DS1 just diagnosed with milk, egg, nut allergies- help please!

DD couldn't do cow's milk and we did soy formula until she was 2. The soy milk wasn't enough for her as well and it gave us some safety net for calories, nutrients, etc. You might consider this and talk to your Dr.

We have a doctors appointment this week and I am going to discuss his diet and see what they say about maybe going back to formula if necessary. I know they have the toddler formula we could probably use. I will also see if they have a recommendation on a nutrionist in our area. Well I went to the grocery this weekend and read lots of labels. Needless to say I didnt come out with much. I am going to Whole Foods today so maybe I will have better luck there.

By the way, someone mentioned Wonder Bread and when I checked the label it has milk in it. Thanks for all of your help.
 
DD2 is allergic to nuts and egg. We aren't sure about shellfish so we just keep her away from it all. We have 4 epi-pens just in case something happens!

Anyway, by chance we have figured out she can have egg if it's cooked into something like a cake, but not straight, and nothing like egg noodles. She breaks out but doesn't go into shock.

We have also figured out accidentally that she can have peanut oil - I took her to Chick Fil A and didn't know they used peanut oil and she was fine. In fact I talked to my friend who is also allergice to nuts and he said he can eat peanut oil and always has. DD can also have stuff that is manufactured with nuts but nothing that contains nuts. So apparently her allergy isn't as sensitive as others. Thank goodness!!

You'll figure this stuff out as time goes on. It's a lot easier to live with some allergies than others. In fact, the peanut one has been fairly easy. GL with it all!
 
My ODS will be five in a few weeks. He's allergic to wheat, barley, rye, eggs, peanuts and tree nuts. My YDS was allergic to dairy as a baby, but outgrew the allergy at 13 months old. You've gotten some great advice so far. I wanted to add a couple of things that I didn't see mentioned:

Replacing Eggs: When you need to replace an egg, you need to figure out whether the egg is for binding purposes in the recipe or for rising purposes. If an egg is used just for binding (like in pancakes), then you can replace the egg with a heaping tablespoon of applesauce. If it is for rising, or for both binding and rising (like in a cake), you need to try a different sub. For a cake, you can use a boxed cake mix (make sure that it is dairy free), and replace ALL of the ingredients with one can of soda (clear soda for white cakes, and darker soda for chocolate cakes). This is a SUPER easy way to make a cake (this works best with cupcakes b/c they have a smaller surface area to rise in). You can also buy powdered egg replacer at Whole Foods. The stuff is not my favorite, and usually only works replacing one (maybe two) eggs in a recipe). Our favorite egg replacer is flax seed (someone mentioned this one, I htink). We use one tablespoon milled flax seed to two tablespoons water for one egg, then we microwave it for 30 seconds-- it turns to a gooey mess, just like a real egg. The flax seed will work as a binding agent and a rising agent.

Finding a bread: If you stick in the bread aisle for long enough and read enough labels, you will be able to find a safe bread (and probably safe hamburger and hotdog buns, too). There used to be a variety of Sara Lee bread that was dairy and egg free, but manufacturers do change their ingredients all the time, so you'll just need to hang out in the bread aisle for awhile until you find a safe bread.

Margarine: Fleischman's sticks and Fleishman's light in the tub are dairy free. You can use the sticks in baking.


Neither rice nor soy milks are nutritionally equivalent to whole cow's milk. Both have far less fat, which a 1yo needs for brain development, and rice milk has virtually no protein. Rice milk is a great substitute for cooking and the occasional drink, but is *not* a good one-for-one substitute for whole cow's milk for a young child who had previously been drinking large amounts (more than a few ounces a day) of cow's milk. Think of it as the equivalent of apple juice - mostly carbs.

Assuming that he's getting enough protein from the rest of his diet (and I'd do a food log for a week or so to verify that, if he'd been getting a lot of nutrition from cow's milk), and it's mostly the fat to carry him through the night, try adding a tablespoon or two of coconut milk (neither nut nor milk!) to the rice milk. It's very high in fat, and tastes good. If you need to supplement protein, too, until he's eating more high-protein foods, you can get rice protein powder at a health food store.

My DD reacted to dairy and wheat when she was a baby, so I had to eliminate those things from my diet. (Most kids don't react to mom's diet. Mine did.) She was breastfed though, so had a reliable fat/protein source until she outgrew her allergies. That took about a year.

ITA-- Your LO may need soy milk for now or an adjustment in his diet to make up for lost protein and fat. Rice Milk will not provide that like cow's milk does.

Someone mentioned sunbutter. I have been a little unsure about using it with our two year old as I was afraid he might confuse it with peanut butter and eat that if he had the chance. I would love to be able to do a sunbutter and jelly sandwich for him. Anyone have these concerns and are they valid or will it be fine??????????

We've used Sunbutter with my DS since he was about two. It can be a choking hazard, just like peanut butter, so I wouldn't introduce it until you would "normally" introduce peanut butter. DS has never had a problem differentiating between the two. We are careful to call it SUNbutter and talk about how peanutbutter is not safe but sunbutter is. We also have a book called Ellie the Allergic Elephant. It is about an elephant who is allergic to peanuts. It's very cute and helps the kids to understand.

I had an array of food allergies growing up - many causing reactions to my breathing and skin. (Egg whites and yolks, milk, peanuts, chicken, rice, and corn to name a few.)

I don't know if doctors discussed any "treatment" options with you other than avoid the food at all cost. This is NOT what you asked and you didn't share, but if you know the severity of the allergy that would certainly be beneficial. There were certain foods that I had to avoid and some I could have as long as they were in cooked items (I couldn't not eat eggs, but could have a muffin made with egg.)

When I was little (I'm 37 now) my family was in the military and rarely lived on base, so my mother usually took the advice of the locals, more than the military doctors. So, in addition to avoiding the potentially harmful foods, she also gave many of them to me daily in very tiny doses - touched the peanut everyday forever then got the dust on my tongue, etc. (I still eat three peanuts in the morning and before bed;) ) I do NOT advocate this, but essentially, she was building my immunity. After we moved stateside, I started allergy shots. The doctors couldn't believe the change in results from two years previous. They swore that the ratings of my allergens were in error - they were still there, but mild (hence started the allergy injections).

I also showed improvement with these too. I began eating PB&J nearly everyday in high school. Still love it.

I stopped allergy shots about age 15. I'm back on them (6 months ago) because of a new shrimp and tomatoe allergy (and don't forget the never ending pollens). I'm hoping it works as well. (Sorry to highjack your post.)

Anyway, :grouphug: to you and your DS. I hope it's only temporary.

There are studies going on right now where they are giving kids increasing amounts of peanut flour to desensitize them to the allergen. Like you said, though, it should only be done under a doctor's supervision. I'm interested to hear more about your shots for FA's. It was my understanding that in the US shots for FA's are not given. DS is currently on shots for his environmental and seasonal allergies.

DD2 is allergic to nuts and egg. We aren't sure about shellfish so we just keep her away from it all. We have 4 epi-pens just in case something happens!

Anyway, by chance we have figured out she can have egg if it's cooked into something like a cake, but not straight, and nothing like egg noodles. She breaks out but doesn't go into shock.

We have also figured out accidentally that she can have peanut oil - I took her to Chick Fil A and didn't know they used peanut oil and she was fine. In fact I talked to my friend who is also allergice to nuts and he said he can eat peanut oil and always has. DD can also have stuff that is manufactured with nuts but nothing that contains nuts. So apparently her allergy isn't as sensitive as others. Thank goodness!!

You'll figure this stuff out as time goes on. It's a lot easier to live with some allergies than others. In fact, the peanut one has been fairly easy. GL with it all!

Some kids can have egg cooked into things. The theory is that you are allergic to a parts of a protein in a food called epitopes. Some epitopes are bent over one another (they are called conformational epitopes). Those epitopes are actually destroyed when the food is cooked, so the allergen is removed. If you are allergic to sequential epitopes then the allergen remains when the food is cooked. Unfortunately, there is no way to test which kind of epitope your child is allergic to at this point. The only way to find out if your child can handle eggs in baked goods is to do a food challenge, which should be done in your allergist's office.

Also, highly refined peanut oil (like that used at Chick-Fil-A) does not contain peanut protein, so it is safe for the vast majority of peanut allergic individuals. My DS gets hives if he even touches a small amount of peanut butter, but he eats chick-fil-a with no problems. Some peanut oils are not safe-- they are the cold pressed or expeller pressed peanut oils and are usually considered "gourmet" oils. If I don't know what kind of peanut oil was used in a product, we avoid it, but Chick-Fil-A publicizes that they use highly refined peanut oil, so we let DS eat there.

Boy, I just wrote a novel!! I hope some of the info was helpful! --Katie
 
Sending you hugs! I have been there and done that for 14 years. It does get easier....I promise....it just takes some work and research and changing the way you do things.

My youngest son, who is 14, is currently allergic to peanuts, tree nuts, soy, mussels, clams, and lobster. There may be more..but that it the current list. When he turned 1 (Oh so many years ago) he was allergic to peanuts, tree nuts, eggs and corn(also in just about everything as a thickener). He was tested for soy and at that time he passed the test. I learned to make everything from scratch. Plain cheerios (no milk) is still his favorite breakfast. Plain pasta with olive oil is good. Steamed fresh (or frozen in bags) veggies. Plain steamed rice. Bread made from scratch...and dipped in olive oil. Marinara sauce made with canned or fresh tomatoes, olive oil and garlic for pasta. Meats done minimal style....grilled, roasted or in the wok...just with a few safe spices or just salt and pepper. It sounds boring, but I am a great cook using all fresh ingredients with the least amount of prep possible. Just keep an open mind and a good sense of humor!

Two things that really helped are a bread machine and a rice cooker. I use one or the other at least 4 times a week.

Also, peanuts are legume so they are in the soy family. My son developed an allergy to soy sometime after the initial diagnosis. Last winter I "discovered" how much I liked the vanilla soy milk. I shared a glass with my son (his words, "Mom tried to kill me") and he ended up in the ER. We can laugh about it now! A good sense of humor will help him a lot in school and everyhere!

We also have a "double for nothing" rule. If he has to turn down a treat anywhere, he can have a double treat when he gets home. This works for him....your mileage may vary!
 

We also have a "double for nothing" rule. If he has to turn down a treat anywhere, he can have a double treat when he gets home. This works for him....your mileage may vary!

This is great rule-- I'm filing it for when DS is older! It's always good to hear from moms of older FA kids. It's nice to know that our kiddos will turn out to be great, well-adjusted teens, even though they've got food alleriges that make life a little more complicated! --Katie
 
My DS 5 has a severe tree nut allergy. I agree with previous posters. In the beginning, it is overwhelming. But after awhile, you will become used to the scrutinizing of food labels etc. We do not really eat out anymore too much as a family because I don;t feel safe. WDW is wonderful with accomadating food allergies
My BIGGEST and most frustrating challenge related to the allergy is not others "understanding". And going to a birthday party is difficult. My DS still gets upset when he can;t have the birthday cake. I bring him his own cupcake.
Now he is starting kindergarten and I went to the principal and explained how nervous I was about the food allergies. Her response was that I should "teach" him what he can have and that this school will not be responsible for monitoring what he eats. Very very scary.
I am currently in the process of fighting with the Board OF Education to be able to attend another school in my town. There is one close to me that doesn't allow outside food in even for birthdays and such. I need him to be in an environment that is safe because his allergy is also contact.
I called my allergist to write a drs order about his environmnet. Hopefully, I will be allowed to switch schools.
 
Sending you hugs! I have been there and done that for 14 years. It does get easier....I promise....it just takes some work and research and changing the way you do things.


Also, peanuts are legume so they are in the soy family. My son developed an allergy to soy sometime after the initial diagnosis. Last winter I "discovered" how much I liked the vanilla soy milk. I shared a glass with my son (his words, "Mom tried to kill me") and he ended up in the ER. We can laugh about it now! A good sense of humor will help him a lot in school and everyhere!

We also have a "double for nothing" rule. If he has to turn down a treat anywhere, he can have a double treat when he gets home. This works for him....your mileage may vary!

I did not realize that soy was in the same family as peanuts. DS did not test positive to soy but we gave him some soy milk and he started having messy diapers like he did with cows milk so I stopped the soy milk for now. I may try it again in a few weeks since it was so soon after stopping cows milk and see if we get the same response. Also, he had a reaction to peas and they are in the same family as peanuts- his eczema flared very quickly after eating them and the dr. said to eliminate them for 4 weeks and try again to see if we get the same reaction.

I love your double for nothing rule and will have to remember that one when DS gets older. Thanks for everyones help. I love hearing of brands to try, ideas of how to make things and all of the encouragement.
 
There's a pretty high percentage of kids with egg allergies who outgrow them and/or are only allergic to raw eggs, but are OK with eggs in products.

My son can tolerate waffles, pancakes and that kind of stuff no problem, but eggs that have any runny nature to them he immediately gets itchy. My husband gave him his fork at breakfast when we were out one time, (son's fork had fallen on the floor) and after just one bite using a fork that had sunny side up egg residue on it, he was itchy.
 
The "double for nothing" rule has always worked really really well for us! This is another rule in our house. If some one (other than a immediate family member) offers you something to eat and you know that you can't eat it or you aren't sure that you can it, the correct response is, "No, thank you". It can be embellished with "No, thank you, I am not hungry". It can not be...under any circumstances..."What? are you trying to murder me?" I have likened it to what you do at christmas or your birthday when your aunt gives you a present you hate. You still have to thank her for thinking of you and never...ever...say "EWWWW". The same is true with food, if someone is offering you a treat, or drink, or whatever it is it is because they want to be kind and generous. So, your response must be kind and gracious. Gracious does not offer a lecture on what can and can't be eaten because you don't want the other person to feel bad. If they ask on the other hand....gently educate them. And yes, he did accuse someone of trying to kill him....he was little. Luckily for us they had a great sense of humor.

A funny story where this small white lie has been a problem. My son was applying to the catholic high school that my D17 attends. During the interview he was asked to name three things that people would use to describe him. He quickly said, "kind and funny". Then, he was stumped. The interviewer suggested, "honest". My D didn't want to say that because he is not always honest when he says, "No, thank you I'm not hungry" because sometimes he really is. And he didn't want to just say it because he figured God knew when he was honest and when he wasn't. So, he finally told the interviewer that he wasn't always honest and why. He came out saying they probably wouldn't accept him because of it. Of course they did and they were very impressed with his reasoning.

I worked really hard to give him some feeling of control over his food allergies. Birthday parties can be an issue. But I gave him several choices. One, do you want to go and not make a fuss over the things you can't eat or do you want to stay home...your choice? Next, if you decide to go, do you want to bring a cupcake or wait and get a double treat with Mom when we get home? I went to all birthday parties that he went to for years. I always called up the Mom and let her knew that it was not her responsibility to have something that my S could eat. We would bring our own treat. I also let her know that I would love to be an extra set of hands to help her out and that I would be there in case something bad did happen so I could take care of it. All the Moms' appreciated this! If the Mom says, "I checked with the bakery and they said it was fine". I would point out to my son how much fun he was having and how sad it would be if he had to leave because of a bad reaction. His choice...my reasoning? I was there with the epi-pen and it would be a learning experience. One I preferred when I was there to sometime when I wasn't.

Now that he is older, he makes the decisions on what he can eat and when not to eat something. He has had enough ER visits to have a real understanding of what the risks are (some food allergies and most with his asthma). He chooses not to take chances. I hope this continues in high school and college.

But, everyone needs to find what works best with their own kid!
 
I've got a kiddo with an egg allergy. She can have it in stuff but scrambled or fried are out. We manage it very well IMO. She's almost 10 now & knows to keep away when I'm scrambling eggs for her brothers breakfast or doing anything with eggs.

You might look into these allergy cards. We're going to get them for our trip to Europe next year but I think they'd be good for use in the US as well. If you're in a restaurant they can be take back to the kitchen for whomever is cooking your food to see.
 
My DS 5 has a severe tree nut allergy. I agree with previous posters. In the beginning, it is overwhelming. But after awhile, you will become used to the scrutinizing of food labels etc. We do not really eat out anymore too much as a family because I don;t feel safe. WDW is wonderful with accomadating food allergies
My BIGGEST and most frustrating challenge related to the allergy is not others "understanding". And going to a birthday party is difficult. My DS still gets upset when he can;t have the birthday cake. I bring him his own cupcake.
Now he is starting kindergarten and I went to the principal and explained how nervous I was about the food allergies. Her response was that I should "teach" him what he can have and that this school will not be responsible for monitoring what he eats. Very very scary.
I am currently in the process of fighting with the Board OF Education to be able to attend another school in my town. There is one close to me that doesn't allow outside food in even for birthdays and such. I need him to be in an environment that is safe because his allergy is also contact.
I called my allergist to write a drs order about his environmnet. Hopefully, I will be allowed to switch schools.

I am so sorry to hear about your principal at the school! That is so scary! That is my biggest fear, DD will be starting preschool (well only 2 hours/3 days a week) this year, but next year it is 1/2 day kindergarten and this scares me. The thing is, its hard to "teach" your child what he can/can't eat, because sometimes it depends on the name brand. For example, say Oreo is nut free, BUT the store brand cookie that LOOKS like an Oreo is not. KWIM? When is really boils down to it, our kids do have special needs in a way and those needs should be accommodated.
Last semester I did my JR observations with a kindergarten and in Sept I will be student teaching with the same kindergarten class. I had to put together a lesson about birds/nests/migration and I asked teacher for suggestions on a follow us activity and she had one all planned out that involved making a bird feeder with PB. I was surprised, I asked about kids with FA and she said she did not have any with FAs this year, but last year and the year before she did, and obviously this activity was not done.
Also, my cousin is in 1st grade and he has a little boy in his class with FA and for christmas/halloween/easter parties his mom keeps him home on those days. Which is sad you know, I totally see why she does it, but the school should make the effort to say "he can come to school, we will make it safe for him."
I am sad b/c I should be so excited about DD starting school b/c I love school, but I am more nervous than anything else.
 
Just thought I would add some info from my dr. today. DS had a well baby check and we were discussing the lack of fat in rice milk vs. whole milk and dr. recommended adding 1 tsp of olive oil per ounce of rice milk to add some fat back to his diet. We will try it and see if DS will drink it. Also, the dr. was very aware of the fact that the MMR shot had egg so he agreed we should wait on that shot which is what I wanted to do anyway.
 
I just (as in yesterday) had to take my 2 year old DD off milk, soy, peanuts, gluten, eggs and shellfish. As of now, she is drinking EleCare with a little splenda and vanilla mixed in it. (The allergist gave us 3 cans.) When we run out of it I am going to buy some DariFree. It is a powder milk replacement. I've talked to several other mom of kids with allergies who suggests this. It's pretty cheap, too. As young as your son is though (he still needs a lot of fat) I would probably ask his doctor about writing a script for EleCare or Neocate Junior. There is a good chance your insurance would pay for it. If not, you can but a new unopened case of it on Ebay for a lot cheaper than ordering it directly from the supplier.
 
My DS 5 has a severe tree nut allergy. I agree with previous posters. In the beginning, it is overwhelming. But after awhile, you will become used to the scrutinizing of food labels etc. We do not really eat out anymore too much as a family because I don;t feel safe. WDW is wonderful with accomadating food allergies
My BIGGEST and most frustrating challenge related to the allergy is not others "understanding". And going to a birthday party is difficult. My DS still gets upset when he can;t have the birthday cake. I bring him his own cupcake.
Now he is starting kindergarten and I went to the principal and explained how nervous I was about the food allergies. Her response was that I should "teach" him what he can have and that this school will not be responsible for monitoring what he eats. Very very scary.
I am currently in the process of fighting with the Board OF Education to be able to attend another school in my town. There is one close to me that doesn't allow outside food in even for birthdays and such. I need him to be in an environment that is safe because his allergy is also contact.
I called my allergist to write a drs order about his environmnet. Hopefully, I will be allowed to switch schools.

There's probably someone who can explain it better than I can but you may be able to have him considered special education & with that he has to have an IEP & they must accomodate him. I have no idea the steps you'd need to take but it should be worth a look-see.
 
I have a doctors order now that he must be in a environment that will not expose him to nuts. I am going again to BOE on Monday and will keep you updated! I am so upset over this, I so hope I can switch.
 
My DS has an egg allergy also. He is 17 months old, and we found this out right before he turned 1. It's been hard, but we are adjusting. I can't help you on the other allergies, but I know that these items do NOT contain Egg:
1) Rienzi brand pasta (also doesn't say "manufactured in a facility that processes egg")
2) Oreo Cookies
3) Nutri Grain bars (must be name brand, definitely NOT the Target brand)
4) Fig Newtons
5) Teddy Grahams

That's all I can think of right now. I am sorry to hear about the allergies. This can be quite a challenge, especially with more than one.

Just last week my DH gave our son a brownie bite (WITH EGG IN IT!) :scared1: and he has had a rash for a week. I could have killed DH!!!:mad: He just brushes it off, like it's no big deal. Very annoying, but that's a whole other thread!!!

It will definitely help if you have support from family members. My DS4 supports me in the "Does it have egg in it???" routine! :lovestruc
 
My DS 5 has a severe tree nut allergy. I agree with previous posters. In the beginning, it is overwhelming. But after awhile, you will become used to the scrutinizing of food labels etc. We do not really eat out anymore too much as a family because I don;t feel safe. WDW is wonderful with accomadating food allergies
My BIGGEST and most frustrating challenge related to the allergy is not others "understanding". And going to a birthday party is difficult. My DS still gets upset when he can;t have the birthday cake. I bring him his own cupcake.
Now he is starting kindergarten and I went to the principal and explained how nervous I was about the food allergies. Her response was that I should "teach" him what he can have and that this school will not be responsible for monitoring what he eats. Very very scary.
I am currently in the process of fighting with the Board OF Education to be able to attend another school in my town. There is one close to me that doesn't allow outside food in even for birthdays and such. I need him to be in an environment that is safe because his allergy is also contact.
I called my allergist to write a drs order about his environmnet. Hopefully, I will be allowed to switch schools.


wow this blows my mind!!
My dd school mandiates if a child has an allergy(mainly peanut) that the whole classroom goes nut free.My dd6 class was peanut free(will be again next year) and mydd4 starting this sept is being tested for a peanut allegy will be peanut free.The lunch room has a table for kids with allegies so they don't trade any food.They can have a friend from class sit with them after the teacher checks to make sure nothing in there lunch that can hurt any kids at the allergy table.
A 5 year old can be taught what not to eat.But when they see another child having something and they want it they don't they are going to try to have it to.There to little understand that.
Good for you going to the board of Ed. I would contact your local news too if they don't do something.
 
Wow! I just read through the 504 plan stuff and then clicked the link on sample 504 for kids with food allergies. I urge all of you with kids that have anaphalactic responses to foods to get one of these. As I read, I thought, "hey, that addresses the problems I had on field trips, the bus, lunches...". I wish I had known about this when he was starting out. He's turned out great and the school worked with us to solve problems as they occurred. But sometimes we played catch up and had to scramble to fix somethings. The bus, for instance, does not carry any medications and does not have anyone to administer them if they did. I never did find a solution to this problem. Field trips were my biggest headache. I ended up going on each and every one (such a hardship...I enjoyed them all).

This is the tale of the lunch. When he started 1st grade (no all day K then), there was no special lunch table. So, he sat with his class. About a month in, he had an allergic reaction...911...was called...ER...etc. Fine, they made him his own table. He hated it, he was lonesome because no one else could sit with him. After some strong urging from me (I believe my exact words were...you can't make him sit by himself thats discrimination...I will sue you). He was allowed to have friends who had their lunch checked sit with him. After the next 911 call, every child in the lunch room had to wipe their hands with diaper wipe before leaving the cafeteria. Both of these are addressed in that 504 that I didn't know about. Fast forward to 4th grade. I get a call about "my son's problem at lunch". Turns out he was having about 20 boys sit with him at the special table and they were being disruptive....the little imps! This time it was my turn to support the school.

LoveinPooh, I would print out that sample 504 and start working on it this weekend. It will help you spell out for the BOE exactly what you need. Call the Dr. and get his input on it too. A well researched parent is hard to ignore.
 
My DS (now 21 and still alive!) nearly died at 6 weeks --wrongly dx'ed with an infection and failure to thrive. He actually -- we realized retroactively -- was allergic to my milk, which was passing on the allergens he was born allergic to. We fortunately placed him on soy forumula when I quit producing milk altogether when he refused to suckle, because he developed exzema at 3 days old.

After about 2 years of putting the pieces together, he was anaphylactically allergic to ALL milk and milk derivatives, anything with even a trace of egg, tree nuts, and peanuts.

He also had oral allergy syndrome (not life-threatening, but causing hives and ulcers in his throat) to most fresh fruits and vegetables and citrus in any form.

And catastrophic asthma before they developed cortasteroids.

We waited until after age 12 for any seafood exposure whatsover, and he can eat both fish and shellfish.

Managing food: We HAD to develop a focus on what he COULD eat, and how we COULD get through with a normal life, or our version of that. We also had to develop a list of procedures that we never varied from, regarding them like making sure you have on clothes.

Read the labels every single time.
Invite children to your house.
Only let him play at houses where the parents will control food exposure with the same care you would.
When people tell you about their lactose intolerant grandson Jeremy, don't wast the energy trying to argue.

Make rituals around what is safe to eat: his bday cakes were always rice krispy treat cakes, with extravagant icing and safe candy decorations. At Halloween, we developed an "exchange store" at home, where he traded piece for piece the chocolate/nut candies for gummy bears and what he could eat. We then donated the wrapped forbidden ones to the local shelter. Also at Halloween, friends would stock "Graham bags" with lots of goodies he could eat. At Christmas, gingerbread houses from graham crackers (safe) rather than cookie baking. Disney: safe, with planning. WE would plan our meals around the places that serve sorbet, since he loved scoopable ice cream like everyone else.

If rice dream had come out when he was little, he would have been raised on it, as he tried it too old, and hated the taste.

Get to know the grill spread. McD's is non dairy. So is Wendys. (had an anaphylactic episode at ARby's once, when they changed grill spread to one with sodium caseinate.) Buns are local, not national, so we would order hamburger patties only, and put them on wonder bread (safe). French fries: safe at national chains, no peanut oil.

check this for current: but at Pizza Hut, the personal pan pizza crust comes frozen from national supplier, and is dairy-free. Other pizza crusts often have whey. At school, part of his 504 was that any pizza party came from Pizza Hut, with a separate pan pizza for him with sauce and pepperoni (safe for him).

Cool whip and other "non dairy" items often have sodium caseinate, whey in them. Frozen non dairy creamer is usually genuinely dairy free, and can be used in some recipes.

Margarine and other products marked "pareve" are genuinely dairy free.

Turkey breast and other items from the deli often have nonfat dry milk or whey injected in order to moisturize. Demand to read the labels.

We refused to give up eating out, and cultivated a small set of places that we could work with, and learned what was safe and standard at national chains like steakhouses, etc.

At school, he started in kindergarten in a system with no school nurses. After a respiratory failure incident (at home), the school board saw the wisdom of onsite nurses (rather than a lawsuit, in which we would have been joined by the teacher's union, since federal law mandated they administer meds, and state law prevented.) Food Allergy network, and their school kit is your best friend---they didn't exist when we started to wade through it all.

Graham was allergic to vapors in the lunch room, and had to eat i nthe nurses office. He had a gang of 5 buddies who ate in there with him. He kept a box of safe treats at school.

He had severe contact allergies, so if he touched a leaf or a piece of chalk, without immediate handwashing, he would need eyedrops and get lesions on his face that took sometimes months to heal.

We got through by ironclad senses of humor, being grateful for what could be, rather than what wasn't, and eternal vigilance. Both my hubby and I continued to hold down full-time (albeit flexible) careers, and we dared another child when Graham was age 9. She is drip-dry healthy. No asthma. No food allergies.

Live it one day at a time. Disney is your friend. They were when he was little, and they are 100% better now.

At age 21, Graham is still anaphylactially allergic to nut products. He managed to avoid any exposure from age 9 to age 21 without really focusing on it much; you figure out what's safe, and what isn't. Two weeks ago, for reasons he can't explain, he ate an oatmeal cookie from the counter bakery at a Giant Eagle (grocery store) and nearly died 4 hours later. No epipen in his possession. Fortunately very close to an ER, and he made it through.

Since age 17, he's been able to tolerate small amounts of dairy when baked or cooked into something. Not very much, but it's not resp. failure after a minute exposure.
 


Disney Vacation Planning. Free. Done for You.
Our Authorized Disney Vacation Planners are here to provide personalized, expert advice, answer every question, and uncover the best discounts. Let Dreams Unlimited Travel take care of all the details, so you can sit back, relax, and enjoy a stress-free vacation.
Start Your Disney Vacation
Disney EarMarked Producer

New Posts







DIS Facebook DIS youtube DIS Instagram DIS Pinterest DIS Tiktok DIS Twitter

Add as a preferred source on Google

Back
Top Bottom