First reaction requiring Epi ...

[ctmartin]

HI, Everyone,

I have visited pretty sporadically over the past year, as everything had been going so smoothly and, after almost 5 years, I must say we had gotten into a groove of sorts.  Well, all that changed on Wednesday night, unfortunately, and now I feel almost as frightened as when my daughter was newly diagnosed.

I have read (probably on  this board) that no matter how careful you are, when you are dealing with food allergies you can expect a reaction every 3-5 years.  Well, seeing as we are coming up on 5 years in July since her first (and only ... we haven't so much as required benadryl over these last several years ... NOTHING), I have started to feel like we have been on borrowed time. 

A little history on my daughter first ... she was diagnosed at 19 months with PA and later with an allergy to sesame, but has not tested positive to anything else.  We do yearly allergy testing, and her numbers for both PN and sesame have always been really low (very low class 3; >2).  She is 6 years old now, and does not have a peanut free school or classroom ... she is not allowed to sit next to anyone eating PN/sesame at lunch and knows that she cannot eat anything other than what I give her or what is approved by me.

We came home from the park on Wednesday night and, like always, my daughter washed her hands well before dinner.  There had been a festival in our local park this past weekend, and a friend of mine told me that they had been selling boiled peanuts and that they were all over the place, but I didn't see anything.  My daughter had been playing in the mulch with her friends, though, so I don't know if she could have been exposed there or not. (but then, wouldn't she have had some skin symptoms??!!)

We ate dinner, which basically consisted of foods we regularly eat:  my husband had made a pizza with rustic crust organic pizza crust, organic valley italian blend cheese, cheese from WFM cheese department,  and sauce we always eat.  We also had frozen broccoli, and my daughter had a few pieces of the lettuce mix I had bought which we had not eaten before.

Immediately following dinner she told me she felt sick.  This was not a red flag, since she had eaten so quickly and I was familiar with all of the foods she had eaten.  However, as daddy was bathing her a few minutes later I heard her say that her throat hurt, so my ears pricked up. 

I was on alert, but still not convinced.  Then she started to do something very strange ... she was spitting, in the tub and in the sink.  Well, sometimes when I feel sick ... queasy or nauseated, I feel like that, so I still brushed it off (!).

After her bath, she came into the kitchen, still complaining that she did not feel well, and proceeded to throw up all over the place ... three violent heaves.  When I asked her how she felt, she said she felt much better, so I chalked it up to her eating too much and continued to get her ready for bed.

My hubby started cleaning up the mess, and a few minutes later told me that he thought she may be coming down with a cold because her vomit was filled with mucus.  Yes, my blood ran cold, but I was STILL in denial.  I said to my husband, "hubby, these are all clear cut symptoms of an allergic reaction ... vomiting, sore throat, and congestion" and he was still in disbelief as well.

I am known  to be pretty overprotective, and also tend to go worse case scenario for pretty much everything, so the only thing I can tell you is that "trigger finger" kept going through my mind as I envisioned giving her the epi.  "Don't jump the gun, be certain of what is happening, as it will trigger a chain of events that will need to be followed through to the letter" is what I continued thinking.  We don't even have benadryl in the house, as we have never had to use it, so I asked my hubby to get some benadryl at the store across the street (even though I knew that I had no intention of using it b/c I was not going to take the chance of her getting sleepy and me not being able to see how the symptoms were progressing).

While my husband was gone, I noticed that the entire back of her neck at the hairline and including her ears was bright red, and I remembered reading about  that sunburned appearance here.  It was then that I knew in my heart what had to be done.  When my hubby returned I told him that we needed to give her the epi.  He was a little confused, since I had just sent him out for the benadryl, and he tried to convince me that she had just gotten some sun.

Everything happened very quickly in the next couple of minutes ... she developed angry hives all over her body, looked as white as a sheet, and started coughing and wheezing.  I am getting tears in my eyes when I think about how long we waited and what could have been.  We did not hesitate at that moment, and grabbed the epi.  Even though she struggled and I had to hold her down (didn't even consider the fact that this seems to be a two person job) while daddy jabbed her and we slowly counted to ten together, she knew it had to be done and was still extremely brave considering (all the while my 3 year old was wailing, "don't hurt my sister." ... fun stuff).

I cannot believe how much better she felt, almost INSTANTLY.  We live very close to the hospital (about 5 minutes at that time of night ... 9:30), so we piled into the car, with the extra epi, and drove to the ER.  There I was faced with the question from the admitting nurse "How allergic to peanuts is she?" which almost sent me into a rage.  She later explained that she had peanuts in her backpack at the desk and wanted to make sure that my daughter was not inhalation allergic. (?)

We sat down and waited, and by this time it was about 20 minutes after the epi and she started developing hives again, although she was very much wired and feeling fine, playing with her little sister.  I went back up to the desk, explaining that I understand there are probably other emergencies, but that my daughter received an epi over 20 minutes ago and it looked like she may need another and did she really want me to give it to her in front of this room full of children?  She got us a room immediately.

The rest is just the basics ... she threw up a couple more times as nausea from the epi started to hit her.  They monitored her for two hours (three total since the epi was administered), gave her anti-nausea meds so that she could get the steroids and benadryl down, and that was it.

I was rather surprised (but relieved) that they did not send us home with steroids.  I remember that with her first and only reaction she had significant facial swelling (none this time), and she was on steroids for two or  three days just to get the swelling down.  They only told us to give two more doses of benadryl over the next 12 hours, which I did.

Against the doctor's suggestion, I did send her to school the next day.  She wanted to go, and I wanted to normalize things as much as possible for her,  but I ended up picking her up a couple of hours later as we were both too scared of a biphasic reaction and I wanted her close to me. 

Now I don't know what to think!  I am trying to see the silver lining of this horrible experience and there definitely is one.  My daughter is now 6 years old and has a reaction that she can actually remember and be able to identify symptoms for future reference.  While she still has a healthy fear of the epi/needles (before this reaction she knew I carried emergency medication, but never really spoke of it ... later she told me that she knew it was a needle because she saw it on "cloudy with a chance of meatballs!), she knows what its purpose is and knows it works.

Heaven knows my hubby and I also learned a lot.  We know that we are capable of doing what we need to do, but also now know not to second guess as much.  I mean, what is the worst that can happen giving an epi if it is NOT a reaction?  Yet, we now know frighteningly enough what the worst might be if we DON'T give it in enough time.

But there is still the question of what the heck she reacted to?  It is so hard to believe that there was no known ingestion of PN/sesame and she reacted that violently!  I am extremely careful with her, but seeing as her school/classroom are not PN free, I find it VERY hard to believe that she has NOT come in contact with minute amounts.  All of the stuff we ate was pretty basic, and stuff we eat on a regular basis, so I am beside myself right now and trying to keep the fear in check.  And yes, I called the pizza crust company, my hubby talked to the cheese department at WFM (he actually used to work there) and I called the salad company (organic girl) about the possibility of Xcontam and got nothing.

Anyway, sorry this is so long.  Thank you for letting me tell my story here, and for all I have learned from others' reaction stories.  I know I could have done better, but thankfully things worked out well for us and I am left with a far better understanding of what I have to do and when.

[momma2boys]

I'm so sorry this happened!  I'm glad she is ok.  The worst part of all of this is trying to figure out what is really a reaction.  My older ds gets a headache or stomach ache and it is no big deal.  My pa ds gets one and I go into high alert.  I hate it.  I feel like I have to panic with every little symptom he gets.

You did what you had to do, great job!  Take care of yourself while dealing with the post traumatic stress of it all. 

[rebekahc]

I am so glad your DD is okay now!!  What a scary experience for your whole family!     You did your best handling the reaction and you already know what you'll do differently next time.    I'm so glad you wrote such a detailed account because I'm sure it will help someone else.

As for what she reacted to, my gut says the pizza crust.  That brand makes at least two varieties of crust with sesame seeds.

[CMdeux]

You did great.     Really.

Good job seeing the upsides of this, too-- that you have all seen a recent reaction, and also seen how rapidly epinephrine helped.  Not much question that it was a reaction after that, huh?


My gut also says something in dinner-- timeline just seems pretty long otherwise.



I'm glad that your DD is okay.  I hope that you will be soon, too.     I know how hard it is to calm yourself down after a reaction.  That hypervigilance and shaken feeling really is normal-- it can take me a few months to completely return to normal.

[Janelle205]

Glad to hear that your DD is ok.  You did a good job, for sure.  I'm an adult with food allergies, and I have definitely not epi'd myself when I should - now part of this was definitely part of an altered mental state from ana, but regardless, I thought that it was a great idea to drive myself to statcare rather than epi.

The best part, like CM, said, is that everyone now has seen how fast the epi worked.  My last reaction, I put off the epi longer than I should have, and as soon as I did it, I felt much, much better. Hopefully your dd will remember that - it works so well, and so fast.

[GingerPye]

I'm so glad she is okay, and thank you for sharing this. 

[ctmartin]

thank you rebekahc!!!!!!!!!!  now i know why they say "when" and not "if' a reaction occurs ... because somewhere along the way an overworked, overtired mama is going to screw up.  OMG i feel so bad on one level, but am so happy you have solved  the mystery for us.  in a way, the mystery was every bit as disturbing as the chain of events itself.

YES, of course it was the pizza dough!  even after visiting the website for the phone number to call, i did not notice the tab "our products" and thought that they only offered one type of crust, sauce, and pepperoni, which is all i had ever seen at whole foods.  when i called about Xcontam of sesame and peanut, i believe they were just placating me because it's pretty likely they do not make the sesame varieties in a  different facility than the other types.

however, as soon as i saw the "our products" tab and noticed that there were different varieties, my heart started racing.  i ran to the garbage (thankfully, in the melee wednesday night, my hubby didn't  bother taking out the garbage) and dug through the vomit-filled bag (sorry, guys) to find that label (i had asked hubby to do it that night, but he said he didn't want to b/c he had thrown the vomit on top).

SURE ENOUGH it was the tuscan 6 grain crust, not the original crust we normally get!    talk about complacency ... i have been reading labels for 5 years now and outside of a couple not so close calls have never had a problem.  this is the reason why i don't usually trust anyone but myself and my hubby to read labels for our daughter ... because mistakes DO happen.

this crust used to be hanging on the aisle by the frozen pizzas.  recently i noticed it had moved, and they must have picked up this 2nd variety in the process.  furthermore, there was only one pile of crusts, so i believe that they were out of the original and just had the one pile of tuscan crusts there (when i called whole foods this afternoon they told me that now they are out of  the six grain and there is only the pile of original).

so, the mystery is solved, and now, of course, i feel absolutely horrible and afraid that i can no longer keep my daughter safe.  usually i ask my hubby to double check things before he cooks them (i usually do when i am cooking) and that didn't happen either.

so, we know there is a breakdown in our system, which i guess is a lot more palatable then believing that she reacted to a trip to the playground or undisclosed cross contamination.

sesame is such a tough one to deal with, even though we have never had an issue in the past.  even on the labeling of this particular product, they are responsible enough to label for may contains but do not deem sesame important enough to list as a contain (presumably because it is not top 8).  i think my new mission will be to push for sesame labeling!  it is just too pervasive, and it is totally hidden, usually near the bottom, of  the ingredient lists.

thanks again, rebekahc ... we probably would have never revisited the crust had you not mentioned that there were other varieties.  today my daughter's teacher had informed me that my daughter was freaking out because she thought she had touched her shoe (the same shoes she wore to the park the other night).  upon telling my daughter that we had discovered that it was the pizza crust, i could see her face flood with relief.  thank you!!!!!!!!!!

[lakeswimr]

I'm sorry that happened!  Good job giving the epi and advocating for your child in the ER. 

We deal with sesame, too, and it is frustrating that it can be in products and not have to be labeled.  My son has had reactions to things like corn chips that only said, 'corn, safe for DS oil, salt' on them because they were run on the same lines as sesame.  So, I learned to call every company, but as you pointed out, things can change even after we call or we may not get the right info.

I'm not sure you will have luck getting sesame labeled.  FAAN did a frequency study and it came in under the frequency required to be labeled under current labeling laws.  I actually DOUBT their results!  I think sesame is way more common than their study found.  Maybe their study was a fluke.  I don't know. 

Just one thing--it is standard to stay in the ER for at least 4 hours if not 6 or more to watch for a biphasic reaction and this would be 4-6 hours after the reaction STOPPED.  Many ERs don't follow this for some reason and urge people to leave sooner.  You may want to talk with your allergist about what he/she wants you to do if you should have to go in the future.

I also can totally understand driving your child (BTDT) but it isn't safe.  if your child had stopped breathing on the way or needed another epi you could have had a traffic accident.  Also, if you had gone in via ambulance they would have brought you immediately inside and you would have priority to see the doctors. 

[ctmartin]

hi, lakeswimr ... i was actually pretty surprised as well that they let us go so soon.  they did warn us of a biphasic reaction, but said that if it happened it would likely occur within 12 hours.  this i thought to be erroneous, as i had always heard that they could occur up to 72 hours later.

the doctor was a piece of work, too.  he came in saying, "so she got an epi ... did you see the needle on that?" to me and in front of my daughter!  um, way to defuse the terror!!

we wanted out of there, and i felt comfortable enough knowing that we could handle a biphasic reaction if need be.  while i did think it was weird to leave so soon, i am so happy we were able to.

as for the ambulance, i had had a terrible experience with the ambulance company that responds to 911 during my miscarriage.  they brought me to the "gunshot central" hospital, rather than the womens' and children's hospital where i told them my doctor was expecting me.  they told me the reason is because the ambulance company is obligated to call ahead and be redirected to whatever hospital can take you at the time.  i basically lay bleeding in a hospital bed, with no one attending to me (the only person that saw me was the person who felt it necessary to collect my co-pay at the time), only to be transported (via the same ambulance) across the street an hour later at a cost of $700, which insurance does not cover.

there was no way i was going to put my daughter through that kind of situation.  i agree it was a risk, but it was a risk i was willing to take, knowing what i knew.  we had called ahead, so they were expecting us, and i was constantly monitoring my daughter along the way and, if need be, my hubby was ready to administer a 2nd epi.  i can't say i would do it differently, although i have definitely told the school that 911/ambulance needs to be called in the case of epi.

[lakeswimr]

What a horrible experience you had with the ambulance and hospital yourself.  I can understand not wanting anything like that for your daughter.

One thing about biphasic reactions is that they respond much less well to epi than initial reactions and can move much more swiftly so it is important to be in the ER because they have various other life saving equipment.  I do understand the feeling of wanting to get OUT of there asap and have done that before the 4 hours but I try to not do that.  Last time we stayed the 4 hours even though we got moved to DS on a gurney in the hall.  DS played his DS and I read.  The staff thought I was weird. 

Yes, I have heard 72 hours.  I don't know the stats on how often they happen or in what time frame but they certain can happen way out from the original. 

[Mfamom]

Wow.  You did a great job recognizing what was happening.  I can't believe how scary that story was.  Good wake up call for me, as we're going on a very long time with no problems. 
I'm so relieved your daughter is okay and I'm so sorry you all went through that scary scene.  Very frustrating not knowing what caused the reaction. 
Thank you for sharing. 

[Mookie86]

What a horrible experience, but like you said, it also had many good lessons.  Don't be hard on yourself for not giving epi sooner.  I think you did great!

I'm glad you figured out what caused the reaction.  At least you don't have to deal with fear of the unkown.

[GoingNuts]

You handled everything beautifully.  Kudos to you, and hugs to all of you (I loved the part about your 3 year old yelling at you not to hurt her sister - give her an extra big one for me!).

BTW, our WFM cheeses all have a "may contain" notice on them - which I always thought was probably a CYA statement, but I still avoid them.  But yes, it's more likely the pizza dough.  I hate sesame allergy with a passion. 

AFA going in the car is concerned, I live about 5 minutes from one major medical center, and 7 from the other.  I can be there before an ambulance could even be at my home, so I have also chosen to drive in an emergency.  As a matter of fact, at a meeting of my local support group a few years ago someone asked the question  - car or ambulance - of the allergist who was there that night.  He said that for most of us, living where we do, car was fine since we're all so close to the hospital.  Of course it depends on whether or not you are alone, the condition of the patient, etc. 

You did good.  Pat yourself on the back, and try to decompress this weekend. 

[Macabre]

Oh wow. Good for you giving the epi!!  Expect the PTSD of the reaction to last a few days. And give yourself permission to deal with that.

I'm willing to bet the nausea she was experiencing in the ER was reaction related. The epi makes you feel wired and fine. Know that after the epi she needs to be lying down with her feet elevated. Not standing or sitting (another reason to use an ambulance). There is a correlation with high fatality risk and not remaining lying down after the epi. But the nausea, considering she was hiving up again and she had GI symptoms earlier new GI symptoms make more sense.   I have had epi many times and nausea has never been a side effect. Maybe it can be, but I would think you were seeing a reaction symptom.

I understand not wanting to put your dd through the trauma if what you went through. But I also wouldn't expect that to happen again. What I would expect by driving to the ER hanging out in the waiting room and not getting triaged properly. Because I have done that, too. And when we call 911 they take us directly a room and we are seen immediately. The hospital takes it far more seriously.

It's hard to know what to do in a reaction. It really is. But if it happens again, I would call for transport. No question. 

If you used a pizza stone to bake the pizza you may want to throw it away.

((hugs)) glad your dd is doing well.  I hope you have a good weekend. 

[ctmartin]

HI, Everyone,

Thank you for all of your responses and well wishes!  We are well on the road to recovery, although the first couple of days were a little rough (teacher reported increased anxiety in my daughter, which is understandable, of course).

I spoke with her allergist at Duke today about different issues pertaining to her reaction, but still don't feel completely comfortable in what to do.  This was actually Dr. Burks' longtime nurse practitioner, as Dr. Burks has since left Duke for UNC and they have yet to fill his position.

Among some of the things we discussed were:

(1)length of time spent in observation/possibility of biphasic reaction:  she told me that Duke requires 4 hours observation post epi.  she did feel that 3 hours sounded a bit short, but also said that they would not have let us go if they weren't sure she would be OK (or at least that we would return in the case that symptoms reappeared).  with our proximity to the hospital, she thought it was OK for us to go home.  she also told me that biphasic reactions take place primarily within the first 3-4 hours, and while they *can* happen later, she said that it is extremely rare.  she did add that she thought my daughter was experiencing reaction symptoms when she was in the hospital and reiterated that epi does not cause nausea (but we had already assumed that, as her hives were starting to return with the nausea ... this is before she received the steroids/benadryl).

(2)positioning during anaphylaxis/ambulance ride:  she said that yes, legs elevated should be the positioning if it seems the person may lose consciousness, but that if they are having trouble breathing the need to be upright.  since that was the only thing we could detect (trouble breathing), she said that keeping her upright was optimum.  She also said that if there were only one adult, it would be best to call an ambulance.  however, given our proximity to the hospital, and the fact that there were two of us (one to drive and one to watch my daughter), it was fine to drive ourselves. 

I did call rustic crust and told them that their customer service needs some training in handling calls like mine.  I said that when someone asks about sesame, it would be prudent to mention that not only do they have crusts that CONTAIN sesame, but that they are made on shared lines as the others that do not.  Neither was mentioned to me when I called.  She seemed placating, but not particularly moved by my story  

Anyway, thanks again for your feedback.  I have a couple of other concerns, but I think I will post them on the main page as they are more general in nature.