Figuring it out

I realize that, not too long ago, I wrote that I probably wouldn't be writing any more blog entries... and since then I've written 3 entries within the last week.  I've found that writing these entries serves as a wonderful way to keep records of what is going on with my little girl. 

Since Thanksgiving, B has had 3 reactions.  Prior to these three events, she only had little hiccups in her treatment.  These last 3 reactions have been significant reactions. The first of the three, I never blogged about,but this is what happened;

"11/30/14 At around 1AM my daughter woke me up calling for me. As I entered her room, she was standing in the middle of it scratching herself all over. I found her covered in head to toe hives. She said her tummy hurt and that her throat was scratchy. We have no idea what caused her to react in the middle of the night. She is in her 3rd month of maintenance for peanut, and she has been doing fine with it. She had taken her daily dose at 5:30 and gone to bed at 8pm. She had observed her 2 hours rest time post dosing, but she may have gotten her heart rate up a little bit b/c she raced up the stairs at 7:30. She had nothing new to eat that day. I am baffled. I don't know if racing up the stairs at 7:30 caused her to break out in hives 5 and a half hours later? I don't know if the people we had over that day may have tracked something in with them? The timing of the reaction was just weird. We called her allergist who, thankfully, answered the phone at 1am. I was "this close" to giving her the epi but b/c she was NOT having trouble breathing and her heart rate was within normal limits we gave benedryl. The tummy pain was very scary for me. I just kept thinking about Natalie Giorgi and all the kids who have no outward symptoms but are reacting on the inside. I stayed up for 2 hours watching her and then slept right next to her for the rest of the night. I am so thankful she is okay, but I am also so puzzled about what happened to her."

I was puzzled, but I'm starting to make the connections.  WE know for sure that B is reacting to her OIT maintenance dose because some environmental allergen is "filling up her immune system bucket" and her daily dose is causing her bucket to overflow.  The question is, what is filling up her bucket?  This is what we know for sure;

• B has seasonal allergies to some trees and some grasses.
• She also has environmental allergies to cat dander, dog dander, and one type of mold.
• She has anaphylactic food allergies to several tree nuts as well as peanuts.

Of all of these allergens, I think it is safe to cross food allergies off the list. She has not eaten any new foods.  Unless the food we are giving her has been processed differently than the way they were before, it is not food allergens that are filling up her bucket.  She is eating peanut, which is a carefully pre-measured dose, and she is obviously still allergic to it... but her body has been trained to be able to tolerate the amount we have taken a year to work up to, and we do not give her even a single smidgen more.  This is the whole purpose of OIT.

That leaves environmental and seasonal allergies as possible bucket-filling-culprits.  So, in looking at her three significant reactions one by one, we can better determine which it is.  Let's first consider seasonal allergens;

1. November 30, 2015- B broke out in hives at 1:00 in the morning. It was cold on the 29th.  I am not sure if there were any trees or grasses releasing pollen, but it's highly unlikely since this is not the growing season.  So, we can safely assume that seasonal allergens did not play a part in that reaction.
2. January 3, 2015-The day that B went into anaphylaxis it was cold, and rainy and we had been inside all day.  Considering the weather, it is safe to cross off seasonal allergens as a culprit.  There was nothing growing or blooming and if there were, the rain would have washed it all away.
3. January 8, 2015- B broke out in hives 2 hours after her dose. Again, it was a cold wintry day... the coldest day of the year, and highly unlikely that she were exposed to any seasonal allergens. In fact, the map on allergy.com stated that there were no seasonal allergens in the air that day.

Second we will consider environmental allergens;

1. November 30, 2014- B broke out in hives in the middle of the night, but during the day I had done Santa photography sessions in my home.  My father-in-law, who plays the part of Santa, has an indoor cat and an indoor dog.  It is likely that he had animal dander on his clothing when he came over.  Of the 6 families that I photographed and questioned, three have confirmed having indoor dogs, one has said she has and indoor dog and an indoor cat and one has said she has no indoor animals.
2. January 3, 2015- B had anaphylaxis one hour after taking her dose. During that day and the night before, B had a friend (L) over for a sleepover.  L has an indoor/outdoor cat.  L's mom confirmed that the cat sleeps in L's room, so it is safe to assume that L's sleepover belongings and clothing all had cat dander on them.  After L went home Saturday morning, my husband's sister and niece came to visit and sleep over.  They also have an indoor cat, and most likely had cat dander on their sleepover belongings and clothing.
3. January 8, 2015- B had been sent to the nurse while at school b/c she had been complaining about itchy legs. The nurse did not see any hives or rashes, applied cortisone cream and sent her back to class.  She attributed the itchiness to the fact that B had tights on under her jeans. That same day, B broke out in hives 2 hours after her dose.  Upon asking B what she was doing when her legs began itching, she stated that she had been working in partners with L (the same friend who came to sleep over and who most likely had cat dander on her clothing).  I'm sure that of all the 20+ children in the class, there are probably more children who have indoor pets. The teacher has told me that she also has an indoor cat.

It has made me feel a little bit better to be able to get to the bottom of the "why"... now we need to figure out what we can do to help B's body deal with these environmental allergens so that she can continue to take her daily dose of peanut without reacting to it.  This probably means we will have to start avoiding people's homes who have indoor pets, and it definitely means that we will have to start B on a daily dose of citirizine (Zyrtec), to help her body deal with the exposures to allergens that we cannot prevent (like at school).  

Upon her OIT doctor's request, we are going to do more bloodwork, and B has an appointment on Monday for a draw.  Hopefully the results of the labwork will help B's doctor get a better understanding of what is going on and give him some ideas on how we can help her.  She simply cannot keep having reactions to her dose.  

Update

Just when I think I know it all (or most of it) and just when I feel like I've got the hang of it... this allergy life hands me another lemon, but we all learn and grow from it.  After B's anaphylactic ordeal last weekend, we've grown to understand how we can keep her even more safe. For that, I am thankful.

We have come to the conclusion that we may never know what caused B to react to her daily peanut dose, a dose she had been consuming for the last 4 months and doing fine with... but we realize that there were several very likely culprits and that all of them came together to create the perfect storm.  B's OIT doctor explained her situation as being like a "bucket."  When she reacted, it was because her bucket had reached it's capacity. We know that B's immune system was already being challenged when I gave her the dose that sent her into anaphylaxis.

B has a class 4 allergy to cat dander, which is pretty high.  Even though we do not have any pets, she was probably exposed to it because our in-laws who were visiting have an indoor cat (which we did not know prior to their arrival).  Cat dander may have been on their clothes and sleep-over belongings and tracked into our house.  This combined with the pre-dose high physical activity, lack of water and not enough food before her dose sent her over the top.

So, what we have learned from all of this and what we will be doing differently from now on is;

1. Zyrtec;  Anytime we have visitors who have pets or anytime we visit anyone else's home that has pets, we will be sure to dose B with Zyrtec before she comes into contact with them.
2. Water; I am pretty sure that from now on, both B and I will be sure that she has at least 4-6 oz of water to swish and wash down her dose with.  Neither of us will allow distractions to prevent her from drinking water after her dose.
3. Meals; we are going to re-train our brains concerning meal times.  B takes her maintenance dose right after school.  From now on, she will have a full meal before her dose (not a snack) and we will make dinner our lightest meal of the day.
4. Rest periods;  We are going to observe the "no physical activity for 30 minutes prior to the dose" rule.  We'd never been told that before, but some of the OIT docs have that included in their protocol, and so we will include it in ours as a precaution.

The day after she experienced anapylaxis (Sunday), B skipped her dose. On Monday, she had 1/3rd of her normal dose and did very well.  No complications.  On Tuesday, her OIT doc was back in town and we went to his office to dose her.  We all decided that her dose could be lowered from 4.5grams to 4grams.  She ate her 4 grams and had no complications at all.  She will remain on 4g of peanut for the next month or so and then will return to 4.5grams.

We thank all of you for your prayers and well wishes for B.  I am so happy that she will be able to continue on this journey to being free from her peanut allergy.  

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.