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.