Anaphylaxis

When we decided to seek OI therapy for B, we knew that there were risks involved.  We knew that there was a possibility of minor reactions as well as a risk for severe reactions, including anaphylaxis.  We have followed the protocols recommended by her allergists, as well as protocols recommended by other OIT moms, to minimize this risk... but sometimes there are accidents and sometimes there are unexplained reactions.  After all, these children in OI therapy are consuming their allergens, which are like poison to their body.

B had an anaphylactic reaction to her OIT maintenance dose on Saturday evening, 1/3/15.  We had to use the epi pen on her and admit her to the ER.  It was very scary and very unexpected.  I gave her the dose of peanut at her regular dosing time, 4pm.  About 1 hour after she took her dose, she began coughing like she was trying to clear her throat, scratching her chin and asking for water.  A minute later she was scratching at her entire body (at which point we did not see anything visible on her body).  Another 2 minutes later, she began having trouble breathing (wheezing) and started developing pinpoint hives on her trunk.

At this point, I knew that she needed her epinephrine.  I got it out of the emergency kit container that we keep it in, and told my husband that we needed to inject her.  My daughter freaked out, and my husband was in denial.  He said, "let's give her Benedryl.  She doesn't need the epi pen, her tongue isn't swelling."  My husband gave her a teaspoon of Benedryl and I continued to tearfully explain why she needed to be injected with epinephrine.  I pointed out her labored wheezing and explained to him that her airways were closing.  His response was to give her another teaspoon of Benedryl and wait for it to kick in.  I was basically pleading with him and trying to make him understand that she needed it.  I should have just given it to her.

While my husband and I were arguing about the necessity of using the epi pen, B was saying that her tummy hurt.  I explained to my husband that she now had 3 bodily symptoms that were affected and that she was experiencing anaphylaxis.

1. Pulmonary: Her breathing was labored and she was wheezing, I have never in my life heard her breathe like that, her nasal passages were also compromised (stuffy)
2. Integumentary: She had hives developing all over her skin on the trunk of her body
3. Gastrointestinal: She complained of tummy pain

I reminded him of Natalie Giorgi, the young girl who had no outward symptoms, who felt fine, and who passed away 20 minutes after spitting out her single bite of cross-contaminated rice crispy treat.  I explained that our daughter didn't need to have visible tongue swelling to be in anaphylaxis.  Her difficulty in breathing alone, warranted use of the epi pen... not to mention that she had more than 1 body system affected.  Meanwhile, a fourth body system was beginning to be affected;

      

      4.  Edema:  The last thing I noticed before I forced my child onto the floor and injected her was that she was just beginning to have minor swelling in her eyelids and lips.  
The epinephrine began working instantly and B stopped crying. She puckered up her sweet little lips and kissed me to let me know she was okay, as I called 911.

Everything that happened, from the first little throat clearing cough to the injection, all felt like it happened within 5 minutes, my husband thinks it was more like 20 minutes.  My sister-in-law who was there visiting thinks it was less than 20 minutes.  We don't know for sure how long it really was, but I do know that we took too long, and we hesitated.  Natalie's parents observed her for 20 minutes before they decided to inject her.  By then it was too late for sweet Natalie. 

I thank God now, and every minute since it happened, that we still have our precious child.  We made many mistakes that night, which I will list out, in hopes that it might help someone in the future should they experience the same events.

My mistakes;

1. I should have injected my child the very minute I knew she needed it.  Instead I pleaded with my husband and wasted precious minutes trying to explain the necessity of it.  Maybe subconsciously I was trying to convince myself that she needed it, or maybe I felt like I needed agreement from my husband.  I don't really know for sure.  I do know that I wasted time not giving it to her.  I hesitated.  
2. I haven't educated my husband enough.  He should be as well prepared as I think I am.  Ironically, my daughter and I practiced using the epi pen trainer just a few days before this all happened.  I'm not sure why, but we never included my husband in the practice.  I read and research all things food allergy related on a consistent basis, but I never relay the info to my husband.  I read about other people's mistakes and try to learn from them... but I have never bothered to make sure my husband knows what I know.
3. I watched my husband give Benedryl to B and never verified that he was giving her the correct dosage.  I give him credit for having enough fortitude to get it out and try to find the correct dosage, but I didn't verify that it was the dose she needed.  He gave her 1 tsp, then gave her 1 tsp more about 5 minutes later.  According to the dosage chart, she needed to have 2 tsp to begin with and could have consumed another 2 tsp as an emergency dose... although epi pen should have been given immediately upon hearing her labored breathing. 

My husbands mistakes;

1. He waited to long to listen to me.  At the time we injected her, he was on board with giving it to her. He could see visible symptoms (hives and minor swelling in her eyelids and lips) and that was what he needed to see, to affirm to himself, that she needed her epi pen.
2. He mistakenly believed that Benedryl was all she needed.  I made sure that he now knows that any time her breathing is compromised, that she needs to be injected.
3. He didn't know that epi is indicated if more than 1 body system is affected.  I explained it to him over and over again as it was happening, but until he could see the swelling... he was hesitant.
4. He was scared to inject her.  He was worried about what side effects the epinephrine would have on her, because prior to this event, we have never had to use it before.  He was scared that we would have to start OIT therapy all over again, from the beginning, if she were to have anaphylaxis and therefor he would not let his mind accept that she was indeed experiencing anaphylaxis.  None of that should have been considered.  It doesn't matter if she has to start over.  It doesn't matter that she had never used it before.  It didn't even matter if there were to be negative side effects from the medication. The fact is that it is a life saving emergency medication, and she needed it.  
5. He hasn't educated himself enough.  I wrote that my #2 mistake is that that I haven't educated him as much as I have educated myself, and I do take some responsibility for helping him learn... but ultimately  he is responsible for himself and his own learning. He has a child with a life threatening disability and if I died today, he would need to know everything that I think I know and be as prepared as I think I am.

After our first time ever using the epinephrine injector (we used the Auvi-Q), I can now say with 100% certainty that B (an 8 year old) would not be able to inject herself with her auvi Q epinephrine injector if she were ever to need it.  I can also say with 100% certainty that it is better if 2 people are there when she is injected.  I had to hold her legs still and inject her, while my husband had to hold the upper half of her body.  She was flailing around because she was terrified of the shot, and she had incredible strength.  It would have been incredibly difficult for me to inject her on my own, but I have a plan for if that day ever comes.  I would have to pin her arms and trunk with my legs while simultaneously handling her legs and injecting her.  Squatting on top of her if it were. 

I can't say enough for the Auvi Q injector.  The automated voice telling me what to do and counting down for me was a blessing to our efforts.  I can't imagine using the epi pen device that requires the user to hold the needle in the patients leg for an entire 10 seconds.  Holding the device on her legs for the required 5 seconds would have been impossible without first immobilizing her.  It was very scary.  Holding a needle in her leg for 10 seconds, without damaging her skin, would have been nearly impossible.  That is how needle gash injuries like this occur.

As for her therapy, we are taking it day by day. The anaphylaxis happened on Saturday.  B's doctor was out of town, but thankfully answered his phone when I called him from the ER.  We still have to determine the best course to follow for her OIT.  I'm still unclear if this will be detrimental to her therapy.  Her doctor instructed us to skip her dose on Sunday and give her 1/3rd of her normal dose on Monday.  Today is Monday, so we shall see how it goes.  Her doctor will be back in town and will see her tomorrow.  He will be deciding how much peanut to give and will administer it in his office in the hospital.   B has made 18 months of progress during this therapy  But, we aren't really sure just yet, what effect the anaphylaxis will have going forward with OIT.

As for WHY it happened, we have been racking our brains and trying to figure out why she reacted to her dose after all this time.  She has been consuming the same amount every day for the last 4 months.  There are 7 possibilities that we can think of, that may have contributed to sending B into anaphylaxis.

1. After she consumes her dose, she is supposed to be inactive for a period of 2 hours.  B was following that protocol when she reacted.  She was sitting on the couch watching a movie with her cousin.  Neither of the doctors we have had as providers has ever said anything about the period of time before we give her the dose.  Just before her dose, she was running around and playing very hard.  She did have a period of about 10 minutes before she ate her peanut to calm down... but maybe it wasn't enough. While on her dose she is not allowed to elevate her heart rate or her body temperature, as this increases the risk for anaphylaxis.  But, just before her dose I'm sure her heart rate was up and she was probably hot from running around.  My friend, Anna, who's son has already completed OIT for peanut has told me that her doctor in MI has her keep her son still for 30 minutes prior to dosing.  We will be following that protocol going forward.
2. She may not have had enough carbs in her belly.  Neither of her doctors has ever instructed us on feeding her before her dose, but it is well known and circulated among the other moms who have children in OIT, that they do better when they have a belly full of carbs before they consume their dose.  I had given B a small bowl full of pretzels and cream cheese dip.  My hubby thinks maybe the pretzels were not hearty enough.
3. Normally, B will drink a glass of water to wash her dose down.  This day, she said she had forgotten to drink any of her water.  I should have monitored that, but I got distracted.  She normally does good remembering to drink her water on her own... but she was distracted too.
4. B is class 4 allergic to cat dander. Class 4 is pretty high. We learned, after the fact, that the family members that were visiting us that day, have an indoor cat.  If they had cat dander on their clothes and sleep-over belongings, then B would have been exposed to it.  That means her immune system was already being challenged when I gave her the peanut dose.
5. Anna brought up the fact that maybe her immune system is compromised by a virus right now.  She is not displaying any signs of illness, but if she has a virus that her body is trying to fight off, it would compromise her immune system and increase the risk of anaphylaxis.  As each day goes by, the likelihood of this thought goes down.  She still isn't displaying any signs of an illness, so this scenario is unlikely.
6. She normally takes probiotics on a daily basis.  We ran out of them a few days ago, and she hasn't had them since.  The probiotics help her maintain a good level of healthy bacteria in her gut.
7. My husband wonders if her chronic battle against constipation has anything to do with her reaction.  He is wondering if the peanut protein is staying in her gut for a prolonged time, because she isn't efficiently evacuating.

In the end, we may never know why she reacted on this day, out of all the days she has been on the therapy.  We are better prepared now, for an emergency (having actually experienced it).  I just wanted to share the sequence of events with all of you, God forbid you are ever in this situation.  It all began with a persistent little throat clearing cough.