thus, wheat-free!)

I found Glutenfreeda Oatmeal at our local Whole Foods Market.  It is available in six different flavors such as Maple Raisin with Flax, Banana Walnut with Flax, and also in a variety pack.

With its fabulously simple ingredient list (gluten-free oats, brown sugar, freeze-dried strawberries, ground flax, salt) that was devoid of any other allergens, we chose the Strawberries and Brown Sugar with Flax Oatmeal.

Not only did W love it, but I sneaked a bite and was impressed.  I am an old fashioned Quaker Apples and Cinnamon girl myself, so I wondered if it would hold up to the standard. I know that oatmeal is not usually something to write home about, but what I liked was that this oatmeal did not skimp on the fruit and it didn't have any of that artificial flavor/sweetener taste that you get with others. The sweet taste came from the strawberries and brown sugar alone. 

Happy boy with his oatmeal!

brown sugar, freeze-dried strawberries, ground flax, salt - See more at: http://www.glutenfreeda.com/our-products/oatmeal/strawberry/#sthash.yuMFwTCZ.dpuf

Ingredients:

Certified gluten-free oats, brown sugar, freeze-dried strawberries, ground flax, salt
- See more at: http://www.glutenfreeda.com/our-products/oatmeal/strawberry/#sthash.yuMFwTCZ.dpuf

Ingredients:

Certified gluten-free oats, brown sugar, freeze-dried strawberries, ground flax, salt
- See more at: http://www.glutenfreeda.com/our-products/oatmeal/strawberry/#sthash.yuMFwTCZ.dpuf

So this was step one into our wheat-free world, and so far, it seems that this might be one allergen with good options for replacements and substitutions.  My next plan of attack will be to make some gluten-free/wheat-free granola.  I'll keep you posted. 

UPDATE:
I must make a confession, that when I get excited about a food with safe ingredient list, that I jump on it.  While on this new journey, I am constantly having to take a few steps back, stop and re-check.  Twice this week I have found foods in my cabinet that could be unsafe.  The first, a baby food pouch of fruit and grain (oats) that also contained trace amounts of wheat. Fortunately, we didn't feed that to him.  The second, unfortunately was the oatmeal.  It is processed in a facility that also uses tree nuts, dairy, eggs and soy.  Luckily for us, there was no reaction with the bit that he ate. 

Like with anything new, we make mistakes and learn. We try our best to keep W safe, and I hope that any lesson learned will never be learned the hard way.

All for one and one for all

This morning at breakfast I watched my older children lick icing off their fingers, now empty of cinnamon rolls, and commented, "Enjoy them now, because in a few months we won't be able to eat those."

My comment was met with blank stares from the kids and a "What? Why?" from the husband.

"Well, W can't have them, " I retorted.  Apparently, I was in the minority in thinking of family solidarity and the only one that had been secretly panicking as the days of separate meals for him vs. us dwindle.

At first it irritated me to think that any member of our immediate family would balk at the thought of ridding our house and diets of all of W's allergens.  Then the more I thought about it, the more I realized how much my children and husband had already given up and I wondered how realistic was it to have my entire family go egg, peanut, dairy, wheat, and everything-else-free for every meal, all the time.

Egg-Free
Because the egg allergy is an ingest/inhale/contact allergy, our house has become virtually egg free.  We no longer enjoy daddy's weekend breakfast tacos or my Mother's Day staple of eggs benedict in bed.  My daughter's favorite meal on earth, fried rice, now has to be ordered without eggs, for which we get very odd looks and even had one restaurant serve all of our meals except hers because according to their chef, "Fried rice takes longer to cook without the eggs." Really?

One weekend we all wanted my husband's famously wonderful waffles for breakfast (which are only famously wonderful because they include whipped egg whites) so he took everything outside and cooked waffles for us on the back porch. 

Peanut-Free
We are not yet sure of the severity of W's peanut allergy, but at the suggestion of our allergist, have rid the house of all peanut products.

While I thought this one would be much more difficult, given my kid's affinity for a PB&J, we transitioned to almond butter quite easily.  In fact, my older two were offered a peanut butter sandwich while staying alone with their grandparents one weekend and they refused because of W's allergy.

I do miss Reese's Peanut Butter cups, and I let out an audible sign as I pass by Trader Joe's Chocolate Covered Peanut Butter Pretzels (found here on amazon so that I can eat them vicariously through you.) But all in all, those are just things that serve to add to my hips, not my nutrition.

Dairy, Wheat, and Everything-Else-Free
Because none of his other allergies seem to be contact or inhaled as of yet, we have not eliminated them from the household diet. I know that there will come a time when we might have to, and that meals made for the entire family will need to use soy milk, rice flour and such, but for now we just take it in baby steps. I bought gluten/wheat-free oatmeal yesterday instead of our run-of-the-mill Quaker brand (I will review it here shortly), so we will see where this journey takes us as a family day by day.

Either way, I know that it will break my heart to see my sweet boy staring hungrily at his big brother and sister as they enjoy some yummy, dairy/egg/wheat -filled treat, so I am hoping that we can find substitutions and alternatives for all of us by the time we get there.