He passed! A long goodbye to allergies

Lincoln was diagnosed with food allergies at roughly 15 months old. Egg, dairy and peanut. At around 3 years, he outgrew the egg, and by 4 years he had outgrown dairy. At 5 years, his tests came back with indicators of him growing out of peanut (sadly, he was also developing some tree nut allergies at the same time).

 

In preparing him for a peanut challenge, we first had to trial peanut cereal. He passed this challenge and proceeded to spend the next 4 months eating a larger amount of peanut cereal each day until he reached 40 pieces. We did this over a course of 4 months. And then it was time for the big day.

 

 

As luck would have it, my job was over the top-crazy-busy, but I was not re-scheduling this day for him. My anxiety was through the roof, and I was subconsciously a mess. I needed to get this appointment behind me. So we headed into a 3+ hour office visit where he started off by eating an entire peanut. The whole darn thing! I had fleeting thoughts that he would go into anaphylaxis reactions, but he didn't. He was just fine. And then it was 3 more peanuts, and then 5 more. By the end, he had eaten 20 peanuts. And he was just fine :)

 

We aren't in the clear yet. His doc wants us to feed him peanut products 2-3 times/week, and continue to carry his epi wherever we go. We also need to try some other tree nuts to ensure he won't react to them. So although we are certainly rejoicing, we know we have work to do before we can be in the clear.

Allergy kid

Ever see the movie Gremlins? You know, the movie where the cute little cuddly critter turns into a monster?! Sometimes living with a child with food allergies makes me think of that movie. We're constantly thinking "don't feed him" (without checking ingredients)!

  

We spend our days reading labels, scouring the internet for a better understanding of terms, and educating people in our circle. I am a member of several facebook groups that offer support, receipes and even suggestions for dining out. We've learned what foods have hidden dairy, I even have screen shots like this on my phone for quick reminders:

I know the FDA rules for labels, and that we have to be cautious because it's not required to label for cross contamination, shared lines or "may contain" but could prove just as deadly to consume such a food. And then there's this....

 We shop around the perimeter of the store more than we ever have in our entire lives. Almost all of what we eat is made from scratch, I can't tell you the last time I prepared a boxed meal. Yes, it's better for all of us. But darn it, sometimes a box is just more convenient. Not to mentuon I'm frequently making him his own modified version of our meal. 

It pains me that I have to be mindful of cross contamination, not just in a restaurant, but also in our own home. Did I put that spoon into our pot of food, or his pot of food? I've had to throw out an entire pan of food because of this error. We joke when I find reciepes titled "One pan...." because inevitably it's always at least 2 if not more.

We've debated buying this shirt for Lincoln to take some stress out of gatherings.

Thankfully our friends are amazing at asking permission, and Lincoln is pretty darn good at asking an adult if he can have something, rather than just grabbing. Just last weekend a dear friend asked if he could give Lincoln "cream" soda, fearing it may have milk. I love that our friends take things as serious as they should be. But if an adult places a food near him, he is going to assume it's ok to eat, and it has given us some scares of accidental ingestion.

The girls are on just as much of a high alert. The other morning Regan called to  me "I think Lincoln has hives".....not how I wanted to start my morning. They check labels, they always say "go ask mom" but more importantly, they keep an eye on him to be sure he's only eating something we approve.

It's getting a little easier but will never be easy. Fingers crossed that he grows out of these allergies, but in the mean time, we won't be letting our guard down.

allergy update

Oh this little boy of ours is full of spunk, life and love. Quick side note, he's in a phase where I tell him "I love you" and he gets the sweetest pouty face, leans in and says "no,...I love you too!" He gets upset if I repeat "I love you" and he goes back to his original statement. This banter continues until I finally let him win; he insists on being the last to say "I love you".

Oh, someday he'll make such a lovely husband :)

We are now 1 year into food allergy living, so I thought it was time to re-cap a bit of where life sits for us. He remains allergic to dairy, egg, peanut and (because of a hives reaction to pine nuts), we avoid all tree nuts as well. Although he is anaphylactic allergic to all of the above, we have been beyond thankful that we have never had to use his Epi-pen. knock on wood! There was one instance where I debated it, and was ready, but his single symptom improved with Benadryl. Talk about relief. The rule is epi him with 2 of the 3 symptoms or if in doubt (hives, vomiting or trouble breathing). Using the Epi unnecessarily will not hurt him; but not using it could.

We read labels like you would not believe. A typical grocery run used to take us double the amount of time because we had to read every single item. The reading part hasn't changed, but in general, we now eat much more fruit, veggies and meat (everyone but me) so there aren't nearly as many labels to read! Lincoln's favorite foods are fruit so he doesn't eat much in terms of processed foods. It's healthy, but not terribly convinent when there is a smashed banana at the bottom of a diaper bag! We buy him special dairy free cheese, hemp milk and foods like oreos that surprise all of us to be dairy free. I found dairy free dilly bar lookalikes too. 

We might have the BEST friends supporting us and him as we navigate these waters. It's no secret that we entertain a lot, especially in the summer, and we certainly don't expect anyone to cater to his needs (it's hard enough for us!). I was in tears the first time a friend text me a picture of a package with a "can Lincoln eat this?" question. How sweet, I kept thinking, that someone else cares enough to want him to feel included. Fast forward a couple of weeks and another friend sends me a picture with a question "if I use this, can Lincoln eat it?". And then there's my dear friend who, while out grocery shopping, noticed VeganEgg and immediately text me to ask if I've ever heard of it.

Talk about some superb friends.

Does it suck to have a young child with food allergies? Yep. And it's scary as hell. His Epi-pens come with us everywhere. We've purchased a special pouch to help keep them room temperature in the extreme heat while we venture out and about this summer. It's a hassle to eat out, it takes a lot of research, and most of the time, we forego eating out because it's simply too much work. Ryan and I went on a date recently and I jumped at the opportunity to eat at a place where Lincoln can't go. Still makes me sad. The girls are mostly annoyed. But they understand it's for his own safety and it makes them just as sad knowing he is missing out on things they love to eat.  

Do we dwell on it? Nope. Because there's no point. We are amazed at how well he knows his own allergies at just 2.5 years. Everyday I pick him up, he races over to the 'snack at the door' and asks if he can have one. His common statement is "milk in it?, cheese in it?" (they are a nut free environment). Today when I picked him up from school (daycare), there was a 'snack at the door' of saltine crackers. This time, he grabbed a package and instead of asking me, he stood staring at the words as though he was reading it, checking for safety. That made me laugh. He understands his allergies and that makes me happy. I suspect he has a 6th sense about items because sometimes, he'll take 1 bite and complain it's got milk in it. I'll be honest, knowing what I do about FDA labeling and cross contamination (it's not required to label for shared lines), I trust his instincts and we never force him to eat anything.

We head back to visit his allergist this fall when he will get re-tested and (cross your fingers) the numbers go down and we can start food challenges!

In the meantime, we will love him, teach him and work hard at never needing to use those Epi-pens!  

Cookie

Lincoln learned a new word recently: cookie. The way he holds onto the ooooo sound is precious!  I'm really not even sure where he picked it up, because frankly we don't eat a lot of cookies around here. Especially now with his egg and dairy (and peanut) allergies. 

Regan started to feel really sorry for him and his pleas for a "cookie", and asked to bake him some safe cookies. Easier said than done. No butter and no eggs. Oh, and no chocolate chips (milk)! Yikes. I had some research ahead of me. 

Thankfully there is Pinterest and I came across a receipe without a million foreign ingredients. Just needed to find vegan chocolate chips-aka: dark chocolate chips made in a peanut free facility (those suckers are pricey!). We made our own egg replacement and used his vegan butter. Ryan was a bit skeptical about the end result. 

But you know what?!, they were good and we all liked them! And Lincoln finally got his cookie. Thanks for being such a great big sister, Regan! 

20 months

As the days go by, our little man is getting older. With the 28th come and gone, he's now 20 months old. Twenty?! We are well on our way to a 2 year old. And we are still so very much in love with him and all of the joy he brings to our family.  

He is interacting and just so much fun these days! Sidney was pulling him around on the hardwood floors using a big blanket as her sled the other day. The giggles from his mouth were heard throughout the house. Ryan finally shouted from upstairs with a "what is she doing to make him laugh so hard". Lincoln could hardly breath he was laughing so hard! He adores his sisters, they really do make his world go round. One of his biggest joys in life is having them take him for a ride in the pink Cadillac. It won't be long and he'll be the one giving rides, and crashing into mail boxes (Sidney was still the driver, despite the location of seats below....)!

When we leave, make a transition to a new room/activity, have to run an errand, I've learned that life is so much more smooth if he is allowed to say "bye" to the slide, the shopping cart or the car. Then he knows we are moving on quickly. It really works! Tonight it was his beloved toothbrush (loves to brush those choppers), and eventually I told him to say 'good bye' and he gave me the tooth brush and in his southern most accent says "bayyee'. My other go-to trick is to offer the neighbor's dog as a reward.....yes, it's a bribe, but it's innocent and it works! "hey Lincoln, stop playing in the puddles and let's go say hi to Sophie". Instantly stops and starts running towards the fence! When he fusses about adding shoes to his wardrobe before leaving the house: "hey Lincoln, should we put on our shoes and go say hi to Sophie?". Works like a charm!
(I can't find a photo of him with Sophie, so I'll instead you get him saying goodbye to my car and it's blown tire).

With a recent trip to the pediatric allergist, we are learning the ropes of a whole new menu. We walked out of that office, armed with answers and most importantly an action plan, but also with extremely heavy hearts. Yes, we realize in the grand scheme of life, he's healthy and that's all that is important. But this stuff is scary; really really scary. We've been lucky and have had to completely change our eating habits. In the reality of our family, it is a huge shift. I'm scouring the internet for food ideas, non-dairy alternatives, and safe restaurants. The peanut allergy is a breeze in comparison to egg and dairy; unfortunately, the reactions are both the same: life-threatening. And so, we will follow with the allergist for as long as we need to, and avoid all threatening foods. 

As for play-time, he has recently fallen in love with the play kitchen. In. Love! One session, he played for nearly an hour. He babbles and chats like I understand all that he is saying as he goes about cooking me meals and pushing buttons. He really does love the kitchen as much as the girls did at this age. He also has a love for cars, coloring (with a big sis nearby) and helping me to clean. We swear that the play-swiffer is by far, his favorite toy. It almost got tossed in the truck on our most recent Wisconsin Dells trip; he loves it that much!

We are soaking in the summer sun, his curly blonde locks and stinky sweaty feet as we enjoy all that 20 months has to offer! We love you Lincoln! 

If I had to guess, I would say he weighs close to 30 lbs, and he has grown in height so much that I'll have to measure him against his ruler. He's in size 4 diapers and 18-24 month clothes. He's becoming interested in the toilet and I'm getting nervous about training him but I know the time is coming soon :) He loves his family, his books and toys and being outside.
Happy 20  months buddy!

Allergies

Over the course of the last year, we have been questioning allergies for Lincoln. There were so many red flags that we sort of lost count. It all started with his persistent spitting up. We dismissed it mostly because the girls were also labeled "spitters" at this age. But as the months went on, there were patterns of increase spitting after I had eaten certain foods. And then there was the skin rashes after touching utensils with certain foods on them, the eczema, and more red flags. Late last fall, one particular doctor raised the same question of allergies, mentioning that Lincoln's medical history of ear infections and persistent colds (which just gave him more ear infections) could be signs of allergies. He gave us a "try this antibiotic and if it doesn't work, we'll test him for allergies". That particular antibiotic cleared up his 4 week cold and we thought we dodged a bullet. Until last week. 

There was a tipping point and I felt myself frantically calling the pediatricians office for an allergy consult as his frozen breast milk supply was fading fast. We got in fairly quickly and the pediatrician felt, based on medical history, that he needed to at least do the blood work. He suggested since we were concerned about a milk allergy, we might as well test the other most common food allergies. Within 2 days, I had a message back from the doctor that Lincoln has not one, but three of the most common food allergies: cow's milk, peanut and egg. 

I sort of felt my heart sink a little. In the grand scheme of life, this is not a big deal. And I know that. But like one friend said, any sort of detour on this road of life is hard to swallow. She felt my pain and sensed my worry. How was I going to make meals now? What about other dairy products? How do I work an Epi Pen? Do they make Benadryl for kids his age? Will I remember not to dip the knife from the peanut butter into the jelly? Will those that care for him take the same precautions? I just wanted to cry. My head still spins because we don't have answers to so many questions. 

The doctor told me the testing that was done puts an allergy on a scale, and Lincoln's came back severe for both milk and peanut, and slightly less severe for egg. Considering he's eaten breads and other foods baked with egg, we are probably okay to continue. Apparently baking items changes the chemical make up. But for right now, we are eliminating eggs (as in scrambled or other), cow's milk (including most products made with it) and not introducing peanuts. In fact, those peanut products are staying far away from him. 

We are blessed that the girls are old enough to understand. That Regan has several friends with allergies and she really gets it. She's already busy reading labels and ensuring that Lincoln remains safe. It's stressful that he is not old enough. That he will see a cookie or sandwich on a plate and grab for it without understanding he can't have it. And the results could be devastating. 

I have reached out for help from folks with experience on this topic. And I intend to keep doing so until I learn all that I can. I'm thankful for working in healthcare, where experts are just down the hall: doctors, nurses and dietitians. For now, we have introduced coconut milk as his alternative. Ryan's thought is that we will have to take out a second mortgage for the cost of that stuff; holy moly :) And I know, that he's otherwise healthy. And we thank our lucky stars for this. In my field of work, I see the worst of the worst and I understand that in the big picture, this is really no big deal. That at the end of the day, we are able to help him with this and he will be just fine.