It's summer time and it feels like most often I'm stuck in the house. Lots of families are having picnics, BBQs, family reunions, birthday parties, etc... Friends and extended family members of mine are doing the same. Each time we're invited, the answer always has to be the same. No.
Sometimes I think they understand, other times I know they don't. At times I try to explain what they would need to do to accommodate us, but most often it's just too hard or impossible. Containing food to one place while outdoors and then trying to monitor young children with plates and drinks everywhere... Just the thought stresses me out.
I used to think that summer would be the easiest season when it comes to food allergies, but I was wrong. Food is everywhere! In the winter it's too cold for people to be outside with food. Playing in the snow, for us, was the best activity ever!
We're coming up on August now, and I must admit July felt no different than any other month out of the year. The kids have played in the backyard. We've gone to the same safe places we did all winter. I was getting tired of the same old thing. And so I've come up with some plans to get us OUT OF THE HOUSE!!!
One of the biggest challenges we've faced as a family, since our boys were diagnosed with food allergies is changing our mind set about food. Almost every holiday and occasion had a food association with it. Most traditions we had or wanted to start were food oriented. I remember fantasizing about going apple picking with my boys or strawberry, raspberry, and blueberry picking. Adam is allergic to all four. Tears came with the realization that they would never share that experience. What I'd give to host a pie party or any party for that matter and ask people to bring their favorite dish. Even simple occasions like Conference Sunday shout out Monkey Bread!
Having dealt with this life for over a year now, I'm getting better about all of that stuff. I host Thanksgiving Dinner for my husband's family and Easter Dinner for my family. Everything we eat is allergy friendly for everyone and tastes very yummy. BUT on every other occasion we've changed things up! AND we're starting to change things up in our regular daily, weekly, and monthly lives.
I was trying to think of something to take the place of food traditions and holiday celebrations. Gifts and toys work well, BUT it wasn't enough, and honestly it's quite expensive. So, we've decided to embark on a journey together as a family. Instead of centering life around food we're changing our focus to physical activity. It's the one thing that I can think of that's not food oriented, just because it doesn't make sense to be eating at the same time. There may be food after or before, but we can avoid that.
This week I applied for a family scholarship at our local YMCA. After speaking with many staff at the facility and to our doctor, we're eager to receive word that our application has been accepted. There is a referral coming from our doctor too. He knows more than anyone that it's impossible for us to participate in so many other events. I can't put the kids in the YMCA day care, but we can participate in physical activities they offer there of all kinds, all year round. I've signed the boys up for swimming lessons and can't wait to be able to participate in more events.
We're planning a nature hike at our local Wild Life Refuge too. This fall we hope to enroll Owen in either Karate or Soccer. For Christmas we're asking for sleds for everyone in the family. Of course the hot cocoa afterwards will be non existent, but we don't HAVE to have it.
I'm really excited about this new challenge. I love exercise and have always been an outdoor person, being raised on the water, etc... But to try these things with toddlers is different. And to get the courage up to actually try new things...
It will be an adventure, but an adventure we're excited to have. We'll get OUT OF THE HOUSE and have lots of fun! And, hopefully it will instill a love for activity in our kids and keep them healthy longer!
Sunday, July 25, 2010
Saturday, July 10, 2010
Vacation Part III: The Food
Our successful vacation became a reality mostly because of the food prep before hand. I've mentioned previously we stayed at a beach house where I had a real kitchen. None of this would have worked otherwise.
Meal 1: Honey Chicken Skewers with Pasta Salad & Fruit
The recipes for this meal are located in my Easter Post.
This meal is divine! Again, I haven't found a single person we've served it to who didn't like it. Click HERE for the recipe.
Now, we did make some changes to accommodate Adam that I should mention. Honestly I haven't tried the real version. We omitted the onions, jalapenos, and chili powder. Instead of using kidney beans we used black beans. Lastly, we chose to use ground chicken instead of hamburger or ground turkey. We have used ground turkey before and it's very yummy too.
Meal 6: Hot dogs, Salt Potatoes, & Corn on the Cob
Hot dogs are a staple at our home. When Adam was younger, it was all he would eat. Finding allergy friendly hot dogs for him was really difficult, but we have succeeded. Wegmans carries Applegate Farms Organic Turkey Hot dogs. Besides being delicious, they are super healthy. I don't ever have to wonder what I'm eating either, which is a plus. You may laugh, but we actually order these in bulk. We don't have much food storage at all, but at any given time we have up to 12 packages of these hot dogs. Obviously we brought them with us on vacation.
Salt Potatoes are a central and upstate New York thing, but I've heard they're spreading. If you can't purchase salt potatoes, just buy 5 lbs of tiny potatoes and cook them in boiling water with at least 1 cup of salt. Serve with melted butter. They are really yummy!
Well... That's it for dinners. Next comes desserts!
Dessert 1: Oreo Fest
Both of my children can eat Oreos now, perhaps not all kinds, but the basics. We purchased Golden Oreos, Traditional Oreos, Mint Oreos, and Chocolate Filled Oreos. Adam lives off of these cookies! Quite the yummy treat!
Dessert 2: Mexican S'mores
Enjoy Life has dairy free, soy free, nut free, and I think gluten free chocolate bars now. They are to die for! Our local Wegmans carries them. Both of my boys can eat Honey Maid Original Graham Crackers and marshmallows. So... During vacation they were introduced to s'mores.
Not only that, but they were introduced to Mexican S'mores, my personal favorite. Instead of milk chocolate, use dark chocolate. Instead of Original Graham Crackers use Cinnamon Graham Crackers. The marshmallow is still the same. So YUMMY!
Dessert 3: Ice Cream Bar
Adam doesn't like foods that are extremely cold, but Owen does. He still remembers the day when he had real ice cream. For him we now buy Good Karma Organic Rice Divine Chocolate Peanut Butter Fudge Creamy Non-Dairy Frozen Dessert. He LOVES it! For Baby A we buy dairy free vanilla ice cream.
Dessert 4: Popcorn Party
I LOVE popcorn. On average I think I eat it at least 4 times a week. The boys love popcorn too, especially Adam. Since corn is a safe food we've thrived on popcorn recipes. You can find them on my other blog Basic Fives. I have many other popcorn recipes too that will probably show up in future posts. Obviously I make alterations for the kids' allergies, but all in all it's a huge hit!
Besides meals we had lots of snack foods around but I won't go into to much detail about that. All I can say is that I gained at least 5 lbs on this trip eating so much yummy food! Hope you enjoy it too!
So...
Here's what we ate. There are links to some recipes. Others are listed below. Enjoy!
Meal 1: Honey Chicken Skewers with Pasta Salad & FruitMeal 2: Italian Chicken Burgers with Two Potato Salad & Fruit
Italian Chicken Burgers are my own invention, but anyone will tell you they prefer them over real hamburgers. At least that's been my experience with people who actually taste them.
Start off with a 1 lb. uncooked ground chicken. Add about 1 tsp. of Oregano, Basil, Italian Seasonings, and Garlic Powder. Mix well and shape into hamburgers. Grill.
They're VERY easy to make, and are delicious. You can add as many toppings as you'd like. But they taste just fine with ketchup too.
The recipe Two Potato Salad comes from the book, The Kid Friendly Food Allergy Cookbook. Can I just say that I LOVE this book!
Here's the recipe:
3 purple potatoes, cooked, cooled, and cubed
3 Yukon Gold potatoes, cooked, cooled, and cubed
1/2 red bell pepper, thinly sliced
1/2 red onion, thinly sliced (we omitted this ingredient)
1/3 cup rice or red wine vinegar
1/4 cup olive or canola oil
1/3 cup fresh chopped parsley
Salt & Pepper to taste
1/4 cup grated Parmesan cheese (optional) (we omitted this ingredient)
2 tablespoons chopped fresh or dried basil
2 tablespoons chopped olives (optional)
1. Combine all ingredients in a bowl. Cover and refrigerate for at least 30 minutes. If using purchased dressing, omit vinegar and oil.
This recipe is super yummy and tastes SO fresh. One thing to be careful of-overcooking the potatoes. They turn to mush if you cook them too long.
Meal 3: Taco Bar
The taco is a fun meal for everyone. It's very flexible and versatile and will work for picky eaters.
The biggest allergy friendly adjustment I have to make here is making sure the meat is seasoned. Not being able to use packets from the store, I found my own recipe. Actually someone sent it to me.
Homemade Taco Seasoning Packet Replacement
Makes 1 packet
1 1/2 teaspoons paprika
1 teaspoon chili powder (we had to omit because it has cumin in it)
1/2 teaspoon oregano
1/2 teaspoon salt or garlic salt
1. Stir seasoning and 3/4 cup water into 1 lb. browned and drained hamburger (we used ground chicken); simmer 10 minutes, stirring occasionally.
*Because we can't use chili powder I usually add about 1/8 teaspoon red pepper flakes.
Besides meat at the taco bar I also have:
Black Beans
Rice
Corn Tortillas
Tortilla Chips
Tomatoes
Green & Red Peppers
Olives
Avocados
Salsa
And for those not allergic to dairy products and other ingredients:
Cheese
Sour Cream
Lettuce
With so many mixing options: Tacos, Burritos, Taco Salad, Beans & Rice, etc... no one goes hungry. It's always a winner and perfect for lots of people.
Meal 4: Spaghetti with Meat Sauce
I would like to say I make my own sauce, and I have before, but for vacation purposes, this meal was just a jar of Prego Traditional Spaghetti Sauce. The sauce contains no dairy, no soy, and is all natural. It's great! The pasta was organic wheat. This could easily be substituted with rice pasta. Finally the meat was just ground chicken, although I prefer ground turkey. This is Adam's favorite meal!
Meal 5: Chili Rice
Meal 5: Chili Rice
This meal is divine! Again, I haven't found a single person we've served it to who didn't like it. Click HERE for the recipe.Now, we did make some changes to accommodate Adam that I should mention. Honestly I haven't tried the real version. We omitted the onions, jalapenos, and chili powder. Instead of using kidney beans we used black beans. Lastly, we chose to use ground chicken instead of hamburger or ground turkey. We have used ground turkey before and it's very yummy too.
Meal 6: Hot dogs, Salt Potatoes, & Corn on the Cob
Hot dogs are a staple at our home. When Adam was younger, it was all he would eat. Finding allergy friendly hot dogs for him was really difficult, but we have succeeded. Wegmans carries Applegate Farms Organic Turkey Hot dogs. Besides being delicious, they are super healthy. I don't ever have to wonder what I'm eating either, which is a plus. You may laugh, but we actually order these in bulk. We don't have much food storage at all, but at any given time we have up to 12 packages of these hot dogs. Obviously we brought them with us on vacation.
Salt Potatoes are a central and upstate New York thing, but I've heard they're spreading. If you can't purchase salt potatoes, just buy 5 lbs of tiny potatoes and cook them in boiling water with at least 1 cup of salt. Serve with melted butter. They are really yummy!
Well... That's it for dinners. Next comes desserts!
Dessert 1: Oreo Fest
Both of my children can eat Oreos now, perhaps not all kinds, but the basics. We purchased Golden Oreos, Traditional Oreos, Mint Oreos, and Chocolate Filled Oreos. Adam lives off of these cookies! Quite the yummy treat!
Dessert 2: Mexican S'mores
Enjoy Life has dairy free, soy free, nut free, and I think gluten free chocolate bars now. They are to die for! Our local Wegmans carries them. Both of my boys can eat Honey Maid Original Graham Crackers and marshmallows. So... During vacation they were introduced to s'mores.
Not only that, but they were introduced to Mexican S'mores, my personal favorite. Instead of milk chocolate, use dark chocolate. Instead of Original Graham Crackers use Cinnamon Graham Crackers. The marshmallow is still the same. So YUMMY!
Dessert 3: Ice Cream Bar
Adam doesn't like foods that are extremely cold, but Owen does. He still remembers the day when he had real ice cream. For him we now buy Good Karma Organic Rice Divine Chocolate Peanut Butter Fudge Creamy Non-Dairy Frozen Dessert. He LOVES it! For Baby A we buy dairy free vanilla ice cream.
Dessert 4: Popcorn Party
I LOVE popcorn. On average I think I eat it at least 4 times a week. The boys love popcorn too, especially Adam. Since corn is a safe food we've thrived on popcorn recipes. You can find them on my other blog Basic Fives. I have many other popcorn recipes too that will probably show up in future posts. Obviously I make alterations for the kids' allergies, but all in all it's a huge hit!
Besides meals we had lots of snack foods around but I won't go into to much detail about that. All I can say is that I gained at least 5 lbs on this trip eating so much yummy food! Hope you enjoy it too!
Friday, July 9, 2010
Vacation Part II: Activities
We left on a Friday. Our first stop-Sesame Place in Langhorne, PA. Our final destination was Bethany Beach, DE. Sesame Place was just about half way. We weren't sure how the trip would go with a 3 1/2 year old, almost 2 year old, and almost 1 year old. The only place we stopped on the way to Sesame Place was a rest stop. It was one of the simple ones, with only bathrooms, a picnic area, and a place to run around. Unfortunately these rarely exist anymore. It was a lucky find!
Sesame Place was fantastic! I had called ahead inquiring about accommodating Adam and they assured me he'd be fine. We were given permission to bring our own food into the park too. (They check all your bags before you enter.)
No food is permitted on any of the rides. I only remember one outdoor area where food is located. Nearby are deck chairs where people were eating various snacks, including ice cream. We could avoid that area all together. All other food was located in restaurants around the park, but nothing outdoors. It was wonderful not having to worry! I HIGHLY recommend Sesame Place to anyone with young children!
We stayed in a Suite 5 miles from Sesame Place that night. After calling almost 10 suite/hotels, I finally found one with a full kitchen, including a cook top stove. This was crucial for us. I had packed a cooler with our meals for that night and next morning. Obviously free breakfasts are out. The kids loved the suite and thought it was really fun to eat their meals there. We know now that whenever we stay in a hotel we always need to book a suite. There's just no other way to do it.
No food is permitted on any of the rides. I only remember one outdoor area where food is located. Nearby are deck chairs where people were eating various snacks, including ice cream. We could avoid that area all together. All other food was located in restaurants around the park, but nothing outdoors. It was wonderful not having to worry! I HIGHLY recommend Sesame Place to anyone with young children!
On Saturday morning we headed to Camden, New Jersey to the Adventure Aquarium. This too seemed to be an allergy friendly place. No food or drink was permitted, except for in designated cafeteria and restaurant areas. What a HUGE relief! We had a lot of fun. Adam even touched star fish!
Saturday afternoon we arrived in Bethany Beach, DE, our vacation spot for the next week. We were staying in a beach house with my husband's father and his significant other. They were absolutely wonderful about keeping Adam safe. I had prepared a menu and grocery list. Joanne and I went grocery shopping together. Each day I'd prepare the meals, using recipes from home. (I'll be sure to share those soon!) Before the trip I was really stressing out about the food, but I don't think it could have gone any better. It was worth the stress before hand.
At the local pool, there was a gated kiddy pool sectioned off. No food or drink was permitted beyond the gate. The pool was the perfect size for the kids. We didn't have to worry about a thing! I've never been so grateful for rules regarding foods and beverages.
Again, no food was permitted on the rides. Honestly I didn't even know food was there until I saw one person carrying around cotton candy. Still it was VERY easy to keep Adam safe. He walked around and around.
While in Bethany Beach we visited the beach, went to the pool, and visited the local play grounds.
I think the beach was the least conducive to the food allergies, just because there were SO MANY people there. But, we kept Adam safe.
When we went to the local playgrounds we always made sure it was in the morning when food would least likely be around. This also ensured that the equipment wasn't too hot to play on.
The kids' most favorite place and activity during the vacation was Fun Land located in Rehoboth Beach about 15 minutes away. Fun Land is a mini amusement park designed for young children. It has numerous rides for children of all ages. The best part about this amusement park, which was actually more like a fair, was that each ride was a maximum of 3 tickets each for the boys. You could purchase 90 tickets for just $20!
This being our first real trip away from home since Adam's diagnoses, I'm beginning to really appreciate measures restaurants and vendors take to ensure the safety of their customers. Jason and I went on a date one afternoon while at Bethany Beach. We went to the board walk. It really surprised us when we saw HUGE signs posting that foods were made with peanut oil at certain restaurants and vendors. Jason and I decided to eat lunch at Five Guys. It was my first time there. As we were waiting for our food, I couldn't help but notice the signs about peanuts again, but also another sign that stated no peanuts were permitted out of the restaurant due to a danger they posed to those with allergies. THANK YOU FIVE GUYS!
Little things like signs on the board walk help me remember that there are people out there who care and slowly the world is starting to accommodate those with food allergies.
After staying a week at the beach, we headed back to New York. We made the trip in one day and actually only stopped once during the 7 hour drive. That one stop though was the biggest challenge we faced during the entire vacation. It was a rest stop, a deluxe rest stop, and it was packed! I ran in first to scope things out and to run to the restroom. Immediately I knew we couldn't bring Adam inside. There were people everywhere carrying ice cream and other treats. You couldn't help but run into people. Not a single table was free. So, we walked around the building on the sidewalk, making sure the kids got their wiggles out and then made lunch in the car and continued on.
This vacation will go down as one of the best vacations ever. It was proof that we can have fun and be safe outside the confines of our little bubble home! Here's to having more fun with food allergies next year on vacation!
Read Vacation Part I below.
Vacation Part I: Secrets
I have been neglecting this blog lately. Reasons...
1. Adam has almost gone into Anaphlactic shock 3 times in the last 6 months. (Definitely not fun times to write about.)
2. I have too many posts to write about how much fun we've been having despite the food allergies. (Guilt and feeling overwhelmed.)
3. I'm dealing with the not so nice side of having a child with food allergies and want to make sure I control my tongue. (I really wish people could just get it!)
4. My computer crashed. (My children adore the power button.)
So there you have it.
I think it's time to get started again though.
Oh, I forgot one more reason for not blogging-
5. We have had a foster child in our home, Baby A, for the past 5 months. She has just been diagnosed with a milk allergy. (Why do these children come to me?)
What to blog about first...
VACATION!!!
Our family took our first real vacation since the diagnoses of Adam's allergies. It was fantastic! Adam didn't have a single allergic reaction. We were gone for 8 days.
How did we do it?
LOTS of planning!
But now I finally feel like I can share our secrets to having fun with food allergies, while still enjoying vacation.
Secret 1: Stay in a location where you can prepare all of your meals. We stayed at a beach house.
Secret 2: Create a meal plan and grocery list before leaving home. The meal plan must include all meals, snacks, and even the unplanned. Make the grocery list as specific as possible.
Secret 3: Purchase specialty allergy friendly foods before you leave and pack them with you. This will not only keep you sane but will ensure you have what you need when you need it.
Secret 4: Bring plenty of reusable snack and lunch containers to use as you are on the go. We brought food with us everywhere. Restaurants were out of the question.
Secret 5: Make a detailed itinerary for your vacation. Any unexpected stops, visits, etc... can lead to reactions. Once at the beach house we made a plan for the week. It ensured we'd know how much food to have with us at all times.
Secret 6: ALWAYS carry Epi-pens and Benadryl with you. Hopefully this one is a given.
Secret 7: Call ahead to all major attractions to ensure they can accommodate your allergy needs. Ask as many questions as you can to ensure your safety.
Secret 8: Plan places to stop while traveling that will be safe. Food courts aren't recommended. We found the most dangerous places we encountered were the deluxe gas/food/restroom stops. One we weren't even able to enter because of the dangers.
Secret 9: Inform everyone that will be with you about your child's allergy needs and rules of the house while you are there. We could have never had such success if it weren't for such supportive Grandparents.
Secret 10: Allow yourself to have fun!
Where did we go? What did we do? Stay tuned for Vacation Part II!
1. Adam has almost gone into Anaphlactic shock 3 times in the last 6 months. (Definitely not fun times to write about.)
2. I have too many posts to write about how much fun we've been having despite the food allergies. (Guilt and feeling overwhelmed.)
3. I'm dealing with the not so nice side of having a child with food allergies and want to make sure I control my tongue. (I really wish people could just get it!)
4. My computer crashed. (My children adore the power button.)
So there you have it.
I think it's time to get started again though.
Oh, I forgot one more reason for not blogging-
5. We have had a foster child in our home, Baby A, for the past 5 months. She has just been diagnosed with a milk allergy. (Why do these children come to me?)
What to blog about first...
VACATION!!!
Our family took our first real vacation since the diagnoses of Adam's allergies. It was fantastic! Adam didn't have a single allergic reaction. We were gone for 8 days.
How did we do it?
LOTS of planning!
But now I finally feel like I can share our secrets to having fun with food allergies, while still enjoying vacation.
Secret 1: Stay in a location where you can prepare all of your meals. We stayed at a beach house.
Secret 2: Create a meal plan and grocery list before leaving home. The meal plan must include all meals, snacks, and even the unplanned. Make the grocery list as specific as possible.
Secret 3: Purchase specialty allergy friendly foods before you leave and pack them with you. This will not only keep you sane but will ensure you have what you need when you need it.
Secret 4: Bring plenty of reusable snack and lunch containers to use as you are on the go. We brought food with us everywhere. Restaurants were out of the question.
Secret 5: Make a detailed itinerary for your vacation. Any unexpected stops, visits, etc... can lead to reactions. Once at the beach house we made a plan for the week. It ensured we'd know how much food to have with us at all times.
Secret 6: ALWAYS carry Epi-pens and Benadryl with you. Hopefully this one is a given.
Secret 7: Call ahead to all major attractions to ensure they can accommodate your allergy needs. Ask as many questions as you can to ensure your safety.
Secret 8: Plan places to stop while traveling that will be safe. Food courts aren't recommended. We found the most dangerous places we encountered were the deluxe gas/food/restroom stops. One we weren't even able to enter because of the dangers.
Secret 9: Inform everyone that will be with you about your child's allergy needs and rules of the house while you are there. We could have never had such success if it weren't for such supportive Grandparents.
Secret 10: Allow yourself to have fun!
Where did we go? What did we do? Stay tuned for Vacation Part II!
Wednesday, May 26, 2010
Adam's Story
I've been asked several times to share Adam's story about how we discovered he had food allergies. Wanting to include this in the book I'm writing, I've decided to finally attack this monster of a task. One would think I have everything recorded, and I do, just not all in the same place. So here goes nothing...
Adam was born on August 28. 2008 by c-section. The first 24 hours after his birth nurses took care of him for the majority of the time. I was too drugged with pain killers to care for him by myself. Jason was home with Owen.
The second night I was in the hospital, Adam roomed with me. This is when I first noticed he was different. Adam was up EVERY hour, cranky and supposedly hungry. He would have diarrhea bowel movements. I specifically remember a nurse saying, "Looks like he might have a milk allergy."
The first two weeks of Adam's life I slept on the couch downstairs (because of the c-section). Adam slept in a bassinet in the living room. It became apparent very quickly that something was wrong. He would grunt in pain ALL night long. During the day he constantly had to be held and was VERY irritable. Adam would arch backward and become as stiff as a board. Nothing could help him resume a regular position until he was finished arching. His face began to break out in a rash and then his body. Every bowel movement he had was a blow out.
After two and a half weeks of holding Adam upright on the couch all night long to stop the grunting and arching we took him to the doctor's. His stool was tested and was positive for blood. Adam's formula was switched to Similac Alimentum due to a milk protein allergy. He was prescribed Axid for supposed reflux which was determined based on his constant arching.
Life became a little more tolerable. Adam took an hour to take a bottle. He lived in his swing, which was the only place he would sleep well. Still the arching continued along with irritability, discomfort, etc...
At about 4 months Adam started solid foods. He began to digress, vomiting on a regular basis. Adam was constantly irritable. We found ourselves on the couch again holding him upright all night. He rarely slept unless he was in his swing. We returned to the doctor's office.
Adam was diagnosed with a severe milk protein and switched to a prescription formula called Elecare. His reflux medication was also switched to adult Prevacid. The doctor decided to have an x-ray done of Adam's digestive system as he drank this white powdery stuff. I don't remember the name of the test. It was discovered that Adam had a Hiatal Hernia. We were referred to a pediatric gastric specialist in Syracuse.
Meanwhile, Adam was taken off of all solid foods. Once removed from his diet he began to improve. A pH probe test was done on February 5, 2009. While taking medication his reflux levels were normal. Although his dosage of Prevacid was increased to 14.5 mg per day because Adam was still doing very poorly. It was the day we received results from the pH probe test that the gastro specialist saw the arching and stiffening we had been talking about for so long. His reply, "That's not a gastro problem, that's neurological!"
Adam was sent for an EEG and CAT Scan. The initial thought was that he may have Cerebral Palsy or was having mini seizures. All tests were completed by the end of February. All results came back normal. With no questions answered still, our pediatrician decided to press forward. He always jokes that Adam has caused some of his grey hairs.
Adam was referred to an allergy specialist next. On May 4, 2009, at only 8 months old Adam received his first round of skin pricking tests. The results were overwhelming, showing that he was allergic to 30 out of 35 foods tested. Retesting was ordered. Previous to this point our pediatrician had asked us to introduce solid foods at 4 months and again at 6 months. Each time the experiments had gone horribly wrong. After viewing the results of the allergy testing, our pediatrician suggested we try again, using the results from the tests. The results showed Adam could have cantaloupe, watermelon, peaches, chicken, rice, and bananas. The experiment was successful and Adam could finally eat solid foods, if only 5 items.
Due to all of the medical struggles Adam had been enduring, he wasn't reaching his physical milestones. Our pediatrician had no other choice but to call Early Intervention to have him evaluated by physical and occupational specialists. Adam's evaluation took place on May 1, 2009. He qualified for occupational therapy due to his inability to eat solid foods and meet physical milestone markers.
Our pediatrician and gastro specialist decided to refer Adam to have a clinical feeding/swallowing evaluation performed by the CDU unit. Their thinking was that perhaps Adam's difficulties eating were caused by something working incorrectly as he tried to eat and swallow his foods. The testing was performed on June 29, 2009. Results were negative. Everything was normal.
Adam's second round of allergy skin testing was performed July 23, 2009 only to determine that all results were inaccurate due to Adam's age. All foods must be tested through trial and error.
After receiving results of first allergy testing and clinical feeding/swallowing studies, our gastro specialist decided it best to perform a colonoscopy and endoscopy on Adam. Results showed negative for every biopsy they took including celiac disease. The hiatal hernia was gone and there were no signs of reflux.
At this point we were pretty hopeless at finding the cause for all of Adam's struggles. We knew he had food allergies but there were SO MANY and they appeared to be worsening. Adam was taken off all of his reflux medication because there was no need for it. He remained on his Elecare formula. At home life was rough. Adam was almost a year old. He would not sleep through the night and was up at least twice a night. We were slowly introducing new foods, but with the trial and error method, it was a painful process. By 1 year old we knew Adam was allergic to apples, oranges, berries of all kinds, milk, Casein, eggs, oats, buckwheat, wheat, peanuts, soy, string beans, carrots, celery, peas, and sweet potatoes. Adam was NOT allergic to rice, corn, chicken, turkey, bananas, cantaloupes, plums, grapes, and potatoes. Our pediatrician had given us Epi-pens and Adam was already using Benedryl on a regular basis. The arching episodes had subsided, but we were still taking turns holding Adam upright almost every night on the couch for at least half of the night. Most likely this was caused by the reactions he was having while trying new foods.
December 1, 2009, Adam had his 15 month well baby visit. Life was still much less than acceptable. Adam's allergies were worsening. There were SO many of them. Just a few weeks before this visit we had been speaking with our pediatrician who had brought up Adam's case with a colleague. His colleague had mentioned that Adam may have Angioedema. If so, it would explain why Adam has so many allergies and where they came from. A simple blood test would determine results. Adam had the blood test done. It came back negative.
At this well baby visit we were all discouraged. Our pediatrician decided it was time to send Adam to Boston to meet with some of the best specialists in the world. Our appointment was scheduled for January 6, 2010.
On December 18, 2009, Adam had an appointment with a new allergist, a pediatric specialist. He received skin testing for 33 foods. Results were determined incorrect by the allergist. Our pediatrician, along with Jason and I were becoming very frustrated. If Adam had all of these allergies, why weren't they showing up when he was tested?
Adam and I made the trek to Boston alone. We had a foster baby at the time that couldn't leave the state so Jason stayed home with Owen and the baby. Our appointment was in the morning. We met with a wonderful doctor. She ordered blood tests to be done immediately. Another appointment was set up with her later that afternoon, along with an appointment with a dietitian.
After reviewing the blood test results that were in, along with all of the records that had been sent from NY, the doctor determined that Adam's only diagnoses was food allergies and nothing else. They are a different type of food allergies, which is why the allergy testing had been incorrect. Most of Adam's allergy attacks are internal where they can't be seen. The swelling occurs on the inside of his body, not above the skin, except for in some cases. There are foods that cause Adam to develop hives and diarrhea, but others only attack him internally, hence the arching and intense pain that we couldn't understand, causing so much irritability. His vomiting reactions can be compared to someone going into anaphalactic shock. In fact they are our warning signs. All of the doctors from the gastro unit in Boston studied Adam's chart. We met with two doctors. They assured us that they had seen several cases just like Adam's. They have no explanation as to why these cases are increasing in number, but they are. We did receive a few treatment suggestions, but the only way to avoid reactions is to avoid the foods entirely.
I find this hilarious and quite annoying since the only way we can discover Adam is allergic to a new food is if we give it to him. As you can see from the side of this blog, we've had to deal with many allergic reactions since. Fortunately with the Elecare Prescription formula that Adam will be on for years to come, along with the foods he can eat, he is thriving and doing extremely well. His fine motor skills and eating skills are about 6 months behind, but we're gaining slowly. Adam was able to walk at 15 months and talks all the time! Most often he is a happy, go lucky, toddler, until he has a reaction. That's when everything changes.
Adam currently takes allergy medication every night before bed. At 16 months he finally was able to stay in his own bed all night long without us holding him upright on the couch. He still wakes up at least once a night for a bottle, but that's usually at 5:30 AM. He goes to bed around 8 PM, so I'm not going to complain.
At times I feel like we live in a bubble, trying to keep Adam safe, but life is good. I have over 75 allergy friendly meals that our family can eat together for dinner. I now have almost 200 recipes total if you include snacks and treats. The doctors in Boston confirmed what we already thought; Adam will most likely never grow out of these allergies. So, finding peace of mind in a final diagnoses and explanation, we have accepted our lot and are really trying to make life as FUN as possible. It's taken a lot of work, but I can honestly say we're happy!
As time goes on, it appears that Adam's allergies are worsening. His milk allergy has gone from only reactions from ingestion to reactions of touch. Adam has almost gone into Anaphalactic Shock 3 times in the last six months. His face has swollen to twice the size, especially his eyes and lips. We have been to the ER once.
Wow! So that's the story. Obviously it needs lots of revisions and probably a million explanations and definitions, but there you have it. Please feel free to ask questions as you comment, because I really want to make sure this makes sense to all who read it!
Still having fun with food allergies!
Adam was born on August 28. 2008 by c-section. The first 24 hours after his birth nurses took care of him for the majority of the time. I was too drugged with pain killers to care for him by myself. Jason was home with Owen.
The second night I was in the hospital, Adam roomed with me. This is when I first noticed he was different. Adam was up EVERY hour, cranky and supposedly hungry. He would have diarrhea bowel movements. I specifically remember a nurse saying, "Looks like he might have a milk allergy."
The first two weeks of Adam's life I slept on the couch downstairs (because of the c-section). Adam slept in a bassinet in the living room. It became apparent very quickly that something was wrong. He would grunt in pain ALL night long. During the day he constantly had to be held and was VERY irritable. Adam would arch backward and become as stiff as a board. Nothing could help him resume a regular position until he was finished arching. His face began to break out in a rash and then his body. Every bowel movement he had was a blow out.
After two and a half weeks of holding Adam upright on the couch all night long to stop the grunting and arching we took him to the doctor's. His stool was tested and was positive for blood. Adam's formula was switched to Similac Alimentum due to a milk protein allergy. He was prescribed Axid for supposed reflux which was determined based on his constant arching.
Life became a little more tolerable. Adam took an hour to take a bottle. He lived in his swing, which was the only place he would sleep well. Still the arching continued along with irritability, discomfort, etc...
At about 4 months Adam started solid foods. He began to digress, vomiting on a regular basis. Adam was constantly irritable. We found ourselves on the couch again holding him upright all night. He rarely slept unless he was in his swing. We returned to the doctor's office.
Adam was diagnosed with a severe milk protein and switched to a prescription formula called Elecare. His reflux medication was also switched to adult Prevacid. The doctor decided to have an x-ray done of Adam's digestive system as he drank this white powdery stuff. I don't remember the name of the test. It was discovered that Adam had a Hiatal Hernia. We were referred to a pediatric gastric specialist in Syracuse.
Meanwhile, Adam was taken off of all solid foods. Once removed from his diet he began to improve. A pH probe test was done on February 5, 2009. While taking medication his reflux levels were normal. Although his dosage of Prevacid was increased to 14.5 mg per day because Adam was still doing very poorly. It was the day we received results from the pH probe test that the gastro specialist saw the arching and stiffening we had been talking about for so long. His reply, "That's not a gastro problem, that's neurological!"
Adam was sent for an EEG and CAT Scan. The initial thought was that he may have Cerebral Palsy or was having mini seizures. All tests were completed by the end of February. All results came back normal. With no questions answered still, our pediatrician decided to press forward. He always jokes that Adam has caused some of his grey hairs.
Adam was referred to an allergy specialist next. On May 4, 2009, at only 8 months old Adam received his first round of skin pricking tests. The results were overwhelming, showing that he was allergic to 30 out of 35 foods tested. Retesting was ordered. Previous to this point our pediatrician had asked us to introduce solid foods at 4 months and again at 6 months. Each time the experiments had gone horribly wrong. After viewing the results of the allergy testing, our pediatrician suggested we try again, using the results from the tests. The results showed Adam could have cantaloupe, watermelon, peaches, chicken, rice, and bananas. The experiment was successful and Adam could finally eat solid foods, if only 5 items.
Due to all of the medical struggles Adam had been enduring, he wasn't reaching his physical milestones. Our pediatrician had no other choice but to call Early Intervention to have him evaluated by physical and occupational specialists. Adam's evaluation took place on May 1, 2009. He qualified for occupational therapy due to his inability to eat solid foods and meet physical milestone markers.
Our pediatrician and gastro specialist decided to refer Adam to have a clinical feeding/swallowing evaluation performed by the CDU unit. Their thinking was that perhaps Adam's difficulties eating were caused by something working incorrectly as he tried to eat and swallow his foods. The testing was performed on June 29, 2009. Results were negative. Everything was normal.
Adam's second round of allergy skin testing was performed July 23, 2009 only to determine that all results were inaccurate due to Adam's age. All foods must be tested through trial and error.
After receiving results of first allergy testing and clinical feeding/swallowing studies, our gastro specialist decided it best to perform a colonoscopy and endoscopy on Adam. Results showed negative for every biopsy they took including celiac disease. The hiatal hernia was gone and there were no signs of reflux.
At this point we were pretty hopeless at finding the cause for all of Adam's struggles. We knew he had food allergies but there were SO MANY and they appeared to be worsening. Adam was taken off all of his reflux medication because there was no need for it. He remained on his Elecare formula. At home life was rough. Adam was almost a year old. He would not sleep through the night and was up at least twice a night. We were slowly introducing new foods, but with the trial and error method, it was a painful process. By 1 year old we knew Adam was allergic to apples, oranges, berries of all kinds, milk, Casein, eggs, oats, buckwheat, wheat, peanuts, soy, string beans, carrots, celery, peas, and sweet potatoes. Adam was NOT allergic to rice, corn, chicken, turkey, bananas, cantaloupes, plums, grapes, and potatoes. Our pediatrician had given us Epi-pens and Adam was already using Benedryl on a regular basis. The arching episodes had subsided, but we were still taking turns holding Adam upright almost every night on the couch for at least half of the night. Most likely this was caused by the reactions he was having while trying new foods.
December 1, 2009, Adam had his 15 month well baby visit. Life was still much less than acceptable. Adam's allergies were worsening. There were SO many of them. Just a few weeks before this visit we had been speaking with our pediatrician who had brought up Adam's case with a colleague. His colleague had mentioned that Adam may have Angioedema. If so, it would explain why Adam has so many allergies and where they came from. A simple blood test would determine results. Adam had the blood test done. It came back negative.
At this well baby visit we were all discouraged. Our pediatrician decided it was time to send Adam to Boston to meet with some of the best specialists in the world. Our appointment was scheduled for January 6, 2010.
On December 18, 2009, Adam had an appointment with a new allergist, a pediatric specialist. He received skin testing for 33 foods. Results were determined incorrect by the allergist. Our pediatrician, along with Jason and I were becoming very frustrated. If Adam had all of these allergies, why weren't they showing up when he was tested?
Adam and I made the trek to Boston alone. We had a foster baby at the time that couldn't leave the state so Jason stayed home with Owen and the baby. Our appointment was in the morning. We met with a wonderful doctor. She ordered blood tests to be done immediately. Another appointment was set up with her later that afternoon, along with an appointment with a dietitian.
After reviewing the blood test results that were in, along with all of the records that had been sent from NY, the doctor determined that Adam's only diagnoses was food allergies and nothing else. They are a different type of food allergies, which is why the allergy testing had been incorrect. Most of Adam's allergy attacks are internal where they can't be seen. The swelling occurs on the inside of his body, not above the skin, except for in some cases. There are foods that cause Adam to develop hives and diarrhea, but others only attack him internally, hence the arching and intense pain that we couldn't understand, causing so much irritability. His vomiting reactions can be compared to someone going into anaphalactic shock. In fact they are our warning signs. All of the doctors from the gastro unit in Boston studied Adam's chart. We met with two doctors. They assured us that they had seen several cases just like Adam's. They have no explanation as to why these cases are increasing in number, but they are. We did receive a few treatment suggestions, but the only way to avoid reactions is to avoid the foods entirely.
I find this hilarious and quite annoying since the only way we can discover Adam is allergic to a new food is if we give it to him. As you can see from the side of this blog, we've had to deal with many allergic reactions since. Fortunately with the Elecare Prescription formula that Adam will be on for years to come, along with the foods he can eat, he is thriving and doing extremely well. His fine motor skills and eating skills are about 6 months behind, but we're gaining slowly. Adam was able to walk at 15 months and talks all the time! Most often he is a happy, go lucky, toddler, until he has a reaction. That's when everything changes.
Adam currently takes allergy medication every night before bed. At 16 months he finally was able to stay in his own bed all night long without us holding him upright on the couch. He still wakes up at least once a night for a bottle, but that's usually at 5:30 AM. He goes to bed around 8 PM, so I'm not going to complain.
At times I feel like we live in a bubble, trying to keep Adam safe, but life is good. I have over 75 allergy friendly meals that our family can eat together for dinner. I now have almost 200 recipes total if you include snacks and treats. The doctors in Boston confirmed what we already thought; Adam will most likely never grow out of these allergies. So, finding peace of mind in a final diagnoses and explanation, we have accepted our lot and are really trying to make life as FUN as possible. It's taken a lot of work, but I can honestly say we're happy!
As time goes on, it appears that Adam's allergies are worsening. His milk allergy has gone from only reactions from ingestion to reactions of touch. Adam has almost gone into Anaphalactic Shock 3 times in the last six months. His face has swollen to twice the size, especially his eyes and lips. We have been to the ER once.
Wow! So that's the story. Obviously it needs lots of revisions and probably a million explanations and definitions, but there you have it. Please feel free to ask questions as you comment, because I really want to make sure this makes sense to all who read it!
Still having fun with food allergies!
Monday, May 10, 2010
Food Allergy Awareness Week
More than 12 million Americans, including three million children, suffer from food allergies that can result in potentially fatal reactions. The federal government spends about $26 million a year on research to find a cure for food allergies--far less than on other... important diseases. Give up a favorite food this week and make a difference!
You can also write letters to Congress by going to the Food Allergy Initiative website. I just did!
Help find a cure for Adam and Owen.
Other ways you can support the cause:
-Wear a teal ribbon or display them on your vehicle or home.
-Give out PAL Hero Awards to those who have helped Protect A Life from food allergies. (Found on The Food Allergy & Anaphylaxis Network.)
-Give presentations at school, work, or in public settings
-Donate money to the cause or hold fundraisers
This year we're giving out PAL awards and educating the boys about the foods they can and can't eat. Next year I think we'll venture into the fundraising atmosphere!
Have Fun!
You can also write letters to Congress by going to the Food Allergy Initiative website. I just did!
Help find a cure for Adam and Owen.
Other ways you can support the cause:
-Wear a teal ribbon or display them on your vehicle or home.
-Give out PAL Hero Awards to those who have helped Protect A Life from food allergies. (Found on The Food Allergy & Anaphylaxis Network.)
-Give presentations at school, work, or in public settings
-Donate money to the cause or hold fundraisers
This year we're giving out PAL awards and educating the boys about the foods they can and can't eat. Next year I think we'll venture into the fundraising atmosphere!
Have Fun!
Monday, May 3, 2010
Earth Day Festivities
It has always been a goal of mine to celebrate Earth Day with my kids. Last year I think I actually forgot about the holiday until afterwards. This year I planned way in advance. I came up with a plan of activities to do through out the week including crafts, games, and projects. I designed an FHE lesson to go with the theme, and even found some really yummy treats to make.
Overall I will admit the week didn't go as planned, but that was only because some of the kids were sick and it became really cold.
My Earth Day Week Plan consisted of this:
Monday: Family Home Evening dedicated to the creation story, decorating pots, planting seeds in them, and then a special treat: Rice Krispie Colored Earths.
Throughout the rest of the week I wanted to make coffee filter worlds, habitat boxes, and color pictures for decorations at our Earth Day Party planned for Thursday.
I wanted to take the kids on a walk to pick up garbage and then go to the Montezuma Wild Refuge about 10 miles from our house. They have trails and everything. Most important... it's free.
I had even found some cute movies the boys would like for a special Earth Day Movie night. Owen and Adam like Bob the Builder. He has a great video about a special project. The whole theme of the movie is "Reduce, Reuse, Recycle" The Bernstein Bears also have an episode about saving the earth where they come up with projects they can do in the community to help out. Of course I don't remember the titles of these movies, but they do exist because we have them.
Lastly, we were going to go all out and have a special Earth Day Party on Thursday. I had planned on decorating, making dirt cups for the boys, possibly decorating some sugar cookies, having a great meal and just having fun with the whole idea.
Instead...
Monday night went as planned, except for planting seeds. Owen had no desire to do this. Also, there was no immediate satisfaction for him. Instead we went outside and planted my flowers from Easter in the backyard. I do believe the woodchuck that lives near our house has already eaten them.
The Earth Rice Krispie treats turned out well. The boys really liked them. All you do to make them is follow the recipe for regular Rice Krispie Treats, but split the melted marshmallows and margarine into two pots. Add food coloring to each, one blue, and one green. Let the mixture cool off a little, otherwise it's impossible to shape the balls. Once the balls are shaped-Voila!
Like I said, they were a definite hit!
After Monday we didn't do anything until Thursday. It was cold and kids were sick. On Thursday I tried my best to make the day really fun, but all of my efforts seemed to go wrong somewhere. In the end the kids didn't know the difference and were completely content and excited about the holiday, but I felt bad.
We tried making the coffee filter worlds. They are really easy. Take blue and green markers, color a coffee filter and then spray it with a spray bottle. The colors spread and run together. It looks like the Earth when finished.
I got out the markers and coffee filters. Owen and Adam each colored one, and then... I couldn't find our spray bottle ANYWHERE. We didn't get to finish them. Of course the next week I found it, but they weren't interested then.
Instead I pulled out some Endangered Animal Coloring pages I had found. They didn't care one bit and loved coloring the animals.
After the coloring pages, we had a simple lunch and then the boys took a nap. While they napped I tried making the pudding for the dirt cups. I had read that Oreo cookies and Jello Pudding mixes are dairy free. Surprise! It's true. Although there are some types of the pudding that do include dairy. Anyways, I had purchased vanilla pudding mixes and vanilla Oreo cookies, along with some gummy worms. Owen's milk worked great with the pudding mix. Adam's formula... not so much. It never thickened. When it came time to actually have the treat that night, Adam didn't get any. I was really disappointed. Although, Owen didn't eat any either. When he looked at it, he refused to eat it. He's a very picky eater. Unless he's tried something before, the chances are good he'll refuse.
So, my husband and I enjoyed the special treats. Meanwhile, Owen ate all of the gummy worms while Adam ate WAY too many Oreo cookies.

After Owen finished the gummy worms, he also ate Oreos.
I was bumbed my plan hadn't worked as I had planned, but we still had LOTS of fun celebrating the special holiday. Owen now knows what the Earth is and picks it out any time he sees it. Adam now knows what an Oreo is and actually has been known to wake up at 4:30 AM asking for them.
We never did end up watching a movie because the boys wanted to watch Go! Diego Go! instead. But hey, that's all about endangered animals so it counts too right?
I'm vowing that next year will go much better. We're definitely going to make the habitat boxes and go to the Montezuma Refuge. Meanwhile, it's still very safe to say we're having fun with food allergies as we celebrate Earth Day!
Overall I will admit the week didn't go as planned, but that was only because some of the kids were sick and it became really cold.
My Earth Day Week Plan consisted of this:
Monday: Family Home Evening dedicated to the creation story, decorating pots, planting seeds in them, and then a special treat: Rice Krispie Colored Earths.
Throughout the rest of the week I wanted to make coffee filter worlds, habitat boxes, and color pictures for decorations at our Earth Day Party planned for Thursday.
I wanted to take the kids on a walk to pick up garbage and then go to the Montezuma Wild Refuge about 10 miles from our house. They have trails and everything. Most important... it's free.
I had even found some cute movies the boys would like for a special Earth Day Movie night. Owen and Adam like Bob the Builder. He has a great video about a special project. The whole theme of the movie is "Reduce, Reuse, Recycle" The Bernstein Bears also have an episode about saving the earth where they come up with projects they can do in the community to help out. Of course I don't remember the titles of these movies, but they do exist because we have them.
Lastly, we were going to go all out and have a special Earth Day Party on Thursday. I had planned on decorating, making dirt cups for the boys, possibly decorating some sugar cookies, having a great meal and just having fun with the whole idea.
Instead...
Monday night went as planned, except for planting seeds. Owen had no desire to do this. Also, there was no immediate satisfaction for him. Instead we went outside and planted my flowers from Easter in the backyard. I do believe the woodchuck that lives near our house has already eaten them.
We tried making the coffee filter worlds. They are really easy. Take blue and green markers, color a coffee filter and then spray it with a spray bottle. The colors spread and run together. It looks like the Earth when finished.
I got out the markers and coffee filters. Owen and Adam each colored one, and then... I couldn't find our spray bottle ANYWHERE. We didn't get to finish them. Of course the next week I found it, but they weren't interested then.
So, my husband and I enjoyed the special treats. Meanwhile, Owen ate all of the gummy worms while Adam ate WAY too many Oreo cookies.
After Owen finished the gummy worms, he also ate Oreos.
We never did end up watching a movie because the boys wanted to watch Go! Diego Go! instead. But hey, that's all about endangered animals so it counts too right?
I'm vowing that next year will go much better. We're definitely going to make the habitat boxes and go to the Montezuma Refuge. Meanwhile, it's still very safe to say we're having fun with food allergies as we celebrate Earth Day!
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