Tree nut allergy experiences?

[noodleoo]

DD2 was just diagnosed with a cashew allergy.  We had an episode a few months ago where she threw up after eating a cashew.  I didn't think much of it, but the pedi recommended a blood test to check for an allergy.  It came back positive as a level 3 allergy, which is considered High.  I have no idea what any of this means.  When the pedi called, she prescribed epi pens, told us to avoid all tree nuts (because of possibility of cross contamination) and we have a appointment with a pediatric allergist in a month.  I'm totally freaking out and I have no idea what to do.  I never expected this, we don't have any other food allergies in the family.  I'm reading labels for food she eats with no issues and a lot of them say packaged in a facility with nuts.  Do I need to throw this all out now?  We give her Honey Bunches cereal with almonds like once a week for breakfast.  I'm so confused because I had no clue that she had an allergy and now I'm scared.  Any advice or experiences appreciated.  

[Susie]

Don't throw everything out, just make conservative choices and avoid giving her anything that has any tree nuts at all in the month between now and the allergist appointment.  You'll get a lot more insight then and can make better decisions.  Your pedi was right to Rx the epipens in the meantime, because god forbid you ever need and not have.  But don't leap to thinking an epipen Rx automatically means s/he thinks you are likely to actually need/use them, especially in the next month, or that you're already there at being anaphylaxis risk.  It's just the conservative, smart move.  I've had epipens Rx'ed to me in the past, just on the basis of a worse than average skin reaction to a bee sting and a family history of bee sting allergies, with the rationale of "what if it's worse next time?"  

As far as experiences, DD went to an allergist in January after some hives reactions, and we did the whole scratch test routine.  I was anxious about it because I have a brother with anaphylaxis reactions to tree nuts.  Hers turned out to be nothing, she is not allergic to any of the things she was eating when she got hives any of the times.  The allergist said it was sensitive, dry winter skin and bad luck.  But I get how stressful it is not knowing.  I am very wary about allergies after growing up with my brother, who was not good at label reading until a shocking-to-me age (post college).  He has had anaphylactic reactions to walnuts, pecans, hazelnuts, and we suspect he would to cashews and other tree nuts so he just avoids them all.  His built up in severity and intensity over a period of exposures over most of a decade.  It started out with just tingling/itching in his lips, and didn't get worse than that for years.  If we'd known what was going on we'd have stopped his continued exposures, but we just didn't know.  He was like 10 when it started and didn't really articulate that there was a problem.  

[coacctnative]

My DD has a peanut and cashew allergy, discovered at 15 months. I'm assuming that the pediatric allergist will do a more expansive test of all allergies. We ended up with a special pediatric epi pen that was free through a program. I always have a epi pen on me and school has two and Benadryl on hand. It was scary to witness a reaction, but ended up solving all of her skin issues (severe eczema).

The guidance we received from the pediatric allergist was to have a strict avoidance of all tree nuts except the ones she didn't have any reactions to (almond, walnut and coconut). We did find that there were several foods that are packaged in a facility with tree nuts, that didn't cause any issues. So we continued serving those. We figured out that grocery store bakery items were definite no-go for her - no matter what. I would continue serving the cereal as usual, but just be more aware. If we ever served something new, or out of the ordinary, we just did it in the morning, so we could monitor any reactions. Keep Benadryl on hand at home.

The pediatric allergist said that cashews are a common allergy because they are inherently a choking hazard for infants and toddlers.

[dreamcrisp1]

1) some kids react to May contain and some don’t. No way to know. Nuts are hard because cross contamination can be hard.

2) it’s ok. It’ll be ok. If you FB, there’s a few very helpful groups. I can PM you the names if you’d like.

My LO is anaphylactic to peanuts and cashews and allergic to hazelnut. As well as many other things. It is extremely overwhelming at first but then you learn to handle it with time. We also have 0 food allergies so the learning curve was steep. Read the labels of everything. If she hasn’t reacted to ‘May contain’ then she may be ok. Speaking to the allergist will definitely help a lot.

Always have 2 epi pens on you at all times. that’s our rule. 2 in diaper bag, 1 at home so there’s always 2 somewhere. It is scary and it is normal but I swear it gets more manageable - the anxiety. Not the fear of your baby having an allergic reaction. The pediatric allergist will give you an action plan which will help a lot with the anxiety.

[Poppy]

I know it feels overwhelming and scary now. Hugs. It will get better.

I think it's great you'll be seeing an allergist. They should definitely be able to answer your questions and help you feel confident about next steps.

My son is allergic to peanuts and we try to avoid products with a may contain where we feel it's likely that equipment would be shared (such as small time manufacturers or places where ingredients are open and could be mixed, like an ice cream shop). We usually allow "may contains" that we feel are less likely to be contaminated. Knock on wood, my son has not had a reaction from those. But probably in your case best to be conservative until you have the epi pens and have been trained on their use.

[expectantsteelerfan]

How old is your dd? I think how cautious you are depends on you and your dd's comfort level.

Ds had a few allergic reactions when he was under 1 and we were starting food (all mild) that we never figured out what they were from, and then when he was 3, he had a reaction to mixed nuts (throwing up, coughing, face turning red, hives), and then when he took a piece of my Lara bar without me knowing it a few weeks later while we were waiting for the allergy appt. We had to go to the emergency room for that one. He was tested and came back with an allergy to tree nuts, specifically pistachios and cashews (and often go hand in hand with macadamia nuts). We did avoid a lot of 'may contain' or 'processed in a facility that processes' items, and definitely avoided all actual tree nuts for a while. But after several years with no other reactions, we loosened up. He had eaten almonds and walnuts before the reactions with no problems, so we added those back in too. He's 11 now, and his dr. tells us we could do a taste test at the office to see if he's outgrown the allergy, but it's been so easy to avoid actual cashews, pistachios, and macadamia nuts that it hasn't been something ds has wanted to do.
I'm a bad allergy mom because I've also stopped even sending an epi pen with ds to school. He's old enough to ask about nuts if he's eating without me.

[noodleoo]

coacctnative , Interesting, she had eczema as a baby (and so do H and I). I wonder if that is related.

dreamcrisp1 , yes please to the PM about FB groups. How do you know which allergy is anaphylactic vs. not? Is that from the allergy testing? H made the appt with the allergist and said they will do scratch testing and it could take 2-3 hours. If you have any insight to what to expect with our first visit, I'd appreciate that too.

expectantsteelerfan , she just turned 2 in Ocbober.

I'm so scared for my poor baby. I picked up the EpiPens and was surprised it only cost $20 for 2 sets (generic). I was expecting a lot more.

ETA:  I have a stupid question.  Can I take the EpiPens out of the box they came in to put it in my diaper bag?  Or should I keep the box sealed?

[gretchenindisguise]

DD is allergic to walnuts but not other nuts. She still eats other ones.

I'm allergic to peanuts. I still real nuts (peanuts are legumes).

DS is allergic to sunflower seeds.

We're a mess 😂

Like someone said upthread, what the individual reacts to is so different. No need to throw stuff out made in the same facility, especially if she's eaten it without a reaction before. As good as we've gotten with blood tests and what not, food tests are still the gold standard.

[BeagleMama]

You've gotten great advice here, you'll get additional information from the allergist. I also learned a lot from FARE when DD was first diagnosed (peanut and tree nut).

You can totally take them out of the box. I keep DDs in a zippy clear case from Walmart along with emergency medical information.

[AdaraMarie]

My kid is allergic to peanut and some tree nuts. You should open the box and get familiar with handling the epipens in case you need to use them. If it didn't include a trainer to practice with you can usually get one online for free.
We avoid all may contains. They might be safe most of the time but there is no way to know when it is or isn't. I do not gamble on it. Especially when they are too young to understand or know how to explain if something feels off. (My DD was diagnosed at 1)
The way it was explained to me is that there is no way to know if they will have anaphylaxis or not so it is best to be prepared.
My dd is now 7 and is learning to read labels and advocate for herself. She has refused to do a food challenge, so we stay really strict.
It is also easier to just tell people "all nuts" than to try to get people to understand.

[felicity]

Hang in there. It's hard at first but it gets easier, and I feel pretty used to it by now. We found out when DS was 6 months old that he was allergic to peanuts and tree nuts, among other things.

You can take the Epipens out of the big plastic holder. I keep the pair in a clear zip pouch that fits better in
my purse. She is probably fine to keep eating foods that haven't caused a reaction, like almonds, since the real test of a food allergy is if you can eat the food (AKA a food challenge), not what is on the allergy test.

We avoid almost all may contains for nuts. There's know way to know if you would get a batch that came into contact with allergens, so even if you were fine eating it all those other times, it's possible that it just never came into contact those other times. There are a couple things that I can't find without a may contains warning that DS does eat and which I think are a low risk, but overall I avoid it.

Like AdaraMarie, our allergists have always told us there is no way to really know what will cause anaphylaxis. I'm surprised any time I hear someone say their child isn't anaphylactic to nuts, because I haven't found a doctor who will say for sure one way or another for DS.. I always tell people he is anaphylactic, since the have told us there is a high chance that it could happen, but that's all we know.

[Dznyprnces]

One note about anaphylaxis. I have been told that reactions can get more severe over time or with more exposure. My DD is allergic to peanuts. Her first reaction, at 14 months, was vomiting. She did not have another exposure until last November, when she was 10. She unknowingly ate a peanut butter filled pretzel. She told me immediately, but it took a few minutes for her to tell me she had not swallowed it, it was just sitting in her mouth. She spit most of it out, but I’m sure she swallowed at least a little. This time her reaction was itching in her tongue and throat, then they started to swell. She got an epi, and almost instantly her symptoms started fading. After we got to the hospital she developed hives over her whole torso. It took a dose of Zyrtec before those started fading. That’s why they prescribe an epi, because each reaction can be different and you never know what it will be.

[dreamcrisp1]

noodleoo, I will be back to post and PM you once I get on to my work computer. I want to write a proper response.

[tiptoetulips]

Oct 28, 2020 21:44:01 GMT -5 Dznyprnces said:

One note about anaphylaxis. I have been told that reactions can get more severe over time or with more exposure. My DD is allergic to peanuts. Her first reaction, at 14 months, was vomiting. She did not have another exposure until last November, when she was 10. She unknowingly ate a peanut butter filled pretzel. She told me immediately, but it took a few minutes for her to tell me she had not swallowed it, it was just sitting in her mouth. She spit most of it out, but I’m sure she swallowed at least a little. This time her reaction was itching in her tongue and throat, then they started to swell. She got an epi, and almost instantly her symptoms started fading. After we got to the hospital she developed hives over her whole torso. It took a dose of Zyrtec before those started fading. That’s why they prescribe an epi, because each reaction can be different and you never know what it will be.

It’s so interesting because our allergist said that it’s not true about becoming more severe with exposures.
Dd1 had a similar horrific reaction to cashews when she was about 2. We also discovered that she’s allergic to pistachios apparently they are closely related. Our allergist was fine with us continuing with other treenuts especially since she had already been eating almond and peanut products. She said if we stopped those there could possibly be an allergy developed later.
You can take the epis out of the box. A few things I didn’t know is you need to keep the epipens together if symptoms don’t subside after the first dose you need to give the other. They also cannot be exposed to extreme temps so do not leave them in your car. I would also ask about the Auvi q style they are rectangles and much less awkward to carry IMO and they talk to you like the AED.

[starburst604]

noodleoo if she’s in daycare you’ll need a separate set to have there and at our daycare I had to provide them in the box with the prescription on it. As you know L has multiple allergies, but interestingly her last tests showed she’s outgrown the cashew allergy. So there’s always hope. Of all her allergies the nut has been the most manageable because there’s so much awareness about it and labels make it pretty clear. For us egg is the tricky one and is why we’re doing oral immunotherapy for that.

I know it’s overwhelming news at first, but it’s just become part of life for us. I eventually ducked out of most allergy FB groups bc they were making me more anxious than I felt the situation really warranted. Every family has their own comfort level based on their experiences, so we don’t avoid “made in same factory” stuff and it’s not been an issue.

[court26]

You may get different opinions and advice even providers in the same office like I did! You have gotten a lot of good info in this thread.

For scratch testing they won’t want her to itch where they test (usually the back on a small child). Bring fun things for her to hold and do with her hands

Tree nuts are unique in that so many of them are on the same production lines and in the same facilities. Different people get different advice and have different comfort levels. We avoided all things that “may contain” tree nuts.

My DS was allergic to eggs, peanuts, many tree nuts and milk. It has been a long journey, but he has completed the OIT process for eggs and peanuts which he was anaphylactic to previously and reacted poorly even with scratch testing. So support is out there and science is amazing! I’m always happy to answer any questions.

[boiler717]

Lots of good advice! My son also has a cashew/pistachio allergy and had been tolerating almonds prior to diagnosis.
There are two schools of thought: continue exposure to all other tree nuts because lack of exposure to other TN may cause more allergies to develop, or avoid all TN.
Our doc had us avoid all TN at diagnosis. He said it is parent preference on choosing to avoid foods produced in the same factory — we chose to do so, and I was very diligent about determining safe brands to do. It’s okay not to do this, but some people do.
I highly recommend the Frio cases to keep your Epi pens at appropriate temperature. They work great and makes it easy to grab when going out the door.
Also teaching your kid how to advocate for themselves is huge. They need to be the ones to ask for it.

[starburst604]

Oct 30, 2020 6:42:10 GMT -5 boiler717 said:

Lots of good advice! My son also has a cashew/pistachio allergy and had been tolerating almonds prior to diagnosis.
There are two schools of thought: continue exposure to all other tree nuts because lack of exposure to other TN may cause more allergies to develop, or avoid all TN.
Our doc had us avoid all TN at diagnosis. He said it is parent preference on choosing to avoid foods produced in the same factory — we chose to do so, and I was very diligent about determining safe brands to do. It’s okay not to do this, but some people do.
I highly recommend the Frio cases to keep your Epi pens at appropriate temperature. They work great and makes it easy to grab when going out the door.
Also teaching your kid how to advocate for themselves is huge. They need to be the ones to ask for it.

Our first allergist was of the "avoid all nuts" school, but once he retired and we started to see someone else, he recommended food challenging cashew since she seems to have outgrown it because of the lack of exposure thing. Plus having a nut butter she could eat would be nice since I don't love giving her so much soy. We have yet to do it though, we've been more focused on getting through the OIT for egg but may challenge cashew/pistachio once we get further along in that. 

[sunnydays]

OIT....oral immune therapy is something to look into. I’m not sure how widely available it is and it may not be covered by insurance, but if your child has a severe nut allergy it’s worth exploring. Basically what it is is the child is given a microscopic dosage of a nut (nut protein maybe) initially and then over the next few months the dose is VERY gradually increased. This is all done through the doctors office. The body is gradually building up a tolerance.

[starburst604]

Oct 30, 2020 13:27:10 GMT -5 sunnydays said:

OIT....oral immune therapy is something to look into. I’m not sure how widely available it is and it may not be covered by insurance, but if your child has a severe nut allergy it’s worth exploring. Basically what it is is the child is given a microscopic dosage of a nut (nut protein maybe) initially and then over the next few months the dose is VERY gradually increased. This is all done through the doctors office. The body is gradually building up a tolerance.

We are doing this now for DD's egg allergy. noodleoo since you're in MA as well, it is covered the same way any specialist's office visit is. The only thing we pay for once our deductible is met is a small annual "supplies" fee for the dropper bottles they give us at each visit. There is only one OIT provider in MA and they aren't too far away from you. I'm sure you're miles from thinking about it now, but I wish I had known about it sooner - I think we'd have started it a little younger but I wouldn't have felt comfortable until she was old enough to be verbal about symptoms. 

[dreamcrisp1]

noodleoo, I am so sorry that it took so long to come back. I've been battling some severe m/s and the phone makes me sick.

1. Anaphylaxis is officially defined as a reaction by 2 or more bodily systems (i.e. hives plus vomiting or hives plus vomiting plus runny nose). For us, all our ANA responses have been vomiting, runny nose, hives, and coughing.

2. We never did scratch testing (DS was diagnosed at 6 months with allergies) but we have done blood testing and then food allergy challenges. But generally recommend bringing some of her favourite toys (and maybe even 1-2 new ones to occupy her).

With your allergist, he will prescribe an action plan that will outline what to do if there's an allergic reaction. For example, a few weeks back, my son ate something and started getting hives on his face but no vomitting. So I immediately gave him his allergy medicine (as per his action plan) and then monitored him to see if he needed an epi pen. He did not.

I personally try to give my son only things I've cooked but, of course, this is not easy. He seems to be ok with "may contain" for peanuts but we don't do a lot of it.

I am going to PM you the names of the allergy group now.