Welp, DS has a peanut allergy

[HBirdie]

We got to rush to the ER tonight after dinner because we gave Caleb peanut butter on his french toast. It was his second exposure. His lips and eyes swelled up, he got hives, his nose started running like crazy, and he couldn't stop sneezing. By the time we were checking in at the front desk, he could only breathe out of his mouth, and wheezily, and his eyes were really red.

I really didn't expect this. We don't have any allergies in the family and I guess I just really thought it wouldn't happen. Anyone else have kids with nut allergies? I feel kind of out of control and I need to learn more, so I'd love it if you could point me toward some resources to read about it more.

We see his pedi in the next few days and they said they'll probably run a panel of tests to see if he's allergic to anything else. I'm hoping he won't be. I'm also hoping it's not severe enough that we won't be able to have it in the house. Will they tell us that at our appointment? Are we going to have to carry an epi pen around? He just turned one last week, if that matters.

TIA for answering my questions or sharing your experiences.

[melew]

No experience, but how scary! Poor little guy, but at least you know and can get more information and create a plan.

[jmc11511]

Yikes! Scary! Glad he is ok.

DS has a peanut and dairy allergy. He's also allergic to several other nuts. We have an Epi pen that we carry with is but have never had to use. We also have Benadryl with us all the time. He occasionally has an allergic reaction from contact. It's usually just hives and puffy eyes, no full blown anaphylaxis, thank goodness. We have peanut butter and other peanut products in the house, he just stays away from it. And if we eat it we make sure to wash our hands really well and stuff. It's not pleasant, but it's manageable. Hope you get some good news and good tips from your pedi!

[mamaalysson]

So scary! Food allergies are so frustrating. DS had an allergic reaction to either sunflower or pumpkin seeds, and watching the hives spread across his face was so scary. Our pedi suggested an epi pen for even a suspected allergy, so I have to imagine one is in your future. We dealt with food allergies with DD as well (she has mostly outgrown them, though she still sometimes reacts to dairy), and it is overwhelming at first, but quickly becomes manageable. Don't hesitate to pepper other allergy moms with questions! :-)

ETA: Allergy testing. We have done allergy testing on our daughter, and our pedi cautioned us that in allergy testing young kids, there is a high rate of both false positives and false negatives. So while there may be useful information learned, trust what you are seeing more than what the test says. DD came up all clear at her last allergist appointment, but we can see that she still reacts to certain dairy products or too much of it.

[diapersnwipes]

DD has a peanut allergy. She has an epi pen and we keep Benadryl on us at all times. DD didn't have her allergy panel until 3 because her doctor thought it was best to wait. Turns out her allergy is specifically peanuts and not other nuts.

I might get flamed but we keep peanut butter in the house just way up high we she can't reach. I also let her have some foods that say they may have been processed in a peanut plant since it seems like almost every food contains this on the label.

Good luck. It's is so scary watching the reaction happen.

[dc2london]

Ugh I'm sorry. Welcome to the "scared to take my kid on a plane" club :/

DS1 has dairy and peanut allergies and DS2 has peanut and tree nut allergies (specifically cashew).
I keep an EpiPen, benadryl and Pepcid on me at all times (did you know that Pepcid is actually an antihistamine? It functions differently from benadryl but you can give 1 mg per kg of body weight to relieve minor allergy symptoms), as well as an index card indicating each kid's allergy, instructions for the Pen and their current dosages of benadryl and Pepcid.

I've reached the point at which I'm comfortable having some dairy in the house bc DS1 is old enough and is truly very VERY responsible about his allergies (he always asks, "Is this ok for me?" before eating anything). However, as a general rule we all avoid dairy so it's pretty easy to keep it out of the house. I do NOT keep any nut products in the house. DS2 has already had an anaphylactic reaction (which was how we discovered the allergy) and I just personally am not comfortable with having any of it in the house. No flames for anyone who does keep nut products in their house with an allergic child, it absolutely can be done safely I just haven't reached a comfort zone with it yet bc Rhys is, well, a little monkey scavenger sleuth child who WOULD find it and eat it and smear it all over his body.

I kind of thought I would die without nuts bc they were a major source of protein for me but I have found TJ's sunflower seed butter to be a very convincing substitute. I've used it in many recipes, cooking and baking, in place of nutbutters and they always turn out well. Many people like Wow Butter, which is more widely available--sometimes you have to look in the natural foods section of your grocery store.

This is an excellent resource for info: community.kidswithfoodallergies.org/

I would probably invest in a few of these: www.allermates.com/

And make sure, when you get your EpiPens that you use this coupon. The manufacturer will cover up to $100 of the cost (and those f*ckers are expensive--our last kit cost us over $300) activatemysavings.com/epipen/

This IS 100% manageable, it just takes some getting used to. But over time, reading food labels will become second nature, and you'll get to know which products and companies are safe. I do most of my grocery shopping at TJ's and they are fantastic about labeling their products when allergens or cross-contamination are a concern. When the information I need is not readily on the label, a quick Google search usually tells me what I need to know.

[trizzie]

I am so sorry. We thought DS had a peanut allergy. They ran a blood test for seasonal and tested peanut as well. He had eaten peanuts forever without a reaction, but we started avoiding just in case. It was a long road, but 3 years later we did a food challenge and he is not allergic. In the meantime, we did carry an Epi pen. I still have one because even though he doesn't have a nut allergy, he does take allergy shots for his seasonal. I have so much empathy for you because I was so worried during these past 3 years. My advice is to find a good allergist and make sure they are well versed in food allergies. I have found that there are so many differing opinions out there among allergists as far as food (especially nut) allergies go.

[Rainyday]

My DS1 HAD a peanut allergy and he grew out of it.
The first time he had pb was at 10m and he got hives that we controlled with Benadryl and then followed up with an allergist.
We did the skin test several times and he was allergic to peanuts (no other nuts) and mackerel. We have no family history of food allergies at all.
We always had peanut butter in the house but the kids are wowbutter or sunbutter.
The allergist suggested we do the blood test when he got closer to 3yo, I think it's called UKnow and it tells you the potential severity of the reaction.
Before we did any further testing we went back for another skin test and peanut challenge @2.9m. He passed the challenge and tested negative. He is part of the 20% that grows out of the allergy. We are still supposed to carry the epi pen for a while but we have never had to use it.
Because his initial reaction to the pb was not severe the allergist thought he had a good chance of growing out of it. HTH
(He is also allergic to penicillin like dh is)
Sorry I know it sucks.

[chatterbox]

No experience, but I just wanted to say sorry. That must have been really scary

[trizzie]

There is also a new test called the component test. There are 3 (I think) components that are truly anaphylactic reactions. The blood test can tell you if he is allergic to those components. We did the test and DS was allergic to one component and it wasn't an anaphylactic one.

[zbeesma86]

I'm so sorry! That sounds super scary! No experience but hugs!

[Deleted]

No experience either, but I am sorry your have to deal with this and I hope you get some answers.

[HBirdie]

Thank you guys so much. This is a lot of really great information. It's so overwhelming and I'm trying to stay calm about it and not let my mind get too far down the road of "OMG can he ever go to someone else's house? What will we do when he goes to school? When are we going to have to teach him how to use an epi pen himself? AHHHHHHH!" His reaction definitely could've been worse, and I'm thankful it wasn't, but they warned us that repeat exposure will probably give him worse reactions every time and that's scary.

He woke up around 2am last night really fussy, and his face was starting to look like it might be swelling again and his nose was running like crazy (again). After another dose of Benadryl he was okay. Now I'm waiting on a call back from our pediatrician to get him in tomorrow.

Does insurance not usually cover epi pens? I definitely appreciate all the coupons and the info, dc2london and everyone else. I didn't know that allergy tests produced false positives and negatives, mamaalysson. :/ That's kind of scary...

[dc2london]

It depends on your plan. Our plan doesn't cover anything until you reach your deductible so I had to completely pay OOP

[diapersnwipes]

Re: insurance

When DD first got her epi pen at 1 we had crappy insurance and it cost us around $300. When we got her refill the next year with better insurance it cost $39.

[HBirdie]

Guess I should look into what it'll cost us. They expire after a year, right? How many do you usually have? One on you at all times, one at home maybe?

[dc2london]

They come in pairs and you should never separate the pairs. Always keep two with the child, at all times (sometimes one doesn't work properly or someone accidentally pens himself instead of the victim; Also, about 20% of all reactions will require a second dose of Epi so it's good to have two on hand).
We keep one in the diaper bag so it is always with Rhys.
He will also have one at school when he is in school.

They expire after one year. Since we've met our deductible this year, I'm hoping to refill before Dec 31st and I'm *hoping* it will be cheaper.

[scattered]

I'm sorry!

[HBirdie]

Oh I had no idea! Yikes. Thanks dc2london. This is really helpful.

[trizzie]

I think our epi pens (2) cost $30 with insurance.

And my dr said the scratch test yields a lot of false positives as far as good allergies go. He also told me he doesn't like to run the blood test for food unless there has been a reaction. Because sometimes it shows there is an allergy (like in my DS) and they may never react.

[mamaalysson]

Oct 23, 2014 14:13:34 GMT -5 HBirdie said:

Thank you guys so much. This is a lot of really great information. It's so overwhelming and I'm trying to stay calm about it and not let my mind get too far down the road of "OMG can he ever go to someone else's house? What will we do when he goes to school? When are we going to have to teach him how to use an epi pen himself? AHHHHHHH!" His reaction definitely could've been worse, and I'm thankful it wasn't, but they warned us that repeat exposure will probably give him worse reactions every time and that's scary.

He woke up around 2am last night really fussy, and his face was starting to look like it might be swelling again and his nose was running like crazy (again). After another dose of Benadryl he was okay. Now I'm waiting on a call back from our pediatrician to get him in tomorrow.

Does insurance not usually cover epi pens? I definitely appreciate all the coupons and the info, dc2london and everyone else. I didn't know that allergy tests produced false positives and negatives, mamaalysson. :/ That's kind of scary...

Just breath and take it one thing at a time.  He's still little, and most likely won't be apart from you in a food situation often.  And he will learn to advocate for himself - by just over 2, DD was really good about asking if things had dairy in them.  She didn't really know what it meant, but she knew that if the answer was yes, she couldn't have it.  My other advice would be to make sure everyone knows about his allergy.  We had the hardest time at family parties (especially with the holidays coming up) where well meaning aunts and uncles would try to sneak DD cookies or candies and didn't know or understand that she had an allergy.  I've seen bracelets that look like those "Livestrong" bracelets but have a big, clear graphic that informs people of an allergy.  And don't be afraid to get a little bitchy about it if you need to.  My SIL was always trying to insist that DD could have butter or goat's milk or whatever because other people she knew did fine with it even with dairy issues.  I had to go to my bitchy, mama bear place to finally shut her down.

You've got this mama.  I'm glad he's feeling better.  Allergies suck.

[usm]

I just posted because we just got DS2's allergy test results. We went for egg and randomly were told also peanut. Even though he has eaten PB with no reaction.

Good luck!

[dc2london]

one thing that I'll randomly mention that I never would have thought to check: chipotle peppers. Apparently these (or the adobo sauce) are traditionally made with crushed peanuts. We also avoid Asian restaurants with the kids bc of the risk of cross contamination. Date night is always sushi night

[penguingrrl]

No advice but wanted to send you hugs!

[diapersnwipes]

I agree. DD learned the phrase "peanuts make me sick" really young.

[Rainyday]

Another note about epi pens, we got a refill one time that expired in several months. I took it back to the pharmacy immediately and asked for one with a later date. The dchanged it no problem. Check your exp dates.

[dc2london]

On the topic of EpiPens, our allergist always hammers this point home: an expired EpiPen is better than no EpiPen. While it's important to get them refilled on time, in an emergency, any Epinephrine will do. Studies have been conducted that show that they are still up to 98% effective a year past their exp date so if that's all that's available, use it.
Apparently a 911 dispatcher advised a college student not to use an expired EpiPen once and he passed away before the paramedics arrived

[HBirdie]

Thanks mamaalysson. Seriously. That does make me feel better. I'm at home with him most of the time and I'm optimistic about being able to control what he eats. I love the bracelet idea, I'm going to look into that immediately.

dc2london and Rainyday: Good to know about the EpiPens. We have an appointment on Tuesday and I'm sure they'll tell us to get some.

I'm a little nervous about trying to find all of the hidden sources of peanuts in our lives. No more pad thai for us!

You guys are helping me feel a lot more calm about this. Thank you.

[dc2london]

I felt really scared and overwhelmed at first, and like I just wanted to keep him in the house forever but it gets better. It gets easier.