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Discussion Boards => Reactions & Stories => Topic started by: my3guys on April 14, 2016, 08:25:07 AM

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Title: Scary reaction that ended well
Post by: my3guys on April 14, 2016, 08:25:07 AM
I'm on my phone. Please forgive typos.

We are on vacation in FL. On captiva island which can be driven to/from. We've been having a great time -- doing a combination of eating out and cooking like we always do. Restaurants have been great. Something went wrong last night. Still don't know what yet. But I'm beyond thankful it had a good ending.

Shortly after eating ds started not feeling well. We were still at the restaurant. First I gave him tums he said he ate too fast. Then he felt like he had to throw up. Before dh took him to bathroom I gave him Benadryl. I had played the scenario out in my mind if he had a reaction. Don't hesitate you're in a more remote area than weve ever been. Give Epi call 911 etc. he didnt throw up. Mommy senses were kicking into overdrive. We left restaurant and as Murphy's law would have it we walked to restaurant on beach. As we got on beach he said his voice box felt funny and his stomach was really tight. I gave him Epi. He felt immediately better. Dh wanted him to walk back to hotel. I didnt want him to move. Instructed dh to hurry back with other kids (2block walk up beach) and get car. Then I realized I didn't have my phone but ds did. Thankfully.

Dh left and symptoms started coming back. He really didnt feel well. Asked for second Epi. I gave it. Again better but not full relief. I called 911. He asked me if he would live  before second epi and after. They came fast. Dh came back to fire trucks paramedics and a beach full of people looking at us. I was crazy calm then. No rash no outward signs of reaction. Bit 2 body symptoms one involving throat.  They were all professional but I sensed by their questions wondering if this was for real. He kept saying something felt stuck and was trying to throw up.

Got in ambulance they made me sit in front. They didn't turn siren/lights on. I asked why. They said he's stable. He's coughing talking breathing fine vitals are fine and they had more Epi on board. Once paramedic explained that his tissues in his throat were swollen he stopped trying to throw up and calmed down. 25 minutes later we get to hospital. Halfway through ride technician says he feels much better. I start bawling.

Er doc asks where's his rash. Paramedic who was with him shut him down saying his throat was swollen. He prescribes steroid and we wait in er. At this point dh and other kids show up. I realize we won't leave until 1am. We have one car and no one we can call. I tell him to uber them back and I would drive home. Felt bad for other kids. He was smart and wouldn't leave.

We passed biphasic timeline without any symptoms and they release him at 1 with scripts for Epi and steroids and continued Benadryl. He's sleeping peacefully next to me as i type.

I will try to call restaurant and find out deal. He's waking up now and this is already too long. But let me end with this -- I think it's quite possible the collective wisdom of this board over the years helped save his life last night. There are no words to say how grateful I am.

And I have a question for soak -- we are supposed to fly home tomorrow. Thoughts?
Title: Re: Scary reaction that ended well
Post by: hezzier on April 14, 2016, 09:44:02 AM
I'm glad he's ok!  Nice job handling the situation!  I don't know about flying home, call your allergist?
Title: Re: Scary reaction that ended well
Post by: PurpleCat on April 14, 2016, 01:33:59 PM
I could not breath until I got to the end of your post!  Huge huge hugs for you!   :grouphug:  (and him too)

So glad he is OK.  Definitely speak to your allergist about flying risks.  When DD has had anaphylaxis our allergist has been disgusted at the responses from the ER staff...of course she does nothing to force education on them either.

My DD has a tough week after a reaction.  She needs Benedryl, Predisone, for at least a week and Albuterol every 4 - 5 hours two weeks.   Her system needs time to get rebalanced and healed.  She always has had a biphasic reaction, but always within 12 hours of the first reaction.  A day later she is totally exhausted.  That takes a few days to resolve too.  Her body was working hard!

Hoping he is doing better very very quickly!
Title: Re: Scary reaction that ended well
Post by: my3guys on April 14, 2016, 05:24:47 PM
Thanks hezzier and purplecat! Just typing that out was helpful and your responses helped more:) thanks to your post purplecat I followed his lead and we've had very low key day -- just what he needed I think.

We've taken it easy today and he's doing pretty well. Not 100% but nothing like yesterday thankfully. He feels like he's getting a cold.

Spoke to allergist and pedi and both said he can fly as long as he feels ok.

Called restaurant...best possibility they can offer is the shared fryer...still processing.

I'm wiped but happy he's doing pretty well. Hopefully we can get him home tomorrow. Thanks again.
Title: Re: Scary reaction that ended well
Post by: Macabre on April 14, 2016, 06:26:57 PM
Wow. :heart:

You so obviously did the right thing. Don't let the ER doc get into your head.

I bet as long as he's on pred he's okay. My allergist told me to take Zantac after a reaction like that--it's an H2 blocker and doesn't make you sleepy. Fwiw.

Hugs to you. What a scary thing!


PS My sip got married on the beach in front of a chapel on Captiva. :-)
Title: Re: Scary reaction that ended well
Post by: GoingNuts on April 14, 2016, 08:12:15 PM
I was at work when I read this earlier and couldn't post a response.

OMG, I was sick reading your post!  Of course risk is higher when we're away from home, and the additional loss of control when a reaction takes place in an unfamiliar place just adds to the terror.

I'm glad he's OK.

What airline are you flying?  And remind me - what are his allergens?  Does the airline serve his allergens?

We went to Captiva and Sanibel when DS1 was an infant.  We loved it!
Title: Re: Scary reaction that ended well
Post by: momma2boys on April 14, 2016, 08:14:55 PM
Oh no, that is so scary! Im so sorry you had to deal with that, especially on vacation! We dealt with same attitude from an Er dr. Luckily my neighbor was the EMT and backed me up! Hoping for an uneventful flight. I absolutely love Sanibel and Captiva btw!!
Title: Re: Scary reaction that ended well
Post by: my3guys on April 14, 2016, 08:36:38 PM
Thanks guys. GN -- we are flying JetBlue because they don't serve nuts. Only snacks -- there may be some eggy things but he's around egg often without a problem. He's peanut tree nut and egg allergic. I called JetBlue today and they will ask for people to refrain from eating nuts in seats around him. We badly want to get home but I will be a wreck until we are.

Thinking about this more...he's had Epi 3 times now. Once in allergist office once at home and now this. He didnt get that immediate full relief from it any of 3 times. Will have to ask about that.
Title: Re: Scary reaction that ended well
Post by: GoingNuts on April 14, 2016, 09:18:15 PM
Glad you're flying Jet Blue.

Did you get replacement epis?
Title: Re: Scary reaction that ended well
Post by: momma2boys on April 14, 2016, 10:21:24 PM
My ds didn't get full immediate relief either. Please let us know when you are home safely.  :grouphug:
Title: Re: Scary reaction that ended well
Post by: my3guys on April 15, 2016, 02:39:58 AM
Yep I brought 4 epis here and will fly home with 4. Very glad I brought 4 because I could only get a script for 2 more from hospital and didnt have to go hunting around for a pharmacy at 1am to refill. We filled script first thing next am.
Title: Re: Scary reaction that ended well
Post by: PurpleCat on April 15, 2016, 07:38:35 AM
I am horrible at remembering all the kids ages on this forum.  How old is he and does he have adult or child dose epi's?

My DD has always gotten instant relief but has needed a second dose as well.  She has had the adult dose since she was young by weight.  It's up to 66lbs for Epi Jr.  Then adult dose.

Safe and uneventful trip home.  I know you will stress the whole way....quiet breaths once in awhile.  Will be thinking of you.
Title: Re: Scary reaction that ended well
Post by: GoingNuts on April 15, 2016, 07:48:25 AM
And please let us know when you arrive home safely!!!
Title: Re: Scary reaction that ended well
Post by: my3guys on April 15, 2016, 08:06:21 AM
Purplecat -- he's 13. He's had the adult dose all 3 times. Thanks for thinking about it though:)

I will post when were home thanks all for the support such a help!!
Title: Re: Scary reaction that ended well
Post by: my3guys on April 15, 2016, 08:43:15 AM
And he's much better today so the gorilla on my back has shrunk to a monkey. Getting ready to leave.
Title: Re: Scary reaction that ended well
Post by: SilverLining on April 15, 2016, 10:27:23 AM
So sorry your son and family went through this.

Hope you have an uneventful trip home.
Title: Re: Scary reaction that ended well
Post by: my3guys on April 15, 2016, 04:11:12 PM
We landed! All is fine! More happy tears...
Title: Re: Scary reaction that ended well
Post by: GoingNuts on April 15, 2016, 04:29:59 PM
 :thumbsup:
Title: Re: Scary reaction that ended well
Post by: SilverLining on April 15, 2016, 05:33:32 PM
 :heart:
Title: Re: Scary reaction that ended well
Post by: momma2boys on April 15, 2016, 06:32:00 PM
Yay, what a relief!! Have a glass of wine and relax tonight. You earned it!
Title: Re: Scary reaction that ended well
Post by: spacecanada on April 15, 2016, 11:09:43 PM
How scary! I am very happy to hear your DS is doing well after that.   :grouphug:

I have had a similar ER doc experience and it can be tough to deal with, emotionally.  Know that you did the right thing and kept your little one safe.
Title: Re: Scary reaction that ended well
Post by: GoingNuts on April 16, 2016, 07:10:18 AM
I hope you all slept well last night, back in your own beds!
Title: Re: Scary reaction that ended well
Post by: PurpleCat on April 16, 2016, 08:28:05 AM
Such relief!  Welcome Home!
Title: Re: Scary reaction that ended well
Post by: ajasfolks2 on April 16, 2016, 08:39:55 AM
Just seeing this thread . . . SO GLAD HE IS OK!!!  (And I'm sure I'm not the only member here who had tears of relief as well . . . )   :grouphug:

Note to self:  I need our 17 year-old son to read your posts and GET how important it would be to use Epi and to call 911 . . . and what he might see / experience for ER or emer personnel . . . esp as he is looking at colleges that are in small, rural/remote locations with long drives to care.  (I had even said to DS as we drove past the vol fire / EMS facility for one community -- we need to check to see if they carry epinephrine and if they don't, we need to get that improved somehow . . . )

You did so many things right, IMHO. 
Title: Re: Scary reaction that ended well
Post by: CMdeux on April 17, 2016, 11:06:15 AM
 :grouphug:  I'm SO glad that you and your family did everything JUST RIGHT here..... omg!!!

VERY glad that this had such a happy ending-- though it probably felt like anything but a dream vacation at that point.   :heart:
Title: Re: Scary reaction that ended well
Post by: my3guys on April 17, 2016, 02:09:04 PM
Thanks all. Being home is a huge relief...but his symptoms persist (not to the epipen worthy level, but they're there). He's still on prednisone, zyrtec. We cut back on the benadryl per my allergist. He feels fine until he eats. Some meals are better than others. Then he starts burping, clearing his throat, saying something feels clogged there, and that his stomach is unsettled. He's not in any major distress or discomfort, so we have meds ready to go but try to stay calm so he does. He even tried to play in a lax game today, but we turned around because he wasn't feeling well.

I keep replaying this whole thing in my head, which I'm sure isn't a surprise to any of you. The restaurant manager seemed to think it was a shared fryer that was the problem. Maybe it was. I'm not convinced, and I know we will never know for sure. Given his allergies, and his threshold, and the menu of this restaurant, and what the manager told me could've been in the fryer, it doesn't add up.

I even started to think it was a severe case of indigestion, and I was epipen-happy given the remoteness of the location but as the days have gone on that doesn't fit either.

One thing I forgot to mention is that when we were on the beach, the skin on his legs became very blotchy, not raised or itchy, all underneath the skin, and you could see his veins really clearly.

I think he had a mini reaction today. Clogged throat, burping, stomach off, legs got a little bit blotchy. As he felt better, the legs cleared up. And to be clear, these symptoms were mild in comparison to the other night. I would've epi'd again if I needed, but he was just mildly uncomfortable, not in distress if that makes sense.

I have a new theory, bizarre as it may be and have done a little reading on it. It may be far fetched and time will tell...I think it could've been the potatoes! He ate a ton of fries at the restaurant (and yes he's eaten fries many times before)...but lately he's been saying his stomach is a little unsettled, nothing else, and life has gone on. I looked up potatoes and people are allergic to them, many symptoms involving stomach discomfort.

In an attempt to stick to safe, simple foods, he's eaten potatoes multiple times in the past few days, not the same amount as at the restaurant, but he's had them multiple times. And hasn't felt well after those meals. Testing for them isn't accurate, so we will just have him steer clear for a while and see how he feels. Wouldn't that be ironic?!?!

I feel badly he missed his lax tournament, but he clearly made the right decision, which I would've forced him to if he didn't...but am trying to make him responsible for his own body you know?

This parenting thing sucks bigtime sometimes.
Title: Re: Scary reaction that ended well
Post by: CMdeux on April 17, 2016, 07:53:50 PM
Maybe swapping out rice for the potatoes a few days would be a good idea.  So sorry that he's still uncomfortable.   :grouphug:

Prednisone can also cause discomfort like that...  just fyi.

Title: Re: Scary reaction that ended well
Post by: spacecanada on April 17, 2016, 10:01:20 PM
Could it be minor reactions to something random? After reactions it is normal for the body to react to many things you aren't allergic to for a week or so until the immune system recovers.  It may be potatoes for now, but may not be a new allergy developing, though that possibility still exists. Sucky.

My potato reactions start with throat and stomach, then go down the same rabbit hole as my other allergens: disorientation, shivers, diarrhea, itchy tongue, etc. A skin rash often appears after Epi for any of my allergens, like some horrid eczema outbreak on my torso and face for a few days. (I have no idea if it appears during the reaction, I only notice it afterwards.) When we were trying to figure any of my new allergens out, it was much the same as you, with vague symptoms all over the place for a few days (with exposure) then a big reaction.  Not sure if that helps.  Fingers crossed you can narrow it down and find the cause.  😰

Good luck and I hope your son is feeling better soon, regardless of whether this is just post-reaction sensitivity to foods (which is very common) or something new.

 :grouphug:
Title: Re: Scary reaction that ended well
Post by: PurpleCat on April 18, 2016, 07:50:45 AM
Hang in there Mom!  It could take a couple weeks for his system to balance out again.  He is hyper sensitive right now.  Plain pasta might be something else better tolerated right now.
Title: Re: Scary reaction that ended well
Post by: my3guys on April 18, 2016, 12:26:55 PM
Thank you all for talking me off the ledge, I can't say enough how much I appreciate it! :heart: I know my posts have been long and rambling, but we've never experienced anything like this before and I think being away really cranked up my anxiety. Yes, he could just be randomly reacting while his system settles down, or feeling some side effects from Prednisone, or both. Allergies are such a blast I tell you with their unknowns :rant: Today is his best day yet, fingers crossed things are settling down. He is home today and has rested alot. Thanks again!!
Title: Re: Scary reaction that ended well
Post by: spacecanada on April 18, 2016, 01:41:18 PM
Reactions are very emotional, and emotionally draining too.  You are on high alert, as you should be.  We're here to support you and help if we can.  Hang in there.   :heart:
Title: Re: Scary reaction that ended well
Post by: MaryM on April 19, 2016, 07:13:32 AM
Just reading this thread.  I'm so glad your DS is ok! 
I hope you can figure out what is giving him issues now that you are home.  It's worth a try to stop potatoes for a bit.  The anxiety for you both right now is very high.  Hang in there  :grouphug:
Title: Re: Scary reaction that ended well
Post by: rebekahc on April 19, 2016, 10:14:50 AM
So sorry to read this and really glad your DS is okay!   :heart:
Title: Re: Scary reaction that ended well
Post by: my3guys on April 19, 2016, 02:22:15 PM
Successful day back at school! :happydance: He went to the nurse after lunch, but didn't miss much class. I'm very proud of him trying to plow through.

The nurse told me that he described a symptom of his reaction as he felt empty, like all the temperature left his skin?? Any ideas? Blood pressure?

Title: Re: Scary reaction that ended well
Post by: CMdeux on April 19, 2016, 03:37:23 PM
That definitely sounds as though it could be some form of dysautonomia, but it's hard to say if it was blood pressure specifically.


You might run through some descriptions of dysautonomia and see if anything else seems to resonate with him in terms of descriptions.
Title: Re: Scary reaction that ended well
Post by: my3guys on April 20, 2016, 07:18:39 AM
Thanks CM, I did look it up, and I don't think they do. I will have to talk to the allergist.

I did go through all the symptoms of anaphylaxis again, and wow, really it was more than 2 body systems now that I've really stopped and thought about it. Coughing, voice change/hoarseness, chest tightness, stomach pain, anxiety, this weird temperature/emptiness feeling, blotchiness underneath the skin (which I didn't even notice the paramedics did). My mind was really playing tricks with me because there were no hives, no obvious outward swelling. The blotchiness was really the only outward sign and I was too wound to notice it.

Anyway, still plodding along. He's doing pretty well. Stomach was better yesterday although some minor discomfort, but not like previous days. No potatoes, no more prednisone. Going to school again today, just a little late. He's still processing what happened...and equating what that may mean for high school next year, but he's not the only one.
Title: Re: Scary reaction that ended well
Post by: ajasfolks2 on April 20, 2016, 07:55:25 AM
Glad he's doing better and wanted to say that this thread continues to be a source of GREAT INFO and teachable moments!!

Title: Re: Scary reaction that ended well
Post by: my3guys on June 14, 2016, 11:06:19 AM
Thought I'd give an update on this.

After about a month, DS' reflux that was triggered by this event finally settled down. I was giving him pepcid 2x a day, took him to the pediatrician who recommended we try another type of reflux med, and just as I bought it, reflux went away.

During this whole time, we've been avoiding potatoes in all forms, since I questioned them a week after the reaction when he was still eating them and his stomach wouldn't settle.

Once DS' stomach was settled, he wanted to try potatoes again, which I thought was a good idea. It couldn't possibly be potatoes right?! He ate 5 fries, and boom! It started up again. Luckily it wasn't an epipen moment, but his throat felt "clogged", he was burping, had reflux, and was uncomfortable. After he went to the bathroom, his throat unclogged (sorry if tmi). At that point he decided to tell me his throat was better even though he initially didn't tell me it was bothering him. :rant: Reflux flared again for a few days afterwards, and has now settled down.

So bizarre. With this crazy round of latest recalls...the thought crossed my mind...could there be some kind of contamination between potato and peanut crops?? But then I realized that if there were, many others would be experiencing problems. So it must just be something weird with potatoes and him. We've tried all forms. All bad.

We have a GI appt today, and will go to Mt. Sinai in a few weeks. I've been in touch with them by phone, and they were scratching their heads over potatoes as the potential trigger...but all signs seem to point to that now. :(
Title: Re: Scary reaction that ended well
Post by: Macabre on June 14, 2016, 12:19:55 PM
Oh wow. Potatoes could be really hard. I'm thinking it probably hides in things?  I could Be wrong about that. It will be interesting to know what the folks at Mt Sinai think. I'm glad you seems to have pin pointed it at least. :-/
Title: Re: Scary reaction that ended well
Post by: PurpleCat on June 14, 2016, 12:50:38 PM
My gluten free friend is also allergic to potatoes....she reacts quickly and is miserable.  No vodka for her!
Title: Re: Scary reaction that ended well
Post by: spacecanada on June 14, 2016, 03:41:22 PM
Oh, potatoes... I am so sorry to hear they are now on your list. It was an eye opening experience when it was added to my list, and it took a few hospital visits to realize the extent of how much potato hides everywhere.  Potato is a difficult one because it isn't on labels, is often hiding in natural flavours, starches, and has many other derivatives that pop up in odd places like chocolates (not ones that were PN/TN/dairy free for me to begin with, but still).  Most gluten-free and several allergy-friendly foods now have potato in them.  Cross Daiya and Udi off your list too, as they use potato in most of their products and both told me to avoid everything they make.  Namaste baking mixes are ok, as are most Enjoy Life products except Plentils.

I hope the GI appointment goes well. 

One last thought: we're the fries coated in flour? With the big flour recall, it wouldn't surprise me if the flour was PN contaminated. Worth calling, maybe? Or another ingredient?
Title: Re: Scary reaction that ended well
Post by: GoingNuts on June 14, 2016, 07:35:47 PM
Potatoes. Crazy. The immune system is a strange and mysterious thing.  :disappointed:
Title: Re: Scary reaction that ended well
Post by: my3guys on June 16, 2016, 11:19:10 AM
GN -- you forgot annoying, frustrating, driving me batty, would like to trade his immune system in right now.

The GI appt was good. He explained how when a reaction happens that involves the stomach, it tells the stomach to produce more acid, and he wasn't at all surprised by the reflux. If we had used a different med, he said it might have ended sooner. If it continues to flare, on a different med after a period of time, then he will think about an endoscopy, and investigate the possibility of EE, which is a fear that's crossed my mind. But we need to take one day at a time.

Fast forward to the waffles yesterday am. Space and Mac you were right. Potatoes hide in things. Potato starch was an ingredient towards the end. We had nothing going on for the day, and he's got camps coming up where he's supposed to eat there (gulp). I decided to see how he'd do. He failed. He had one waffle, didn't feel right. And had reflux, burping,on and off and loss of appetite for the rest of the day.

We will officially lay off all things potatoes, and switch reflux meds if it doesn't go away. I can't believe how far we'd come over the years...kicking dairy, hazelnuts, and now I'm back to calling manufacturers like in the old days when he was still allergic to dairy and the labelling law hadn't taken effect yet. :-/ :-/
Title: Re: Scary reaction that ended well
Post by: PurpleCat on June 17, 2016, 09:58:10 AM
Is he having any trouble with any other nightshades?

Hoping not...that is what happened to my friend and she is and cooks Italian! 
Title: Re: Scary reaction that ended well
Post by: my3guys on December 29, 2017, 08:19:41 PM
I've read a few things lately that made me go searching for this thread. Final update here -- it's over a year later now. He eats potatoes fine now. We will never know exactly what happened. But all the classic reflux symptoms started after his reaction. With some time it became very clear it was a reaction, we just don't know to what. He had a very hard time eating out for a while but is better now.

He does struggle with reflux on and off which seems tied to constipation. That seems to be under control.

One thing I read recently on an allergy blog is worth repeating I think. I saved the link but can't find it now. The statistic matched what I was told by allergists in that only 20% of reactions do not have skin symptoms. BUT what I wasn't told was that 80% of fatal reactions do not involve skin symptoms!!! When people go looking for skin symptoms and wait...things can go south.

I read a few stories recently of kids who've died. None mention skin symptoms. That's what brought me back to post again here.

DS is doing well overall. Anxiety is better. He's very cautious. I hope that continues. That is the silver lining from that awful experience. He was always cautious but that experience brought his caution to a new level.
Title: Re: Scary reaction that ended well
Post by: ctmartin on January 01, 2018, 10:16:23 AM

my3guys: thanks for raising this thread.  i know i read it originally, but reading over your experience and everyone else's responses again has served as a great reminder to me of how using common sense and remaining calm is so vital to the situation.  we were in a minor car accident last night, and even though no one was hurt, everyone was pretty shaken (the roads iced almost immediately and became a skating rink before our very eyes).  later, we lamented at how inefficient we had been in not getting the license plate number or the driver's license of the person that hit us because we were all so freaked out (we called the police and they couldn't get to us for 3 hours, and when we looked at the insurance card he had given us, it had expired in 2015!)  i use this as an example of a high stress situation that doesn't happen very often, but when it does, you need to be on top of your game ... the very same way you need to be during a serious allergic reaction (the last of which we experienced in 2011).  so, again ... thank you for this reminder.

with that said, anxiety is a VERY powerful force, and since your son is eating potatoes fine now, i wonder if it was the fact that the only thing you could pinpoint from that night was the potatoes, which could have lead to your son's subsequent difficulty with consuming them?  reflux is often a direct result of anxiety (i am suffering through this currently, as I had been reflux free for 3 solid years until i started planning our upcoming trip ... my PA daughter has not been on a plane in over 10 years and running through the frightening scenarios, in addition to the language barrier we will face when we reach our destination, has sent me into a tailspin!).  I wonder if it is periods of intense anxiety that is causing the reflux for him?  just some thoughts based on my own experiences.  glad he is better now!
Title: Re: Scary reaction that ended well
Post by: my3guys on January 04, 2018, 07:14:36 AM
Thanks ctmartin. Yes I agree that potatoes most likely reminded him of his reaction. I had no idea anxiety could cause reflux wow! I know it can be linked to constipation which is a reflux trigger for him.
Title: Re: Scary reaction that ended well
Post by: GoingNuts on January 04, 2018, 08:49:15 AM
Physical activity can cause reflux as well - something to keep in mind for the reflux-prone.