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.