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.