Food Allergies: Good Info For All, Even Ones That Don't Get It

[ilovetivo]

More info - here's our experiences that lead to a diagnosis. Pls forgive me, for I may need to edit and add things in later. I posted this on another thread and thought it would be good here.

When we introduce foods, we do it 2x a day for 3 days. DD's reactions lead us to testing.

I knew something was wrong from early days and it wasn't until she was 10 months that it was confirmed. Mysterious dot rashes from 5 months old plus below info. Bottom line: trust your instincts as when to see an allergist and if you need to change allergists (we did)

DAIRY
At a few day's old dd projectile vomited for like 30 min every time she had formula (milk based like enfamil). We were supplementing my breastmilk. We switched to soy (isomil) and had no problems.

At 10 months we did a tablespoon or 2 of cottage cheese. She started vomiting 2 hrs later. She vomited non stop - and i mean literally non-stop, for 4 hours. I couldn't even leave the bathroom sink i was holding her over. Finally it was some blood too. She was so lethargic, she couldn't even hold her head up. Ped thought it could have been the consistency so they wanted us to try again 1 month later w/ yogurt. We tried again 1 month later w/ 1 TBS of Yo Baby drink. Well, 2 hrs later she vomited the same way for 3 hrs w/ same symptoms. ETA: In retrospect, had I known more even despite dr's orders, with the 1st major reaction, I shouldn't have tested it at home the 2nd time. We're lucky she's ok.

She was diagnosed by the allergist w/ dairy allergy and milk protein induced enterocolitis (MPIES) mainly by reactions. She tested positive for dairy on the blood test w/ low numbers. I think her skin test was negative. If it wasn't for the vomiting, she'd be not "allergic". They think MPIES is what caused the vomiting - the gastro system shuts down and all bodily fluids rush to the stomach (and colon i believe) and out. Other foods can cause it too in people (FPIES). There's no tests to confirm MPIES/FPIES, only reactions. Usually the reaction is 2 hrs or so after eating the food.

ETA: Skin test currently negative, blood test number still low, but up a little bit. Could challenge now if it wasn't for the MPIES.

When she's age 3+ , if her skin test and blood numbers are ok, we can food challenge dairy. However, it needs to be in the hospital w/ an IV already in place. She needs to be over 3 to even test it to be able to handle the potential vomiting physically, mentally, & emotionally. That's how serious and dangerous the vomiting is. It literally could have killed her b/c of quick dehydration. They veins collapse too, so an IV is very difficult.. An epi pen wouldn't have stopped it.

EGG
Vomited on day 1 of egg yolks/second exposure right after having it, but it only was a few seconds. Day 3 we also got the flu shot. 45 min later, full body hives. She tested positive on skin and blood. Diagnosed egg allergy due to tests and reactions. Outgrew egg at age 2. Skin and blood tests were negative so we did an oral food challenge in the dr's office, which she passed.

FISH/SHELLFISH
Skin tested positive with 1 allergiest (we see different one now), but she never ate it so it can't be confirmed. Didn't do blood at age 1. Recent tests (b/c of a food allergy study) were negative for blood/skin. Not introducing anyway until age 5 and numbers can change. Protectively avoiding. ETA: You're not supposed to blood or skin test something you haven't eaten - partly b/c you can't confirm issues w/o personal history with it.

PEANUTS/TREENUTS
Had mysterious reaction several times (severe eczema, diaper rash and screaming etc) to 365 Rice Milk. Didn't test back then b/c it wouldn't matter. Not introducing until 5. Plus pn/tn weren't in the product, so it could only be possible cross contamination of the oils. Also had a hive, red swollen eyes & rubbing eyes when we were in the bulk peanut etc aisle at whole foods (ETA: peanut/tree nut dust). Stopped screaming when we left the area. ETA: Went in aisle again and she was very nervous etc, no one in the aisle. Left area and issues stopped.) Recent tests (food study) were negative to skin, tiny numbers to blood. Numbers change w/ age though. Highly suspect, avoiding as an allergy.

DRUGS: Sulfas, penicillins, erythromycins - completely miserably w/in a day or so, full body rash by day 7. No tests available. Many drugs have dairy or other top food allergies in them.

We also avoid seeds because sesame is the top 9th allergen. Dairy, soy, wheat, peanut, tree nut, fish, shellfish, egg being the top 8, in no particular order. Sulphites is 10th. With seeds though, we don't worry about shared lines or anything, we just don't give her concentrated seeds or seed oils (flax for example). She can have mustard if she likes it, but she doesn't.

Possibly more than you wanted to know.

[punkrockmama]

Thank you so much for sharing this info with us. Your DD is lucky to have a mama like you in her corner.

By the way, that picture of her in your siggie is soo sweet. I always notice it. :)

[ilovetivo]

Thank you and thank you! :) she was looking at me, which makes all the more special to us. She always says, "I wooking at mommie!" when she sees it.

[JoyNChrist]

This is a really amazing collection of information. I knew absolutely nothing about the potential severity of these allergies (which is sad, when you consider that I have a potentially fatal allergy to bees and you think I'd know something about other allergies).

Anyway, I just wanted to thank you for posting all of this. Your DD is so fortunate to have a mama like you.

[punkrockmama]

>Thank you and thank you! :) she was looking at me, which
>makes all the more special to us. She always says, "I wooking
>at mommie!" when she sees it.


Aww, that's so cute! What a sweet thing to think everytime you see that pic.

[Hippoharbor]

It is difficult raising a toddler who has a severe food allergy. My 23 month DS was diagnosed with Peanut allergy at 14 months (contact reaction). I try to let him lead as normal a life as possible, but have to be very vigilent as to what other people are doing around us. 80% of the time when I take DS to the mall play area, I find someone feeding their children 'in' the play area, even though signs are posted that say "no food or drink allowed". Each time, I have to ask the family to please take the food out of the area because of my son's food allergy concerns. I would say only ~40% of people do it without giving me attitude. The remainder of the people usually shoot back comments like "Well, maybe your son shouldn't be out of the house if it is so dangerous for him", etc. My son deserves a chance to play safely in the play area just like their children and it angers me that people can be so rude and ignorant, especially when it involves a child so young. Those of you who do not have children with severe food allergies should feel very grateful and blessed, but also please try to accomodate those children that do have these serious food allergies.

Michelle

[Kendra]

Just wondering at what age you introduced the egg yolks...we started them at 10-1/2 months and she had them several (like 7-8) times before any reaction (coincidentally the first day she had wheat, so of course we thought it was that). She's also had a flu shot with no problems (after the wheat day) but every other time she's had egg yolks (twice more since wheat day) she's either spit or vomited them up. But of course spit up day was day #2 of yogurt which she's also allergic to, and day #4 of strawberries, so it was hard to figure. But she's skin tested positive for the eggs, and the milk, and possibly the wheat (but not the strawberries).

Also didn't know about not skin testing something that hasn't been introduced - she hasn't had fish, shellfish, peanuts or tree nuts but the allergist did the skin test (came out maybe, no, no, yes). So maybe the results aren't conclusive? She's having blood done on all of them but the shellfish anyway.

I want to thank you profusely for all you've posted here - it's been a great help in my sudden search for information, and I'm reading all I can to be a little more educated when the allergist calls with the blood results.

>EGG
>Vomited on day 1 of egg yolks/second exposure right after
>having it, but it only was a few seconds. Day 3 we also got
>the flu shot. 45 min later, full body hives. She tested
>positive on skin and blood. Diagnosed egg allergy due to tests
>and reactions. Outgrew egg at age 2. Skin and blood tests were
>negative so we did an oral food challenge in the dr's office,
>which she passed.
>
ETA: You're
>not supposed to blood or skin test something you haven't eaten
>- partly b/c you can't confirm issues w/o personal history
>with it.
>


Mom to Kate 11*17*05

[ilovetivo]

I think it was 10 months when we started eggs

the tests aren't perfect. that's one of the problems. you really need to take all things into account (skin, blood, personal history, family history), not just a skin test.

you're welcome :)

[ilovetivo]

Totally agree!!

Asking other parents to get rid of their dc's food in no food zones is so difficult. They get so mad. Last time for me was at Gymboree. I guess now I should say that it's a no food zone or get the teacher if possible - that way I leave my dd out of it.

I'm going to post more about what it's like to be a FA parent in another post - replying to my original in case people only read the main replies.

[ilovetivo]

No one knows what causes it, what cures it, why it's increasing, or who will grow out of them. Right now i think dairy is 80% outgrow, but i've also heard 50%. Peanut i think is 15%. They used to think it was 0%. So get retested if you're an adult and it's been awhile w/ no reactions :) I don't know about the rest.

I don't think anyone but food allergic families understand what we go thru day to day. It's like being in a constant state of hyper-vigilance. You cannot relax or let your guard down for one minute. You have to always be within a couple feet or so of dc, because they could pick something up in an instant. There's even discarded candy bar wrappers when taking a walk. I do think I've gotten better in the past year (dd is 24 months and diagnosed at 10). I did let her go in the mall tree house this weekend, but my stomach was in knots and I didn't sit down. You have to watch other kids to see what they're eating and picking up and see if they touch your dc or what dc's playing with. Kids like to come up and touch each other, even just walking in the store. ETA: Even if the a toy or wrapper or anything doesn't go into the mouth, if there's residue (even stuff you can't see) on dc's hand and the hand goes into their mouth, eyes or nose, it could cause a life threatening reaction. Wet Ones go everywhere we go. I wipe everything down that has visible stuff on it. I used to wipe everything (train table at the library). Now i just watch her really carefully and wipe and as soon as we're done.

A serious reaction could take 2 minutes from exposure to not breathing, so you always need to be 2 minutes within your epi pen. You can't even go in your yard without the emergency kit/diaper bag, in case you get locked out of the house....which has happened to us on several occasions, mainly by the babysitters.

You can't just have someone watch dc while you go out without extensively training them on what symptoms to look for, what foods to avoid, how to treat the reaction, how to use the epi pen etc.

A reaction can also start hours after the exposure, so even if they're not around food you're still on alert watching out for symtoms. It just becomes a way of life. We're not paranoid or overprotective, we're literally keeping our kids alive every minute.

Birthday parties and family gatherings are a mess and the most nerve-racking of all. You have to make sure everyone washes their hands before doing anything, not just touching dd. They could touch something that dc does before washing. They also have to wash mouths if they want to kiss dc's which they do. Sometimes the ones you think will be great and understanding aren't, and vice versa. Kids often are really good. Adults just "have" to have their peacan pie etc.

Nuts and peanut butter stay in one's mouth for four hours, even after brushing and eating something else. So, you have to be careful of that.

For us, since dd is so young and still puts things in her mouth, we keep our house allergy free. Oh! Don't forget about shoes! Food's on the ground, you walk on the food, you bring the food in to the house and WHAM! We don't have anything w/ dairy, peanuts, tree nuts, fish or shellfish in the house. That includes anything that has those things as ingredients (i'll post what to look for at a later time). DD can't eat anything on the same line or in the same facility (protectively to not get more allergies and allergywise). We do have same line/same facility foods in the house, but dd can't eat them. So....we label everything. Green - DD can eat, Red - Zoey cannot eat, Blue - need to call the company to find out first.

ETA: We want DD to feel safe in her own home. Nothing here should make her sick. It's a trace of a trace possibility. I'm just more comfortable that way. I don't have to be paranoid of which knife we used, is the sponge that cleaned X going to leave residue on Y etc. I can relax much more at home. Plus since i have sitters everyday, that makes me more comfortable w/ accidental expsosures

Oh yes, we FA families call the manufacturers of every food before giving the item to our DC. Some companies are great, others suck!! Hain Celestial is the worst. Some don't want to give you info, some just CYA and say don't eat it. We read the labels when we buy the food, put away the food and give the food to DC. Many reactions happen to people b/c they missed seeing the ingredient. I keep a log of every company i contact and what dd can eat from there. Sometimes it takes many emails/calls to a company b/c they don't want to go over every food they have. You can't count on the product being ok once you call b/c formulations can change at any time. The same food box on the grocery store shelf can have 2 different formulations. The new law for Jan 2006 was all labels need to clearly say if the food has one of the top 8 allergens in it. But it takes over a year to get all those old labeled items bought and off the shelves. The companies are not required to label or disclose if the food was made on the same lines or in the same facility. Some companies do same lines food, but have major cleaning processes. Each parent has to decide their comfort level of if that food will be ok.

It's totally and utterly exhausting - physically, mentally, emotionally etc. And for those with health problems. I'm on Social Security Disability Insurance - fibromyalgia & thus extreme fatigue and body pain like the flu) it's a HUGE challenge. Not to mention the depression. I *look* fine to others but feel like doo doo.

I'm so sick of not being able to give dd anything I want. I had to find a special kosher, dairy free (etc) bday cake and she didn't even eat it anyway. So sick of being on hyper alert. There's no light at the end of the tunner. Her FA's can be life long or she can get lucky and grow out of some of them.

ETA: I'm sick of not being able to eat what I want. I'm sick of being hungry and having cravings. I go out to eat alone, when the sitter's here, a lot just to eat something normal. There's lots of stuff we can eat, i'm just too tired to make it. Prepackaged or prepared or frozen foods are very hard to find.

Medicines are another story. As are items that should not have food in them, logically. I have to check every med before she takes one. So i need to be prepared should she get another ear infections. Omnicef has dairy for example. Other strange things are make-up (nuts), lotions (dairy), shampoo, cleaning products etc. It's crazy!

Thanks goodness DD is a great child and I adore her like nothing else. Please don't get me wrong. I'm also very grateful and blessed that all she doesn't have any other health problems in place of food allergies. I, however, cannot do it on my own. I have to have help every afternoon (ETA: with me home) or I crash. I crash even w/ help. We can't really afford it, but we can afford to not have help. Day care is out of the question. Preschools -- major interviews, questioning, checking facilities, student teacher ratios etc.

Grocery shopping – a land mine if DC is walking. Most stores now put food out for people to taste…..argh the nut! Then there’s the bulk aisle at Whole Foods. Nut dust everywhere that you can’t see. That’s were DD got hives and swollen eyes. We left the aisle and area and she calmed down. Went back and she was a mess again. However, we’re not confirmed peanut, so it’s all a crapshoot.

On that note, DC’s can have reactions and you have no idea what it was from or how it happened.

Breastfeeding - despite what some people say, food proteins go thru breastmilk. Even trace amounts. So if you're nursing a FA child, you need to also eliminate the allergens. It's up to the mom how much she wants to eliminate. Some do main sources. For example dairy: cheese, ice cream, milk, butter. Others do everything - cakes, bread, fillers, binders. I eliminated dairy, fish, shellfish, peanut, tree nut, egg for one month until I gave up. I was lucky that dd was self weaning at the time. I lost a lot of weight. BUT - you can do it. www.kidswithfoodallergies.org has a whole section dedicated to how to nurse on an elimination diet. There are some amazing moms out there! It can be done. Some even HAVE to nurse b/c that's the only way the dc gets their nutrients, as they're allergic to so much...even turkey, beef, chicken!

Finally, for now, the numbers you get from the skin and blood (RAST) tests are not predictive on how severe a reaction will be. Someone with minimal numbers (like 1.0) for a food may have anaphylaxis every time. Someone w/ 40 might only get eczema. What the numbers tell are the likelyhood of a reaction, not the severity. Higher numbers are more likely to react. My numbers for soy or egg, I can't remember, are 8. I don't react, my skin test is negative, thus no allergy.

Food allergies are more likely in children who's parents have any type of allergy - seasonal, environmental, chemical, food. It doesn't matter. Allergy is allergy. Some are IGE mediated and some are not. I won't go into that, but IGE mediated are the traditional ones you think of....hives with peanuts for example.

More to come: examples of what to look for in reading labels. Corn has like 100 names for it, dairy like 30 etc.

ETA: On the bright side, most FA kids are extremely compassionate of other people. They eat healthier - more whole foods, less processed. They learn to stand up for themselves. I know there's more, but can't think of them right now.