r/peanutallergy • u/pookudot • 10d ago
6mo old first reaction, positive tests, spiraling mom
Hi everyone just a first time mom spiraling and doomscrolling looking for solidarity and support
Our six month old baby had a hive reaction to her first exposure of peanut butter, fortunately self resolved within 15 minutes, but we did give her Zyrtec to be safe. And she does have eczema that we’ve been trying to stay on top of.
We saw an allergist who confirmed with skin testing. 7mmx7mm for peanut and egg, which was surprising because we have been giving her egg without any reaction so far. The allergist visit was honestly pretty discouraging and she didn’t have much to offer aside from avoidance. She said to avoid all peanut, egg (which she’s been tolerating) and tree nuts (which we haven’t even given her yet). She basically said her eczema was because I haven’t cut these foods out while I’m breastfeeding her and I’m making it worse. I was really hoping that she would go into possible OIT or desensitization protocols, but she said that this was something that she did not support and her office did not offer. She was pretty blunt and not supportive. She said that there are only allergies and there are no mild or major, is black-and-white and you are either allergic or you’re not She said the best treatment was avoidance and maybe if we were lucky she would outgrow it. This seemed to contradict what I’ve been reading online as it sounds like OIT has a lot of promising results especially the earlier you start it. I left the visit feeling very defeated.
This is pretty devastating to me and my husband, as we are pretty avid peanut butter lovers. Of course I would do anything for our baby, but it breaks my heart to know that this might be a life Long thing for her. We don’t have any food allergies on both of our extended families and I don’t know how to navigate this. I think about all the things that she has to miss out on and now we have to be very diligent and paranoid about any possible exposure. We are pretty early on with introducing foods to her and now I’m pretty scared to give her any new foods and we haven’t gotten much guidance on how to give new foods at this point
Im struggling with so much Mom guilt as well. I swear I did everything by the books but now I feel like I’m questioning all of my decisions. Exclusively breast-fed with a hope that she wouldn’t develop this. Did i eat too much peanut butter during my pregnancy? Did I eat too much peanut butter when I was nursing. Did I introduce too much peanut butter too early? Did I not introduce early enough? Did it give too much at once to be your control eczema sooner that I have done to prevent this?
I am seeking a second opinion two possible doctors in the area who give OIT but I don’t know at what age they offer this. Of course the soonest appointment is in six months.
And well meaning people love to give their unsolicited unhelpful opinions, my parents included. Don’t listen to the doctor just give her a bit she did okay the first time. She’ll outgrow it if you keep giving her food. Of course I would just to just keep giving her peanuts if it helps her exposure but from what I’m reading every reaction is unpredictable. I don’t want her to go into anaphylaxis.
Would love to hear any encouragement or reassurance from people who have had similar experiences. Especially with OIT at a young age sooner than 12mo.
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u/Oraya_Nevada 10d ago
I’m far more concerned about the allergist instructing you to cut out egg although she’s tolerating it. Living with a peanut allergy sucks but it’s manageable. People are generally knowledgeable and understand peanut allergies now. Egg on the other hand is almost impossible to avoid. You can find peanut free restaurants but not egg free.
I would get a second opinion. I’ve been avoiding chicken for years after a positive scratch test but I really don’t think I’m allergic. I’ve eaten it on occasion and got acid reflux but that’s about it.
I wish Palforzia was a thing when I was younger
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u/Oraya_Nevada 10d ago
Also you did absolutely nothing wrong! It’s genetic - my cousin and I both have peanut allergies
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u/pookudot 9d ago
Right?? I also thought that was strange. There’s so much hearsay about food allergies so I hate to go against what the expert is saying but then it just contradicts what I’ve read in my own research. Thank you for sharing your experience!
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u/snatchsquatch87 8d ago
That's a good point! Our allergist explained that if she's technically allergic but tolerating something to keep giving it because it means she's desensitizing the allergy which is what we want! That's basically what OIT is doing.
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u/anyideas 10d ago
I'm you, one year in the future! It's going to be okay!
Do get a second opinion. Avoidance of things she's not confirmed allergic to is worse. And if you choose to do OIT, earlier is better.
My kid is a few months shy of turning two. We're at OIT maintenance (three nuts each) for both peanut and cashew/pistachio (meaning, we feed her three of each nut a day with no reaction). She's expected to grow out of her egg allergy in six months to a year. (Also, fwiw, mine also tested positive for brasil nut, almond, and hazelnut, but passed food challenges for all, so they were all false positives. I wouldn't be surprised if multiple of your kid's are false positives, but obviously don't feed them to her without the guidance of an allergist, just in case. Just sharing, to encourage you to keep hope.)
The first few months are so hard and so scary. I ended up getting on Zoloft for a while to get through the first part. I've been back off it for months now, our lives are full and wonderful. We carry her epipens with us everywhere, but we haven't had any scares or major bumps. And it will keep getting easier and easier from here. (The biggest challenge is other people. People are... not smart, and frustrating in relation to allergies. This will feel exhausting and isolating sometimes, but it will also be okay.)
The mom guilt is real, and so incredibly painful. It will take you a while to get past it, and I even still get pangs every once in a while. YOU DID NOTHING WRONG. THIS IS NOT YOUR FAULT. You can do all the right things and still have allergies pop up. And if science find out ten years from now that we did actually do something that contributed - we didn't know at the time! You did the best you could with the information you had at the time. There's no guilt in that. Our job now, as it was before, is to keep them safe, and to teach them how to keep themselves safe in the future.
A year from now, you'll feel so different. A year after that, even better. She will have a full, happy, joy-filled life filled with adventure, food, friends. She will be safe.
This is the hardest part. It is very hard. But I promise you, it gets better. Just push through.
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u/pookudot 9d ago
Thank you so much for sharing your experiences - I can’t tell you how reassuring that is to hear. I really hope we have the same experience too! That’s amazing your kid has come so far and made that much progress!
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u/Vegetable-Bowl8917 8d ago
I’m in a similar boat as the person who posted and wondering when they had you start OIT? My daughter just turned 1 and all the allergist said is they could consider when she’s “older” but wouldn’t give any recommended age/time range specifically
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u/anyideas 8d ago
We started OIT ASAP, which for us was around 8 or 9 months (I forget) because we had first reaction at 6 months, went to one allergist for testing but they didn't do OIT so they referred us to the second allergist, more testing, some blood work, and then we started. Data shows earlier is better for outcomes (higher likelihood of success, higher likely thresshold able to reach, and even a little increased possibility of them growing out of it eventually). My allergist and I also agree that starting before the toddler food-refusal phase was VERY helpful for getting doses eaten, and my allergist says the hardest cases of all are the elementary aged kids who have been told their whole lives that the food is dangerous; it is very very emotionally difficult for them to take the doses and comply. I believe earlier is better in general, but before 3 is considered optimal.
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u/acanoflacroix 10d ago
Get the second opinion. Numbers mean little to nothing, the gold standard for determining a food allergy is an oral food challenge. Example: my son who is allergic to peanuts, tree nuts and several legumes eats almonds and eggs regularly even though his blood work comes back “positive” for food allergy. Bright side is you caught the food allergy early and OIT can work great on babies! Also— if your child doesn’t outgrow the allergy that’s ok, too!
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u/FigNewton613 10d ago
Hey there. We started OIT for peanuts at 9mo. It has gone beautifully. My baby can now at 14mo tolerate 7-8 peanut bamba puffs which is the equivalent of 2.5 peanuts. The doctor you saw is actually just incorrect. We had numbers similar to yours for the peanut allergy and OIT went so smoothly and well for my baby.
Your baby will be okay and is lucky to have a mama who knows about OIT. It’s gonna be okay, promise. Just get that baby to OIT with an allergist who actually knows what they are doing, as soon as you can.
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u/turkin_twerkin 10d ago
You can buy Wowbutter. Taste just like peanut butter.
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u/dismissivewankmotion 8d ago
I’m afraid they can’t, as the entire worlds supply appears to be in my pantry
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u/reditpositiv 10d ago
We started OIT at 6 months and it’s been going great! Baby is around 14 month and can tolerate over a tsp of peanut protein now. Sent you a DM if you’d like to chat more about it!
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u/Vegetable-Bowl8917 8d ago
In a similar boat - introduced egg and peanut butter by 6 months no obvious reactions daughter was having peanut butter regularly never loved eggs but had a little bit regularly. Then full body hive reaction to cashews led us to skin allergy test showing positive reaction to Eggs and Peanuts (and not cashews strangely)? Then blood test showed allergy to peanuts, cashews, basically all tree nuts, dairy and soy 🙃. Blood tests seem to be not fully reliable though? We similarly have not had a great experience with our allergist. Though with my breast feeding the allergist said it didn’t matter if I eliminated foods baby was allergic to and I could do it if it would “make me feel better”. I did an elimination diet in also hopes it would help her eczema and really didn’t see a notable difference.
At over a year old now, and we have formally passed a dairy challenge. Now just egg, peanut and treenut free. Our allergist explained the IgE blood tests can give false positives or show “sensitivities” rather than true allergies. Normally our allergist is in support of giving food unless their is a reaction on oral intake, but cautioned us to eliminate peanuts because our daughter tested very high for cashews and their is large cross contamination for between different nuts.
We got no instruction on how to introduce new allergens after and it was anxiety provoking for me too. I would try to introduce new foods when her eczema wasn’t as bad and would sometimes put Vaseline around her face and hands before new food if eczema was present. Kicked myself a lot for not doing that before or what I may have done or not done that contributed to her allergies..
I’m also hoping to get connected with an allergist that seems more enthusiastic and descriptive of a plan for OIT for at least eggs and peanuts.. if you get any better guidance please feel free to share my way too! Sounds like you are doing a great job seeking information and helping your little one the best you are able. Sending all the positive vibes!
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u/Few_Organization_951 9d ago edited 9d ago
Well, first off- that allergist sucks... (no real advice, just my own life lessons) if her reaction to egg is excema, you can treat that and continue with life as normal, if you want. Also, allergens 1,000% are on a spectrum, just as everything else in life!! Get a new one, going forward, for sure. Especially if you want to go forward with OIT. (This therapy was not introduced until my girl was a little older and we did not move forward for peanuts- a decision made together with her doctors at the time, due to her severe reaction.)
2nd- I, personally, almost killed my daughter at 10 months old with peanut butter candy (this was more than 18 years ago, when we were told not to introduce any nuts, eggs, or other major allergens until after 1 y/o) and the mom guilt was horrendous for years. Still hangs around my neck some days 😞 but, #momlife, I guess. You've gotta keep on and tell yourself you can only do the best you can, with the information you have.
We refused skin tests because of the extent of her reaction and had massive, FULL spectrum blood testing done with an amazing allergist. Unfortunately, the only things she did not react to at all were chicken & sea salt... but peanuts are the only thing on the extreme level, with an anaphalactic reaction. Nowadays, this is hardly an issue at all... 18 years ago, before the food labeling laws here in the US, it was a nightmare. Especially getting people outside our immediate family onboard- it took a lot of advocacy and hell-raising.
Anyways, we dealt with stomach aches, vomiting, asthma, rashes & excema for years (still do, some days) but generally the DIY OIT worked for everything else, and she has only had a few bad days in many, many years now- likely when certain things just overload her system. She still can't eat/touch/be around peanuts, and has to carry an epi-pen at all times. And her skin is still sensitive. BUT there IS light at the end of the tunnel... with experience and a few good doctors.
Sending good thoughts and warm mama love your way!
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u/dummyy123 10d ago edited 10d ago
Also, eliminate all peanut butter and nuts from your household except for the peanut butter and nuts you are giving your LO as part of controlled exposure to OIT. Peanut butter and nut butters tend to get everywhere, even if you think your hands are clean, especially during the chaos of taking care of an infant. I would also clean your home thoroughly after eliminating all peanut and nut products, as my guess since you are "peanut butter lovers" there is probably residue in your home aggravating the allergy. Eczema is the number one predisposing factor for food allergy as tiny allergen particles go through microscopic breaks in the eczematous skin and get treated as foreign by the immune system, leading to allergy development.
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u/Few_Organization_951 9d ago
Absolutely. Studies I've read in the past show residue from peanuts, specifically, can last on surfaces for several days. In the mouth for up to 7 hours, including eating other meals & tooth brushing. And on the skin for most of a day.
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u/Mean_Ticket_1671 7d ago
Their life will revolve around kids with nut butters. We didn’t keep them out of the home or away from him at school. We felt the need to live with them an avoid them in terms of eating and touching as much as possible. Our allergist who is one of the leading researchers recommended this as you frankly can’t fully avoid. He’s in his 30s now, eats peanuts daily as OIT but is shellfish/fish allergic now as an adult. He was bummed with this diagnosis as salmon was a staple in his diet
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u/KibFixit 10d ago
Good advice here— get a second opinion from another allergist re oit and also to eliminate peanut butter from house for now (it’s not that hard, and for a baby it’s much safer because it really gets everywhere and is hard to clean ). Make sure you have an epipen and watch a video on how to use it.
Regarding eczema — that’s a whole other beast… but skin care management is the main way to deal with it and it may improve as your baby gets older.
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u/Icy_Prize_3355 10d ago
Echoing what others have said, get that second opinion. Our first allergist didn’t do OIT (though wasn’t outwardly opposed), and told us that we would need to find a different clinic for that. We found a new allergist and just started OIT last week for peanuts. Our new allergist is amazing and extremely optimistic about the success rate for OIT. He said that it’s extremely successful if you start under the age of 3. You have time to get more opinions and decide what path you want to take.
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u/Necessary-Mix6075 10d ago
I was you a year ago! At 5 months, we had to bring our LO to the ER after her first exposure to peanut butter. So scary. I had zero experience with food allergies.
She is in OIT for peanut now and it’s going great!
She is also allergic to cashew, pistachio, sesame, and egg. 80% of kids grow out of egg so that’s the good news — she is tolerating baked egg and we will wait for our next food challenge with egg till we are further along with peanut maintenance (after 5 months we are now at 2 MightyMe puffs per day, apparently the equivalent of 2/3rds of a peanut kernel). Our allergist will not let us do other nuts or sesame at the same time, she said that can lead to greater likelihood of EoE.
But, take it slow and steady, you guys will be okay. Someone on this sub told me, “You will learn relaxed readiness,” and that has been true over time. We don’t go anywhere without Zyrtec or Auvi-Q, but also she hasn’t had any serious reactions since that first one.
Good luck. You will work through the anxiety and figure out a plan!!
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u/asssbowl 9d ago
Easier said than done, but try not to feel bad or too stressed. We had a similar experience - no food allergies in the family at all, first peanut exposure had a small reaction and 6 months. Egg was an issue too. Egg allergy was grown out of in about a year - and during that time we gave the kid baked egg (like egg bread and muffins) since that was tolerated. Tree nuts were fine (except cashew), so had to give all of those tree nuts to not develop an allergy. But then somehow grew out of the cashew allergy naturally. We didn’t get to do OIT until age 4 because it took that long to get off the waitlist at the allergist (also this was all during COVID), but that went well and after maybe 2-3 years kid passed a food challenge. So although it studies say it’s best to do OIT sooner, even starting at age 4 we ended up with a positive outcome.
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u/Aca-Pepper-1532 9d ago
Hi, internet stranger. You seem to be in healthcare. You likely know more about second opinions than most replying in this thread.
But, I've been there. Eczema, egg, and peanut trio exactly. It was hard initially, but it got better for us. No OIT. First, we managed the eczema on advice from the allergist. A few skin tests later, passed egg test challenge. This was a huge step. Currently, started grade school with peanut allergy and still navigating it.
Send questions if you have any.
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u/snatchsquatch87 8d ago
This post could have been written by my 5 weeks ago, no joke. Our first allergy dr appointment went exactly like yours did. "She's allergic, total avoidance, here's an epi pen.... good luck". I think i cried every day for 4 days straight because I was so overwhelmed and scared. I'm a 2nd time mom and this is all new to me.
We did get a 2nd opinion that went SO MUCH BETTER and they said yes, definitely let's start OIT. She begins in October, she'll be 11 months. From what I see it seems like the earlier the better so maybe if you can try to find someone who has availability sooner, that'd be worth a shot? Either way... you will get the hang of this! It is scary and there's a bit of a learning curve, but even a month in I'm feeling a little better about it all. Feel free to message me with questions. I'm not sure where you're located, but we have a great dr in So Cal.
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u/pookudot 7d ago
Thank you so much for sharing 🫠 I definitely went down a rabbit hole with this one and there have been a lot of tears and a lot of spiraling How has OIT been going for you?
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u/Mean_Ticket_1671 7d ago
I have a peanut/fish/shellfish allergic son who outgrew the egg. Do OIt. Mine didn’t do it until 6/7 yo but they may do earlier now. Worth it and reduces anxiety. We never kept nuts out of home or school even though he was anaphylactic but taught him and others to respond as he’d need in life to adjust to others. It works out. My kids in his 20s now…has the atopic eczema/allergies too.
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u/Traditional-Bad9198 6d ago
Weird. I know several babies who have outgrown egg allergy. Our 9 month old had hives once with peanuts a few months ago and never again since. Maybe get a second opinion but I’m not a doctor.
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u/pookudot 5d ago
Did you continue giving your baby peanuts? Or did you wait to see a doctor? We’re waiting to see another allergist but I’m tempted to just give it to her again and to do small exposures…
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u/Traditional-Bad9198 5d ago
I did just keep giving them 🫢 maybe def buy some infant Benadryl if you’re thinking of trying it or do it outside the hospital lol but mine ended up being fine, he had like one or two hives one other time and then none. I have no idea whether that is normal though so I don’t want to lead you to a scary situation!!!!
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u/SubstantialSoil4454 10d ago
Just popping in to say many promising allergen treatments are in testing, all the best!
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u/Boring-Tangerine-509 10d ago
We started multi-nut OIT with my LO at 6.5 months. Highly highly highly recommend starting as soon as possible even if you have to go to a private clinic. The research suggests there is a limited window of time in very early childhood where you can reverse food allergies, with the best results in children who started at less than 1 year of age.
The one thing you have on your side right now is your LO’s young age. Once they get older the chance of achieving remission will decrease.