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Author Topic: New to all of this--DS SFA reaction last night?  (Read 13056 times)

Description: And a few more questions

Offline DysonsMom

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New to all of this--DS SFA reaction last night?
« 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!

twinturbo

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Re: New to all of this--DS SFA reaction last night?
« Reply #1 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.

Offline LinksEtc

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Re: New to all of this--DS SFA reaction last night?
« Reply #2 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: .

twinturbo

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Re: New to all of this--DS SFA reaction last night?
« Reply #3 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.

Online YouKnowWho

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Re: New to all of this--DS SFA reaction last night?
« Reply #4 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!
DS1 - Wheat, rye, barley and egg
DS2 - peanuts
DD -  tree nuts, soy and sunflower
Me - bananas, eggplant, many drugs
Southeast USA

Offline DysonsMom

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Re: New to all of this--DS SFA reaction last night?
« Reply #5 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. :-[

twinturbo

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Re: New to all of this--DS SFA reaction last night?
« Reply #6 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.
« Last Edit: January 09, 2014, 06:58:59 PM by twinturbo »

Offline DysonsMom

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Re: New to all of this--DS SFA reaction last night?
« Reply #7 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.

Offline DysonsMom

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Re: New to all of this--DS SFA reaction last night?
« Reply #8 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.

twinturbo

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Re: New to all of this--DS SFA reaction last night?
« Reply #9 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.
« Last Edit: January 09, 2014, 07:23:16 PM by twinturbo »

Offline DysonsMom

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Re: New to all of this--DS SFA reaction last night?
« Reply #10 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?

Offline CMdeux

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Re: New to all of this--DS SFA reaction last night?
« Reply #11 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.

Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline DysonsMom

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Re: New to all of this--DS SFA reaction last night?
« Reply #12 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.

Offline LinksEtc

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Re: New to all of this--DS SFA reaction last night?
« Reply #13 on: January 10, 2014, 09:42:07 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.

Offline LinksEtc

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Re: New to all of this--DS SFA reaction last night?
« Reply #14 on: January 10, 2014, 09:47:57 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.