Monday, November 29, 2010

Taking the Danger Out of Christmas

November's support group meeting went well, although I'd really love to see attendance triple or possibly quadruple for our next meeting. It's my Christmas wish! If you know of anyone interested in attending PLEASE share this blog with them. We welcome anyone with children who have any special dietary needs.

Our next support group is scheduled for Thursday, December 16th at 6:00 PM. I will be sharing MANY ways to enjoy the Christmas season without worrying about food. Please bring any nonfood ideas and/or traditions that your family has to share.

We will also be having an allergy friendly Christmas Cookie recipe exchange. Please bring copies of your favorite allergy friendly Christmas treat(s) recipe(s).

On Friday December 31st at 3 PM-5PM we will be having a Winter Wonderland Party. The event will be held outside if there is snow. Activities will include sledding, building snowmen, snow caves, and snowball fights. Please wear appropriate attire and bring sleds and nonfood items to make your snowman! If there is no snow, we will have a New Year's Eve Party, held at the same time.

We hope to see you there!!!

Monday, November 1, 2010

Fun Without Food Halloweeen Trunk or Treat

Thank you to all who made our Fun Without Food Halloween Trunk or Treat a success! We had 15 children attend. Next year we hope to triple that number!







Tuesday, September 28, 2010

LAUNCHING...

After months of deliberation, research, and planning, Jason and I are organizing a support group for families with children of special dietary needs. The support group will meet once a month. Day care will be provided for children. Most importantly, NO FOOD will be at any of these meetings. Each meeting will provide parents of children with special dietary needs the opportunity to socialize with other parents of children with similar needs. Meanwhile children will be able to play with one another in a safe environment without worrying about safety. There will be an education component to each meeting lasting approximately 30 minutes. Many subject areas will be addressed ranging from coping with the challenge of children with special dietary needs to dietary education. Speakers with the appropriate education and background will be presenting the education components.

The name of our new unofficial organization will be Fun Without Food. This blog will be changed and updated to reflect this name. More details will follow. If our trial run is successful we will go through the proper channels to make our organization official. Besides providing support for parents of children with these special needs, we are also striving to provide one Fun Without Food activity for families each month. All are welcome to attend!

Our first Fun Without Food support group will take place Thursday, October 14, 2010 from 6-7:30 PM. The leaders at The Church of Jesus Christ of Latter-day Saints have given us permission to use their building located at 63 Kearney Ave, Auburn, NY 13021. Child care will be provided. An EMT will be on site in case of any unplanned emergency. No food is permitted. The theme of the meeting will be "My Child is Different. Now What?" Licensed Mental Health Counselor (LMHC) Jason Eddy will discuss topics including the grieving process parents go through when a child is diagnosed with a special dietary need, how it differs from other grieving processes and how to cope with the loss and/or lack of support from extended family and friends. Please e-mail us at funwithoutfood@yahoo.com or leave a comment on this blog if you are interested in attending.

Our first Fun Without Food family activity will be a Halloween Trunk or Treat. It will take place Saturday, October 30, 2010 from 6-8 PM. Once again the LDS church has allowed us to use their facilities. Families will decorate their vehicles and hand out non food items to children with special dietary needs and all others who choose to attend. Children, accompanied by an adult will be able to go to each decorated vehicle and trick or treat, receiving safe items to enjoy this Halloween season.

All vehicles must be registered by Sat., Oct. 23, 2010. Please make sure vehicles are clear of all food and wrappers. No masks, face paint, and/or hair dyes permitted. Treats can not include food, adhesive/latex items and/or foam crafts. For ideas, questions and/or concerns contact Renae Eddy at funwithoutfood@yahoo.com or you may leave a comment on this blog. An EMT will be on site to ensure children’s safety in case of an unexpected emergency.

Further detailed information about this event will be posted on the blog, including non food item ideas and places to purchase them. Please share this information with anyone and everyone you know who has a child with special dietary needs. We really want this event to be a success. We have spoken with the Auburn City School District Health Office and Superintendent, several doctor's offices, and The Citizen, Auburn's newspaper, and several other organizations in the community who are excited, supportive, and willing to advertise our events!

Can't wait to see you there!!!

Friday, September 24, 2010

Yummy! Yummy!

Once again, I've been a huge slacker on this blog. So, to make up for it here are a few of our favorite allergy friendly recipes!

Chicken Enchiladas

This recipe has been revised from a Real Simple Recipe.

4 tbsp. canola oil or just plain water
2 small zucchini, diced
1 ear of corn or 1/2 cup corn
2 cups shredded chicken
Salt & Pepper
12 6-inch corn tortillas

Salsa of choice

Optional: shredded Monterey Jack Cheese and Sour Cream

Heat oven to 400 degrees F. Heat 1 tbsp. of the oil in a medium skillet over medium-high heat. Add zucchini and corn and cook, stirring, until zucchini begins to soften (about 3-5 minutes). Transfer to large bowl.

Add the chicken, 1 tsp. salt and 1/4 tsp. pepper. Mix to combine.

Wipe out the skillet and heat the remaining oil on medium heat. One at a time, cook the tortillas in the skillet until softened, 10-15 seconds per side. Transfer paper towel-lined plate.

Divide the chicken mixture among the tortillas, fold them up, and place seam-side down in a large baking dish. Bake until heated through, 8-10 minutes.

Serve enchiladas with cheese, salsa, and sour cream if using.

Chicken and Corn Chili

Recipe revised. Originally from Family Circle.

1 lb. boneless, skinless chicken breasts
2 cups low sodium chicken broth
1 green pepper, seeded and chopped
1 1/2 teaspoons paprika
1/2 teaspoon oregano
3/4 tsp. salt
1 can (14.5 ounces) diced tomatoes
1 1/2 cups frozen corn, thawed
2 cans (15 ounces each) black beans, drained and rinsed
2 tablespoons stone-ground cornmeal

Combine chicken, broth, green pepper, an spices in slow cooker bowl. Cover and cook for 4 hours on HIGH or 6 hours on LOW.

Remove the chicken to a cutting board and allow to cool slightly. Shred the chicken and return to the slow cooker with tomatoes, corn and beans.

Stir in the cornmeal and let sit for 5 minutes to soften cornmeal.

Sunday, July 25, 2010

Out of the House!

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!

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.
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 & Fruit
The recipes for this meal are located in my Easter Post.

Meal 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
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.
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.
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.
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.
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!
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.

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!

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!

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!

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!

Monday, April 12, 2010

Up and Down


A few weeks ago, we learned from someone in the area that preschools were not accepting children with food allergies. Preschools are private and therefore have this right. I don't remember if it was before Adam was born of when he was a baby, but I know it was before the diagnosing of his allergies that I felt the distinct impression that I need to be prepared to home school my children.


Jason and I are not people that support home schooling in general. If it is necessary due to physical or mental issues, that's one thing, but otherwise we feel very strongly that children should be immersed in either a public or private school atmosphere, in order to develop in the best way possible. Of course there are always really negative parts to public and private schools, but I'd rather have my children face these issues while they are young and in my home, so I can teach them, than have them run free after they leave my home, completely naive about the world.


Previously we have held several discussions with our pediatrician and specialists about Adam and his future in a private or public school. The answer has always been a quick and comforting, "He'll be fine!" that is until today.


Last week, while trying to find ways for our family to become more social and participate in events in the community I called our local YMCA. Part of my reasoning for calling was that I had found out they had free day care available while parents worked out at the gym. A friend had also told me they have a preschool there. I wanted to obtain some information for the future, since next year I will be signing up Owen.


It turns out they can not accommodate children with food allergies in their day care facility. They can accommodate children with food allergies in preschool, to the best of their ability, BUT parents rotate bringing in snacks. Sippy cups and drinks of various kinds are always available and around. A teacher can be trained and always on sight in case of the need to use an epi-pen, BUT they can't guarantee 100% safety.


After speaking with the woman on the phone, I actually felt confident that despite the lack of the 100% guarantee, Adam would be okay there. I can't even give a 100% guarantee in my own home, just because the boys' allergies vary so much.


Then last week came. Baby A had used Adam's bottle nipples while taking some bottles of her own formula. The formula is 75% lactose free, but definitely NOT dairy free in any way. We had washed the nipples thoroughly, or so we thought, but the minute Adam had the nipples touch his face, where ever there was contact, he had a rash. It took me a couple days to figure out what was causing the rash, but when I did I was not a happy camper to say the least.


I sterilized the nipples, boiling them and adding Clorox to the water. Thankfully the rashes stopped coming. But then the reality sank in. If Adam is breaking out over contact with a nipple that had dairy on it, and it had been washed, what does this mean about his allergy to dairy? Is it getting worse in severity too? I called our doctor.


A new sticker was put on Adam's file. It says something along the lines of "allergy to dairy by contact." Today while in the doctor's office with Baby A, the doctor brought up the issue. I explained in detail what had occurred. He kind of laughed and explained that he had been at a seminar last week about food allergies. He had been thinking about Adam. One of the stories (either told by video or in person) was about a little boy with a severe milk allergy. His friends were picking on him at school about his food allergies. One of them decided to throw an open container of milk at him. Instantly he broke out in a blistering rash. Then the doctor became serious. He told me that I NEED to have epi-pens EVERYWHERE I go. And then he said it,


"It may be too dangerous for Adam to go to school."


I know I am in denial about all of this, because I still have milk in my house and really have no desire to remove it, thinking that I can handle this, but then again, Adam broke out because of a spoon used for cereal in the morning just today.


I know there are several other mothers out there with kids who have life threatening allergies that send there kids to school. I ask that you please comment and give your input and experiences.


I know too though that in the last couple of months alone, we've been to the ER over heart monitor stickers. We've been in the doctor's office receiving the tiniest amount of egg in a vaccination causing a whole slew of affects including hives, vomiting, etc... Adam has a lot of allergies and they all seem to be worsening.


It's one thing if it's just milk, but then it's another to have a list that's really long.


So, right now I feel very mixed up inside. But, in the end, what will be will be, and we'll just deal with it. I can teach my kids at home. It will be a lot of work, but I can make it fun right? Secretly I'm going to still hope that Adam will be fine to go to school when the time comes, but if I find some really cool teaching materials, I may just pick them up!

Wednesday, April 7, 2010

An Allergy Friendly Easter Celebration

I can still remember last year's Easter before allergies were diagnosed. We didn't had a clue what was causing Adam's constant sickness. It's amazing what can happen in a year. This was our first allergy friendly Easter. I must say it was the hardest holiday yet to celebrate without food. Halloween didn't bother me, but Easter I really struggled with. I remember finding the cutest chocolates last year to put in Owen's basket, all race cars and dump trucks. This year there was no candy, not even for Mommy and Daddy. Usually Jason and I do Easter baskets for each other too, but since we couldn't put candy in them, we just stopped.

In the end, I was pretty satisfied with the children's Easter baskets. They loved them.

Owen's Easter Basket: Contents: Diego Gardening Tools & Gloves, The Children's Place Tie, Socks, & Vest for church, No Spill Bubbles (These didn't work. I was really upset.), Thomas the Train Pez Dispenser (I guess this was food, but Owen never used it in that way.), Transportation Stickers and Sticker Book, Construction Vehicle Board Book and 5 Hot Wheels Cars.

Adam's Easter Basket:
Contents: Sesame Street Children's Silverware, Cars Board Book, Frog Beanie Baby, The Children's Place Tie, Socks & Vest for church, No Spill Bubble Blitzer, Road Rockin Rids musical race car, and 5 Hot Wheels cars.
We have an 8 month old foster baby girl living with us right now. She will be living with us for quite some time. Since we can not post her name on the Internet, she will be referred to as Baby A.
Baby A's Easter Basket:
Contents: Butterfly eggs filled with Velcro barrettes for hair, Tonka Bug Car, Shoes for church, Bonnet, Ladybug plate, bowl, & cup, Disney Princess silverware, and her first sippy cup.

Easter is the one holiday that we invite ALL of my extended family. I am so pleased to say that the entire menu was allergy friendly. Click on the titles for recipes, if recipes don't follow.

Tortilla Chips with Fresh Tomato Salsa or Bean & Corn Salsa
Frozen Fruit SaladPasta Salad with Turkey Pepperoni
Ingredients:
allergy friendly pasta of choice
turkey pepperoni
green pepper
olives
cherry tomatoes
allergy friendly Italian dressing
(You can add more veggies, but these are the only ones safe for both of our boys. Normally I would add cucumbers, celery, and cubed sharp cheddar cheese too.)
Stuffed Red Peppers
Ingredients:
4 Red bell peppers with cores and seeds removed
1 pound ground turkey or ground chicken
1 cup uncooked rice
1 can diced tomatoes, or diced fresh tomatoes
1 8 oz can tomato sauce
1/4 c diced onion
salt and pepper to taste
Brown the ground meat and saute the onions. Cook the rice while the meat is cooking. Combine meat, rice and canned tomatoes. Season to taste. Put mixture inside the peppers. Top with tomato sauce. Bake at 375 until peppers are tender.
Honey Chicken Skewers (We didn't have the corn with it.)
And for desserts:
To make cupcakes, alter cooking time to about 15 minutes.
(I cooked this a little too long, but it was still REALLY good!)
We also served allergy friendly turkey hot dogs for the younger kids. Instead of candy for guests at their seats and as table decor we used flowers and seeds. Extended family members brought gifts for all the kids instead of candy, which was really nice.
And the Easter Egg Hunt...
We purchase those miniature plastic animals of all kinds. They fit very well in the larger plastic eggs. My boys were thrilled, so much that they opened each egg, left the eggs on the ground and only collected the animals.
Next year I'd like to come up with some Easter activities and goodies to make before the big day, just to get in the spirit of the holiday, but that will come next year. I'm just grateful both boys had fun on yet another holiday.




Daddy's Birthday Treats

My husband's Wii/Cars Birthday Party was a hit! For more details about the actual party go here. But I must say the allergy friendly food turned out wonderful! Adam LOVED everything and so did my husband.

Dinner: Herb & Chicken Pasta

Owen won't eat pasta, but if he did I could have easily substituted rice pasta.Ingredients
1 (16 ounce) package angel hair pasta
4 skinless, boneless chicken breast halves
salt and pepper to taste
1/2 teaspoon dried basil
1/2 teaspoon dried rosemary
1/2 teaspoon Cajun seasoning (optional) I omitted this
1/2 teaspoon crushed red pepper flakes (optional)
1/4 cup olive oil
3 cloves garlic, chopped
1 onion, chopped
1 cup chicken broth

Directions
Bring a large pot of lightly salted water to a boil. Add pasta and cook for 8 to 10 minutes or until al dente; drain and reserve.
Meanwhile, season chicken with salt and pepper, basil, rosemary, Cajun seasoning, and red pepper flakes. Heat oil in a large skillet over medium heat; add chicken and cook until browned. Remove chicken from skillet and stir in garlic and onions; cook and stir until clear.
Return chicken to skillet over onion mixture and add broth. Simmer until chicken is cooked through and no longer pink inside; spread mixture over pasta and serve.

Dessert: Banana Cupcakes
One of my most favorite recipes that is served to everyone that comes to our home is Banana Cake. I've not been able to adapt this recipe, but it dawned on me a couple of weeks ago that perhaps if I made the boys' allergy friendly banana bread in cupcake holders and then frosted them, they would taste similar. Well, my experiment worked extremely well. The cupcakes were a HUGE hit and the best allergy friendly ones I've tasted so far. For the banana bread recipe click here. The cupcakes ended up cooking for about 25 minutes each, but I'd suggest starting at 15 minutes depending on your oven.
Another birthday successful!

Monday, March 22, 2010

Crazy Idea

So tonight I was thinking a lot as I was washing the dishes and got a crazy idea. After running it past Jason, I think it actually might be a crazy idea that's a good idea, but wanted to get more input. After Halloween I realized how incredibly difficult holidays are having kids with food allergies. Christmas and Easter are just confirming this. I had already decided that next year I would throw my kids a Halloween party that was allergy friendly where they could invite some friends, but now I'm wondering if I should rethink my plans.

What if I threw an allergy friendly Halloween Party for the community? If I combined my kids' food allergy lists together, it would be quite friendly for a lot of kids, who otherwise may not be able to enjoy the holiday. I could advertise through doctor's offices, schools, the paper, and many more places, asking for a donation to help cover the costs of foods, prizes, games, decorations, etc.. It would be a party where parents and children alike could really relax and enjoy themselves. If it was successful for Halloween, why not do one at Christmas and Easter too? I'm sure I could get help from other parents I know.

I'm really liking this idea and am definitely up for the work that would be involved. Knowing myself and just how much our lives have changed because of the allergies, if I saw something advertised like this, I would definitely look into it. The first party may be small, but I'm guessing the attendance would grow at every event, as long as they were fun enough.

So what do you think? Is this idea too crazy?

Wednesday, March 10, 2010

Sane Woman Turned Wolverine

My pediatrician has challenged me to write a book about my personal journey with Adam, discovering his food allergies and how we live with them. He's requested that I include a section of recipes as well. At first when the idea was mentioned, I thought he was joking. But each time I enter his office he asks how the book is coming and if it is finished. So I've decided to take the challenge. I'm not quite sure what the final product will look like, but my audience will be parents, relatives, and friends of those with food allergies. There are a lot of books about food allergies, but this one I'm guessing will be very different than others we've read. I want to focus on how we cope with food allergies. There's the information portion, but then there's life. That's the hard part. I'm hoping to combine my diet expertise with my husband's counseling expertise (he's a mental health counselor), along with entertaining descriptions of my feelings and thought processes. Please feel free to contribute and/or suggest different aspects of your journey you'd like mentioned or discussed.

This weekend I received my first real inspiration for the book. Tonight I wrote a page and wanted to share. Hopefully you find it entertaining. The feelings are definitely real, but as I was processing these feelings before another dreaded event this weekend, I started noticed my son's super heroes on the floor. It triggered an image of myself as a super hero. Quickly I ran down the list of familiar super heroes, their powers, weaknesses, transformations, etc. It was then I realized, imagining myself as Wolverine, really helped me feel better and cope with the anxieties and frustrations I was feeling inside. When I shared this imagery process with my husband and best friend, they both laughed, but also expressed that the explanation of the imagery helped them to understand me so much more! Enjoy!

Sane Woman Turned Wolverine
My jaw begins to tighten up. Breaths shorten and become shallow. Muscles throughout my entire being feel the familiar surge of energy. Tension shows in ripples across my forehead. Adrenaline has kicked in. It’s time to leave. Safety is gone. The life guard is on duty.
Our destination is supposedly “safe.” Deem it what you may, but no place is ever “safe.” There is always a threat. I plead mercy for the inflicted and for myself. We’re almost there.
“Deep breaths,” I remind myself. “Stay calm.”
And then it happens. We enter. I am provoked.
There is a delicately decorated candy dish filled with luscious chocolate covered nuts of every kind beautifully presented on the coffee table for all to enjoy.
Teeth clench. Fists tighten. It’s as if my heart stops beating. Claws emerge ready to kill.
With all of the muster in my being I try to contain myself.
“Would you mind removing the candy from the room please? My son is allergic. It is very dangerous to have it around while he is here.”
“Oh, he’ll be fine. We’ll keep an eye on the little guy. Besides, the candy is wrapped. He won’t get into it.”
“No, really. It is too dangerous. We will not be able to stay if it is here.”
“Stop being so paranoid! He’ll be fine. Sit down and make yourself comfortable.”
I can’t reign in the urge to kill any longer. I bite my tongue to prevent the words from being heard.
“Why can’t you understand this? I have spoken with you about this before! Are you trying to kill my kid! If you are going to have this stuff around, we will not be coming here again!”
After the brief pause to contain my urges, I am quick to respond, “I’m sorry, we can’t stay.”
Quickly, I scoop up my son and head out the door. One more place we are not welcome. There are so many.
How long did it take extended family members to take me seriously? Friends? Acquaintances?
When did I turn from being a sane woman into Wolverine?
The answer comes too quickly-when my son was diagnosed with severe food allergies.

Play Dough

Owen used to LOVE playing with Play-Do. We have lots of fun toys we use as we mold it and shape it. But once Adam came along all of that fun ended. I've been petrified to even pull it out. One wouldn't think the ingredients of Play-Do would be dangerous BUT they are. A few weeks ago I stumbled across a recipe for allergy friendly Play Dough made with rice flour. I was so excited and just had to try it. Yesterday was the big day. It was definitely a success!

Click HERE for recipe.

Have fun!


Thursday, March 4, 2010

Cinnamon Rolls

I had been craving cinnamon rolls for quite some time. It was a quest of mine to find a recipe that both of my boys could enjoy. The thought of spending hours making delicious cinnamon rolls when they weren't around or awake did not appeal to me in the least. A couple weeks ago I finally found a recipe that would work. On Tuesday, I tried the recipe out. I was NOT disappointed in the least! Not only were these the easiest cinnamon rolls I have EVER made, (no need for them to rise or anything), they were amazing. My parents made an unexpected visit Tuesday night. I let them each try a piece. Both of them said they were absolutely delicious. The boys devoured them. My husband said they were too good to save for the boys. (We try to not eat their allergy friendly treats so there are more for them to enjoy.) And the most amazing thing was that I thought they tasted better the second day, cold, taken out of the refrigerator. What cinnamon roll tastes just as good if not better the second day? I can not rave enough about this recipe. The boys both LOVED them too.

I've posted the recipe the way I read it but did mention I substituted water for milk and egg replacer for egg. The notes on the bottom are not mine, but came with the recipe. I agree that the rolls were REALLY sweet and I only used 2/3 cup as recommended. The dough is REALLY soft, but you're not making a mistake. Enjoy! Cinnamon Rolls

Serves 8 or 9

INGREDIENTS
2 tablespoons shortening or butter (I used our dairy free margarine.)
1/4 cup sugar
2/3 cup of milk, room temperature (I used water.)
1 packet yeast
1 egg (I used egg replacer)
1/4 cup canola oil
1/2 cup potato starch
1 cup corn starch
1/4 teaspoon baking soda
2 1/2 teaspoons xantham gum
2 teaspoons baking powder
1/2 teaspoon salt
1 teaspoon vanilla extract

TO SPRINKLE ON BOARD COVERED WITH PLASTIC WRAP
1 - 2 tablespoons sugar

FILLING (*see Ellen's note at end of post)
1 cup brown sugar
1 1/4 teaspoons cinnamon
1/3 cup chopped nuts - optional

GLAZE¾ cup powdered or confectionery sugar
1 teaspoon vanilla extract
milk to thicken (I used water)

DIRECTIONS
Preheat oven to 375 degrees. In medium bowl, combine shortening (or margarine) and sugar. Mix well. Measure warm milk (or water) and add yeast to milk (or water). Whisk well to fully dissolve (**see Ellen’s note). Add milk/yeast to sugar mixture. Add remaining ingredients. Mix very well, being sure to remove all lumps. Dough will be quite soft (***see Ellen’s note).Take a piece of plastic wrap and lay it out so it covers a 13 1/2" x 13 1/2" square. Sprinkle sugar on the wrap. Lay ball of dough on top of that. Then pull out another sheet of wrap and gently lay over the dough. Pat the dough down into a roughly squarish pancake. Lift the top wrap up and then reposition it. Use a rolling pin to roll out the dough in between the two layers of wrap. Occasionally you'll have to lift and reposition the wrap because it gets "stuck" under the edges. You might have to occasionally flip the whole thing over. Make sure that when you're done you've got ABOUT a 13 1/2" x 13 1/2" square of dough.Remove top piece of wrap. Combine filling ingredients. Spread evenly across dough's surface. (Original recipe poster suggested leaving about a 1 1/2" sugar free edge because when you roll the dough all the sugar shifts and fills this in; otherwise all the sugar spills out).Use the bottom piece of wrap to lift the edge of the dough and start to roll it up forming a long cylinder. Start with the sugary edge, which will be the center of your roll and roll toward the sugarless edge. Cut off or trim up the irregular ends of your "log". Then cut into 8 or 9 slices of similar size, about 1 1/2" wide. Place rolls into a greased round glass pie pan.Bake approximately 20 minutes, until tops are lightly browned.Combine powdered sugar, vanilla, and milk to make glaze. The amount of milk you use will depend on how thick you want the glaze to be. Stir until all lumps are dissolved. Drizzle over warm rolls if desired.

Notes:*I thought the rolls were a bit too sweet, so the next time I make them I will cut the amount of filling ingredients to about 2/3 of what the recipe calls for.**It seems odd that the recipe doesn't call for proofing the yeast. I decided to cover the milk and yeast mixture with plastic wrap and allow it to at least begin proofing.***The mixture is very, very soft - I was convinced that I'd made a mistake, but it ended up being fine.

Thursday, February 25, 2010

Flour Substitution

Finally I have found a flour substitution for all of my recipes! Hooray for me! I just stumbled upon it tonight. It's safe for both boys too. Just wanted to post it before I forgot.

All Purpose GF Flour Mix
1 cup brown rice flour
1 1/4 cup white rice flour
1/4 cup potato starch
2/3 cup tapioca starch
3/4 cup sweet rice flour
1/3 cup cornstarch
2 tsp xantham gum

Now I just have to find a place that sells sweet rice flour around here!

There are plenty more posts to come as soon as I get a chance to sit down for a while.

For now here's a new recipe I stumbled across.

Gluten Free, Dairy Free Waffles
1 cup gluten free flour mix*
1 tsp baking powder
1 tsp sugar
1 cup milk (can sub 1/2 cup apple juice & 1/2 cup water for milk)
1 egg (can omit by increasing baking powder to 2 tsp & decreasing milk to 3/4 cup)
1 tbsp vegetable oil
2 tsp vanilla
2 tbsp club soda
Heat waffle iron. Mix flour, baking powder and sugar in bowl. Add milk gradually and stir to mix. Add egg, oil and vanilla. Beat or whisk until smooth. Add club soda. Whisk for one minute. Pour 1/2 cup batter into waffle iron. Cook according to manufacturers directions. Serve immediately with syrup, preserves, etc.

Have fun!

Sunday, February 21, 2010

and the winner is...

Jennifer Marie Campos!!! Congratulations!!!

Friday, February 12, 2010

Eileen


Eileen is the name of Adam's nurse today at the hospital. She was Adam's nurse for BOTH visits today. I will forever love this nurse. Adam loved her too. If not for her, our day would have been MUCH more difficult. Thank you Eileen! (Not that she'll ever read this but still.)
Adam had surgery this morning. It was a routine surgery. Finally after being scheduled three times Adam is now circumcised. Owen had been circumcised at birth, only to require a second circumcision because the doctor messed up the first one. We decided not to have Adam circumcised because of this. Then, it turns out it was medically necessary because of problems with the foreskin.
Adam and I arrived at the hospital at 7:30 AM. We met with a couple of nurses. This was the first time I realized that Adam knew where he was and was NOT happy about it. He was not compliant AT ALL when nurses tried to get his heart rate, blood pressure, and temperature. I think all this medical stuff is finally getting to him. After the two nurses left the anaesthesiologist came in to see us, asking questions and prepping us for what was about to happen. Due to Adam's allergies the doctors decided not to use a medication they normally give patients to help knock them out. It has dyes in it. Instead it was just the gas mask. The anaesthesiologist also mentioned that they would tube him, which I hadn't expected, just to make sure his airways stayed clear.
The procedure was to begin at 8:30 AM. I walked Adam to the doors of the surgical room and handed him over to another nurse. Eileen was there, but she wasn't the main nurse. At about 10 AM they brought Adam back to his room. This time Eileen was with him. She had held him when he woke up. She brought comfort when he was missing his Mommy, and LOVED him to pieces. When I was battling another nurse to have his IV taken out, she was my advocate.
Adam had nothing to eat or drink since 8 PM the night before. No formula was allowed after midnight. No water was allowed after 4:30 AM. Jason and I woke Adam up at 4:25 for one last bottle of water knowing he would wake up within the hour for his usual bottle. Of course he refused the water and also refused to go back to sleep. We took turns staying up with him until it was time to leave for the hospital.
Needless to say he was extremely hungry and thirsty when he came out of recovery. He downed 2 bottles of Elecare in 3 minutes flat. Then he fell fast asleep again in my lap. It was there I noticed that the hand without the IV in it had 4 needle pricks. It wasn't until the fifth try that they were actually able to find a vein to use for his IV. I am so grateful he was asleep when they did that. Then I noticed a little bruising on Adam's neck. It almost looked like a scratch that didn't bleed on the surface, but underneath. I asked Eileen about it. The anaesthesiologist looked at it. It was documented.
Eileen played with Adam as we walked the halls waiting for discharge. She held him while I went to get the car and gave him a kiss when we left. Our experience in the hospital was very pleasant that morning. Especially as Adam decided right after having surgery, he wanted to walk the halls. Still groggy Eileen and I each held a hand as he walked the halls and said hello to everyone. When Adam had gained more strength he decided to break free from us and run to every exit door he had seen open during the course of our stay, trying to escape. It was quite adorable.
Adam and I arrived at home about 11:30 AM. He took another bottle, ate some Trix, said hello to Owen and was ready for a nap by noon. Owen and I took a nap too. At about 3 PM Owen woke up. Adam was still asleep. This is very abnormal for him. He continued to sleep until 5 PM when I woke him up for dinner. As I woke him up I noticed his eyes were VERY puffy and swelled up along with his lips. Honestly his whole face looked quite odd, but I just attributed it to the fact that he just woke up.
Adam ate four helpings at dinner and covered himself in goulash. At about 5:30 Jason took off his shirt and pants to put in the wash. That's when we saw everything. There were welts all over Adam's stomach, chest, and back. The outline of the stickers that were used to monitor his heart rate during the surgery were bright red. Adam had broken out in HIVES!
Immediately I told Jason to get the Benadryl. His face still swollen I realized it was all allergic reactions. Time to call the doctor, but which one? His surgeon? His urologist? His pediatrician? I decided to call our pediatrician's office. Thank goodness I was able to speak directly with him.
Stating that we had already given Adam Benadryl, I asked if there as anything else we could do. He explained that would be fine unless his symptoms got to a certain point and then he would need to be taken to the ER, (He had only been told Adam was having an allergic reaction.). I asked him what point that would be. He asked for me to describe his symptoms. Immediately he said to take him in.
I called our neighbors to take Owen. Thankfully they were home and were most gracious to watch him. Jason came with me, which was heavenly. I had already spent 4 hours in the hospital with Adam today alone and 15 hours last month in the ER alone with Baby O. Going it alone was not going to be cool in the least bit. It was a good thing he came too because it took both of us to manage Adam while waiting for the doctor. Adam was NOT pleased to be back at the hospital, in a hospital gown, and stuck in a little room.
By the time we reached the hospital the swelling in Adam's face had gone down thanks to the Benadryl. The welts had also diminished a little bit. We were seen by a nurse immediately and then taken straight to a room. Another nurse came in to take vitals, which Adam didn't like very much at all. It was then that I realized somehow the Vaseline and antibiotics I needed for Adam at every diaper change didn't make it into the bag. I asked the nurse if I could have some Vaseline. His response, "We don't carry that down here." WHAT? I told Jason I was going to the nurse's station to ask someone else. After all I knew most of the nurses from when Baby O was in the ER last month. That was when I saw her. It was Eileen.
She was on duty in the ER tonight. Eileen was a little shocked to see me. I explained what happened and she immediately wanted to see Adam. He was actually pretty excited to see her, as excited as he could be to see anyone. She looked at his face, swollen, red, and blotchy. She looked at his chest, stomach, and back noticing the welts and redness. To her it was all quite unbelievable. She KNEW he hadn't looked like that when he left the hospital this morning. Immediately she gave us Vaseline for Adam. We were wondering if we could give Adam a bottle, since it was that time. She went and asked the head nurse and then checked to see how long the wait for the doctor was. Eileen checked in almost every 5 minutes before the doctor came. To know she had been with us this morning and now again tonight brought SO much comfort to me. Comfort that I wasn't going crazy. Comfort that someone else had witnessed everything that had gone on through the course of the day. Comfort in knowing Adam would receive the best care because someone cared.
The doctor came in and asked for a medical background on Adam. I'm learning I need to keep a list of all the medical procedures and dates they were done with me at all times, along with a list of the foods Adam's not allergic to. It's easier to recite those. He looked at Jason and I in disbelief. Then he examined Adam. As he looked at Adam's chest, stomach, and back, he was shocked. He had never seen such a reaction from stickers before. Openly he admitted he wasn't sure what to do. Steroids were an option, the only option, but he wasn't ready to give them. He complimented us as parents, amazed that Adam looks so great despite such a messed up immune system. We made the right decision by giving him Benadryl. Things could have gotten much worse very quickly. The doctor wanted to discuss the case with Adam's pediatrician before deciding on a course of action.
He returned shortly. It was decided that it was for sure the stickers causing the reaction. But, to determine what's in the stickers that specifically caused the reaction... We have to call the manufacturer. The doctor explained that most reactions of this magnitude are caused by ingestion of the substance, not the touch. To react so drastically to the touch means the allergy is very severe. After talking to the pediatrician it was decided that steroid treatment would be held off. They're so hesitant about treating Adam's reactions with steroids. If he blisters or his reaction does not improve or gets worse in the next 24 hours we are to return to the ER. We're all hoping it doesn't. For now he is being treated with very strong cortisone ointment and a high dose of Benadryl every 4-6 hours.
The doctor wished us good luck, complimented us again, and then shook his head in disbelief at Adam's reaction. Eileen returned to the room shortly after. She asked about everything. When we mentioned needing to know the exact equipment used on Adam and the manufacturer she promptly went and retrieved everything, including the package with bar code etc... I honestly don't know what we would have done without Eileen there tonight. She said her goodbyes to us and to Adam who smiled at her.
After only 3 hours we returned home, relieved, exhausted, and a little shaken. What will cause Adam to have an allergic reaction next? His food allergies are bad, but we've never had to take him to the ER over them before. Tonight we've gained more experience, a little more paranoia, and also confidence in ourselves as parents. We did do the right thing in the very beginning when things really mattered. That made all the difference.
This definitely wasn't a fun situation, but it could have been much worse! Honestly a nurse named Eileen made all the difference.

Wednesday, February 10, 2010

A Recipe Challenge

Want to win a $25 gift card to your favorite grocery store or restaurant? Click HERE to find out how! Please participate! I really need your help!

Monday, February 8, 2010

Fun Times

On Saturday night we had a special movie night. I totally stole this idea from a friend of mine, but it was a good idea.One of my favorite children's books is Cloudy With A Chance Of Meatballs. Just recently they turned it into a movie. It is now on DVD. The boys hadn't been introduced to the book because it was all about food...food they can't eat. BUT, my friend mentioned that one of the main characters in the movie has an allergy to peanuts and actually goes into anaphalactic shock during the movie. As soon as I read about this I just HAD to see it. Would this be a chance to teach the boys about their allergies? Maybe!Jason and I watched the movie on Friday night to make sure it was okay. By far I like the book better, but the movie wasn't bad. We were nervous about Owen getting a little scared at parts and not really understanding a lot of it, but in the end decided to move forward with our plans.To kick off the movie event we had a spaghetti dinner. This was a HUGE deal because it was Adam's first time trying tomato. Adam loves angel hair pasta. Of course it has to be organic, and he won't eat the whole wheat kind, but we're just excited that he's eating pasta at all. Prego Traditional Spaghetti Sauce is 100% all natural and safe for Adam to eat. Instead of ground beef we used all natural ground turkey seasoned with rosemary. I wasn't sure if Adam would eat the ground turkey, just because he's tried it plain before and didn't like it but on this occasion...He LOVED everything! And the best news of all... NO ALLERGIC REACTIONS!!! Tomatoes are a go!
We are so excited to be able to add tomatoes to Adam's safe food list. It opens up so many possibilities. Last week Adam tried black beans. He loved them and NO ALLERGIC REACTIONS!!! Not every food we've introduced lately has gone over this well. Garbanzo beans are definitely out. With the addition black beans and tomatoes to Adam's diet it appears that we'll be having lots of Italian dishes without cheese and Mexican dishes without cumin and cheese. We're excited!Owen refused the Spaghetti dinner of course and ate his usual chicken nuggets, but wanted Mommy to take a picture of him too, just like Adam, so I did. He even smiled for me!After our spaghetti dinner I popped popcorn and we put in the movie. It was so much fun watching it together as a family.Adam dumped his popcorn all over the living room and then was sure to step on it all and even crumble it with his hands. Owen sat in his seat the whole time and watched the movie. He did get a little scared at some parts. Watching a movie about food was an eye opener. I realized that Owen doesn't even know what a cheese burger is. That was just the beginning. He did understand the concept that too much sweets will make you sick (like one of the characters), and when it came to the character with a peanut allergies he exclaimed, "Peanut butter doesn't make me sick Mommy!" He's right. It doesn't. So we talked about the foods that do. Owen definitely doesn't understand his allergies yet, but he's starting to grasp bits and pieces of the concept. I'm excited! Awareness is everything for him!
As far as Adam is concerned... We've have three consecutive nights of Adam eating what Jason and I eat or some variation of it. The first night was spaghetti, the second night allergy friendly pancakes, and then tonight he had kidney bean casserole without the cheese and broccoli. I couldn't be happier! (The kidney beans unfortunately didn't work out. There was an allergic reaction.) Still every success means everything!