Scary reaction that ended well

[spacecanada]

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.   

[MaryM]

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 

[rebekahc]

So sorry to read this and really glad your DS is okay!   

[my3guys]

Successful day back at school! 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?

[CMdeux]

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.

[my3guys]

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.

[ajasfolks2]

Glad he's doing better and wanted to say that this thread continues to be a source of GREAT INFO and teachable moments!!

[my3guys]

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. 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.

[Macabre]

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.

[PurpleCat]

My gluten free friend is also allergic to potatoes....she reacts quickly and is miserable.  No vodka for her!

[spacecanada]

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?

[GoingNuts]

Potatoes. Crazy. The immune system is a strange and mysterious thing. 

[my3guys]

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.

[PurpleCat]

Is he having any trouble with any other nightshades?

Hoping not...that is what happened to my friend and she is and cooks Italian! 

[my3guys]

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.