Managing peanut allergy

[Anonymous]

1) Yes carry the Epipen everywhere and make sure there is one with her at school and that you've discussed protocols with the school and the classroom teacher.

2) Do OIT!!!! Your reason is it seems like "too much work"? But you think avoidance is going to be less work? No. Avoidance is going to get harder as she gets older because past early childhood, other people are going to be far less accommodating of this allergy. Preschools, daycares, and elementary schools are generally nut free at this point and enforce those rules. But past that, people stop caring. Plus your kid's world will get bigger and she will go more places on her own. So even if her school is nut free, the odds that she might encounter peanuts, peanut butter, peanut oils, etc., even just in touching a surface where they are, are going to go way up. Staying vigilant about peanut avoidance is going to become challenging and she's going to have to do it herself more often. Whereas if you just suck it up and do OIT now, there's a very good likelihood the allergy will disappear or at least become much less concerning, which will save her years of having to be very vigilant.

Especially if you currently think just carrying an Epipen or two in your purse or having a couple conversations with the school about the allergy is too much, you are not going to want to deal with this allergy long term if you can possibly avoid it. OIT is very effective in many cases. You need to do it.

[Anonymous]

Little exposures over time build up and lead to crisis. You must carry an epi-pen and drop one off with her, always.

My nephew was just like your kid until he accidentally ate one peanut M+M; it was pastel and he thought it was a Cadbury Mini-Egg. He had to have six epi injections, steroids and was hospitalized.

Also? Not all ambulances or EMTs have epi onboard: you have to ask for it when you call 911. I know that from my camp counselor days.

You are not taking this seriously enough. At all.

[Anonymous]

OP here - thanks all for your responses, I appreciate it. I will make sure to carry around an Epi-pen at all times and look more into OIT. It's eye opening to see how seriously people take this. I don't know if my allergist was just relaxed about it, but we go and do a skin prick test every year, he confirms that my kid is still allergic, prescribes a new epi-pen and sends us on our way. It has not been an issue and we frequently go to restaurants, travel, etc. But I hear you that this can be life threatening, so I will be more diligent.

[Anonymous]

Anonymous wrote:OP here - thanks all for your responses, I appreciate it. I will make sure to carry around an Epi-pen at all times and look more into OIT. It's eye opening to see how seriously people take this. I don't know if my allergist was just relaxed about it, but we go and do a skin prick test every year, he confirms that my kid is still allergic, prescribes a new epi-pen and sends us on our way. It has not been an issue and we frequently go to restaurants, travel, etc. But I hear you that this can be life threatening, so I will be more diligent.

Vigilant, not diligent, but both work I suppose.

[Anonymous]

Anonymous wrote:Absolutely she should have an EpiPen with her! You never know if the allergy will become more intense until ... it does. If I had a kid over who had an allergic reaction I'd have my kid call 911 on speaker phone while I was jabbing the kid with the Epi pen to save her life.

Every parent hopes their kid will grow out of it, but every smart parent with a kid who has a peanut allergy has their kid have an Epi pen close by until then!

This exactly. My nephew has a peanut allergy. So far, it's mild like your DD's. But when he comes to our house, so does his Epi-pen. It lives on the kitchen counter of whatever house he is in. They've never needed to use it, because so far he just gets the itchy mouth rash. But you don't want to know it's developed into anaphylaxis and NOT have the epi-pen.

[Anonymous]

OP, thank you for responding and confirming that you are going to start taking this much more seriously. That’s good to hear, but I urge you to really be vigilant, really do reframe your thinking about this.

I had a neighbor who had a fish (not shellfish) allergy, and really didn’t take it seriously at all. It was a specific fish, and he didn’t heed the allergist’s advice to treat ALL fish as a no-no. He nearly died from eating soup from an Asian restaurant, because he didn’t realize the broth was made from boiling down many different kinds of fish and seafood.

I’m talking he nearly died; he didn’t have his epi-pen, the ambulance got there quickly but not immediately, and they had to perform an emergency tracheotomy.

A DOCTOR at Disney clearly communicated with staff and was assured that all her food was allergen-free, and died even after giving herself an epi and demanding an ambulance. The staff was not careful and clear enough.

You have GOT to take this seriously. Life and death.

[Anonymous]

Anonymous wrote:OP here - thanks all for your responses, I appreciate it. I will make sure to carry around an Epi-pen at all times and look more into OIT. It's eye opening to see how seriously people take this. I don't know if my allergist was just relaxed about it, but we go and do a skin prick test every year, he confirms that my kid is still allergic, prescribes a new epi-pen and sends us on our way. It has not been an issue and we frequently go to restaurants, travel, etc. But I hear you that this can be life threatening, so I will be more diligent.

You need a better allergist who follows the updated guidelines NUMBER 1.

Blood should be drawn to see if her levels have decreased enough to warrant an in-hospital challenge or even if she warrants OIT or some other program. You want your kid to be challenged (safely) on their allergen because if she can handle cross contamination or even 1/8tsp of peanut butter then shes less likely to have a reaction upon accidental ingestion or exposure through cross contact or god forbid her partner or child (down the line) has peanut butter and they kiss her. In my allergy group a mom posted about her daughter needing to go to the hospital because she sipped from the same straw as her husband who had egg during the meal where he drank that juice, her daughters allergy is egg.

Two the fact that you dont carry the EpiPen around is seriously negligent. Note that Epis need to be kept in a specific temp range so you cant take it outdoors or leave it in the car unless you have a special pack to keep it regulated. Do you know how to check if the Epi is still good? It shouldnt be cloudy or have particles in it. It must be clear. Take to pharmacist to check if you ever have concerns. Make sure you have an Epi at all times and make sure the school does. Get permission for your kid to self carry and TEACH HER HOW TO DO IT. There is a trainer with most Epis now.

Also you need to check out the FARE guidelines. If she has widespread hives, not just localized, its considered anaphylaxis. Your allergist should be completing or given you an allergy action plan for when to use zyrtec, when to use epi if zyrtec doesnt work, and when to go straight to an epi. If they arent doing that then AGAIN FIND A NEW ALLERGIST. https://www.foodallergy.org/living-food-allergy/food-allergy-essentials/free-downloadable-resources

If they havent explained that its not just hives or not just wheezing, see the caps above. Also, Benadryl is no longer suggested. If they suggest Benadryl then see the caps above. These are warning signs that your allergist is not up to date on best practices.

[Anonymous]

Anonymous wrote:You need to carry at least two Epi pens everywhere, in case one malfunctions or the ambulance is delayed in coming. As soon as the child is able they need to carry two themselves. Be sure they know how to use them. Practice regularly with the trainer.

We always also have albuterol and Benadryl.

Ask the allergist when to use. One PP said use upon two symptoms. Ours said use upon confirmed exposure even if asymptomatic.

If you use epinephrine the person needs to go by ambulance to the emergency room.

Epi pens are not magic talismans. They don’t always work. They sometimes need to be repeated.

Your child needs to learn to self-advocate about allergies as soon as possible. Teach them to read every label every time. Ingredients change. No unlabeled or homemade outside snacks. Send your own treats to school. Be very particular in restaurants. Be aware of potential language issues — we were assured that a bakery product contained no nuts. Then informed “only nut flour” when we asked a second time.

They need to be aware of environmental contamination. Like the kid in class who brings a peanut butter sandwich and then uses a finger to scrape out and eat the peanut butter. Or the contaminated trash in a cafeteria trash can. Or the person one row away in an aircraft who is eating peanuts.

I believe there is a sensitivity-reducing shot and desensitization treatments. We are not there yet, so I leave it to others with knowledge to discuss them.

+100

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here - thanks all for your responses, I appreciate it. I will make sure to carry around an Epi-pen at all times and look more into OIT. It's eye opening to see how seriously people take this. I don't know if my allergist was just relaxed about it, but we go and do a skin prick test every year, he confirms that my kid is still allergic, prescribes a new epi-pen and sends us on our way. It has not been an issue and we frequently go to restaurants, travel, etc. But I hear you that this can be life threatening, so I will be more diligent.

You need a better allergist who follows the updated guidelines NUMBER 1.

Blood should be drawn to see if her levels have decreased enough to warrant an in-hospital challenge or even if she warrants OIT or some other program. You want your kid to be challenged (safely) on their allergen because if she can handle cross contamination or even 1/8tsp of peanut butter then shes less likely to have a reaction upon accidental ingestion or exposure through cross contact or god forbid her partner or child (down the line) has peanut butter and they kiss her. In my allergy group a mom posted about her daughter needing to go to the hospital because she sipped from the same straw as her husband who had egg during the meal where he drank that juice, her daughters allergy is egg.

Two the fact that you dont carry the EpiPen around is seriously negligent. Note that Epis need to be kept in a specific temp range so you cant take it outdoors or leave it in the car unless you have a special pack to keep it regulated. Do you know how to check if the Epi is still good? It shouldnt be cloudy or have particles in it. It must be clear. Take to pharmacist to check if you ever have concerns. Make sure you have an Epi at all times and make sure the school does. Get permission for your kid to self carry and TEACH HER HOW TO DO IT. There is a trainer with most Epis now.

Also you need to check out the FARE guidelines. If she has widespread hives, not just localized, its considered anaphylaxis. Your allergist should be completing or given you an allergy action plan for when to use zyrtec, when to use epi if zyrtec doesnt work, and when to go straight to an epi. If they arent doing that then AGAIN FIND A NEW ALLERGIST. https://www.foodallergy.org/living-food-allergy/food-allergy-essentials/free-downloadable-resources

If they havent explained that its not just hives or not just wheezing, see the caps above. Also, Benadryl is no longer suggested. If they suggest Benadryl then see the caps above. These are warning signs that your allergist is not up to date on best practices.

Thanks for the info!

[Anonymous]

OP, the good news is that you reached out on DCUM because it occurred to you that you needed to do more for your child. I’m glad to hear that you are going to take the advice given and will always have two epi-pens with your child at all times. I agree with others, you should look for a new allergist. I can not imagine having an allergist who is so unconcerned about what can be a life threatening allergy. Please, find a new one. Also, be sure to teach your child how to use EpiPens and have her practice every year on an apple when you replace her EpiPens. I would suggest you read The Peanut Allergy handbook. In addition, Food allergy treatment has changed so much in the past few years. Please discuss the possibility of OIT with your new allergist. It could end up being life changing and life saving for your child. Best wishes!

[Anonymous]

Adding for emphasis: not “an” EpiPen. At least two.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here - thanks all for your responses, I appreciate it. I will make sure to carry around an Epi-pen at all times and look more into OIT. It's eye opening to see how seriously people take this. I don't know if my allergist was just relaxed about it, but we go and do a skin prick test every year, he confirms that my kid is still allergic, prescribes a new epi-pen and sends us on our way. It has not been an issue and we frequently go to restaurants, travel, etc. But I hear you that this can be life threatening, so I will be more diligent.

You need a better allergist who follows the updated guidelines NUMBER 1.

Blood should be drawn to see if her levels have decreased enough to warrant an in-hospital challenge or even if she warrants OIT or some other program. You want your kid to be challenged (safely) on their allergen because if she can handle cross contamination or even 1/8tsp of peanut butter then shes less likely to have a reaction upon accidental ingestion or exposure through cross contact or god forbid her partner or child (down the line) has peanut butter and they kiss her. In my allergy group a mom posted about her daughter needing to go to the hospital because she sipped from the same straw as her husband who had egg during the meal where he drank that juice, her daughters allergy is egg.

Two the fact that you dont carry the EpiPen around is seriously negligent. Note that Epis need to be kept in a specific temp range so you cant take it outdoors or leave it in the car unless you have a special pack to keep it regulated. Do you know how to check if the Epi is still good? It shouldnt be cloudy or have particles in it. It must be clear. Take to pharmacist to check if you ever have concerns. Make sure you have an Epi at all times and make sure the school does. Get permission for your kid to self carry and TEACH HER HOW TO DO IT. There is a trainer with most Epis now.

Also you need to check out the FARE guidelines. If she has widespread hives, not just localized, its considered anaphylaxis. Your allergist should be completing or given you an allergy action plan for when to use zyrtec, when to use epi if zyrtec doesnt work, and when to go straight to an epi. If they arent doing that then AGAIN FIND A NEW ALLERGIST. https://www.foodallergy.org/living-food-allergy/food-allergy-essentials/free-downloadable-resources

If they havent explained that its not just hives or not just wheezing, see the caps above. Also, Benadryl is no longer suggested. If they suggest Benadryl then see the caps above. These are warning signs that your allergist is not up to date on best practices.

What’s the issue with Benadryl?

[Anonymous]

Anonymous wrote:You need to carry at least two Epi pens everywhere, in case one malfunctions or the ambulance is delayed in coming. As soon as the child is able they need to carry two themselves. Be sure they know how to use them. Practice regularly with the trainer.

We always also have albuterol and Benadryl.

Ask the allergist when to use. One PP said use upon two symptoms. Ours said use upon confirmed exposure even if asymptomatic.

If you use epinephrine the person needs to go by ambulance to the emergency room.

Epi pens are not magic talismans. They don’t always work. They sometimes need to be repeated.

Your child needs to learn to self-advocate about allergies as soon as possible. Teach them to read every label every time. Ingredients change. No unlabeled or homemade outside snacks. Send your own treats to school. Be very particular in restaurants. Be aware of potential language issues — we were assured that a bakery product contained no nuts. Then informed “only nut flour” when we asked a second time.

They need to be aware of environmental contamination. Like the kid in class who brings a peanut butter sandwich and then uses a finger to scrape out and eat the peanut butter. Or the contaminated trash in a cafeteria trash can. Or the person one row away in an aircraft who is eating peanuts.

I believe there is a sensitivity-reducing shot and desensitization treatments. We are not there yet, so I leave it to others with knowledge to discuss them.

I have a 12 year old peanut allergic kid and agree with most of this with a couple caveats and can add some info about OIT.

As to bolded, some kids really are not this sensitive to peanuts in their environment. Mine isn't. We eat peanut butter in our household. My kid has zero sensitivity to being near peanuts. I understand some kids do. But this is an added level of hyper-vigilance that isn't necessary for some kids.

We did the OIT and it worked. The part I didn't anticipate is my child HATES HATES HATES the taste of peanuts. This makes sense. Her body is trained to really dislike the thing that is going to make her sick. However, when you get to the end the maintenane is eating some amount of peanut daily. We tried all vehicles. The peanut, some peanut butter, a peanut m&m, a reeses pieces. She hated all of them. She was about 10 at the time we did this. It was a nightly battle and we just gave up. I could not see sustaining forcing her to eat something she hated. I think with an older kid it could be eaiser.

[Anonymous]

Anonymous wrote:

Anonymous wrote:You need to carry at least two Epi pens everywhere, in case one malfunctions or the ambulance is delayed in coming. As soon as the child is able they need to carry two themselves. Be sure they know how to use them. Practice regularly with the trainer.

We always also have albuterol and Benadryl.

Ask the allergist when to use. One PP said use upon two symptoms. Ours said use upon confirmed exposure even if asymptomatic.

If you use epinephrine the person needs to go by ambulance to the emergency room.

Epi pens are not magic talismans. They don’t always work. They sometimes need to be repeated.

Your child needs to learn to self-advocate about allergies as soon as possible. Teach them to read every label every time. Ingredients change. No unlabeled or homemade outside snacks. Send your own treats to school. Be very particular in restaurants. Be aware of potential language issues — we were assured that a bakery product contained no nuts. Then informed “only nut flour” when we asked a second time.

They need to be aware of environmental contamination. Like the kid in class who brings a peanut butter sandwich and then uses a finger to scrape out and eat the peanut butter. Or the contaminated trash in a cafeteria trash can. Or the person one row away in an aircraft who is eating peanuts.

I believe there is a sensitivity-reducing shot and desensitization treatments. We are not there yet, so I leave it to others with knowledge to discuss them.

I have a 12 year old peanut allergic kid and agree with most of this with a couple caveats and can add some info about OIT.

As to bolded, some kids really are not this sensitive to peanuts in their environment. Mine isn't. We eat peanut butter in our household. My kid has zero sensitivity to being near peanuts. I understand some kids do. But this is an added level of hyper-vigilance that isn't necessary for some kids.

We did the OIT and it worked. The part I didn't anticipate is my child HATES HATES HATES the taste of peanuts. This makes sense. Her body is trained to really dislike the thing that is going to make her sick. However, when you get to the end the maintenane is eating some amount of peanut daily. We tried all vehicles. The peanut, some peanut butter, a peanut m&m, a reeses pieces. She hated all of them. She was about 10 at the time we did this. It was a nightly battle and we just gave up. I could not see sustaining forcing her to eat something she hated. I think with an older kid it could be eaiser.

As to the follow up bolded, without claiming any scientific/literature based special knowledge, I suggest it is extremely dangerous to be casual about any level of potential exposure. I don’t think it is “hyper vigilance.”

[Anonymous]

Anonymous wrote:

Anonymous wrote:You need to carry at least two Epi pens everywhere, in case one malfunctions or the ambulance is delayed in coming. As soon as the child is able they need to carry two themselves. Be sure they know how to use them. Practice regularly with the trainer.

We always also have albuterol and Benadryl.

Ask the allergist when to use. One PP said use upon two symptoms. Ours said use upon confirmed exposure even if asymptomatic.

If you use epinephrine the person needs to go by ambulance to the emergency room.

Epi pens are not magic talismans. They don’t always work. They sometimes need to be repeated.

Your child needs to learn to self-advocate about allergies as soon as possible. Teach them to read every label every time. Ingredients change. No unlabeled or homemade outside snacks. Send your own treats to school. Be very particular in restaurants. Be aware of potential language issues — we were assured that a bakery product contained no nuts. Then informed “only nut flour” when we asked a second time.

They need to be aware of environmental contamination. Like the kid in class who brings a peanut butter sandwich and then uses a finger to scrape out and eat the peanut butter. Or the contaminated trash in a cafeteria trash can. Or the person one row away in an aircraft who is eating peanuts.

I believe there is a sensitivity-reducing shot and desensitization treatments. We are not there yet, so I leave it to others with knowledge to discuss them.

I have a 12 year old peanut allergic kid and agree with most of this with a couple caveats and can add some info about OIT.

As to bolded, some kids really are not this sensitive to peanuts in their environment. Mine isn't. We eat peanut butter in our household. My kid has zero sensitivity to being near peanuts. I understand some kids do. But this is an added level of hyper-vigilance that isn't necessary for some kids.

We did the OIT and it worked. The part I didn't anticipate is my child HATES HATES HATES the taste of peanuts. This makes sense. Her body is trained to really dislike the thing that is going to make her sick. However, when you get to the end the maintenane is eating some amount of peanut daily. We tried all vehicles. The peanut, some peanut butter, a peanut m&m, a reeses pieces. She hated all of them. She was about 10 at the time we did this. It was a nightly battle and we just gave up. I could not see sustaining forcing her to eat something she hated. I think with an older kid it could be eaiser.

OP here - interesting, that makes complete sense. Every time my kid sees something with peanuts in it she kind of recoils so I can see her hating it too.

I would love to hear about your experience with OIT. Was it a smooth process? Any advice or things to be aware of? How were all the years before OIT - did your kid have any accidental exposures?