Children w/ Food Allergies: Support

[sphenequeen]

Hi All,

My 14 month old was recently diagnosed with an egg allergy. We visited the allergist yesterday and he was prescribed an Epipen, which really drove the reality of the situation home. I am sure that there are many people on this forum who have to deal with a child with food allergies - or may even have food allergies themselves. We are meeting with a nutritionist next Thursday.

For those of you dealing with this subject, do you have any resources you could share? Any cookbooks you recommend?

Thanks so much...

 

[Logan Sapphire]

My son has peanut allergies and we avoid tree nuts as well because he once tested positive. I have lots of thoughts but am commuting home and on an iPhone. Before I forget, you should always carry at least two epis in case one fails, you misuse it, or there's a biphasic reaction. Will write more later.

 

[sphenequeen]

Thank you, Logan. We have two in his diaper bag, which we have on us at all times. The allergist informed us of the importance of the 2 Epipens. I am looking forward to your response!

 

[Rosebloom]

My little one is allergic to dairy and soy but thankfully his response isn't anaphylactic but GI related instead (awful vomiting and diarrhea and general inflammation). It's hard. But a year into this, it's much easier than at the start. I have my stable of recipes and know which foods we can count on to be dairy and soy free (soy hides in so much stuff!). I'm breastfeeding so I am also on this diet until he weans.

I think the two things I didn't anticipate when I first started dealing with all of this was how expensive it would be (Whole Foods is a godsend for providing non-allergenic options but it is so expensive) and how much he would want to try foods he can't eat. At playgroup today he had a meltdown because he couldn't eat what the other kids could. My little guy is 15 months old so not old enough to understand obviously.

It's hard but thank goodness we are dealing with this now and not 30 years ago! There are so many more options and people are much more accommodating and understanding than in the past.

Keep us posted. I wish I had thought to make a similar post when I first found out - I could certainly have used the support!

Lots of dust!

 

[sphenequeen]

Thank you for sharing, Rosebloom!

 

[marym]

Hi Sphenequeen-

My 22 month old daughter is also allergic to eggs, and is showing signs of a mustard allergy as well. As far as the egg allergy goes,
we obviously look at food labels extremely carefully, and since I like to bake, I have learned that you don't really need eggs in most cake/cookie recipes. I am also gluten free for health reasons, so cooking in our house has definitely become more challenging, but I find that I can cook most any recipe without eggs as long as I use some other binder. There is a product called Ener-g egg replacer that is very easy to use that will bind baked goods together without eggs. (It is made with potato starch, I believe). It's a powder that you just mix with warm water. I found it at Whole Foods, but I think other grocery stores carry it, as well. Banana works well as a binder, as does flax seed. I have enjoyed the challenge of baking tasty things without eggs. It's totally doable.

Eating out is challenging, however. Be very careful and don't be afraid to be a "pest" and ask alot of questions, even making your server get the manager to check on something before you order it. If the restaurant we are going to is a larger chain type of restaurant, I try to download their allergy info from the net and study it before we even get there. Watch out for pizza crust, which is sometimes brushed with egg whites. Ice cream has eggs in it quite often, especially more "gourmet" ice creams. I misread a menu at a supposed "health food restaurant" and fed my daughter an ice cream dessert that had eggs. The menu designated the item as VEG which I thought meant vegan (no animal products of any kind) when it actually stood for vegetarian! So like I said, question things carefully at restaurants and don't be afraid to ask questions so that you are totally comfortable with what you are ordering.

My daughter is still young, and I'm holding out hope that she will outgrow this allergy. I understand that a lot of kids can eat baked egg and eventually do a baked egg challenge with their allergist to test it out. (Never do a challenge without doctor supervision). I hate that she has these allergies and I try not to dwell on it, but it's something that you always have to stay on your toes about. I'm already worried about when she goes to school and I can't control every single food she is exposed to. Sigh.

Good luck and always carry the Epi pen and benadryl, just in case.

 

[amc80]

Before I forget, you should always carry at least two epis in case one fails, you misuse it, or there's a biphasic reaction. Will write more later.

Thanks for this. I'm allergic to bees (and wasps, yellow jackets, etc.) and I always carry only one epi. Probably smarter to have two.

 

[Logan Sapphire]

We always have Benadryl with us, as well as the 2 epi-pens. We carry the pre-measured spoons, which is a lot easier than dealing with a bottle. Unfortunately, I've heard that most brands have stopped making them for some reason, even though you'd think the rise in food allergies would encourage them to keep manufacturing this kind of stuff I know Benadryl stopped, but you could still find generic versions at CVS and Walgreens, but have now heard that both these places are also out of stock. Just keep an eye out and periodically check for them.

You may have heard about the 13 year old who recently died after biting into a rice krispie treat iced with peanut butter. She and her parents (who were with her) did what they had been told to do- wait and observe symptoms before giving the epi. Apparently she was fine for the 20 mins, and then died very shortly after, even though they gave her 3 epis. Many people are saying that they give an epi after ANY known ingestion, regardless of whether ana symptoms are observed. My son's daycare does this and before hearing about this girl, it seemed very extreme to me, but now I'm rethinking what to do. At the very least, another conversation with the allergist is warranted. My friend heard an allergist say that people have hang ups about using needles and if epinephrine came in liquid or pills, people would have a lot less hesitation in using it.

Check the Epi-Pen and Auvi-Q (the new competitor) websites- they occasionally run coupons that are real money savers. I know Auvi-Q is running a promotion right now where you get up to three twin packs per refill for $0 (depending on your copay and insurance), for an unlimited amount of refills (again per your prescription) till the end of the year. Epi-Pen was running a similar promotion recently and may still be. I am actually going to pick up the new Auvi-Q for my son today and can update this thread with my thoughts on it- it's small and supposed to be easier to use.

Keep in mind that the Epi-Pens expire yearly and that they are supposed to be kept at a certain temperature (good to bear in mind if you're going to the pool or beach). We own a lot of those things- 2 at daycare, 2 at our house that goes with us when we go out, 2 in my husband's work briefcase, 2 in my own briefcase, and an extra set in the closet. We practice on oranges when the pens have expired.

My son is 3.25 and has started to get much better and gracious about accepting that he can't eat what others can. I try to mitigate the disappointment by carrying safe treats for him, especially shelf stable items like lollipops or gummies, etc. He now reminds me to tell restaurants about his peanut allergy. When he goes to parties, I call the parents and ask what's on the menu so that I can try to replicate it as much as possible with his own food (he's also vegetarian so to some extent, we're used to bringing our own food). It's definitely sad to see him waddle up to a bakery display and ask if it's safe for him to eat...he's started sighing heavily and saying with despair, "Everything has peanuts in it!" It helps him to hear me asking if things are safe, etc. My 5 year old is also an advocate for him, as much as a 5 year old can be.

I don't know anything about the egg allergy world, but in the nut allergy world, there's a site called Peanut-Free Planet that sells all items safe for those allergies. A lot of their stuff is imported from Canada and I buy stuff like safe Kit Kats and other chocolate (since safe chocolate is really hard to find). You might want to check it out- I think some of their stuff is egg-free. Enjoy Life is a pretty widely available brand that is top 8 allergen-free that works well in a pinch if you need to provide treats.

Because we're vegetarian, we send most of his lunch to daycare. Every container that gets sent in has a label that says his name, my phone number, his allergy, and what to do in case of a reaction. You will need to decide on what your level of comfort is re: cross contamination. I don't know if products are often cross contaminated with eggs, but peanuts and treenuts have this issue. Personally, we do not allow him to eat anything that says "may contain traces of peanuts/treenuts" or "manufactured on shared equipment with peanuts/treenuts." I am more open to "manufactured in same facility with treenuts" if I can call and verify their production line cleanings, etc.

If I can think of anything else, I'll be sure to post.

 

[sphenequeen]

Hi Logan,

Thank you for all of this, especially because as of this morning, we got the results that he has a peanut allergy too (tree nuts tested negative, and also shellfish). I am sick to my stomach. The doc did say that she cannot confirm his results since he has never eaten peanut butter and we rarely eat it ourselves, but we have to be diligent about avoiding it until his next test in one year.

I have a prescription for 2 epis, which I am keeping in his bag. I will see if I can get more, otherwise I will have to buy them outside of my healthcare plan.

I appreciate all of the support. I am allowing myself the afternoon to be a bit emotional about this, and then it's time to be mama bear.

Thank you all for the support and advice.

 

[Rosebloom]

I'm so sorry to hear that it's peanuts too!! That just sucks. Hang in there.

 

[Skippy123]

My boys are allergic to Peanut/tree nuts and Sesame seeds/hummus and one is allergic to Eggs.

How we found out, swelling/hives to Peanuts/tree nuts and Hummus.

Eggs test positive on RAST test. We are still feeding Miles foods with eggs cooked in them. I will say the RAST test does give false positives but we haven't given him egg on its own. The Allergist said banana bread (cooked w/eggs in it) will help desensitize him.


We do carry Epi Pens with us. I have food allergies too and carry the adult size epi pen.

*********Epi pens are $0 copay this year, go to their website so you don't have to pay for one; it is there anniversary year.********

 

[Skippy123]

Hi Logan,

Thank you for all of this, especially because as of this morning, we got the results that he has a peanut allergy too (tree nuts tested negative, and also shellfish). I am sick to my stomach. The doc did say that she cannot confirm his results since he has never eaten peanut butter and we rarely eat it ourselves, but we have to be diligent about avoiding it until his next test in one year.

I have a prescription for 2 epis, which I am keeping in his bag. I will see if I can get more, otherwise I will have to buy them outside of my healthcare plan.

I appreciate all of the support. I am allowing myself the afternoon to be a bit emotional about this, and then it's time to be mama bear.

Thank you all for the support and advice.

kids test positive to foods and could possibly not be allergic if it was a blood RAST test. I am not saying to test it out, but saying, hang in there and hopefully it is a False positive. Or did you find out with a scratch test? I hear the scratch test is more reliable.

 

[Rosebloom]

Sphene queen and Logan - were your kidos preemies? I know Skippys were and mine was so just curious.

 

[Skippy123]

Sphene queen and Logan - were your kidos preemies? I know Skippys were and mine was so just curious.

they don't know why there is an increase in the US. I will say the link is more so hereditary. My father, sister and myself have food allergies. Do you happen to have food allergies in your family?

This is a magazine I sometimes read with helpful tips. http://allergicliving.com/

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I am sorry to hear of all the moms dealing w/food allergies Rosebloom, Sphene, Logan and others in this thread! dust they all grow out of it.

 

[amc80]

*********Epi pens are $0 copay this year, go to their website so you don't have to pay for one; it is there anniversary year.********

Thank you for this! I just registered and got my card. I have a prescription waiting to be filled so this is perfect.

 

[Skippy123]

*********Epi pens are $0 copay this year, go to their website so you don't have to pay for one; it is there anniversary year.********

Thank you for this! I just registered and got my card. I have a prescription waiting to be filled so this is perfect.

sure, I registered for one and they mailed them and I lost them in the house so I noticed there was a print option so then i was able to use mine that way, phew!!!! I wish they offered this every year, as they are expensive!!!!

Logan, we carry benadryl but i will look for the spoons, thanks!!!

Rosebloom I will say that due to prematurity that my son spent a week in the hospital due to viral induced asthma; the doctor said some preemies lungs can have problems since they weren't given the time in utero that full term babies get. you will have to keep me posted if the same is for preemies and allergies.

 

[Rosebloom]

I am super lucky to work with one of the top pediatric GIs in the country. She agrees with all the literature that there is not a known cause of the huge surge - I just sometimes wonder about prematurity. We actually test again tomorrow. I'm praying and hoping it goes well!

 

[sphenequeen]

My son was full term. I did eat eggs and peanut butter during my pregnancy though and have eaten both while nursing and there has been no issue there. I am going to stop eating both now since I am still nursing and it is not worth the risk.

SKIPPY -
My allergist said there is no way to desensitize someone with a food allergy, they simply do not build up a tolerance and the next reaction can me exponentially worse than the one before - just something to think about. Previous to testing, I fed DS foods with egg as an ingredient (baked goods, etc) and he had no reaction, but I will be refraining from giving him anything with fresh eggs as an ingredient as per his doctor.

 

[Skippy123]

My son was full term. I did eat eggs and peanut butter during my pregnancy though and have eaten both while nursing and there has been no issue there. I am going to stop eating both now since I am still nursing and it is not worth the risk.

SKIPPY -
My allergist said there is no way to desensitize someone with a food allergy, they simply do not build up a tolerance and the next reaction can me exponentially worse than the one before - just something to think about. Previous to testing, I fed DS foods with egg as an ingredient (baked goods, etc) and he had no reaction, but I will be refraining from giving him anything with fresh eggs as an ingredient as per his doctor.

the thing about the desensitization is a HUGE debate among the medical community. My neighbor is an Allergist (not our Allergist) but he talked on this. Some think it is super dangerous and others don't. (you will actually find BIG Debates on Allergy boards about this topic).

True desensitization is done in the doctors office, not to be confused with what we feel is safe already for Miles. Did your Allergist do a scratch test for egg or just a blood test or both? Yeah we don't give fresh eggs, our Allergist said baked goods so that is what we are doing since Miles seems fine. I am no way suggesting you do the same.

eta: also we had a reaction, Hives, so we are no way giving them any peanuts/nuts/sesame in any shape or form.

 

[Logan Sapphire]

Sphene queen and Logan - were your kidos preemies? I know Skippys were and mine was so just curious.

No, my son was full- term at 39 weeks.

I know this sounds terrible, but I have two theories. My son is sort of this miracle baby- some of you might remember that both my husband and I had infertility and we were advised to do IVF but adopted instead. Shortly after we brought our daughter home, I got pregnant quite by surprise. I've always wondered if there wasn't something a bit defective with the sperm and egg that's caused his health woes (ear tubes, pulmonary issues, etc). My second theory is that he didn't get enough colostrum as a newborn because the day after we were discharged from delivery, he went back into the hospital with jaundice. Because he was so young, I was barely making colostrum and had to try to pump whatever I could because he couldn't nurse since he was in the light and couldn't be removed from it. And then I ended up exclusively pumping which adds to the confusion.

I don't think that all ART babies or all formula-fed babies will have food allergies by any means, just that I wonder if those two factors played a big role with my son. There is no history of food allergies on either side; this came out of left field completely.


Sphene- as your son gets older, freeze safe cupcakes for when he goes to parties or you need a cupcake or cake-like treat last minute.

BTW, the pharmacy had said the Auvi-q would be ready today but it wasn't. Grrr....

 

[Logan Sapphire]

Also, with desensitization, I thought there were limits on who could do it- you had to have a low enough something or other to be considered eligible to try it?

Also, my son initially tested positive for pecans (skin test) so we avoided all treenuts. His next skin test showed no reaction to pecans or any other treenuts. The allergist said it's possible the 1st test was either a false positive or that he grew out of the allergy because it was initially mild. We still avoid treenuts though. He's had reactions to ingestion and contact with peanuts so we definitely know something is there.

The whole thing is very confusing

 

[marym]

Logan and Skippy- Thanks for the info on the free co-pay. I am about to refill as well, so this is wonderful!

I also wanted to add that a few months back I read an article online about Dr Kari Nadeau at Stanford. She has had success with curing kids of their food allergies by giving them small amounts of what they are allergic to and gradually building up the amount until they are able to tolerate the food without a reaction. (I guess this would be the desensitization you were previously discussing) Her program is called SAFAR, and there are trials that eligible kids can participate in. Here is a link, if anyone is interested in looking into it. It gives me hope that doctors might be able to cure these allergies in the near future.


http://foodallergies.stanford.edu/

 

[Skippy123]

Logan, hmm that is interesting. if you don't mind me asking what kind of pulmonary issues? My son ended up in the hospital due to possible viral induced asthma, super scary.

Yes, I hear that it is more likely for kids to outgrow allergies other than peanuts. I guess peanuts are a smaller chance of outgrowing. That is great to hear your little one no long has the nut allergy.

Marym, my Allergist said that he feels in the future there will be amazing things they can do to desensitize. Right now he feels it is risky but I will look at the link. I think it does help that lots of schools are peanut free/nut free. thanks for posting that.
eta: I just watched, that is interesting; I have actually had 2 Anaphylactic reactions so I understand how scary it can be. I will say I did know someone who could eat peanuts and bam over time couldn't and had an anaphylactic reaction so I am curious about this. I do know a friend did a similar therapy in Denver and helped her son get over his egg and milk allergy. I hope they do come up with ways to help people get over food allergies. thanks for sharing.

 

[sphenequeen]

Sphene queen and Logan - were your kidos preemies? I know Skippys were and mine was so just curious.

they don't know why there is an increase in the US. I will say the link is more so hereditary. My father, sister and myself have food allergies. Do you happen to have food allergies in your family?

This is a magazine I sometimes read with helpful tips. http://allergicliving.com/

---------------------------------------------------------------------------------------------------------------------------
I am sorry to hear of all the moms dealing w/food allergies Rosebloom, Sphene, Logan and others in this thread! dust they all grow out of it.

My son has been extraordinarily healthy (one mild cold after his 1st birthday and no fever ever) so this has been quite a surprise. Nobody in our family has any food allergies. We had him tested for egg allergy after he broke out in hives after eating scrambled eggs. The test confirmed what we suspected. Then, we visited my in-laws a few weeks ago and my MIL picked up DS after cooking French toast (she only rinsed her hands unbeknownst to me) and he had hives everywhere her hands were. It was scary but they went away after a dose if Benadryl. This last incident prompted me to get a referral to the allergist where he underwent more blood work. I was warned about false positives, but I would rather be overly cautious then to inadvertently hurt my child.

The French toast incident also made me realize that when you tell someone your child has an allergy to a food, they don't always understand how serious it is. Now I understand how important it is to stress to people how a food allergy could be a life or death situation so that they can be extra careful around your child.

 

[Logan Sapphire]

Logan, hmm that is interesting. if you don't mind me asking what kind of pulmonary issues? My son ended up in the hospital due to possible viral induced asthma, super scary.

Yes, I hear that it is more likely for kids to outgrow allergies other than peanuts. I guess peanuts are a smaller chance of outgrowing. That is great to hear your little one no long has the nut allergy.

Skippy, can you tell us about what an ana reaction feels like? I am so worried that I won't be able to recognize one in my son.

The ped thought that he had asthma and he was catching croup a lot. She wanted him on Nasonex, Flovent, and albuterol and we wanted a second opinion b/c it seemed like a drastic regimen for a very young kid, which is why we went to a pediatric pulmonologist. The pulm agreed that DS was getting sick an awful lot so he ordered some tests done to see if he had any immuno-suppression issues (fortunately, he doesn't). We also suspected DS had reflux and started him on Zantac. I had thought he might've had silent reflux as an infant but the ped said she didn't think so...and much later on, I read that there is a link between reflux and ear infections (DS got tubes in after 6 horrific infections in 3 months), so I was mad and felt badly that treating the reflux earlier might've helped mitigate/prevent a lot of his infections

The pulm said that an asthma diagnosis for DS was iffy- he probably did have it but that he thought he would outgrow it. He did say the ped was correct in prescribing the cocktail of asthma drugs and we had to continue it for months, but finally DS was able to stop taking them. Now we use Nasonex/Flovent if he gets a cold b/c we found that we have to prevent the cold from worsening into an upper respiratory infection, which the meds do help with that.

I am just totally confused with the allergy thing. To our knowledge, DS has never had treenuts so we're just going off two skin tests that were contradictory. I've heard it said skin testing is more accurate and conversely that the RAST is more accurate. Of course, they say the gold standard is actually having a reaction, but how will we ever know re: the treenuts if DS never eats them, but who wants to chance that? I do think the allergist said we would probably do a food challenge re: nuts in the future, but I don't know about peanuts.

 

[choro72]

No experience personally, but my friend's daughter is allergic to everything. Eggs, tomatoes, dairy, wheat, nuts, etc. From what I see, social gathering is the worst. They always bring her meal which is usually super healthy rice, fish, and greens. They also have to bring a special cupcake for her so that she doesn't feel left out. Once she starts school, they will have to prepare everything for her again because schools do a lot of birthday, Valentine's, birthday celebrations.

 

[VRBeauty]

Peanut allergies made the news here in Sacramento this week, tragically, following the death of a young teen at a local camp. I thought I'd post links to the Sacramento Bee articles here in case any of you might find them useful.

Years of caution about peanut allergy fails to save teen who died at Camp Sacramento:
http://www.sacbee.com/2013/07/30/5607195/years-of-caution-about-peanut.html

Elk Grove school district to ban peanut products from elementary schools
http://www.sacbee.com/2013/08/01/5613807/elk-grove-school-district-to-ban.html

 

[sphenequeen]

Logan

My allergist also told us to be aware if DS starts to cough after eating. She said the cough sounds sort of rapid, and almost as though he is trying to clear his throat. This is a reaction to the throat itching and/or swelling.

She also said that the ER is not very likely to use the Epipen and as Skippy said, when in doubt, use it! The docs advice was use the epipen then call the ambulance - that is what they are there for.

**As a side note, the anxiety I feel about this is making me feel terrible.

 

[Skippy123]

I know how your feel SQ, it does suck and you feel bad for your little one (I feel bad for my sweet boys) but you are armed with Knowledge and can do things to help them be educated. You can order alert bracelets, inform cargivers and schools, etc. I hope your LO outgrows it and I hope everyone's LO and including my twins too but they will learn how to say no to foods they don't know what is in it. I do have people tell me, joking, like how can you make sure 100% that peanuts are not in your food; that comment isn't helpful or people won't understand, but avoid those people or educate them on how fatal this can be. hang in there, it will be something you just deal with as a mom and help your kid though. hugs

eta: right away on playdates I tell my fellow mom friends that my kids can't have peanuts, nuts, sesame/hummus. It helps because they remember and don't offer my kids food. Also we bring snacks that I have approved for them to eat. that helps too. I tell all caregivers too.

 

[sphenequeen]

Hugs ladies. I am so thankful that this community is here. xoxo