We are the 15%

When we sought out OIT treatment for B's life threatening peanut allergy, we did so with the knowledge that it was 85% successful and 15% unsuccessful.  We had high hopes that this therapy would be the answer for us and we envisioned our child being able to freely eat peanut, as much peanut as she desired, once the therapy was completed.  We did not consider that the therapy might cause more complex issues, that would ultimately require us to give up on the treatment.

The original plan was to slowly up-dose for a year, from 3mg of peanut to 2400 mg of peanut.  The second year was supposed to consist of a daily dose of 2400 mg, and at the end of the second year- B was supposed to do a food challenge.  If she passed, she would be able to freely eat peanut and would be considered "desensitized."

As I've previously written, B began to experience problems early on in the first year, yet, neither my husband nor I realized that the issues were anything more than minor annoyances.  We also didn't realize that some of the bigger issues that B was experiencing were related to the OIT dose.  Our original OIT doctor used to answer "it's unrelated" for every issue we asked him about... when in reality, it was all related- we just never knew any better; and we were left to figure it out on our own.

B started OIT when she was 7 years old.  At first B would complain about a "feeling" in her throat immediately after consuming the dose.  She couldn't explain this "feeling."  It didn't hurt, or itch, or feel tight, or feel like anything was stuck- but it did cause her to panic a little.  She would flap her arms, stomp her foot on the ground and scrunch up her little face until she could effectively wash the dose down with water or apple juice, which would alleviate the "feeling."  We knew that this feeling was a direct cause of the peanut passing through her esophagus, but since our original OIT allergist wasn't at all concerned about it, we thought of it as a little annoyance more so than as an actual problem.  This "feeling" went on from the first doses, all the way to the last doses.

Throughout the later half of the first year and the entire second year of OIT, there was also the pain that B described as her heart hurting every time she did even the smallest amount of exercise, which had me seeking out pediatric cardiologists.  There was the feeling like she had to burp, yet couldn't get it out.  There was the unexplained minor reactions that would happen at odd times of the day, and the itching on her chin, nose, throat, and the hives that would randomly pop up out of nowhere two and three at a time.  There was the breathing problems, where B would breathe deeply for several minutes at a time... complaining that she couldn't get enough air.  Her original OIT doctor was not at all concerned, and maintained that the heart pain and the breathing and the burps that were stuck were unrelated to his treatment.

Mostly during the second year of OIT, there was the frequent midnight coughing fits, which would send me flying out of bed to check B's vitals and look for signs of anaphylaxis.  Although the coughing fits were never anytime near her dose time, I felt that they had to be related.  B never had midnight coughing fits before starting OIT; but our new OIT allergist did not seem too concerned.

Worst of all, there was the anaphylaxis.  Before OIT, I had never had to inject B with an autoinjector.  During OIT, I injected her twice.  Granted, B should have been injected when she was 18 months old and had her first taste of peanut butter, but since that time we had effectively protected her from any anaphylaxis causing exposures to peanut.  The anaphylaxis she experienced during OIT was ultimately caused by her OIT dose, when her body could not handle the dose plus other environmental stressors.  No one could tell me that was unrelated!

Throughout the second year of OIT, I would seek out the advice of specialists for all of these issues.  The doctors told me her heart was fine.  The pulmonologist said her lungs were the picture of perfect health- she did not have asthma.  The second OIT allergist said that her midnight coughing and heart pains were probably just reflux, and offered a prescription for a PPI.

I never did fill that prescription.  Instead, I spent the entire third year trying to find a dose that did not bother my child.  My reckoning was that if reflux was causing all these issues, then it must have been the OIT causing the reflux.  I thought that if I could go back down to a dose that didn't cause any issues, that we could leave B there for a month or so and then move her back up to a higher dose and she wouldn't need to be medicated just to take her dose.  It never worked out like that.  

B had been consuming 4.5g of peanut at the beginning of her second year of OIT.  During that second year, her doctor had moved her down then back up a few times.  Towards the end of the second year, I began moving her down on my own with no plans to have her doctor move her up until she displayed complete tolerance at the dose she was on, but that dose never came. 

By the end of the third year, B was down to 1g of peanut and still having issues.  I would have to give her Benedryl after dosing her, and she was still having coughing fits in the middle of the night, and breathing issues during the day.  I tried so many different things- apples after dosing, ACV before dosing, pickles with dosing, full meals with dosing, full glasses of water and/or apple juice after dosing, probiotics, multivitamins, daily zyrtech, you name it.  Everything every OIT mother has ever said helped her child get through OIT, we were doing it- everything except prescription medications.  I refused to medicate my young child just so she could eat peanuts- and together my husband, my daughter and I decided that we were going to give up on OIT.

We stopped OIT dosing this summer and since then, B hasn't had any chest pains, nor midnight coughing fits, nor feelings of burps that are stuck.  She has had a few episodes of struggling to get enough air into her lungs, so I am genuinely concerned that these 3 years of OIT may have caused irreversible damage to B's esophagus.  I am worried that prolonged exposure to the stomach acids has caused a stricture (or narrowing) of her esophagus.  I am worried about "Barrett's Esophagus" and I am worried about EoE, as sometimes she feels as if she cannot swallow certain foods.  We are scheduled with a GI doctor to address these fears and we are hoping that there was no lasting damage.

When I think back to the statistic that this treatment is 85% successful, I have to wonder what the definition of "successful" really is?  If you are able to eat peanut without having anaphylaxis, but you have to be medicated for GERD to do it, is that successful?  I know that we are not the only family that has had to deal with GERD caused by OIT- but how many allergists are ignoring the fact that OIT is causing GERD and deeming the treatment a success?  In my opinion, the treatment would have been successful if the outcome had been desensitization without any other side effects.

All in all, I do not regret that we tried OIT.  I know there are so many children out there that this therapy has helped, and I have come to accept that my girl just wasn't one of them.  She is the 15% who cannot complete treatment.  We gave it our all, but at the end of the day it just wasn't the right road for her.

Someday, when it is available, we might try the peanut patch.  Or, we may just continue our lives of strict avoidance.  We don't really know what is next... we just know that it sucks to be part of the 15%.


  

Still trying to figure it out

I wrote this entry sometime in mid 2015, and never published it.  I was probably waiting for a time when I felt a little more coherent about everything that was happening.  That time never came.  Here it is anyway:




I feel like I am spinning in a whirlpool.  There are several ways to get out, but each time I think I am reaching for the right ladder, I get sucked under again by new circumstances and new things to consider.

I haven't been able to blog about B's journey since January, since she had her anaphylactic reaction in the middle of the night.  Honestly, I want to write now... but my mental block is caused by that stupid whirlpool.  My thoughts are unorganized, nothing makes sense, I'm frustrated.  If you choose to keep reading, bear with me, as I am attempting to do my level best.

Let's start with January.  B had anaphylaxis one hour post dose, probably caused by several different factors that came together to create the perfect storm.  Five days later she broke out in full body hives 2 hours post dose (a minor reaction, but still troubling).  She followed all the rules, didn't have her heart rate or body temp elevated, had a full tummy prior to dosing, drank a lot of water after dosing, had some "apple-something" after dosing... she shouldn't have reacted, but she did.  We have no idea why. Maybe her immune system still had high levels of histamine after her anaphylactic reaction 5 days earlier?

The rest of January and February were uneventful, but then came March.  On March 25th, B had her peanut dose a little later than usual. Normally we give it to her at 5:30, but because she needed to take a shower after swim lessons, we didn't give it to her until 6:30.  She followed all the rules, had the dose after dinner, lots of water, apple-something to wash it down, rested for 2 hours and went to bed at 8:30 after taking her nightly dose of zyrtech.  At 10:15, she woke up with a coughing fit.

(To provide a little history on the coughing fit- this is something new that has started recently but only occurs once every 3-5 weeks.  We don't know what causes her to cough, but it always seems to be in the middle of the night after she has been asleep for a few hours. She will cough for 20-40 minutes and then she'll go back to sleep.  Nothing ever comes of it and I can't link it to anything because it is so random.)

When I went into her room to check on her, I noticed that she was dressed in pajamas that were way to warm (full footed winter pj's) and I immediately changed her into something cooler. As she was coming out of her sleep, she began to get a little hysterical.  She was crying and saying that she couldn't breathe.  I knew it was her nose that was stuffy, and not her actual airway, so  I got her some water to drink and we went to the bathroom to give her a nasal wash with xylitol nasal spray, the same routine we always do when she is coughing like that.  She finally quit crying and began to calm down about 15 minutes later.  Her cough had ceased.  But then she started to get little hives.  First one on her back, then one on her chin, and soon she was covered in them.  I gave her 2 tsp of Benedryl and woke my husband up.  I informed him that we may need to give her the epi pen again.  As we were discussing it, B started to complain of tummy pain (which could either be a GI symptom of anaphylaxis or it could have been nervousness because she heard me talking about the epi pen). My husband looked at her, and just like the time she had anaphylaxis in January, he said "I don't think she needs it."  Here we were again in the exact same situation, and my husband was making me second guess my decision.  Instead of agreeing to give it to her, he called our OIT allergist who, again answered his phone in the middle of the night (this guy is amazing! lol) and advised us to give her 2 tsp predisolone and 1 puff of albuterol (which he had given to us at a prior appt).  He said he couldn't hear B having any breathing trouble or coughing, so he didn't think the epi pen was necessary.  After all was said and done, my little one went back to bed and I stayed up watching her for the next several hours.

So, after having a middle of the night reaction in November, anaphylaxis and a minor reaction in January, and another middle of the night reaction in March, we are again left wondering "why" and just as importantly "what can we do about it?"  Both are equally puzzling.

I started thinking back to the beginning of OIT, when B was being treated by the original doctor.  I've said before that OIT had gone so smoothly for B until she reached maintenance... and while it is true that she never had any major reactions the entire first year of up-dosing, there were several times that I brought up what I thought were weird occurrences.  I didn't recognize them as problems with the OIT treatment because the doctor would always say "it's unrelated."

From the very beginning of OIT, B has had to wash down her dose with a glass of water because she gets a weird sensation in her throat.  Dr. #1 was never concerned about it.  I also told him when B started to have chest pain every time she exercised.  Dr. #1 said it was unrelated, but that he would order a chest xray if we wanted one.  I told him about the two times that B had spontaneously vomited for absolutely no reason at all, and his response was "sometimes kids do that, it's unrelated."  I told him about how B had a hard time breathing and had to continuously take deep breaths all last spring while we were temporarily residing in Mississippi.  He listened to her in his exam room (just by ear, not with any type of medical devices) and said "it's not asthma... it's unrelated to the OIT doses. She is probably just attention seeking."

Thinking back on all of that, I feel like an idiot for not getting a second opinion.  But in looking back, each of these symptoms are probably due to acid reflux- which the doctor we now see, said was a probability during B's very first appointment with him.

We recently took B to a pediatric pulmonologist to rule out asthma (which can also display some of the same symptoms).  She had a chest xray, computerized breathing test without albuterol and with albuterol- all of which were perfectly normal.  The pulmonologist said her lungs looked and performed beautifully.  He also agreed that her specific symptoms sound a lot like GERD.

Now I am in the process of trying natural remedies to help her.  We've raised the head of the bed 5 inches, we've been giving her lots of fermented foods and cultured foods.  I've bought chamomile tea for her to try.  So far she hasn't had anymore middle of the night coughing fits.  She still gets the weird sensation upon swallowing her dose (not every time, but frequently).  She hasn't had chest pain in a few weeks.  For now, we're just waiting to see if it happens again... which is frustrating.

If her symptoms do persist (because a change in her diet was not enough), we are considering chiropractics.  If chiropractics do not help, we will then consider meds.  I am contemplating taking her to a GI specialist so we can get a definite diagnosis- and no longer speculate about the acid reflux.  But right now, it's the only thing that makes sense. 

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. 

Maintenance

B is now in what is considered the "maintenance" part of her two year long journey.  This entire second year, she will be consuming 4.5 grams of peanut on a daily basis.  During this time it is expected that her IgE will lower to a desensitized level.  At the end of B's second year of therapy, she will have a food challenge, which will consist of eating a large amount of peanut.  If she does not react, she will be free to consume as much peanut as she wants... but will be required to eat peanut on an almost daily basis to maintain her desensitization.

Last June, we found out that there was a local pediatric allergist who was planning on starting his own private practice and was planning to offer OIT!  Imagine how thrilled I was to learn that this doctor's office would be 20 minutes from our home.  The thought of no longer travelling 7+ hours to obtain treatment was so appealing.  We would no longer have to spend money on travel expenses or hotels.  No more subsequent trips to NC each time my child became ill.  The kids wouldn't have to miss anymore school, my hubby wouldn't have to take any more sick days!  This change would cut our out of pocket expenses in half.  No more $1,000.00/ month bills!  I couldn't believe our luck!

When I say "luck," I truly mean "LUCK!"

You see, there are only 24 doctors across the United States who are offering this therapy in private practice.  This life saving treatment is definitely not well known or even completely accepted.  We just happened to have the 24th doctor opening up an OIT clinic, do so 20 minutes from our home!  The only hesitation we had was that this doctor was new to OIT and had no previous experience with OIT.  But, after talking to him, meeting with him and learning that he was going to follow the exact same protocol as our current North Carolina doctor, we decided to take a leap of faith and trust that this was all in God's plan for B... maybe it wasn't "luck" after all!

In October, we officially made the switch to B's new allergist.  With the switch in location, also came a switch in the form of peanut.  Our NC doctor had been giving B 2400 milligrams of peanut flour which our new allergist calculated to be the equivalent of 4.5 grams of actual peanut.  Depending on the size of the peanut, it equals 4 or 5 peanuts that B is consuming daily.  We had previously been told that 2400 mgms of peanut flour was equal to 8 peanuts... but found out through several sources that this simply wasn't true.  So, 4 to 5 peanuts daily it is!

Now that we have a doctor that is closer, we are considering desensitizing B to all of her allergens.  There are some tree nuts that are just as deadly to B as peanuts are.  We chose to desensitize to peanut first because of how ubiquitous it is.  It truly is everywhere (as are clueless people that don't believe accommodations for children with life threatening allergies are necessary).

I cannot stress enough, how life changing this therapy has been for our family and for B. She is not even done with the therapy yet, but we have already seen a tremendous difference in her confidence.  While she still has to be extremely careful about coming into contact with certain tree nuts, we are not as worried about peanut.  She still has to be careful about what she eats because she cannot have even a single milligram more than 4.5 grams of peanut.  She still follows all the same precautions and only eats foods we provide her.  She still brings her own safe cupcake to friends birthday parties.  We still examine food labels like we are the FBI.  However we know that she is much more protected from peanut now, than she was a year ago... and that (to us) is priceless!

Finally! An update!

Wow, the last time I posted it was April!  I promise I am not a slacker... I have had a lot on my plate during the last 4 months.  My husband was deployed at the end of March, for training in his new career field with the Air National Guard. He was temporarily assigned to Keesler Air Force Base in Biloxi, MS.  Anyone who knows me well, knows that I will go to great lengths to prevent any type of family separation. So, we have spent the majority of the summer in Biloxi, MS with my husband.  Meanwhile, B is still doing her peanut OI therapy, but instead of biweekly visits, we have been stretching them out to monthly visits.  In order to keep the family together (and keep B on her therapy) I made 4 trips from GA to NC, 4 trips from NC to GA, 3 trips from GA to MS, 3 trips from MS to GA, 1 trip from GA to TN, 1 trip from TN to NC and one trip back home from NC to GA... 17 road trips in a 4 month time span.  Yes, I am tired.

During that same time period, I was also doing battle with B's school for her protective 504 accommodations. This year B is back in public school and repeating 2nd grade.  Although I home schooled her for 2nd grade last year, there are several reasons why we decided it would be best to have her repeat. Reason number one is her size... she is my teeny tiny girl.  When she was in public school for 1st grade she was the smallest in her class and we figured having her repeat second would put her in a class with kids more her size.  She was also the youngest in her 1st grade class, which brings me to reason number two.  Her late summer birthday meant she turned another year older long after her classmates had already reached that same age.  Now, she is in a class where she is the oldest, but a lot of the kids are about to turn 8 too... so she will be more in line with their maturity.  Reason number three was made from hearing about how hard 3rd grade is.  I didn't want B to have to go back to public school entering into 3rd grade.  She is going to have to get used to public school after a very lax year of homeschooling, so we thought it better to repeat information than have to learn new material while getting used to public school again. The 4th reason, which may seem silly, was made after consideration that her little brother, who started kindergarten this year, will be in the same hallway as 2nd graders and will be able to walk with his big sis to class.  And, lastly, we wanted her to repeat 2nd just in case I missed any material that she was supposed to learn.

Anyway, back to the protective accommodations... I asked the school for several things this year, and spent the majority of the summer digging up facts about how other schools have successfully implemented similar policies.  I presented the superintendent with a list of schools from around the nation who have created inclusive and protective wellness plans, all of which I called and verified the info.  I wrote letter after letter in support of our requests. I presented legal case precedence to support our requests.  I never backed down and, I won!  I'm not bragging or anything... but thanks to my hard work and determination for B to be safe AND included, she now has full access to everything her non-allergic peers have.  Without my determination, the school might not have changed a thing... but I think credit should also be given to a change in principals (getting a new principal was a HUGE blessing to my efforts.  I can honestly say I LOVE the new principal) and also to the many, many women from team anaphylaxis who helped me with everything and anything I needed help with. They gave me unyielding support, answered all of my questions, gave me ideas and encouragement when I needed it. They pushed me not to give up. They pointed me in the right direction to find laws and disability rights. This group of women is more valuable than gold.  I could not have accomplished any of what I accomplished without their help.  For these women, I am eternally grateful!

Due to all the wonderful accommodations this year, I can finally relax. My stress levels are lower than they have been since 2011, when B started school.  It is really difficult to put your child's life in someone else's hands and have to worry about her safety all day long.  This year, when I drop her off at school... I feel like I can go on about my day knowing that she is perfectly safe at school.  That is HUGE!  Part of this new found stress relief is due to the wonderful accommodations that she has at school, but the other part of it is the Oral Immunotherapy that B has been doing for the past year.

In these last 4 months, B has progressed steadily and without any complications.  She is now consuming 2100 mgms of peanut on a daily basis.  According to her doc, that is the equivalent of 7 peanuts! Next week she will up-dose to 8 peanuts (2400 mgms) and will be in maintenance, which is the 2nd part of her two-year-long journey.  For the entire second year, she will consume 8 peanuts a day.  Next August (2015) she will graduate peanut OIT and is expected to be able to consume any amount of peanut without having a reaction of any sort.  Amazing!  I still shake my head in disbelief to think of where B started and where she is headed.  To anyone out there reading my blog, who is also considering this therapy.  I encourage you to try it.  The therapy is a life changer, a life saver, a blessing.  I feel so fortunate that my girl was able to get the therapy and that she has done so well with it.  So many new doors are open for her.  Her life is finally starting to have some sort of normalcy.

About the blog... This will probably be my last post.  It takes a great deal of time for me to sit and write all of my thoughts out, and I don't think anyone is really reading.  If you are reading and you can think of a good reason why I should continue to keep writing, please leave a comment and let me know.  If what I am writing is helping even one person, it would be worth it for me to keep the blog.  However, if no one is reading... I have a million other great things to spend time on.  Ü