Food Allergy Support

Welcome => Welcome and Introduce Yourself => Topic started by: DysonsMom on January 09, 2014, 01:40:50 PM

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Title: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 09, 2014, 01:40:50 PM
Last night, my 4 year old son took a tiny nibble of shrimp. He had tried it at least once before and did not care for it then, either. Less than five minutes later, he got my attention and said his lip felt funny. Within moments it was severely swollen.
I was rushing around like a maniac trying to find benedryl and google the correct dosage. I got the medicine in him less than 6 minutes after he ate the shrimp, and the benedryl stopped the swelling from progressing. He also got some small red bumps on his face, a little later. After a couple of hours, the swelling was significantly reduced.
I gave him benedryl in the night and another dose this morning (his lip was swelling again at that time) and the daycare gave another dose at lunch. I have an appointment with his pediatrician this afternoon.
I know he had a reaction to the shrimp. Is this considered an allergic reaction? What is the likelihood that another reaction could be life threatening? Will the pediatrician likely prescribe an epipen or send him to an allergist first? Is there a typical procedure that kids go through from here?
Sorry for all the novice questions. I am just a little unnerved!
Title: Re: New to all of this--DS SFA reaction last night?
Post by: twinturbo on January 09, 2014, 02:01:19 PM
Sorry to hear that happened.

Yes, according to what you wrote that sounds almost textbook food allergy. The first step is avoid the food obviously. I'd report immediately to pediatrician as hives, lip/mouth tingling and swelling. Benadryl is a symptom controller that would not address anaphylaxis although technically by involving two systems/symptoms (hives and swelling) that meets the definition of anaphylaxis.

What you'll want immediately is an EpiPen or other epinephrine autoinjector in the correct weight based dose. Don't leave the pediatrician's office until they show you how to use it properly. Unfortunately most doctors outside of a food allergy specific board certified pediatric allergist will truly be able to help you with an emergency action plan or get testing. However, get a referral to said specialist immediately.

1. epinephrine autoinjector, training, recognize signs of anaphylaxis ASAP
2. Avoid crustaceans as a group including contaminated foods with crustacean. This will mean restaurants until you get it figured out via diagnostics if it's only shrimp or other related foods.
3. Referral to board certified pediatric allergist well versed in food anaphylaxis. This is sometimes a tall order but you have to start with a referral usually.

We can help. Look for others that will fill in the gaps after my post.

You don't have to be alone on this. As much help as you want or need we'll do it.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: LinksEtc on January 09, 2014, 02:09:19 PM
Hi DysonsMom,

Welcome!

How did the appointment with the ped go?  Did they give you a script for epinephrine and a "food allergy action plan"?

I would suggest seeing an allergist also.

Even if past reactions are mild, it is possible for future reactions to be life-threatening.  For severe allergic reactions, epinephrine is the med you'd want to give.  Benadryl doesn't stop anaphylaxis.

We love questions here so ask away  :) .  We were all newbies at one time  :heart: .
Title: Re: New to all of this--DS SFA reaction last night?
Post by: twinturbo on January 09, 2014, 02:23:24 PM
Before I forget start reading labels every time every label. By law shellfish must be disclosed as a direct ingredient.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: YouKnowWho on January 09, 2014, 03:06:36 PM
Do not leave the ped without a prescription for an epi pen.  It needs to be with him at all times.  Even if the ped argues that he needs to see an allergist first, epinephrine needs to be on hand immediately!
Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 09, 2014, 05:38:28 PM
The appointment went okay. The doctor's immediate response was a simple, "He's allergic to shrimp." He put him on 3 days worth of prednisone and gave me a script for an epipen.
But I have a bit of an issue. Due to a job change, my son will not have insurance until the first of February. I called around, but the least expensive injector I could find was for something called a "Twinjet" that WalGreens would order for $222. Brand name Epipens ranged from $353 to $439.
I found an online coupon for $100 off, but that is still a chunk of money that I won't have until my paycheck at the end of the month. If I wait until the 1st, with the coupon and insurance, it looks like I can get an Epipen then for nothing.
I don't know what to do. :-[
Title: Re: New to all of this--DS SFA reaction last night?
Post by: twinturbo on January 09, 2014, 06:00:06 PM
Something's off there because Twinject has been discontinued. Do you have access to a Walmart? We'll dig up the coupon (with links and instructions) and maybe Jessica can give a thorough walkthrough on maximizing purchase with that coupon without insurance. Other things we'll link are instructions on how/when to inject, hopefully you'll have a training device included with the real device.

In a case like this I'd go for a brand name EpiPen because there's a coupon out there and it's the one caregivers including teachers are most likely to be trained with. Did doctor explain that epinephrine is a time-buying medicine only waiting for EMS to respond? That you'll need to immediately seek emergency care as well?

https://www.pparx.org/resources/2013-05-29.Dey.Dey_Patient_Assistance_Program.3282.pdf Can you look into this patient assistance program? Is there nothing ACA Affordable Care Act, county health or state insurance Medicare can help with?

Sanofi produces a device called an Auvi-Q that is newer but does the job. Typically it is the most expensive device but they too have a patient assistance program. http://www.sanofi.us/l/us/en/layout.jsp?scat=FA582E76-C4AF-453B-BE47-228829600888. But again, ACA is supposed to eliminate no coverage. I'd try that today and knock on county health's door tomorrow.

Is your son at home with you or with others for care? Not for personal reasons just to see who will need training and such.

What is your son's current weight? What was the prescription for exactly? EpiPen or EpiPen, Jr., or other?

Check out CHIP. https://www.healthcare.gov/are-my-children-eligible-for-chip/


For what it's worth even with insurance I had to walk out of the ER without an EpiPen after my oldest child's first reaction. They sent us home with some Benadryl. At first the pediatrician at the time wasn't going to prescribe an EpiPen, Jr. and this was days after the reaction. Then the pediatrician relented and after we got into the allergist's office we weren't allowed to leave until the nurse was satisfied we could use one properly.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 09, 2014, 06:58:58 PM
I found a coupon for $100 off an Epipen--which will bring it down to $262. Or free at the first of the month.
The doctor did not go over a lot concerning the Epipen. Perhaps it is because I went in sounding like I knew what I was talking about. Actually, I am rather familiar. I am a teacher and have some round about knowledge. I do know that we have to go straight to the ER after using an Epi.
I will check the links tonight and call county health tomorrow.
I do have two questions. At the risk of sounding stupid--do I need to beg, borrow, and steal to get my hands on one within the next few days? Is it something that could be put off for three weeks?
If he reacted with swelling lips and hives this time, does that mean next time will probably be worse?
Should I give the Epi (when I have it) if he has the same symptoms as last time?

He goes to a daycare/preschool. I will find out tomorrow who is trained. And the prescription is for an Epi Jr. He is 4 years old and weighs 40 pounds.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 09, 2014, 07:05:48 PM
Thank you so much for taking the time to help me with this. My kids are my world and running into something like this is freaking me out a bit. Frankly, it is terrifying, and it so comforting to be able to turn to you guys.
And thanks for the tip about labels. I went to make him ramen noodles and discovered in the nick of time that it is processed in a facility that also processes seafood.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: twinturbo on January 09, 2014, 07:19:23 PM
Unfortunately, one reaction is NOT predictive of future reactions.

Yes, it is a beg, borrow or steal situation. I feel like the harbinger of bad news, I am so sorry I know it's a tough situation. On a positive note thus far shrimp alone should be easier to avoid than peanut or milk for child care purposes.

An act allowing schools voluntary stock epinephrine was signed into law. I wonder if it's possible for your doctor to write a generic prescription for your daycare center and the preschool would agree to it.

Emergency action plans typically call for the administration of Benadryl with one symptom, epinephrine with two or more. I'm hesitant to say when is the time to administer when I wasn't there. It's said many cases of anaphylaxis self-resolve but the kicker there is it's a complete unknown. What we do know is the rate of mortality decreases with prompt administration of epinephrine once you know you're at that moment. Under "Main" section are a series of stickied posts. I'd start there and be warned, the learning curve is steep. Like any serious chronic condition that is life-threatening and episodic you'll learn the ropes and cope.

I'm trying to not overwhelm you with information. The big ticket item is some sort of epinephrine autoinjector that goes with child EVERYWHERE and those who care for child know how and when to inject then call for rescue squad. I'm afraid the only preventive medicine is low tech avoidance of the trigger. How much of the allergen your child can tolerate before reacting you won't be able to pinpoint.

1. Beg, borrow or steal to get the EpiPen, Jr. prescription filled. I'd go straight to county health or try CHIP or ACA. I'd even ask the doctor's office if they have some sort of legit 'sample' EpiPen, Jr. Maybe their pharm rep can cough one up. There's no substitute for epinephrine in treating anaphylaxis.

2. Safeguard that in a medicine bag labeled for child. It needs to go with child always. Keep it stored according to manufacture specifications.

3. Take a look at EpiPen website for injection tutorials, recognition of anaphylaxies. FARE is an organization that should have this info as well. For that matter I'd call FARE tomorrow to see if they can help with the Epi prescription because the makers are hugely tied to FARE.

4. Pass everything along to anyone caring for your child. Not only treatment in emergencies but in avoidance. What he is served to eat.

5. Check in "Main" on this site for the anaphylaxis grading chart and maybe FARE or Mylan (EpiPen) website for sample action plans.


Hopefully someone here at FAS eyeballs what I wrote to factcheck me for errors, improvements.

If you feel comfortable revealing your state some of us could probably help with finding a good allergist and maybe resources to get your son that EpiPen, Jr.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 09, 2014, 07:44:23 PM
I am in Florida.
The assistance programs want annual income, and I doubt I will qualify with my income tax return. The only reason it is really an issue is because my partner changed jobs, and we are going through a 2 month gap in insurance. I am going to call the county health tomorrow to beg. After that, I will borrow if I need to. My son's life is more important than a few hundred dollars, even if it is a pinch at the moment. I may even see if his pediatrician can order it.
The fact that I almost handed him Ramen noodles is a bit frightening. What if his daycare does something like that?
Title: Re: New to all of this--DS SFA reaction last night?
Post by: CMdeux on January 09, 2014, 07:55:01 PM
Exactly.

Honestly, if you possibly can, until you get a better handle on management and they do, too, you might want to supply everything that they feed him.

They will need time to adjust-- and so will you.

Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 10, 2014, 09:00:29 AM
First thing this morning, I gave some instructions to the daycare, including to call 911 if he starts having a reaction that includes 2 symptoms and call me for any hives or lip swelling.
I am going to make the epipen a priority. I will call county health and then borrow the money if I have to. I will feel a lot better when I have that in hand. It is going into a backpack that will travel with him.
Next--research how to know when to give it and when to just give benedryl.
I am going to set up an appointment with an allergist on the 3rd of February.

How is that for a plan?

I have a couple of relatives who think I may be over reacting. (The benedryl worked just fine. Don't panic. Don't over react. He doesn't eat much seafood, anyway. He probably would have been fine eating the Ramen noodles--he has had them before. What is the likelyhood he would react to cross contamination?)

I don't know if he would react to CC. I don't know how severe the allergy might be. I just know I am taking anything that could possibly kill my baby VERY seriously.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: LinksEtc on January 10, 2014, 09:42:07 AM
Quote from: DysonsMom on January 10, 2014, 09:00:29 AM
Next--research how to know when to give it and when to just give benedryl.


Did the ped give you a written food allergy plan?

This is an example of such a plan from a leading allergy organization:
http://www.foodallergy.org/document.doc?id=234

Until you meet with the allergist (who should be able to give you expert guidance), you might consider printing the plan and bringing it to your ped to fill out and sign.  You could keep a copy and give the daycare a copy.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: LinksEtc on January 10, 2014, 09:47:57 AM
Quote from: DysonsMom on January 10, 2014, 09:00:29 AM
First thing this morning, I gave some instructions to the daycare, including to call 911 if he starts having a reaction that includes 2 symptoms and call me for any hives or lip swelling.

Sometimes 1 symptom is enough to epi for ... for example, "LUNG" symptoms after ingesting the allergen is something many of us here have been told to epi for.

Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 10, 2014, 09:50:48 AM
So should the epi be given if he has a swollen bottom lip and a few red bumps on his face like the other night? The pediatrician did not give an allergy plan, and I won't be able to get him to an allergist until Feb.
If he had any trouble with breathing, coughing, or his throat, I would give it immediately.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: LinksEtc on January 10, 2014, 10:04:52 AM
Quote from: DysonsMom on January 10, 2014, 09:50:48 AM
So should the epi be given if he has a swollen bottom lip and a few red bumps on his face like the other night? The pediatrician did not give an allergy plan, and I won't be able to get him to an allergist until Feb.
If he had any trouble with breathing, coughing, or his throat, I would give it immediately.


I'm not a doctor so I don't feel comfortable telling you when to give the epi, but what I would say is that the above plan is a good guide.  Can you print it off and bring it to the ped so that they can sign?  It would only take a few seconds and you shouldn't need to make another appointment in order to do so.

Here is another link that you might find helpful:
"Allergic Reaction or Anaphylaxis: Signs, Symptoms and Treatment"
http://www.kidswithfoodallergies.org/resourcespre.php?id=149&title=anaphylaxis_symptoms_and_treatment
Title: Re: New to all of this--DS SFA reaction last night?
Post by: LinksEtc on January 10, 2014, 10:21:20 AM
I don't want to overwhelm you with links, but this is one more great resource:

"Guidelines for the Diagnosis and Management of Food Allergy in the United States"
http://www.niaid.nih.gov/topics/foodAllergy/clinical/Documents/FAguidelinesPatient.pdf


Quote
What else you should know: Epinephrine should be given immediately to treat anaphylaxis. Delays in giving epinephrine to patients can result in rapid decline and death within 30 to 60 minutes. Epinephrine acts immediately, but it may be necessary to give repeat doses.

If you or someone you know is having an anaphylactic episode, health experts advise that you do the following as quickly as you can:

• Remove the allergenic food from the mouth or skin.
• If an auto-injector is available, inject epinephrine into the thigh muscle.
• Call 9-1-1 if you are not in a hospital, or summon a resuscitation team in the hospital.

When medical help arrives, the patient should be placed lying down, if possible, with the legs raised and given oxygen and IV fluid.

What else you should know: Antihistamines should only be used as a secondary treatment. Giving antihistamines instead of epinephrine may place you at significantly increased risk for a life-threatening allergic reaction.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: twinturbo on January 10, 2014, 10:47:59 AM
Most people will think you're overreacting. Include many medical professionals on that list. We can show you how to manage those social situations including medical professionals later but right now yes, your priority list looks right to me.

You have to keep in mind that allergic disease in this current generation of kids is unprecedented with regard to food allergy. I was in the group of disbelievers before it happened to my kids. I started believing.

Plan is in place. I'm assuming you're bringing your partner up to speed so you're both on the same page.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: LinksEtc on January 10, 2014, 10:57:26 AM
Quote from: DysonsMom on January 10, 2014, 09:00:29 AM
I have a couple of relatives who think I may be over reacting. (The benedryl worked just fine. Don't panic. Don't over react. He doesn't eat much seafood, anyway. He probably would have been fine eating the Ramen noodles--he has had them before. What is the likelyhood he would react to cross contamination?)

I don't know if he would react to CC. I don't know how severe the allergy might be. I just know I am taking anything that could possibly kill my baby VERY seriously.


Relatives often feel that way, but I'd try to tune them out for now  :grouphug:

------------------------

As far as cross-contamination & regular label reading, these are the last links I'm going to give you today (sometimes I have to hold myself back from providing too many links  :) ):


"FREQUENTLY ASKED QUESTIONS ABOUT THE FOOD ALLERGEN LABELING AND CONSUMER PROTECTION ACT OF 2004 (FALCPA)"
http://www.kidswithfoodallergies.org/resourcespre.php?id=50&title=food_allergen_labeling_law


"Cross Contamination of Foods with Allergenic Ingredients"
http://www.kidswithfoodallergies.org/resourcespre.php?id=7


http://home.allergicchild.com/cross-contamination/


"Can consumers trust allergen advisory labels on food products?"
http://www.aaaai.org/global/latest-research-summaries/Current-JACI-Research/Can-consumers-trust-allergen-advisory-labels-on-fo.aspx
Quote
highlight the need for allergic customers to avoid products with advisory labels and to have some concern for products that have no advisory labels, particularly from small companies within categories of higher risk products.


------------------------

Take everything step by step ... Don't overwhelm yourself ... Getting epinephrine, an allergy plan, an allergist, & becoming familiar with label reading is where I would start.  It's normal for there to be some stress & anxiety when 1st diagnosed  :grouphug: .
Title: Re: New to all of this--DS SFA reaction last night?
Post by: CMdeux on January 10, 2014, 11:20:02 AM
Quote from: LinksEtc on January 10, 2014, 09:47:57 AM
Quote from: DysonsMom on January 10, 2014, 09:00:29 AM
First thing this morning, I gave some instructions to the daycare, including to call 911 if he starts having a reaction that includes 2 symptoms and call me for any hives or lip swelling.


Sometimes 1 symptom is enough to epi for ... for example, "LUNG" symptoms after ingesting the allergen is something many of us here have been told to epi for.



Yes-- it's important to know which symptoms are "life-threatening" or indicative of imminent/hard-to-see life-threatening responses.

SKIN symptoms, ironically, are the easiest to see, but the least dangerous type of allergic response.  Just like in first aid class-- remember your A B C's.

Airway-- anything that obstructs the airway is BAD, BAD, BAD, and can kill-- this includes swelling anywhere along or near that airway, particularly in young children, who have SMALL airways to start with.   So lip or mouth swelling is a LOT more serious than eye swelling, basically.

Breathing-- this is a tricky symptom in young children, but wheezing, coughing, or other signs of respiratory distress of ANY kind should be treated with epinephrine because they are IMMEDIATELY life-threatening.

Circulation-- this is, at least in my mind, the ULTIMATE bad news set of symptoms (could be because I've seen these relatively often in my DD).  The reason is that they are SO darned hard to pin down in kids when you're on the outside looking in.  Symptoms of shock are so hard to spot early.  Glassy eyes, dazed behavior, or unusual lethargy with pallor... all call for epinephrine if you have ANY reason to suspect an allergic reaction is in progress.

Basically, that's it.

Get to know this:

Anaphylaxis Grading Chart

Which is the plain-English version of the one originally published in a medical journal (the link is in the chart)-- I'd take that with you to your allergist and discuss previous history (the symptoms you saw) as well as what to do about each of the ones listed in the future. 

Understand that the "neurological" symptoms usually indicate cardiovascular involvement-- pay VERY close attention to those last three columns, as those symptoms can kill in just a few minutes, and there also seems to be a "tipping point" beyond which medical intervention (even epinephrine) is no kind of guarantee of anything.  I don't say that to scare you-- but to cement for you that your family MIGHT think that you're overreacting, so you need to KNOW that you are not. 

Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 10, 2014, 11:37:38 AM
Don't worry about overloading me with links and information. I am going through and reading them all now.
I really appreciate the support. I am going to call an allergist recommended by a coworker today and get him set up with an appointment. And I am going to go through this thread with my coworker and teenage son, so we are all on the same page.
Until an allergist tells me differently, I will use the Epi if his airway is involved, even if it is just lip swelling. I would rather have him safe and have a huge ER bill than jeopardize his life. I never thought Russian roulette was very wise.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: twinturbo on January 10, 2014, 12:45:15 PM
Man, I hate to say this but it has to be said my instincts are telling me to. Keep your cards close to your chest on this one with friends and family. There are some family members that believe it's made up, not so bad and that they are going to 'prove' it to you--by putting the child at risk. They are not evil just misguided. Beware the family member too eager to watch or feed your child.

This should ease up once you get everything in place for emergencies and find a groove. If it's only shrimp (and I don't say that lightly) then it may not have as much life altering social impact as peanut or milk would. You may not have to make as many life alterations with a more narrow category of food like crustaceans.

Bottom line is watch out for adults wanting to 'test' the child. Need to know basis. Nod your head and empathize, cite doctors orders, etc. Don't get into involved conversations with anyone. That will at least save you time and frustration.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: twinturbo on January 10, 2014, 12:50:08 PM
One last base to cover just to be sure. Does child have any history of asthma? I'm not saying expect it but a history of asthma is a bit of a gamechanger.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 10, 2014, 01:15:34 PM
I appreciate the caution regarding my friends and family, but most of them have medical backgrounds (nurses and emt's), so they aren't going to intentionally "test" by exposing. They know it can be life-threatening. We have a mutual friend allergic to shellfish who is alive because she happened to have her first reaction actually at the ambulance service.

They just don't think he will actually be exposed to shellfish if I don't feed him shrimp or crab. However, I have a gluten intolerance, so I am aware of how often cross-contamination can happen, even when being careful. That being said, I am certain milk or nut allergies would have a far more life-changing implications.

As for asthma, he has never been diagnosed with it. However, (I don't know if this is related or not), but we have not yet had a cold and flu season when he did not end up on steroids and breathing treatments for coughing. As a side note, my oldest son and myself have eczema and my identical twin had asthma, but has not had a flare in years.

How would asthma be a game-changer? I am supposing it would increase the likelihood that his lungs would become involved?
Title: Re: New to all of this--DS SFA reaction last night?
Post by: LinksEtc on January 10, 2014, 05:20:20 PM
Quote from: DysonsMom on January 10, 2014, 01:15:34 PM
As for asthma, he has never been diagnosed with it. However, (I don't know if this is related or not), but we have not yet had a cold and flu season when he did not end up on steroids and breathing treatments for coughing. As a side note, my oldest son and myself have eczema and my identical twin had asthma, but has not had a flare in years.

Based on my experiences, I would suggest taking him to a pulmonologist for a formal evaluation to see if he has asthma.  Needing to be on oral steroids so many times is generally not a good thing. 

It is possible, although I can't say for sure, that severe symptoms might be reduced by adding a daily controller med like Pulmicort or Flovent.  If it is asthma, you really want to get that airway inflammation under control.

When my dd was very young, her ped didn't think that she needed to see a pulmo ... that is, until she ended up hospitalized.


Quote from: DysonsMom on January 10, 2014, 01:15:34 PM
How would asthma be a game-changer? I am supposing it would increase the likelihood that his lungs would become involved?

People with asthma are at higher risk of having severe food allergy reactions.  Plus it adds a layer of complexity in that lung symptoms require judgment calls as to whether symptoms are from asthma and/or food allergy.  I wouldn't worry too much about this unless your ds is diagnosed with asthma.

Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 10, 2014, 05:46:56 PM
I gave him some pizza a about 15 minutes ago--same stuff he has had a zillion times. Now he has a welt beside his mouth. I have an appointment to get the epipen with county health on Monday. I figured I would just give him stuff I know he can eat. But this throws a kink into things.
I gave him benedryl and he is still on prenisone, so I gave him the dose he was due for. I am going to watch him carefully and pray there is no more swelling.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: twinturbo on January 10, 2014, 05:55:47 PM
After a reaction for a while after it's possible to react to stuff you normally eat. Having said that keep a log of what he eats and if there's any noticeable reaction. Think back to the shrimp if there was anything it was cooked with or in. You're watching contamination so you'd know if it was a shared dish sponge, cooking equipment.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 10, 2014, 06:01:24 PM
Nothing shared. The pizza came from Little Cesar's. The shrimp was cocktale shrimp straight from the package to a paper plate. I immediately got rid of anything that had touched the shrimp, washed his clothes, the counters, and took out the trash.

The welt on his face seems to be going down. It is no where near as bad as the other night. Maybe it was just a hyper reaction to something from his system still being hyped up?
Title: Re: New to all of this--DS SFA reaction last night?
Post by: YouKnowWho on January 10, 2014, 06:26:22 PM
Tomato sauce could be the culprit - already sensitive skin reacting to acid.

Having said that, over the years Little Caesars has been known for mystery reactions and no one can seem to figure why.  As much as I love the pizza for being cheap and handy (given that I pay almost $10 for a pizza the size of Totinos that is safe for son allergic to wheat, rye, barley and egg), it is no longer worth it to me. 
Title: Re: New to all of this--DS SFA reaction last night?
Post by: CMdeux on January 10, 2014, 11:25:33 PM
but most of them have medical backgrounds (nurses and emt's), so they aren't going to intentionally "test" by exposing.

One certainly HOPES not.

But I'm here to tell you that in fifteen years, man, have I ever been SHOCKED by people that I know well so failing the Captain Obvious test on that one.

Unless you live it, truly "getting it" is a limited and fairly binary thing.

My family and I were talking about this the other day-- it seems to be a binary yes/no condition that can fail on either of two counts:

a) gets it emotionally-- that this is your reality-- and WANTS to understand and care for you/yours-- no questions asked.  Would NEVER challenge you about your allergy or your stated needs, but often still wants to include you and share with you.

b) gets it intellectually/cognitively and recognizes risks adequately-- understands cross contamination, brand specificity, shared lines, etc. etc. etc. and also understands-- TRULY understands-- that anaphylaxis can kill, and how.

I've found that most people in my life (about 90% of them) fail on some combination of the two things.  Usually, the overconfident ones are good on point a, but clueless with b.  They're the ones you should NOT trust, no matter how earnest and loving they are, no matter how many times you've explained things to them.  Problematically, they are often extremely frustrated that you won't accept their cooking.  They can't get it well enough.  The other kind tend to be where the medically/scientifically trained people fall.  Oh, they GET it all right.  Academically.  But they think that this is someone ELSE's problem.  Not your problem.  YOU, they think is over-reacting and probably just needs to be jolted out of your doom and gloom.  They'd be willing to help there, because they know better than you do.  Really, they'd be doing you a FAVOR to show you that you really are overly worried about being part of that group when you aren't... by, you know, demonstrating that the worst that could happen is SO minor...  Being scientifically/medically trained where you aren't, see.

That group gives me the willies.  Because they can give every sign that they are 150% trustworthy, even when they aren't.  They should know better (and they do-- as noted, with "those poor unfortunate people affected by this awful thing"); they just don't believe that YOU are in that group.  They may think that YOU are an attention-seeker, maybe even a helicopter mom sliding toward Munchausen in your bids for attention. 

Yes, I know this isn't so.  I'm a member of the "my family has believed that I might have a psychiatric disorder because of my child's FA's" club.  But I can assure you that those people ARE out there.  They are extremely dangerous.  Go with your gut-- if you don't trust someone that your brain says you SHOULD trust, there's usually a GOOD reason.  It may be in microexpressions of disbelief, etc. as you've talked to them or something like that.  Most of them have some kind of 'tell' that they aren't buying your particular narrative.   At that point, being MORE emphatic only makes them dig their heels in, and you're much better off just not entrusting the food allergy to that person until they come to you, sheepish and apologetic (or give another indication that they've had their Come to Jesus moment without YOU in an ambulance).

KWIM?

My DH calls this a "civilian misunderstanding" of sorts-- they can't get it because they don't live it. 



Title: Re: New to all of this--DS SFA reaction last night?
Post by: DysonsMom on January 11, 2014, 09:17:35 AM
Thank you. I will keep that in mind and watch like a hawk! I am not going to leave him with anyone other than at his school until we have an epipen on hand and see an allergist. My twin sister is the only one who will keep him after that. They daycare is petrified and not taking any risks.
I was talking to a coworker yesterday and her response to everything going on was, "Oh no. You have to live in that world now." That pretty well sums up how I feel--like I have somehow crossed over into an alternate reality and no one else quite sees it yet.
Title: Re: New to all of this--DS SFA reaction last night?
Post by: LinksEtc on January 11, 2014, 09:44:15 AM
CM, that post was amazing. 

Just wonderful.