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Author Topic: Reaction during post-SLIT food challenge  (Read 66 times)

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Offline hk

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Reaction during post-SLIT food challenge
« on: November 15, 2017, 01:40:38 PM »
My dd had a severe reaction during a post-SLIT food challenge last week.  The reaction involved basically every body system and required two shots of epinephrine.  The scariest part was that the first shot did absolutely nothing and things escalated at alarming speed immediately after she had it.  That was not something we had experienced before. 

Now I find myself mid-treatment and not sure how I want to proceed because I felt the like allergist did not handle the reaction as well as he could have and my follow up phone calls are making me question things even more.  I'd love to have input from you to make sure I'm not overreacting.

Quick background:  dd is 13 and has multiple food allergies.  We developed a treatment plan with a well-regarded allergist and started egg OIT in April.  After having failed a baked egg challenge on the first bite six months earlier, she pretty much sailed through OIT (two minor reactions toward the beginning) in 3 1/2 months and now eats an egg a day.  The next phase of the treatment was SLIT to 7 foods, followed by food challenges for those (she passed the first three before the epic fail to the 4th one last week).  The final phase was to be OIT for peanut, cashew, pistachio and whatever she didn't pass with the post-SLIT challenges.

As for the reaction and the response to that:  I heard some nurses talking about dd in the hallway prior to giving her the final dose.  One of them thought she seemed a little quieter than usual.  I thought she was slightly quieter, but attributed it to being up late performing in the school play the night before.  Her blood pressure had risen slightly, but not to the 15% level where they stop the challenge.  Other vital signs were normal.  In retrospect, she had been burping a bit for an hour or so, but I wasn't really thinking of that as a symptom of a reaction.  After the final dose (5 grams of walnut), she started to look really red except that her face and hands were gray.  She felt like she couldn't breathe and she was very itchy.  The nurses gave her Zyrtec and tried to give Pepcid and she told them that she needed an epi.  They said they could give her one as a precaution.  Immediately following that, her skin started itching so much that she scratched herself until blood was running down her neck and legs.  They gave her some liquid prednisone.  Immediately following that, huge hives popped up on her entire body and she couldn't speak full sentences because she felt like she couldn't breathe.  I was alone in the room with her for a minute or so and I ran out into the hall way and screamed that something was really wrong and that she needed a second epi right away.  The doctor kind of gave me a blank stare, but about seven people (not including him) came back into the room.  Dd vomited 4 times and they gave her the second epi.  I told them that she had vomited up the prednisone and that they needed to give her more, but I had to ask 3 times before they did it.  Her oxygen dropped to 80.  She looked me in the eye and told me she was going to die and apologized for it. :-[. They put her on oxygen and she pretty much stabilized.  I was so focused on her that it wasn't until later that I wondered where the hell was the ambulance.  They kept her in the office for about two hours after the reaction started and then had me Drive her a few blocks to a hospital ER for observation.  The ER kept her for for a few more hours, gave IV fluids, prednisone and Benadryl.  They were going to admit her if the hives didn't subside after a few hours, but they did.

Looking back on it, I feel like things were handled very badly and that there is a good chance she wouldn't have survived if I hadn't demanded the second epi when I did.  So strange, but I didn't even think about just giving her one from my purse.  Things were just happening so quickly. 

I had to follow up with the doctor the following day to inquire how to handle her egg maintenance dose and the SLIT drops after the reaction.  Good thing I was proactive because I needed to decrease them both.

I didn't hear from anyone in the office until I emailed a request for the write up they did for me to give to the ER doctor.  They have not provided that, but called to "see how she's doing" (5 days later).  I said that I thought there was some room for improvement on how the reaction was handled and asked for a meeting.  They said they would call me to schedule something, but have not yet done so.

So now I am left partially through this SLIT treatment but close to running out of drops.  They said I should keep her on the drops until she started nut OIT, but I obviously can't start nut OIT there with the lack of a comfort level.  I'm also supposed to feed her the three nuts that she had passed, but I'm terrified to do that.

Prior to this reaction, I had nothing but praise for the doctor and his staff and our lives really have been changed by the egg OIT.

I would really appreciate any thoughts you have on how the reaction was handled (maybe you think it was appropriate even) and how you would proceed if it was you.

Final thought.  The Allergy community is pretty small.  I told one food allergy mom about this.  Within 5 minutes, I found out that a friend of a friend of a friend had a nearly identical experience with the same doctor about 10 months ago.  It worries me if he is not learning from these situations.

Thank you for reading this and for any input you might have!
DD (13 yo) - peanut, tree nut, egg, sesame, avocado, cherries, mango and possibly fish?
Me - EoE

Online spacecanada

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Re: Reaction during post-SLIT food challenge
« Reply #1 on: November 15, 2017, 02:25:24 PM »
No advice right now, but many hugs for you and your DD.   :grouphug:  I am so sorry you experienced that, and glad that your DD is ok now. 
anaphylaxis to tree nuts, peanuts, and potatoes; severe dairy intolerance; vegan (preference)
family members allergic to dairy, egg, peanut, sesame, shellfish

Online spacecanada

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Re: Reaction during post-SLIT food challenge
« Reply #2 on: November 15, 2017, 03:31:34 PM »
After processing this for a bit...
- a doctor, or at the very least a nurse, should have been with your DD at all times after Epi was administered, until she was completely better.  Of all the comments, this one is bothering me the most.  You should have been under constant supervision at the first sign of a reaction.  My goodness, I cannot even get an SPT without someone watching me like a hawk and questioning every sniffle.  With allergy shots I wasn't even allowed to use the toilet alone during the one hour waiting period.    When I had even the slightest reaction they pulled the allergist out of his current appointment to see me immediately.  This is not right.  Huge red flag.
- I don't know what equipment your allergist clinic has, so I cannot comment on whether or not an ambulance was required, but my gut says one should have been called with the onset of cardiac and breathing issues.
- I have to wonder if the first Epi was defective (considering recent reports)... but if the reaction was already brewing for a while it could have legitimately required a higher dose.
- Lack of follow up is not ok after something like that.  I would expect two follow up calls and a follow up appointment at the least.  Maybe I have high standards in that regard.

I hope you can get your review appointment soon.  Be sure to write down your concerns and bring them with you.
anaphylaxis to tree nuts, peanuts, and potatoes; severe dairy intolerance; vegan (preference)
family members allergic to dairy, egg, peanut, sesame, shellfish

Offline hezzier

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Re: Reaction during post-SLIT food challenge
« Reply #3 on: November 15, 2017, 04:52:14 PM »
How scary, glad she is ok.  I agree with space that a medical professional should have been in the room with her after the first epi.
DS (12 yrs) TN
DD (15 yrs) cat, wasps and yellow jackets

NH, USA

Offline GoingNuts

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Re: Reaction during post-SLIT food challenge
« Reply #4 on: November 15, 2017, 06:49:18 PM »
SC is right on point.  And yes, yes, yes on the ambulance. 

Iím so sorry you and DD had this terrifying experience.  It sounds awful on its own, and when you add in how it was handled, itís even worse. 

Big  :grouphug: to both of you. 
"Speak out against the madness" - David Crosby
N.E. US

Online rebekahc

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Re: Reaction during post-SLIT food challenge
« Reply #5 on: November 15, 2017, 08:17:44 PM »
Wow, so many things wrong with how it was handled and no good solution for moving forward. :-/

I'm so sorry you and DD had such a horrific experience!  :grouphug:
TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

Offline PurpleCat

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Re: Reaction during post-SLIT food challenge
« Reply #6 on: Yesterday at 04:56:47 PM »
hk,  :grouphug:  Your post is so very scary and sad.

First, how is your DD today?  Is she feeling OK, anxious, is she eating?  Any residual weird things.

The scary part after her first EPI reminded me of my DD's biphasic reaction during sesame anaphylaxis (not a food challenge).  It happened after EPI, ambulance, ER and ER meds.  The hives were so huge I could not believe they were hives.  And yes, crazy scratching and yes, respiratory distress.

I think your instinct about the doctor is spot on and suggest you listen to it.

At all of our food challenges, we have two nurses constantly monitoring DD and the allergist is in and out about every half hour to 45 minutes.  Available immediately if needed.  They have EPI pens and emergency equipment in the room.  Vitals are checked every 15 minutes.  They are in constant communication with me and DD, there is no chatter in the hall.