After the Epi – Our Real Nightmare Begins!
After the Epi – Our Real Nightmare Begins!
Almost four weeks ago, I wrote a blog post entitled “Our First Experience With the Epi – All the Details and 16 Lessons to Take Away.” As the name implied, the post was a detailed “play-by-play” of our first use of an epinephrine auto-injector, after living 14 years with multiple kids with food allergies. We thought that sharing this story (particularly with those who have never had to use an EpiPen or AUVI-Q) would be helpful in taking away some of the mystery, easing some concerns, reiterating important lessons, and strengthening everyone’s conviction to use their auto injector if and when it’s needed. Frankly, we were proud of the clear-headed and calm way we managed this situation as our son was suffering an allergic reaction which ultimately required epinephrine, and we wanted to share all that we learned – before, during, and after – that was applicable on that day.
To recap, my oldest son (“T”) had an allergic reaction after ingesting a product from a nut-free table at a fundraiser (his only allergy is to tree nuts). It was a delayed-onset reaction, but one in which we ultimately knew – thanks to what we’ve learned in this community – required epinephrine. (Later, the ER doctor not only thanked us for giving T the injection – too many people don’t, which makes the situation a lot more difficult and dangerous – but told us she was sure he would have experienced full anaphylaxis had we not done so.) After giving him the epi, which provided immediate relief, we followed protocol by calling 911 and having an ambulance take my son to the hospital. While in the hospital, 75 minutes after the initial exposure, T experienced a 2nd (biphasic) reaction which was easily treatable by the ER staff (to whom we give many, many thanks).
Five hours later, we were discharged. It was roughly 5AM on Sunday morning. That’s where the story was supposed to end. Happily.
Looking back, with the years I’ve spent working in this wonderful food allergy community, and learning all the proper protocols for how to treat someone having an allergic reaction (epi, 911, ER), I now realize that I never learned what happened AFTER the ER. I always assumed that once the observation period is over, the patient goes home and resumes normal life. Nothing else. It’s done. Nightmare over.
I was wrong.
Now, before I share Part 2 of the story, let me be clear that what you are about to read relates to our specific experience. This story is not textbook and, unlike the last blog entry, is not meant to provide broad lessons that would be applicable to all. In addition, due to the sensitive nature of some of what transpired, and given that my son is 16, I am toning down some parts to respect his privacy and sensitivity. However, we think it’s once again important to share what we faced in the hope that others may take away something of value from our experience and/or potentially have a more informed discussion with those providing care after the epi.
So back to the story…
After the Epi: The First 48 Hours.
We left the hospital with 2 prescriptions and a plan. One prescription was for replacement auto-injectors. (OK, there IS a lesson in this story – always get prescriptions for replacements when leaving the ER.) The other was for Prednisone, which was explained to me as necessary to reduce swelling. Arriving home, my son and I both fell asleep (it was a long night!). My wife dropped off the prescriptions later that morning. When she returned to pick up the meds, the pharmacist asked her to come back as he had a question about the Prednisone that he wanted to clarify with the prescribing doctor. (Did he foresee something? Or did he in fact just have a simple question?)
Anyway, we also left the ER with a plan. The plan was for T to take Benadryl 4 times that day (Sunday), as well as 80mg of Prednisone on Sunday and another 80mg on Monday. After that… done.
As you can imagine, having had very little sleep and adding in Benadryl, Sunday and Monday were wash-outs for T. He could barely keep his eyes open on either day. He missed one day of school. Big deal. He diligently took the Prednisone as well.
I wrote Part 1 of this story Tuesday for publication on Wednesday. I thought I was recapping a completed experience. However, Tuesday is when it all went wrong.
After the Epi: Days 3 & 4. The Bottom.
T went to school Tuesday as usual (he’s in high school). My wife picked him up at the end of the day for the ride home. This, as you can imagine, is generally an uneventful time. However, when I got home from work, my wife pulled me aside, looking worried. She was very concerned about T because not only did he seem uncharacteristically down on the car ride home, but he said “I don’t have anything good to look forward to anymore.” Now, you have to understand, my wife and I have been blessed with 5 amazing kids, and T has always been the model older brother for his siblings. He is as nice a 16-year-old boy as you can imagine, he is empathetic toward others, he LOVES his younger siblings and plays with them as much as he can, he has a ton of friends, and he is a VERY upbeat, fun-loving kid who plays sports and always drives to win, yet who doesn’t mind losing and who I have seriously never seen get really angry at anyone. Despite being a hockey player of smaller stature (drawing the “attention” of bigger kids on other teams), he has never even thought of retaliating from a cheap shot (despite me admittedly advocating for him to do so) and has actually never drawn a penalty in almost 10 years of playing. Basically, he’s an easy-going, well-balanced kid in many important ways.
So you can imagine my shock and concern upon hearing what T said to my wife in the car! I tried to get the “real” context of his statement out of her – after all, that just wasn’t him! – but she stood hard and fast that she knew what she heard and the sadness in his voice.
My wife and I thus spent a great deal of time on the phone with doctors that day. My wife spoke to T’s allergist, his pediatrician, and another ER doctor. I spoke to a psychiatrist I know. The message to us was clear: T was given a very high dose of Prednisone – a drug that a lot of people have horrific reactions to.
[Now, NOTE AGAIN that I am NOT advocating against Prednisone or any other drug – I am NOT a doctor and have no formal medical knowledge – I am simply sharing our personal nightmare to help fully inform others.]
Of all the doctors we spoke to, there wasn’t a general consensus on how T should have been treated after the ER. There was some question about the high amount of Benadryl he was told to take, but that was the least of our concerns. We wanted to understand what was happening due to the Prednisone… and what we should expect. One allergist/friend I spoke to (10 days later) shared with me that the formal guidelines for Prednisone actually would suggest about 50-80mg/day for T, given his age and weight. However, of the four doctors we spoke to that day – the allergist, pediatrician, ER doctor (not the one who gave the initial prescription), and psychiatrist – all felt that 80mg/day was way too high. 60mg would be a full dose for an adult, we were told, and for a 125lb boy, 40mg is the highest they would have prescribed! T took double this most aggressive recommendation!
Fortunately, we were told by all the doctors that the mental effects of the drug would fade away, probably by the weekend. (Effects? Plural? What were we in store for?) We were heartened. However, one of the doctors suggested that we don’t leave T alone and that we even have him sleep in our room until the negative effects died down.
But things seemed calm that Tuesday evening. T sat doing his homework. He definitely didn’t seem himself – he was tired and distracted – but there didn’t appear to be any concerning behavior. I felt a little heartened and relieved.
That night, as I worked in my study, T climbed into bed around 12:30. He then called for me almost immediately. This has never been a good sign in the past, and hadn’t occurred in a very, very long time. When I went into his room, T was beside himself with anguish! He tried to explain to me what was wrong. Suffice it to say that he seemed to have become obsessed with what he described as a dry area in the back of his airway above the mouth which became very uncomfortable every time he took a breath. He was adamant this had nothing to do with the allergic experience he had just gone through. I asked when it began. He told me it had been like that for YEARS but was worse now than ever. Further, he told me it was distracting him all day at school and he couldn’t concentrate. He couldn’t get it out of his mind!
What could I do? Despite feeling pretty sure that this was an obsession brought on by the Prednisone, I racked my brains for how to help him temporarily relieve this sensation, but couldn’t come up with any reasonable ideas (let alone any that he believed would work). I scoured the internet trying to find something similar to what T his feeling. Nothing. Finally, having no solution in mind, but knowing that this obsession was truly bothering him, on top of what he had told my wife earlier, I had him sleep on the window seat in our master bedroom so we could more easily stay on top of anything that might transpire with him that night. Eventually, he fell asleep. Meanwhile, I stayed up much of the night researching Prednisone. I’m sure doctors sigh when they hear that someone is researching the internet for medical information… and they should. However, what I read that night scared me. Of course, I was only reading the horror stories, but they were bad – really bad! Most involve individuals practically going out of their mind with severe, temporary mental issues – depression, anxiety, obsessions, even suicidal behavior. I have since spoken to a few friends who have sworn off Prednisone after sharing their nightmarish stories with me. The only glimmer of hope I ended up with that night was the constant reminder that these negative effects would eventually go away.
T was a disaster the next few days. He was down and depressed. He was obsessing over this feeling in his airway. He couldn’t concentrate (later verified by some friends and a teacher at school who said they noticed his atypical behavior). And he was scared! He was scared that this feeling would never go away. We kept him home from school Wednesday and notified his guidance counselor so we could coordinate a workable plan for when he returned (this was the big test week before the review period that led into finals – i.e. a bad time to miss school and have to make up tests).
My wife also remembered something important on Wednesday. She remembered that T had once before been prescribed Prednisone. And she remembered that at that time he had obsessed about an infection on his ankle. I don’t know the dosage he was on, but I do remember this “weird” and drawn-out concern he had about his ankle.
In any case, nothing changed that Wednesday when T stayed home… except that we saw these issues all day first-hand. It was bad. He was scared. The only thing that seemed to reassure him was telling him that all these feelings were related to the Prednisone and that they would fade away. He was anxious to know when. We shared with him the best guess from what we were told – by the weekend – which gave him a small glimmer of hope. That was good… because we were wrong. [It is now 4 weeks later and I’d say he’s finally just about 95% T again.] We didn’t leave T alone that day. We kept him in our room again that night. And he stayed home from school again Thursday (with emails flying back and forth between the understanding guidance counselor and my wife and I).
After the Epi: The Rest of Week 1.
Thursday saw a continuation of the theme of obsession, concern, an inability to concentrate, and anxiety. Yet the degree of sadness and anxiousness seemed to have made its first turn for the better. My wife and I were not going to bring up the issues unless T initiated the discussion, which we knew he would do if necessary. He did come to me for more reassurance now and again, especially before going to bed (the night is always worse for “mind games” as many of you probably know), but for the most part we were feeling more comfortable. We let T slept in his own bed again that night, and he went to school the next day.
Friday was a tough day at school for T, but the distraction of having his friends with him helped. He continued to share with us his inability to concentrate and now, on top of it all, he had a ton of tests to make up during finals’ review week. Regardless, we encouraged him to be social and have his friends over during the weekend. This was a good call. He was in great spirits around his friends. The negative side effects of the Prednisone were clearly fading. And when he wasn’t sitting… thinking… he seemed to be really good.
We did have small “relapses” of severity every now and then thereafter. The most notable was Saturday night.
On Saturday night, our family of 7 went out to eat. As the dinner dragged on, my little ones (4- and 7-years-old) became more and more restless – shocking, isn’t it? Anyway, my very excitable 7-year-old, who idolizes his big brother T, was talking a million miles a minute in his ear. Finally, T yelled at him to stop… and then looked down. He seemed unusually upset all of a sudden. As his little brother went to talk someone else’s ear off, my wife and I asked what happened. His response – again, from a young man who NEVER gets really angry and has never been physical in his life – was “I just got SO MAD!” I asked “Do you mean ‘mad’ like you wanted to hit him?” T shook his head in acknowledgment and looked down again in sadness.
Fortunately, that was the only situation of such anger – and, as I mentioned earlier, the various relapses have subsided more and more with time.
We had now survived this first horrible week after the epi. Our biggest problem now was that T was still constantly distracted with his obsession when he wasn’t actively engaged with others, particularly when he was studying. In addition, we thought all the negative effects of the drug would have worn off by now – I had told him so – which led to disappointment and concern on his part about whether they ever would. All we could do was more research (calling doctors) and keep giving him the best information and support possible. We did.
The studying and schoolwork itself didn’t help either . He had missed 3 days of high school at a critical time and was now cramming to study for tests he had to make up after school, instead of utilizing that important time to study for finals. It was very tough at first, but by the Sunday night before finals and into Tuesday (2 weeks into our ordeal)… he was shockingly upbeat! While he admitted that focus was still an issue, he was plowing through what needed to be done – and doing it well! Now, in my life, I don’t ever remember being upbeat in the midst of studying for 6 finals in 3 days. But he was.
And finally, we knew the worst had passed.
After the Epi: 4 Weeks Later.
We are now 4 weeks past our epi experience. My wife and I rarely ask T now if he’s having trouble. He’ll tell us if he is (and we can read him like a book anyway). I did ask twice in the last week when he seemed like this issue was on his mind. (It was.) He said that the intrusive thoughts still kept popping into his head, even though the thought itself wasn’t bothering him as much anymore. Yet, the fact that he couldn’t shake the obsessive thoughts was upsetting. But he has gone about his usual 16-year-old life – enjoying the beginning of summer, working, spending time with friends, driving alone (for the first time – that’s a whole ‘nother story!), playing video games… you get the picture. I would say he’s 95% back to “normal T”. I don’t know when he’ll be 100%, and more and more docs are now telling us these side effects can drag out for some time – so there may be more relapses I currently don’t expect – but 95% is good enough for now… and certainly better than where we were 4 weeks ago!
Our post-epi trauma has just about run its course, I believe. My son feels much, much better and – most importantly – recognizes that this was not the result of the epinephrine. This was extremely important for him to understand so that he will never hesitate to use it again in the future if necessary (in fact, I think he’ll be more likely, having felt the great immediate effect it had when he needed it!). We also now know what to expect post the ER visit and we are better informed to discuss with the doctor the follow-up medical plan.
During these last few weeks, many people have spoken to me about their own horror stories involving Prednisone. I can’t believe the sheer number of bad experiences I have heard about and the incredible details. This is obviously a drug that doesn’t sit well with everyone. That said, I am not a doctor and know nothing about Prednisone besides T’s experience and that which others have shared with me. From what I hear, it is a great and effective drug for what it is meant to do – so I don’t want anyone to say to an ER doctor “I won’t use this drug because this guy said a lot of people have horrible side effects.” However, I believe our story was important to share. Perhaps this will help others prepare in advance for the “post-epi” experience, maybe even helping them have a more informed discussion with the ER doctor.
As an aside, I want to thank the tremendous number of people who expressed their concern about T after I reported the initial epi experience and again, soon thereafter, when I posted on Facebook that our nightmare had actually just started (without details at the time). The outpouring of support meant so much to us and once again made me incredibly grateful to be a part of such an amazing, tight community. We are always all in this together!
How Our Community Can Keep Helping Each Other.
It is customary for me to end AllergyEats Blog entries with a call to please rate your restaurant experiences on our core AllergyEats site or app. And while it doesn’t really feel “right” to end this personal story with that “commercial call to action,” the fact of the matter is that your ratings on AllergyEats have helped an incredible number of people since inception and I’d like to make that request again given my last line: “We are always all in this together!” So if you’ve dined out recently, please help our entire food allergy and intolerance community by spending just the one minute it takes to rate your restaurant experiences at www.allergyeats.com or on our free smartphone app. Thank you.