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 autoinjector, 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 Epi-Pen 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 autoinjector 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!!

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