Where has the time gone?

It's been three months since I posted here last. Mostly things have been good.

My daughter's Kindergarten teacher has been awesome about her food allergies, and another girl with nut allergies joined our Girl Scout troop, so now I'm not alone.

My son's progressive dairy challenge has been going so well that I think by July I will have to close this blog. It's been a wild ride. He finished up his baked dairy trial the last week of January, and we're on to cooked milk.

The end of this week he'll be doing straight melted cheese in a few foods. I have to admit that I'm still pretty scared. So far he's had milk, butter, and even cheese mixed into things baked, or cooked in a recipe. I will own up to the fact that the first time I sat and watched him like a hawk. It is very surreal to see him eating this stuff.

So, we'll be doing this until his 5th birthday in July, and then move on to regular milk, not-melted cheese, yogurt, ice cream, etc. Scary!!!

Movin on up...

DS has completed the first step of his baked dairy challenge- home edition! We're now moving on to 1/2 cup baked dairy per day. What does this mean?

This means he may have cheddar goldfish. *shudder* He may have storebought items where a dairy ingredient is listed in the middle of the ingredients list. He may have up to three servings per day!

So that would be like, a serving of cheddar goldfish and two slices of break with whey in the middle of the ingredient list. Or two servings of cheddar goldfish and two pieces of bread with whey in the bottom 1/4 of the list.

If he does well at this, in FEBRUARY he can try MACARONI AND CHEESE OR PIZZA. (Or doritoes/cheese curls, lol!)

Ok, so I am excited, can you tell?

Cashews- Passed! (and a mini Halloween vent)

I should have posted this a few weeks ago, but it's been hectic!

We trialed both kids with cashews, and it went perfectly!

It seems we're rapidly running out of allergies, but not fast enough. Halloween is right around the corner and I'm gearing up for more tears and frustration and disappointment, especially from my daughter now that she's old enough to care more about what the other kids are doing.

There is a costume party, with food, at Girl Scouts. Plus probably some party at school, and of course traditional trick or treating. I hope those nice elderly people still live in town. Every year they give out apples, chips, and pretzels. Things the kids can eat!!

This is probably the first of several Halloween vents. Tune in next time!

"That's milk."

My son has a knack for repeating things, and it makes it hard to figure out exactly what he understands.

As far as I can tell he can't tell the difference between soy milk and cow milk, rice cheese and cow cheese, etc. He doesn't ever think to ask before eating anything either. This really frightens me, especially with kindergarten a year away.

The other day we were in a parking lot and he looked down and pointed to a abandoned (litter!!!) coffee cup. He said "That's milk."

My husband happened to be the one holding his hand and he stopped, looked at it for a moment and said "You're right buddy, that cup could have milk in it."

Now...was this a reaction to my constantly telling him not to touch/eat things? Or did he actually recognize that people routinely put milk in coffee? Was he even aware it was a coffee cup? The world may never know, but I feel like it's progress.

It's HIS dream

So, my son passed his baked in dairy challenge. I have not been here to post about it because he was diagnosed the day before the food challenge with Asperger's Syndrome, and it has been keeping me busy and throwing me for a loop.

Anyhow, now that he's passed he can have up to 1/4 cup of BAKED dairy per day. And he should be able to move up to 1/2 cup in October if everything goes well.

One of the foods that Dr. Wood suggested to us was original (not cheese flavor) Goldfish crackers. I cringed, I made a noise of protest, and Dr Wood looked at my son, then back at me and said "It's HIS dream."

Ok, now I'm a little emotional as I write, because I really shrugged it off and I didn't go out and buy the goldfish right away. I hate the little things. They're ground into waiting room carpets and slimed onto playground equipment in most of the developed world. They've turned my world, and my son's world, into a literal minefield every day for the last three years. And now I'm supposed to feed them to him?

I broke down and bought them yesterday. Dr. Wood's admonishment was tugging at my heart. Are some little fish shaped crackers REALLY my son's dream?

As it turns out, yes. They're his dream. I pulled them out of the cupboard 20 minutes ago and measured out exactly the serving he can eat. As I was doing that he saw them and started screaming "I LOVE THOSE CRACKERS!!!". He was jumping up and down. I served him his lunch with the side of fish-shaped crackers I've learned to hate, and he is in the kitchen right now swimming them through his plate and into his mouth as I sit at my desk listening, crying, and blogging about how my son has finally gotten to have one thing he's always wanted, always watched other kids eat, always wondered about. Tiny fish-shaped crackers.

Excuse me while I find my tissues *sniff*

An Update on Preschool Crafts

The craft thing went well. At least health-wise.

Unfortunately I shouldn't have offered to let the class share my kids' supplies. My kids made their crafts first, and then the other kids were allowed to use their food supplies by scooping from the bags with little scoops. This created serious cross contamination issues. The teacher at least did warn me when I cam eto pick up the kids.

I couldn't take that food home, so I tried to get the other parents to take it. None of them wanted any of my "weird" food, which kind of made me laugh because it was in their kids' crafts! The teachers couldn't keep it because they hadn't purchased it, but somehow it was alright to let everyone use it for the craft.

I ended up having to throw it all away, even though it was mostly full boxes of perfectly useful food. I was nauseated and had nightmares about it all that weekend. The guilt was eating at me big time, I do NOT like wasting food.

Preschool Crafts Anxiety

So, my kids are in preschool. They go full day 5 days a week. My daughter's been at this preschool 2 years, and my son one year so far. The teachers are WELL aware of their food allergies. They have "scary" food in the classroom every day, but adding in more to do a craft just seems crazy to me. I know I'm probably over-reacting.

They're doing a Father's Day craft using chocolate chips (nut, milk), butterscotch chips (milk), cheerios (oats, possible nut cross), and M&Ms (nut and milk). The teacher asked if I could supply the kids with their own stuff, and I can. I told her this is completely outside my comfort zone, and she asked what I would do if I were doing this activity, and I told her I wouldn't do it, but if she was confident about it and felt she had a good plan that was up to her.

Meanwhile I'm going to be freaking out at home all day long. Which might be overkill since I know they have milk and dairy stuff and things crossed with nuts and oat-based things every single DAY in the classroom.

BTW- I am sending mini marshmallows, pretzels, raisins, and little teddy bear shaped crackers. If ELF products were sold closer to home I would have picked up their chocolate chips and maybe their "trail mix" if it was safe, I'd have to check.

The High Cost of Food Allergies

I wanted to take a minute to discuss this article that I read today. It touches on things I don't think people really consider when thinking about food allergies. I'm sure people think how hard it must be to cook, to eat out, to be constantly vigilant when around others, but I'm not so sure they know the cost of food allergies.

So, here where we live a gallon fo milk is $3.38 right now. A gallon of soymilk is anywhere from $5-$7, depending on the type and where you buy it. A jar of peanut butter costs around $2, a jar of sunbutter is more like $6. A tub of regular margarine is $2, dairy-free margarine is $4. A small container of ice cream costs $2, whereas a pint of dairy, nut, and coconut-free costs $4-$5. Dairy free sour cream and cream cheese are $4 each for a small container. Dairy free vegan cheese (without casein) is about $5 for 10oz.

In essence you're spending about $16 for all that, and I'm spending $32, exactly double.

Now factor in the 4 Twinject pens and 2 Epipens I have (Total of about $300 after insurance), and the 3 bottles of Benadryl ($8 each), and the allergy testing (Have not got the bill for this yet, but it's typically a couple hundred bucks), and the trip out of state to see said allergist(2 tanks of gas at about $3 a gallon, bringing two meals with us, copay of $35, etc).

And then the cost of sending food to school when there is clearly a lunch program that would cost us less (especially since in preschool it's 2 FREE meals and a free snack daily, and in elementary school we'd qualify for reduced lunch, which would amount of $0.40 per day per child). And the fact that I have to send in snacks. And they're required to be store-bought and pre-packaged. You'd think that'd be easy because you could just grab some fruit snacks and a box of 100 calorie packs and call it a day for $5. Except I can't exactly get away with that, so I end up spending about $20 to your $5 because the more pre-packaged the specialty food is, the more it costs.

Yes, food allergies are expensive! I've learned to make them less expensive by avouding as many specialty items as I can manage to avoid and hunting relentlessly for mainstream items that fit our needs. Grocery planning/shopping/management takes about 3 hours out of my day once a week. Yes, three HOURS. If I got paid minimum wage for that I'd make about $21 before taxes just figuring out our groceries for the week. Sadly, that's not enough to buy much considering the price of speciality items.

Baked-in trial on the horizon

So, Dr. Wood has decided that Aaron might be able to pass a baked-in challenge. I get to call and schedule it Monday. Wish us luck.

What is a baked-in challenge, and why is it useful?

A baked-in challenge is when they feed the allergic person a food with the allergen baked in. First with 1/4 cow milk and 3/4 soy milk in the recipe, and then in increasing amounts until they work up to a whole cow milk recipe.

This test is useful because baking (not cooking, but baking) can denature the milk proteins enough that some allergic people can tolerate them. If the baked-in challenge is passed, most allergic people go on to try cooked-in at home. Things start out slowly, just like the baked in test. According to what I understand about what Dr. Wood said about 20% of allergic people who pass the baked in test can also tolerate cooked in dairy such as pancakes.

If the test is passed baked in milk needs to be added to the diet a specific amount of times per week to build some tolerance (hopefully). If the allergic person does not start showing signs of allergic reaction after a certain (long) period of time, a raw dairy challenge (such as cows milk or cheese) can be tried as well.

So, I'm going to call Monday to schedule it. Dr. Wood wants it done during a "healthy" month, like May or June or July. Months with less allergen stuff going on.

How we became diary free

As promised, here is the story of how we became a food allergy family. It's long and exhausting and at time emotional as well. It's really a chronicle of my son's first year as well. Grab some popcorn and settle in.

My son was born in July, in California. His birth was an easy one. I wanted nothing more than to get out of that hospital, despite it being a very nice one. We were discharged shortly after he was 24 hours old. Honestly, that is what saved him from death. If we'd stayed I would have put him back in the nursery that night, and he would have passed from this earth without a sound.

After we left the hospital we went to Babies R Us to get him some padding for his car seat. He was quite skinny. Then we went to Applebee's for lunch. The waiter asked us how old he was, and when we told him 26 hours, his eyes nearly bugged out of his head.

We came home and my husband picked my daughter up from the neighbor's house. The neighbors all came over to take a good look at him in his bassinet. From that moment when I was alone in the house with him, and he was in his bassinet while I attempted to read a magazine, I started to get a feeling that something wasn't right with him. I'd had a newborn before, and she didn't act like he did. Nothing crazy, just some niggling thing in the back of my mind. Nothing I could really put my finger on.

The day went on, I nursed, he slept and ate, I cuddled him and introduced his big sister, then 18 months old, to him. Many pictures were taken. I was exhausted by bed time.

I laid him in his bassinet right next to my bed. I couldn't get him to really settle down, he kept fussing. I couldn't fall asleep, so I was reading with the light on. At 3am I looked over to him because he seemed to stop fussing, and he was blue. Rigid arms and legs splayed out, completely blue from head to toe. He had made no noise.

I jumped out of bed and grabbed him. I thought he was having a seizure. I started screaming at my husband to wake up and threw the telephone at his head screaming "Call 911!" He did, then threw the phone back at me and grabbed the baby. He started doing CPR as I talked to the person from 911.

Suddenly I heard a tiny cry. He was alive! Moments later the entire fire station and half the police station burst through my front door. They slammed around and stomped around in huge boots. They took my son and checked him out, but couldn't find anything actually wrong with him. They loaded him into the ambulance. I tried to go too, but someone pointed out I was in a nightgown. I threw on a maternity shirt and pants, stuffed my bare feet into a pair of shoes and left in the ambulance, without my purse.

My husband woke my daughter, who had slept through it all and took her next door. The neighbors we had at that time were truly wonderful people. They took her in for the night, and most of the next week. He then raced to the hospital and got there just slightly after we did.

They admitted my son and did every test imaginable on him. Blood, urine, x-ray, EKG, EEG, and everything else under the sun. I remember being too afraid to touch him. I couldn't nurse him, I was so scared. I eventually did start pumping though, after he'd had formula for a few days.

I was exhausted. I had just given birth and I had not slept in more than 3 days at one point. I got in the elevator to get outside and get some sun, and on the way back up I remember thinking to myself that it had been days since I slept, ate, took a shower, or even changed my clothing. I was so tired I was dizzy and had to hold on to the wall of the elevator to keep from passing out. There was a well dressed man in the elevator, and he kept giving me these weird looks. When it stopped on our floor I stumbled out and back to my son's room. The man followed me. It turns out he was a cardiologist, and I was so embarrassed that he was going to be one of our son's doctors after seeing my moment of weakness.

About a week after he was admitted we took him home. He was hooked up to an apnea monitor that would tell us if he stopped breathing. He was to have a respiratory therapist come out every few weeks. We were to see this cardiologist fellow on a regular basis, although nothing was wrong with his heart. We were to see the pediatrician as soon as possible.

That afternoon Ryan's commanding officer and his wife came to our home. He expressed his sympathy, and told us that they weren't going to make Ryan deploy in several months, which he had been scheduled to do. I was so grateful.

My mother came into town a few days later. It was the first time I had been left alone with him and I was terrified. His apnea monitor would go off randomly, frequently. We didn't know why. He was a good baby. He ate like a champ, had normal diapers, and slept well. All testing came back normal. He just couldn't remember to breathe.

After a couple of months fighting with the pediatrician we finally saw a gastroenterologist. She thought it was reflux. She put him on high calorie formula because he was so thin still. She put him on antacid. He saw her from 5 months old until 15 months old. He was still so thin, he was off the charts. He was not getting any better. I fought the insurance company to let us have the apnea monitor until his first birthday, and it kept going off. He started showing signs I recognized as markers of autistic behavior from my days working in group home with autistic people.

Every other month he had pneumonia. He was admitted to the hospital over and over again. He had cystic fibrosis testing, he had lung and gut biopsies. One time he passed out in front of me from dehydration, but he'd been eating and drinking just fine. Everything kept coming back normal, but he was wasting away in front of me, despite being a happy little guy who loved to eat and be cuddled.

Ryan finally did have to leave for a deployment. I was starting to get mad that no one could figure out what was wrong with my son. I wanted him to see a pulmonologist. I fought with the pediatrician about it, and she finally authorized us to take him to an allergist.

That was when we met Dr. Au and our lives turned around. Dr. Au actually listened to me talk about my son's medical history. He didn't interrupt. He didn't act as if I was some crazy mother. He didn't condescend me for being concerned. He actually told me that first day that he thought he knew what was wrong with my baby, but that we'd need to do testing.

We did blood testing and skin prick testing. On the day my son turned 16 months old I got the call. He had Heiner's syndrome. It makes your lungs bleed when you eat dairy. He also was allergic to dairy in the normal way, as well as wheat, bananas, and tree nuts, and he had asthma from the destruction of his lungs. They also found that a good few of his inoculations didn't give him immunity to deadly diseases, and he had to have repeat shots a couple of times before that issue was cleared up. Dr. Au told us to stop the formula immediately and take all these things out of our diet right away.

Within the next month I saw great improvement in my son. He was happier, he was able to eat, he stopped having apnea episodes. He didn't catch pneumonia again for 3 months. His x-rays started coming back with less and less crap in his lungs. He actually gained weight. And, most important, he stopped having autistic-like behavior.

My husband came home from Kuwait, and he had to get into the swing of a gluten, dairy, and nut free diet as well as the plethora of medications my son was currently on. I started noticing more food allergy signs in my daughter as I learned more about it. She was tested too, and came back allergic to pinto beans, peanuts, oats, carrots, pineapple, cinnamon and bay leaves. We removed those from our diets too.

Then I started noticing my son didn't look at me when I was talking to him, he didn't seem to respond, or really talk much at all. These things were in the background for so long with all the other more obvious issues. I took him to the ped, who referred us to an ENT. They said he had enough fluid behind his ears that it was seriously impacting his ability to hear. He got tubes placed that April.

By that summer we were well on our way to having a happy healthy family for the first time in two years. It was heaven. We moved to Pennsylvania. We got a new allergist who told us to trial all of my daughter's food allergies. It turned out she'd outgrown them all but peanuts and oats.

She also told us to trial all of my son's allergies, at home. This was where I got a little upset, since he'd had anaphylaxis after anaphylaxis as an infant (that's what the "apnea" episodes were), and I thought it was unsafe. We did trial wheat and bananas though, and he was able to eat those foods again. The allergist refused to do an in office test for my son's dairy allergy, or even run an x-ray to check on the Heiner's syndrome. So we quit her and decided to take up with Dr. Wood in Johns Hopkins Hospital in Baltimore, MD. We've had quite a good experience with him so far.

Out home is still 100% dairy and nut free. We still eat that way every single day. My son is 3.5 years old now. He still has asthma. He still has deadly food allergies, he's still thin for his age. But he's energetic, he's intelligent, and he's fairly healthy. Last year he didn't need hospitalized even once, and this year so far only once. Antibiotic resistant pneumonia.

The journey is far from over though. We're hoping for an in hospital food challenge in the next couple of years. We're hoping to get some answers as to why he still gets weird illnesses. He'll need immunology testing done, and possibly genetic testing as well.

I've learned so much from all of this about who I can be, how strong I can be, and what I can do to help others. I've joined a group of parents and children who live life in a different way than most people around them. A group of people with disabilities you can't see from just looking at them. And the movement to advocate for them to be able to live their lives in the least restricted, most safe way possible.

I've learned how to cook from scratch, and I can almost quote the allergens in almost any food you ask me about. To the point that people make fun of me about it once in a while.

I don't mind. I'm just glad I have my baby. That he's alive. That he's not hurting all the time. And that I can do something as simple as prepare his food, and it keeps him safe.