After the Epi – Our Real Nightmare Begins!

After the Epi – Our Real Nightmare Begins!

The Background.

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.

Comments

    Author:
    Joely Capra
    Written:


    Thank you so much for sharing your story. Your son likes an incredible young man. I am glad to hear he is back to his old self. Your story is so informative as to the after effects and the horrible experience of having to use the eli pen, which is every parent’s nightmare. thank you so much.

    Joely

    Author:
    Ashley
    Written:


    Thank you for sharing your families story. It did sadden me deeply but I’m glad your son is doing well. My 9 year old has food allergies to peanuts and fish and has not had a reaction since he was 2 years old. I have heard of the Prednisone but never of the side effects. I’ll never forget your story if this ever happens to my child. Thank you again for sharing such an informative story.

    Author:
    Wendy
    Written:


    Thank you for being a voice to parents of children with food allergies. It is encouraging and eye-opening to hear all of the details of your son’s reaction. I’m happy to hear you have made it through all aspects of the event and are on the road to full recovery. I will share your son’s story with my 14-year-old who also has severe food allergies. Please thank him, too, for being open to sharing his experience with others. It is a great help.

    Author:
    jebbypal
    Written:


    I strongly believe that everyone should always research any medication they are given, beyond just reading the “what to watch for” list that comes with it. Too many doctors don’t bother to look into drug interactions or fully explain side effects. Too many times, my own family has been prescribed drugs, had horrible reactions, and our own research has proven it is drug interactions or a rare side effect. While one shouldn’t change your treatment plan willy nilly, anything that makes you worried should prompt follow up with a pharmacist, the doctor, and a second doctor if you feel you are getting the run around.

    Author:
    Christina
    Written:


    Thank you very much. I will remember your story and appreciate your sharing it. You have a great kid!

    Author:
    Sheri
    Written:


    I’m so sorry to hear about your son’s experiance with Prednisone. I have taken the medication many times, due to allergies, asthma, and sinus issues. If I am on it long term, I have similar horrible side effects, with very vivid nightmares thrown in. I’ve had one doctor tell me not to take it again unless I’m dying.

    Something that worries me… why did none of the doctors you spoke with suggesting doing a step-down protocol with the medication? If I’m on it, I’m started with a burst (high dosage) of it, then I decrease the amount each day. It may drag on for a week, but it helps tremendously with the horrible side effects and withdrawl that your son experienced.

    I’m incredibly happy to read that he is finally becoming himself again. I hope that, soon, he will show no ill effects of the medication.

    Author:
    Jeni Cameron
    Written:


    Thank you so much for sharing this experience. My daughter already has food allergy related anxiety, so we will be on high alert if we are ever prescribed prednisone. While we have experience ANA a couple times, it was a long time ago before we knew enough to use the Epi. Thank God that it turned out ok! We have actually used it since then for a reaction to flu mist, but it wasn’t a full ANA reaction and no follow up other than Benadryl was needed. Epi probably wasn’t needed either, but we now subscribe to better safe athn sorry mentality!

    Author:
    Mary
    Written:


    Thanks you so much for sharing your story!!! I am so glad to hear your son is doing much better. I wish all of you the best.

    My daughter has food allergies and viral induced asthma. Prednisone is the drug we always use for her. I will do more research about this drug and talk to her allergist. Thank you, thank you, thank you!!!!!

    Author:
    Celeste
    Written:


    Saddened me to hear all your son and your family went through. So much more to this all then most people realize. Glad to hear he’s doing better. Thanks for sharing your experience. We haven’t have need for the epi yet, but took in every word just in case.

    Author:
    Donna
    Written:


    Thank you for your story and for keeping us all informed. So glad to hear your son is recovering. I have a 14 year old son who is ana to milk, egg, and peanut. We had a horrible allergic reaction to milk when he was 9 years old (another long story but the ER doc told us he could not have an ana reaction to milk….). However, after EPI was given in ER his lungs did not respond and were “shutting down” so he was given high dose steroid via IV. Things were rough for a few hours and when the attending nurse came out and said “we are doing everything we can for him” you can imagine my state of mind. After a very long day and night in the ER and constant prayer, we were released with a 2 week prescription of Prednisone. He did not experience severe side effects, but at 9 years old I could definitely tell a big difference in his mood, attitude, and behavior — it was as if we were dealing with a hormonal teenager with a lot of anger, sadness, and anxiety. Our biggest “after EPI” concern was the fear — both his and mine. We made one more trip to the ER the week after the reaction to reassure him — because he felt like he couldn’t breathe after dinner. Of course we knew it was anxiety but he insisted we get to the hospital asap because he was so afraid. All of us deal with the daily challenges with food and trying to avoid the EPI, and never think about what our kiddos (and we) go through after an episode. This particular reaction was so different than any of his other reactions –typically he usually had the swelling, hives, and throwing up, but none of that with this reaction. After he told me his tongue was “itching” I gave him Benadryl and he said he felt better, but he kept clearing his throat and coughing, so I rushed him to the ER, afraid to give him the EPI at home (will NEVER hesitate again). Now 5 years later, the poor kid cannot clear his throat or cough without me asking “are you ok?”. Of course this drives a 14 year old crazy, but that is an experience I never want to repeat. Thank you so much for further insight to “after EPI”.

    Author:
    Caroline Moassessi
    Written:


    Bravo to you and your family for sharing this experience.

    I truly appreciate your clear focus that you don’t want readers to make medical decisions based on your experience, but to be ready and aware.

    My son has not taken prednisone in years, but when he did, he was a terror.

    I also have learned from others about the post experience issues and being prepared.

    You do so much for this community–your giving is endless. Thank you as a parent of children with food allergies.

    Author:
    Sarah
    Written:


    I’ve been on Prednisone before, and with 5mg I can clean my whole house. At 10mg I can’t sleep. At 20mg I bounce off the ceiling. No wonder he had issues. The stuff is very good for healing, but it makes me hyper, unable to focus, and mentally changes my outlook on life. Thanks for publishing this so other people can learn. After 5 days without sleep, I took myself off of Prednisone. I have severe allergies, too–but I just can’t deal with that medication when they prescribe it to me. I usually tell them I don’t want it.

    Author:
    Nona Narvaez
    Written:


    I can relate to AWFUL mood changes due to prednisone, but it saves my life when I have an asthma exacerbation! (I notice the effects have lessened slightly over the years.) That said, when my sons have needed epi for anaphylaxis, they were never prescribed prednisone. It is certainly worth discussing with the e.r. doctor whether it is necessary or advisable to take, and at what dosage and for how long. Last week an allergist explained to me that prednisone needs to be tailored to each patient. Hopefully conversations like this will help guide patients and doctors – thank you for sharing, and give our best to your son.

    Author:
    Gary Robertson
    Written:


    Thank you for sharing your experience. Very helpful.

    Author:
    Rozelyn
    Written:


    Thank you so much for sharing your story. Even though I have 4 children (1 outgrew her allergies while the remaining 3 still have multiple), I, too haven’t reach a point to use an Epi. Your post gave me an idea of how it’s like after the hospital visit. About Prednisone, I’m also very hesitant to use it unless it’s really needed.

    Author:
    Gina
    Written:


    I’m so glad your son is doing better! I get a bunch of side effects when I’m on Prednisone, but I’m very lucky that mentally I only experience anxiety.
    Have you considered the issues might have been a combination of Prednisone side effects and general anxiety over having to be epi’d for the first time ever? I know that after the first time I used my Epi-Pen on myself, I was seriously worried about every little throat tickle, and worried about every bit of food I ate for a few months, with the anxiety/worry/grumpy-ness slowly fading away.

    For me, that reaction was probably the scariest, even though I’ve had worse since then.

    And if you or your son is interested in talking, feel free to email me! I’m 23, so I’ve had a bit of experience with anaphylaxis, but I’m still pretty young (I think, at least!)

    Author:
    Cindy
    Written:


    I have bipolar disorder and regularly see a psychiatrist. I also have asthma and have had prednisone. It is not pretty. My doctors and I have a deal that when I need prednisone in the future, a psychiatry consult goes along with it. My psychiatrist said they may precribe something short-term to go along with the prednisone.

    Author:
    Janelle
    Written:


    Thank you for writing about your experience. I have been on prednisone myself for asthma issues and have experienced the anger and quick irritability it always brings. It also keeps me awake at night. But even with all that, I’d still take prednisone because it works. Anytime I’ve needed a strong anti-inflammatory for anything, it seems to be the go-to drug. Maybe the medical community can work on finding something as good without the nasty side effects? I hope so. Glad your son is ok.

    Author:
    Robyn
    Written:


    So glad he is doing better. I too called the Dr after my 16 year old’s last reaction after we left the ER for what seemed like a very strong prescription for Prednisone. I myself have taken Prednisone in the past with very gradually step down procedure and here they were giving my 16 year old more than 10X the stretgth i had taken in the past. We found talking to other kids the same age that had been through similar experiences helped him. He is the same age at T if you are looking for someone.

    My younger son is still recovering “mentally” from his last reaction. We are working to help him feel “safe” again. Last month the Dr suggested I try baked egg in a cupcake as his levels have been very low for a few years now. As you can imagine it didn’t go well. Now he is having trust issues with me, because I gave him food he was allergic too. It’s been painful but I’m hopeful he will learn to trust me again- and no more food challenges at home. At least in the hospital the nurse can be too blame.

    Author:
    Susan Pellerin
    Written:


    Thank you for sharing this important information! I am so glad to see that you did such a wonderful job keeping your son SAFE while he was going through this horrible reaction. He needed you more than you probably know and you probably saved his life – again.
    I, myself, can not take prednisone either. I didn’t sleep for four days and nights and was so anxious/paranoid that it was driving me crazy! I couldn’t wait for the drug to get out of my system! I won’t try it again unless it’s a life and death situation – ever.
    My son is 15 and has food allergies and asthma. They gave him prednisone for a respiratory problem/cough that just would not go away. He also had reaction to the med. with sleeplessness and anxiety and the feeling of crawling out of his skin.
    So, yes, this is a very real problem and I’m glad you have shared your story in case others have to work through these horrible side effects of something that is supposed to help heal! And that is handed out like candy at times.
    Thank you again!

    Author:
    Shelly
    Written:


    I am glad your son is feeling better. I am so sorry he had such a terrible side effects. My children are younger, but I occasionally have to put them on prednisone for asthma. I am able to control how long they take it as part of the protocol. I have found that at different times my children react differently to it. Sometimes they will be ok and another time a basket case. I do always tell the teacher because of this and I was a teacher and had a student whose personality totally changed when he was on it and the parents didn’t inform me.
    I have twins with PA, but. My 10 year old had never been allergic to tree nuts, but had an anaphylactic reaction a couple of weeks ago. He was given Medrol in the ER and then we were sent home with the prescription pack where you taper off. He didn’t have any hives or itching so he didn’t take Benadryl after they gave it to him In the ER. Perhaps it was because he had his allergy meds. a couple of hours before. I don’t know. I did notice that he did have some side effects closer to the end. He’s never whines, but he was very much and a little overemotional. I was wondering if that was the form you were given or the straight pills like we have for asthma.
    Another question that I have is if predisone is the only drug that works after an allergic reaction.

    Author:
    Emily
    Written:


    Thanks for sharing this. My daughter was on Prednisone for 6 months status post anaphylaxis reaction and ended up in a wheelchair during those 6 months because her respiratory system was so compromised. We dealt with her becoming psychotic, hallucinating, suicidal ideations, obsessed with a green goblin that was stealing the Tupperware in the kitchen. My daughter was 13 at the time, so obsessing over the green goblin was very out of character. She was concerned about the number of Tupperware that were in the kitchen. i discovered she had hidden a kitchen knife so as to confront this goblin. I took away all knives in the kitchen. I worked the night shift at the hospital (i’m a nurse) and then watched her during the day, helping her finish out her school year at home. Her father kept an ear on her on the nights I worked. It was a very traumatic time of her life of which I doubt she will ever get over. She has PTSD from this anaphylaxis incident and the 6 months post.

    Author:
    Loraine
    Written:


    I am sorry for your family’s experience … Thanks for helping educate others. Do the medical professionals feel that the serious side effects were basically due to the amount of the prednisone? Since he was taking way too much for his size? Is there an alternate medication? I am asking because we have an asthmatic son who would often be given prednisone and he has had dark, depressive episodes. Never made the possible connection. Again, thanks for sharing and educating others. Prayers and blessings to your family.

    Author:
    Paula
    Written:


    Thank you for recounting your personal post-Epipen experiences with Prednisone. I know it is a very powerful drug with serious side effects as I have been on it for back issues. I am glad to hear that T is on the mend!

    Author:
    Kate
    Written:


    Thanks for sharing your experiences. It sounds like he did have a bad reaction to prednisone. However, it also sounds like this was also his first anaphylactic episode in 16years. Perhaps the stress from that (and possibly disappointment and sadness) combined with the prednisone contributed to his “post- epi” experience? I’m sure you’ve spoken with a therapist, but if not, perhaps that would be beneficial? I know my child experiences stress and anxiety following an episode.

    Author:
    Julie
    Written:


    Your story touched my heart and soul; thank you so much for sharing it. It also saddens me yet reminds me that our son was a completely different child when he was on prednisone when he had a reaction years ago. It has come to mind that the medical and nutrition community are prescribing medication and supplements, respectively, from a generalized idea about height and weight. Why not take into consideration metabolism and sensitivity per individual? You would think a lower dosage would be standard just in case because people, especially those who have allergic disease, may be more susceptible to an allergy to medication. I hope your son never has to go through this again.

    Author:
    Susan
    Written:


    Thank you for sharing your family’s story. We had a similar experience with our daughter. Fortunately prednisone has not had negative effects on her. But I know to keep my eye out for any of these signs now thanks to you. I really appreciate this community for sharing and understanding the trials of having children with food allergies. We just got back from a trip to Louisiana and I’m so happy to eat at home without the fear of peanut oil!!

    Author:
    Christina Lisk
    Written:


    Prednisone is the most evil stuff on the planet. You’re lucky he did not turn violent. At a dose that high, I have almost broken my hand from trying to destroy the fridge (it was made by a company that was run by an abusive ex) and locked myself in my room to keep myself from smashing mirrors. On lower doses, however, I just hide from everyone because I feel unlovable and disgusting.
    Everyone has a horror story with prednisone. No one takes that stuff without going unscathed…but it beats the alternative. I skipped it once–that was the worst mistake I ever made post-anaphylaxis. I felt like my insides were burning and melting for days.

    Author:
    Pam
    Written:


    I just read your story and it sounds so much like my sons story except I didn’t know there was a link with the prednisone. My son had a severe reaction on May 27th and than another 2 weeks later. Both involved epi and ambulance rides to the er. Drugs at the er but no follow up prescription.

    My son has been so depressed he refuses to leave our home for any reason and when we must leave he is adamant about not touching anything outside the home.

    He has been obsessed with his body and swears he is having an allergic reaction. He can see the hives all over his body. He asks 30+ times a day. He is afraid to sleep by himself. He has accused me of trying to feed him unsafe food. He has accused me of trying to kill him. He has now resorted to not eating…when hungry he will eat a piece of bread or yogurt but it must be the exact brand that we always have bought.

    I’m at a loss at what to do. I try to follow my heart but it’s wearing on me. I find myself getting upset with him and my other kids over the smallest of things.

    Any suggestions on next steps are greatly appreciated. Thanks

    Author:
    Juliette
    Written:


    Thanks so much for your share. I hope all is well with T now!
    I actually saw a report about this drug on one of the news networks I watch in NYC. I also was prescribed this drug after going into anaphylaxis shock. My reaction to prednisone was not severe, but what I do remember is that it definitely had a negative effect on me- it was too strong, I informed my Primary Care doctor of this and it has been added to my list of allergies/negative drugs so that pharmacist and other medical professionals are aware. I would suggest adding this drug to your son’s medical alert jewelry. Stay blessed!

    Author:
    janet
    Written:


    Wow, thank you for your story. Although I am sad it happened to your son, I am 1 and 4 days after my experience with 3 ER trips due to exposure to shellfish and mega amounts of prednisone. I am almost 50, and my mental health is definitely suffering. I am hopeful to get back to normal. Thank you for sharing.

    Author:
    janet
    Written:


    I am also a therapist and recognize that what I’ve been through is post traumatic stress. I recommend anyone who has gone through this to speak to a professional and look into EMDR therapy. I am.

    Author:
    Denine
    Written:


    I found this article while doing some research in trying to help my teenage college freshman deal with his first anaphlylactic reaction to peanuts in 16 years! I too am certain that many of the issues he has been dealing with over the past 7 weeks have been due to the prednisone he was prescribed in the ER. I know that the drug also helped save his life but the lasting effects are horrible.

    Author:
    muna
    Written:


    So glad to know your son T is doing better.A few years ago I was given what I call the ‘Evil Drug Prednisone at the ER due to Shell Fish Allergy diagnosis.The Side Effects were unspeakable.Difficulty swallowing, severe sweating skin disolorations.Personally the Psychological anxiety was the worst.On top of thatI had extreme weight loss.Update 4 Years later I am much better now.This Prednisone drug should be Banned forever.

    Author:
    Cathy
    Written:


    Thank You for this post. I read it in ER, after they had given my daughter a first high dosage. I stepped down the dosage after she was discharged in consultation with my pharmacist. And despite the adjustment, we are 3 weeks into a very similar experience as your son. I am shocked at how severe her reaction has been and if not for your post to help me put into context immediately, we would be in a much worse position.

    Author:
    Debora
    Written:


    I know the event happened to T years ago but the comments were helpful after I experienced recent sudden allergic reaction and was transported to the ER for anaphylaxis. I had horrible and very vivid dreams after receiving multiple epi injections, solumedrol steroid, Benadryl, H2 blocker, multiple breathing treatments. Not only is facing one’s mortality scary, the meds take some time to clear from the body. I had horrible nightmares which disrupted my normal sleep patterns and it wasn’t conducive to rest at a time it was so needed for healing. Steroids can impact mood, appetite, sleep patterns, etc. it would have been helpful to know about this at discharge from the ER but it was never discussed. A lot of the symptoms are similar to PTSD and luckily for me, disappeared after a few weeks. I hope this helps someone else.

      Author:
      Paul Antico
      Written:


      Thanks for sharing, Debora. I’m sure your comments WILL help others!

    Author:
    Crys
    Written:


    I’m feeling really anxious and down right now. It is day 3 on 50mg prednisone. I’m experiencing some hopeless doom feelings. Had an epi on Wednesday with prednisone. Got hives again overnight took 2nd dose of prednisone and felt OK. However, it is Friday and I had massive hives overnight Thurs took my prednisone, feeling very ‘doomy’. The emerg doc gave me 3 more days at my request. now I’m getting scared to take anymore. This allergy attack has been repeating from Monday to now. Breathing has been ok but swelling of eyes and mouth are what prompted doc to give epi on Wedn. Feeling like I need to stop the predinisone or lower the dose. Are there any alternatives to predinisone for immune response allergies?

      Author:
      Paul Antico
      Written:


      Please share all your feelings and experiences with your doctor ASAP. If he/she is unavailable, please find an on-call doctor or visit your nearest emergency room.

    Author:
    Christine Brosseau
    Written:


    I soooooo know the side effects of prednisone. I too have food allergies just surviving another allergic reaction caused by some idiot at work bringing in peanuts. I work at Canada Post and December 11 2017 I had an anaphylactic reaction at work. Peanuts I’m highly sensitive now airborne. The reactions are quicker and much more intense. 4 Anaphylactic reactions this year all cause by careless people. They don’t take it serious. The weeks of prednisone that follow. I go through hell anxiety depression wise with a prednisone cycle. I don’t trust my judgement at all. I get extremely dark and sad while on it then when just getting off I feel better for 24-48 hours then I depressed and anxious again going through the withdrawals and I lasts months. It triggers my PTSD some awful. Depressed dark thoughts like it will never get better or reliving the breathing difficulties during a reaction goes through my head. I can’t sleep and I’m cranky. Other times I could care less what’s going on around me. Almost catatonic. I can recognize it now to better cope through it.

    Author:
    Carey
    Written:


    My 15 year old son was at emergency yesterday where he was given epinephrine/adrenalin as well as Benadryl interveneously. As you did, we left with a prescription for prednisone (as well as an epipen, cetirizine and ranitidine). We have been given a 3 day dose of 50 mg/day. How many days did your son take it? My son is already a very emotional being, and I am worried now about how he is going to react. He is not feeling well today at all. Still swollen eyes and coughing now. We have no idea what caused the reaction. He had no known allergies until this episode.
    Thank you for sharing your story. I hope all is well with your beautiful family.

      Author:
      Paul Antico
      Written:


      Noticing the effects pretty quickly, we stopped the Prednisone on Day 2. The effects last weeks. BUT THAT WAS US! Not everyone reacts and that way and, as I’ve been told, Prednisone is an amazing drug for many. Talk to your doctor about any concerns, please. Good luck.

    Author:
    Eliz casey
    Written:


    I love this blog
    Spent last night in the ER. Reaction to make up
    Ended up with EPi steroids , and Benadryl all by IV

    Back home but have rapid heart beat from meds (I believe and shakiness)

    Thank you I read all the post they made me feel better
    I have suffered with allergies for 50 years.

    Only in the ER three times in all those years. I carry an EPI pen. Almost died as a child.

    Read ingriedents and be careful

    Author:
    Ashleay
    Written:


    Thank you so much for this post! Having a severe tree nut / peanut allergy, I was in contact with nuts last week and had to inject my Epipen. I had Prednisone prescribed and took it, but symptoms only appeared in the following week. Thanks so much for sharing – I feel more ‘normal’ now 🙂

    Author:
    Kim
    Written:


    I have had numerous anaphylactic rebounds to insect venom. Yes I am treated as if I have a mast cell disorder. The entire anaphylactic reaction involves all of the body systems. No one on 60 or 80 mg of steroids and large doses of antihistamines will receive a congeniality award. The steroids cause your blood sugars to go dangerously high. All of the medications dehydrate you. Your throat, eyes, lips etc are dry and cracked. Your vocal cords are damaged. Swallowing is painful and like having strep throat the entire length of your esophagus. Stomach cramps diarrhea. You become very weak much like having mono or the flu for ten plus days. I had to go through speech therapy and have my esophagus dilated . Good luck

    Author:
    KB
    Written:


    Thank you for your story. I am glad “T” has recovered. What a terrible ordeal for you all, especially him. My daughter had a similiar reaction after her ER visit. We also stopped the medicine on Day #2. She recently had another episode, but we will be passing on the follow up medication this time.

    Author:
    Sin
    Written:


    Thank you so much for posting your story.
    I’ve been struggling with the after effects of my analysis, and scouring the internet to understand why. My body feels awful and my mind is a mess as well. This helped me tremendously!

    Author:
    Lauren
    Written:


    This story sounds exactly like what we have been dealing with in my 11 year old son for the last 4 weeks. It has been an absolute nightmare and I am at a complete loss. He is miserable. Unless it is literally life or death, I will never allow him to be prescribed a steroid after the epi pen. We have known about his allergies for 10 years and had to give the epi pen for the first time 4 weeks ago. Downhill since then. He was prescribed the tapered packet of methylprednisolone (adult dose) and has not been the same since. Thank you for detailing your experience. This gives me hope that he will return to how he was before this medication.

    Author:
    Ro
    Written:


    I had contrast dye for CT Scan. I had no reaction when I was at the appointment. My appointment is around 5pm and around 10 I feel something in my throat but if felt like those small little whiteballs stuck in there I popped 2 benadryl’s went to sleep woke up 7 hours later with my throat swollen and breathing labored. Went to an ER told them I maybe having a allergic reaction to contrast dye. They never put an IV in my arm I’m just sitting there they looked at my throat and check my blood pressure checked my breathing. Had me walk 2 mins back and forth. He ended up giving me predisone pills there 2 pills (40mg together) I felt a lil better I told him so after they monitored me for 2 hours more after the oral pills. He ended up prescribing me epipens and 4 more days of predisone and said since I have benadryl home I can use them I can take them every 8 hours for 3 days. I’m just wondering should an IV have been giving. It’s one day after and my throat and still very agitated and I wonder If I would have improved more. They kept asking was I in pain I said it not painful is just very uncomfortable because my throat feels like its tight and closing

    Author:
    K
    Written:


    Hello, I know I am very late to the thread but I just came upon this while researching. I have had severe allergic reaction to unknown causes for years know. (I am 18 years old). I first started having them when I was about 8, and they would also prescribe me prednisone after the loads of the Benadryl and the Epi pen. We never really noticed any side effects when I was younger. However, after years of not having reactions, they randomly started coming back a year ago. Normally loads of Benadryl would be able to get rid of the reaction, but my latest one caused me to have to use Auvi Q for the first time in several years, and this time I did not take any prednisone. I have had the worse sense of dread and doom and the feeling that there is no more good to look forward to, just like you explained about T, and I find myself oddly obsessing over other health issues I have and getting depressed about them. I came upon this entry bc I was researching WHY I feel this way after the epi pen, and the similarities in your story can’t help but make me wonder if it isn’t the prednisone, but the epi pen itself, or perhaps both. Obviously, every person is different, but I advise caution against both medications as I do not want anyone else to feel the way I do right now.

    Author:
    Flo
    Written:


    Hi, I am late to this post as well. I wonder if anyone still feel shortage of breathe, dizziness, headache, lack of energy after “recovering” from anaphylaxis? It been 2 weeks since epi and since discharged from the hospital, but I am still not feeling 100%. For me it is more physical than psychological.

    Author:
    mary Yeargin
    Written:


    Thank you for sharing your son’s story. I had to use a Epi pen for the first time in my 65 years and thought that was all I needed to do. Well I’m glad I came upon your story because I had no idea I was to call 911 afterwards. Your story saved my life. Thank you again for sharing.

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