Cost of Epi Pens

Mylan has been in the news lately for the skyrocketing costs of epi pens.  An epi pen set now costs over $600.

One thing I haven't heard people talk about yet is the amount of epi pens a typical family needs. Folks may assume a child only needs just one set of epi pens.   This is not the case.  In my home, in order to ensure Owen's safety, we purchase 5 sets of epi pens each year.  Here is why:

1. One epi pen stays with Owen all the time in his backpack.
2. One epi pen is required to be locked up in the school nurses office
3. One epi pen is always in his purse.
4. One epi pen stays with this after school provider.
5. One epi pen stays at home at a specific location so we always know where it is.

5 epi pens = $3000 a year.   The medicine expires every year, so it must be replaced.  And sadly, there are times we need to use the epi pen, and pay for that replacement as well. 

Someone may think the amount of epi pens I have stored away is overkill.  But even with all this coverage, there are times that Owen is not near his epi pen... I know, I must go see the Bad Mom movie out in theaters. 

I hope drug companies, insurance companies, and the American people can come up with a reasonable solution to the costs of medicine.  

Rast Results 2014

2014 Results...

 

Milk 3.85

Egg  0.38

Peanut 2.82

Almond 8.59

Brazil nut negative

Hazelnut 2.49

Pecan 3.14

Cashew 5.13

Walnut 9.18

Pistachio 4.88

Dog  dander 8.59

Previously Scores....

peanut (12.54) was 19.35, 22.87, 13.32, 9.19, and 6.81
egg (2.02) was 7.33, 21.72, 11.7, 2.9, and 1.46
milk (20.67) was 33.2 in 02/11, 77.08 in 01/10, 20.52 in 01/09, 11.89 in 07/08 and 3.26 in 01/08
almond (0.38), was negative
barley (9.25), was 18.9
hazelnut (5.24), was 5.36
pecan (14.0), was 17.5
sesame (4.57), was 3.62
wheat (23.4), was 35.8
cashew (25.5), was 37.7
walnut (33.2), was 18.2
pistachio (17.9) was 37.8
and negative to crab, pea, shrimp , chick pea

'No Friends Allowed' Policy at the Nut-Free Table

I received a note from the school nurse today.  In the letter it states "Effective Monday, February 10, 2014 the "Peanut-Free" table will restrict to only those students with Peanut allergies. ... Please talk with your child regarding lunchtime and assure them that they will be able to socialize with all of his/her friends during recess."

I greatly appreciate the school's concern for safety.  The demand for nut-free tables has increased due to increasing food allergies as well as understanding friends who want to sit with their food allergic friends. These understanding friends and their parents go out of their way to pack appropriate lunches so they can sit with their friends.  I think it is fabulous that seats at the nut-free table are in high demand (really this is a dream come true!!!).  

This is an easy win for the school: increase the number of nut-free tables to more than one.  Nope.  Instead the school responded by stating that friends can't sit at the nut-free table.  Really?  Why are we creating policies that segregate kids from their safe friends?  

Here is my note to the school nurse:

My name is Joanna Cress and I am Owen’s mom.  He is in 1st grade in XXXXXXXX class.  This is in response to the letter you sent home regarding the nut-free table.

Owen is allergic to peanuts and tree nuts, however our doctor said it is safe for him to sit at his class table.  I greatly appreciate the placemat accommodation we have worked out with the school for the last two years and would request that Owen continue to sit with his classmates. The special placemat is a very effective alert to the lunch aids, reminding them to check the lunches of the children around Owen. His friends and the lunch aids are very familiar with this procedure.

While Owen will not be sitting at the allergy table, I do want to voice my concern regarding the new ‘no friends’ policy at the designated nut-free table.  As a lunch aid, I have observed how isolating the nut-free table can be. Of course I understand the nut-free table is required for some kids, but forcing those kids to separate from their nut-free friends highlights the allergy kids’ differences instead of uniting them with their peers. It’s an easy win to increase the number of nut-free tables, as clearly they are popular.  As a nut-allergy parent, I am keenly aware of the risk of nuts to allergic kids, and I am not advocating for an increase of risk to the nut-allergic children. I’m merely suggesting that the lunch aids continue to maintain the diligence and caution they have demonstrated for the last two years.

Lunch time is very important to children.  The friends they eat with are often different from the ones they play with. I think it is fabulous that seats at the nut-free table are in high demand.  I encourage the school to add more seats and tables to balance the nut and nut-free groups.  My hope is that the entire cafeteria would remain safe for all kids while being a place where both nut and nut-free kids have the option of being with their friends.

Thank you for the consideration.  I’d be happy to have a dialogue regarding my concerns.

Many thanks,

Joanna Cress

Never Hesitate To Use the Epipen

I've heard that you should never hesitate to use the epipen.  I've read stories from other parents who urge people never to hesitate and they said their kids would have been better off if they received the epipen sooner.  I knew it ... but I hesitated tonight... and I learned my lesson.

Owen was on day 2 of a small dose of peanut butter at home.  We gave him the peanut butter at 7:30.  Owen watched Star Wars for a bit with his dad.  At 8:15 it was time for bed, and he complained of itching (which is very common for Owen) so we gave him his nightly dose of Hydroxyzine.  Owen fell asleep without any incident.  Doug heard him coughing a continuous dry cough, which didn't sound right.  Doug went to check on Owen and he was sleeping and coughing and wheezing.  Doug picked him up and brought him into the bathroom and discovered hives all over his body and swelling in the face.

We gave Owen 3 teaspoons of Benadryl and drove to the hospital *which was my mistake*.   I gave Owen my phone to play Subway Surfers to distract him.  It seemed like the hives were improving, but he told me multiple times that he felt like he was dying.

When I arrived at the hospital they took him immediately into a room and gave him epinephrine and a steroid.  The ER staff was quick and amazing, and he looked much better in 25 minutes.   Once all the excitement was over, the doctor sat down with us and told us that we should have used the epipen, and Benadryl was not appropriate for his reaction.  I get it.  I promise.  I will never hesitate again. Sigh.  

Kicked Out of the Peanut Patch Study

Owen got 1 of 15 slots in a peanut patch research study at Johns Hopkins.  There are over 200 kids on the wait list, so we were truly grateful for the opportunity. 

The study starts with a food challenge.  There were 7 samples of peanut dust in chocolate pudding.  Each sample was an increased size.  I assumed that after eating the first sample, Owen would breakout in hives, he would get a dose of benadryl, and we'd call it a day.  Every 15 minutes Owen ate sample after sample.  I was in disbelief after Owen ate the 7th sample with only some minor swelling on his lips and complaints of some "tenderness" in his throat.  

In total Owen ate 2 peanuts over the course of 2 hours.   Dr. Woods told us that Owen was no longer eligible for the peanut patch study since he did not react to the food challenge.  He offered an additional peanut challenge, to see if he could tolerate more.   Owen was willing and I was excited.

They mixed together another sample, and Owen immediately fell apart.  He broke out in hives on his face, his eyes were inflamed, and he had pain in his throat.  We immediately called it a day.

The doctor said that since Owen shows a small amount of tolerance, we have the opportunity to try to maintain that tolerance and build it up over the next year.  It is important to be consistent.  He told us that Owen can tolerate 3/4 teaspoon of peanut butter each day for one month. After a month, contact his office, and they will give me guidance on what is next.    It is important to do the peanut butter when he is not exercising, since that impacts the immune system.

I was a bit nervous doing the food challenge at home, so I gave him 1/4 teaspoon instead.  I'll try a 1/2 teaspoon tomorrow.... maybe. 

I never imagined that Owen would show tolerance to peanuts at this point.  I'm am so thankful to God for how far Owen has come with his food allergies.  I know God is in control of all things, and today I am celebrating that Owen continues to get healthier each day. 

Chest Pain Just Before Bed

Someone brought to our house very yummy homemade smore brownies.  My friend said that none of the ingredients stated that it was made in a factory with any kind of nuts.  There was milk, but Owen is tolerating a tablespoon of ice cream a night.  Owen ate the brownie at 8 pm.  At 8:30, not knowing he already ate the brownie, Doug gave him a "healthy" tablespoon of Friendly's Mint Chocolate Chip Ice Cream.  He also got his nightly does of 1 teaspoon of Hydroxyzine.  At 8:45 he was upset stating he had a squeezing pain in his chest.  I asked when the pain started, and he said while he was in the basement (which is where he ate the brownie).  I gave him 1 teaspoon of benadryl, and he fell asleep at 9:15.  He was not in distress, but he continued to have pain.  There were not other symptoms.  I checked in with the on-call physician at Hopkins- I can't say how much I LOVE them- and she told me to keep an eye on him for the next hour, but it is most likely that he will not wake up and will be fine. 

I am so grateful for Hopkins that gives me great peace of mind.

Peanut Fight on The Bus

Today Owen celebrated his Grammy's birthday, and I thank God for the village of people who kept him safe today.

The middle schoolers had a peanut fight on the bus today.  One of the students told their parents about the incident.   That vigilant parent called Owen's school to make them aware that there could be peanuts all over the bus that the elementary school kids was about to get on.  The school nurse then investigated all the students on that bus, and flagged Owen since he had a nut allergy.  The nurse called me and asked me to pick him up.  I wasn't home, so they called my neighbor.

I am truly amazed at the vigilance that the student, parent, nurse, and neighbor had today.  I am so very thankful for their keeping Owen safe today. 

My biggest concerns:
1. Was the bus cleaned at the end of the day?
2. I know there is a video camera on the bus. How does the middle school plan on addressing a nut fight on the bus, and the possible danger it poses to kindergarteners who load on the bus 30 minutes later?
3. This is Owen's 3rd food incident on the bus.  None of the events were life threatening, but I am concerned if I am doing everything I should to keep him safe.  

Wheat Challenge

The wheat challenge was off to a shaky start. Owen complained about an itchy throat and mouth during the 1st 3 weeks. Tonight, Owen ate 2 oreos and a 1/4 slice of cake without any complaints. I am so excited. Thank you God for this tremendous progress!!!

RAST Results

The results are in! Owens' RAST scores are:

peanut (12.54) was 19.35, 22.87, 13.32, 9.19, and 6.81
egg (2.02) was 7.33, 21.72, 11.7, 2.9, and 1.46
milk (20.67) was 33.2 in 02/11, 77.08 in 01/10, 20.52 in 01/09, 11.89 in 07/08 and 3.26 in 01/08
almond (0.38), was negative
barley (9.25), was 18.9
hazelnut (5.24), was 5.36
pecan (14.0), was 17.5
sesame (4.57), was 3.62
wheat (23.4), was 35.8
cashew (25.5), was 37.7
walnut (33.2), was 18.2
pistachio (17.9) was 37.8
and negative to crab, pea, shrimp , chick pea

The wheat is heading in the right direction. We started a wheat challenge, but it is going much slower than I was hoping. 1/5 of an Oreo cookie will make his throat start to itch. We have had a couple of scary moments when he panicked because of a reaction to wheat. Benadryl has always wiped out all his symptoms, and it only takes 5 minutes for him to be 100% back to normal, but it is a bit scary.

The sesame is low enough that we can try that at home. The milk is low enough that we could try baked milk. But we will not pursue milk or sesame until the wheat challenge is complete.

The nuts are heading in the right direction (except for walnut), but the doctor said he won't feel comfortable until those numbers are about a 2. So we have time. But we don't mind. Getting wheat back is our only goal right now. Adding wheat to Owen's diet would be a huge improvement in his quality of life.

Out of Breath

I feel like Owen gets out of breath very easily. I did this video of Owen playing in the basement, because I feel like he was breathing hard while he was playing. It is very subtle, but it just seems like a bit more heavy than normal.

Here is a link to the video: http://www.youtube.com/watch?v=Zuea7mDLYfo

Last week, my babysitter gave Owen an inhaler twice because of slight shortness of breath and a dry cough.

Today, at the pool, Owen was holding hands with 2 girls, and jumping the in water. My babysitter said that Owen became short of breath, and was coughing a lot. She told him to take a break, but he was still coughing. He said his throat felt funny, and he must be allergic to the water. :) My babysitter asked the girl, who Owen was holding hands with, what she had just ate for lunch (because she had just finished eating), and the girl said she had a peanut butter and jelly sandwich. Because of everything that was happening, my babysitter gave Owen a drink, and then took the kids home, and Owen improved immediately.

Egg Trial - Day 3

In January, Owen's doctor told us that we start a baked egg trial. I made 2 dozen cookies using 1 egg. Therefore, 2 cookies equals 1 serving. Thursday evening I gave him a cookie just before bed time (which is a bad idea for many reasons.) He started complaining of nasal congestion, which isn't abnormal for bed time. Since it was at bedtime, I decided to give him Benadryl, just in case. Since we had a babysitter on Friday, I didn't give him any of the cookies. This morning I gave him one cookie. He was itching his head a bit, but it is normal for him in hot and humid weather. T wo hours later, I gave him another cookie without any incident. Woo hoo!

The cookies are from a recipe from The Allergen Free Baker's Handbook by Cybele Pascal. This cookbook is my favorite, because it avoids all the top allergens. A girl friend had a cookie, and she was very surprised when I told her it was Owen friendly. She couldn't believe how good it was.

Random Labored Breathing

Owen was quietly playing at the beach house. Everyone just sat down for dinner, but Owen had his dinner 30 minutes earlier. He started coughing and using his accessory muscles to take deep breaths of air. His respiratory rate was normal, and he had no other signs of distress. I gave him his inhaler, and symptoms resolved in a few minutes.

Asthma after a Nap

We were at Doug's parent's house in California. It was our 4th day there. Owen woke up from a nap, and asked for a drink. I was cooking a lasagna, so I washed my hands, and gave him some soy milk. Soon after I gave him the drink, he started coughing. The dry cough continued. I wanted to listen to his lungs, so I asked him to blow out my finger, and he couldn't. Since I haven't needed the inhaler in months, I didn't bring it on vacation (big mistake!) I called the doctor, and they called the prescription into the pharmacy. When we arrived at the pharmacy to pick up the prescription, Owen said "Mom, I'm breathing better", and he was. I gave him one dose of the inhaler. He hasn't had any breathing issues since that time.

I don't know what triggered the asthma. I am grateful to God that it hasn't happened again.

Anaphylaxis at the Airport on Christmas Eve

We were at the San Francisco Airport for a 3 hour lay over. We ate lunch at the food court. The table we sat at had some sesame seeds on it, and I used baby wipes to clean the table. Owen ate a Sunbutter and Jelly sandwich on King Arther bread, carrots, pretzels, apple slices, and Burger King french fries.

Owen finished his meal, and was full of energy. I wanted him to run around before we hopped on the next flight. So he and I had a 500 ft race. Owen ran the whole way without any trouble. He laid on the floor, and didn't want to stand up. He asked that I carry him, but I told him he had to walk (the point was to get his energy out.) He continued to lay on the floor, and didn't want to get up. I picked him up, and I realized was he was having trouble catching his breath, coughing, sweating, red, itchy, and one large hive on his cheek. I asked him if he was ok, and he said "I'm hoarse." Owen wanted to curl up, and he seemed stiff (I don't know how else to describe it). We gave him a teaspoon of benadryl, and he threw up. We gave him another teaspoon of benadryl, and called the airport paramedics.

The symptoms were epi pen worthy, but they were mild. In the end, our doctor said to stick to the emergency plan, and don't hesitate to give him the epi pen.

McDonald's Chicken Nuggets and Fries?!?!?!

Someone gave Owen McDonald's chicken nuggets (and removed the breading) and fries. The chicken nuggets have wheat, and the fries have milk and wheat. And Praise God, he had no reaction!!! Not even a hive!!! I can hardly believe it!!!!!

I emailed the doctor to ask him if we can try the McDonald's food again (this is very risky, and I would not have agreed to this). What a blessing it would be to be able to eat at McDonald's. I would not have to pack a lunch every time we are on the road. I am truly beyond excited!

And in other news, our bottle of Benadryl expires this month. I've had epi pens expire, but never a bottle of Benadryl. We went through large Costco sized bottles of Benadryl in the past. I can't believe we didn't finish a normal sized bottle. Owen has improved so much this past 6 months, and I am so excited to see him get better.

What a day!!!!!!!!

PF Chang's- My FAVORITE Restaurant

The thought of bringing Owen to a restaurant was completely off my radar. I would never trust some random chef to prepare my son a meal.

Tonight I went to PF Chang's with a girlfriend. The waitress' first question was if either of us had food allergies. I immediately thanked her, since I appreciate their attentiveness to this issue. The waitress proceeded to tell me about the special services they offer. I gave her a list of all of Owen's allergies, and she told me that she would print me out an Owen friendly menu. I was so excited to find out the results!

A few minutes later, the manager came to my table. Apologetically, he gave me the menu, and said that all he could offer was rice and steamed vegetables. I asked him about their preparation methods, to see if the staff truly understood the attentiveness it takes to make Owen a meal (you need to use a clean/uncontaminated surface, grill, utensils, etc.) I was very impressed. PF Chang's totally gets it!

I profusely thanked the manager. Even though the manager doesn't think steamed vegetables and rice was that great, it is tremendous that Owen could go to a restaurant, order from the menu (even if it is only one option) and know that he can get a safe meal. I'm so excited to bring Owen to this restaurant. I wish more places understood food allergies, like PF Chang's.

Ice Cream Cone! Bad Chinese Food

Owen had his first ice cream cone tonight!!! I am so grateful for Whole Foods for selling dairy-free ice cream, and gluten-free cones. So they lie about their organic foods. They gave my son the gift of enjoying ice cream the way it was meant to be enjoyed.

Owen refilled his cone 5 times, and then he was disappointed when the cone... broke. I explained to him that he is suppose to eat the cone. I love these basic life lessons.

I also love friends who make their birthday party Owen friendly. The kids table was filled with only Owen friendly food. I'm so blessed to have supportive friends.

We haven't ordered Chinese food in a long time. We ordered Kung Pao Chicken, and it was filled with nuts. I was so upset that I let nuts into my house. I could feel my stress level go from completely calm, to very stressed. I washed down the counters, chairs, and table. I washed my hands and mouth. We immediately threw away the packaging and took the garbage out of the house. Live and learn. In the end, things went perfectly fine.

Owen played with play doh this morning for 45 minutes, and he didn't have any reaction. Praise God!

"I don't really like Ice cream."

Today Owen and I were food shopping. I found some chocolate soy ice cream, and he was excited. A little bit later, we walked by chocolate soy milk. He begged to buy some. I told him he had to choose between the chocolate soy milk or the ice cream. Owen said "I want chocolate soy milk. I don't really like cream." The comment made me sad. Who doesn't love ice cream? I'm sad that soy ice cream is not as good as the real thing.

In the end, he has the healthiest diet in the world! I refer to his diet as the Daniel diet (from the book of Daniel in the Bible). I am so glad that Owen doesn't complain. I can't wait until he is older, and he can express his thoughts and feelings more. I wonder what is going inside his cute, little head.

Join Us For The Food Allergy Walk on October 2nd!

Please join us again as we walk for a food allergy cure. Please support Team Cress as we complete a 2 mile walk. There is no cost of join the team. Even if you can't make the walk, you can show your support by being a virtual walker (also free!)

Date: Saturday, October 2, 2010
Time: Check-in begins at 9:00 a.m.; Walk begins at 10:00 a.m.
Location: Meadowbrook Park, 5001 Meadowbrook Lane, Ellicott City, MD 21043
Distance: 2 miles

There is a great, big park and a moon bounce. And after the walk, join us at our house for chili bread bowls!

Join us by registering here:
http://www.foodallergywalk.org/site/PageServer?pagename=Home

1. Click "Sign Me Up."
2. Click "Maryland-Baltimore"
3. Click "Join A Team"
4. For Team Name, type in "Team Cress" and click "Search for a Team".
5. Click on "Team Cress"
6. Scroll down, and in the box that lists the team members names, click "Join Team".










More than 12 million Americans have a food allergy. That’s one in 25, or 4% of the population. Between 1997 and 2007, the prevalence of food allergies among children increased 18%, to reach 3 million U.S. children. Food allergies result in more than 300,000 ambulatory- care visits among children in the U.S. annually. Eight foods account for 90% of all food- allergic reactions in the U.S.: milk, eggs, peanuts, tree nuts (e.g., walnuts, almonds, cashews, pistachios, pecans), wheat, soy, fish, and shellfish. Owen is allergic to all of these items, except for fish and shell fish.
There is no cure for food allergy; strict avoidance of the food allergen is the only way to prevent a reaction.

Allergic Reaction- Good Reminder

I dropped Owen and Caroline at the neighbor's house, while I ran an errand. Owen and Caroline had a great time playing with the kids. When I picked Owen up, he was itching his face. When I got him in the car, I realized he had some hives on his face, and he was sneezing large amounts of snot. It was clear he was having an allergic reaction. Since it was the morning, I didn't want to give him Benadryl. I decided to give him Claritin instead, and he eventually improved. He didn't eat anything, so I don't know if it was an accidental food exposure or if it was an environmental allergy.

This reaction is a timely reminder to me of what a new environment can do to Owen. I am blessed to have a daily, steady routine.