Mamas w/food allergic children

[~*max*~]

Anyone interested in a tribe for mamas w/ food allergic children? We have just discovered a dairy allergy in my almost 5 year old ds, that causes him to react w/impulsiveness, inattention, aggression, as well as break out in rashes. This is such a big piece of the puzzle for us w/ds, as we had been searching for the cause of his behavior for years.

So, I am just learning all this allergy stuff & would love to talk w/other mamas who have btdt. Perhaps share experiences, recommendations for food alternatives, recipes, and of course support - because this is hard!

Looking foward to hearing from others,
max

[~*max*~]

just a bump - hoping to catch some of the evening mamas.

[annab]

Our son has allergies to dairy, wheat, beef and some inhalant allergies as well. DS also has behavior problems when his are in full swing and very few physical symptoms.

The best thing I did was read "Is This Your Child?" by Dr. Doris Rapp.
http://www.drrapp.com
I don't love her website, but the book is excellent. I emailed her, and her staff was able to recommend an allergist in my area who did the type of testing and treatment she recommended. There was only one in the whole city! After working with two allergists who, well, sucked, I was skeptical. All I can tell you is that this method has worked for us with amazing results. I have a whole new kid.

Although he still reacts to allergens, the results are much less severe. For example, if he was exposed to dairy a year ago, he would have been awake and hyper for two to three hours at night, usually from 2-5. Now an exposure leads to a little mania, he can at least sleep and we can too.

This method uses only natural extracts for testing and treatment. Nothing synthetic. All extracts are in saline solution, not phenol which can cause false negatives and problems with extract integrity (this is all in the book).

This was a good match for us. It is somewhere between mainstream treatments, which failed us miserably and some of the other treatments that I just could not accept.

Best of luck! It is not easy to live with, but the relief at knowing what is wrong with your child is incredible.

[AllyRae]

Hi everyone! I have a 10 1/2 month old...he's allergic to tomatoes and all gluten products. I'm gluten intolerant as well, so we know where he got that from. I suspect he may have a dairy allergy too because he's had reflux since he started formula supplements (but I don't want to switch him to soy because I don't think that's good for him either)...so until he stops nursing with the SNS, he has to have the dairy formula.

With tomatoes, I gave him spaghetti sauce one day, which he loved. But 2 hours later, he pooped a lot and had a horrible diaper rash. It's been several weeks and we're still dealing with the rash (it's broken open) and the constant pooping. I took him to the ped today and he said that his reaction to tomatoes probably caused his stomach lining to start to slough off....which we were just fixing after learning that he was allergic to gluten.

[pilesoflaundry]

My dd is dairy and soy intolerant(but mostly in the raw and straight forms, she can handle small amounts of hidden dairy), my other dd is allergic to chamomile and tylenol but we actually suspect the corn syrup in that because she had the same reaction to applesauce with corn syrup in it.

My ds is the biggie! He is allergic to dairy badly- behavioral issues, migraines and vomiting, also artificial colors and dyes (especially red), some preservatives and artifical flavorings. If he even gets a little dairy, especially in processed things he is off the walls, irrational, irritable, violent (today he shoved the baby off the couch because she touched something of his) and his SID acts up. As in "mom bugs are crawling on me, my clothes are burning me, don't touch me " etc. He has adhd and the food allergies make it much worse.

Dairy in some form is in so many things it's hard to avoid . Of course a lot of his favorite snacks have diary in them, he loves cheese nips which I used to let him have because I figure they were better for him than a lot of other kid snacks. He is a crunchy type snacker, pretzels, crackers etc. He hates fruit and veggies and of course after all his allergies those are the few safe things . It is becoming impossible to get him to eat lately.

I want him rast tested to find out if he is allergic to anything else we might be missing to see if we can totally cure the behavioral problems. If we can't I'm just happy at the improvement. I just want to make sure we aren't making him worse by still feeding him stuff that is making him sick kwim? Corn and soy are in so many things also, I want to make sure he isn't allergic to either of those.

Anyone doe NAET to cure allergies? I would love to do it with ds, also chelation therapy because I wholeheartly believe some of his problems are mercury poisioning from the vaxes he received as a baby before I knew better . He was fully vaxed up to age 5 most if not all of them contained thimerasol. Allergies run in the family, although most of them are hay fever and seasonal allergies not food related. Then again his family (dh's) has a ton of unexplained stomach problems which could be untreated food intolerances. Ulcers, IBS, gas, etc. in him, mil, sil, bil and sil's dd had to be on hypoallergenic infant formula for severe reflux which we think caused her asthma (constantly aspirating spitup into her lungs) totally longwinded but I think yes we had a family history but the shots made it much worse, he is my most severely food allergic child and the one most affected.

Sorry I rambled, I will save some for another post .

[ShannonCC]

Do you mean true allergies or are you including sensitivities/intolerances, etc? I clicked on this link out of curiosity but I'm seeing that a lot of you are talking about things that I call "sensitivities" (not criticizing - I'm just wondering because often I don't understand the difference myself).

My dd does not have any food allergies (no rashes, hives, breathing problems, anaphalactic shock, etc) but has pretty noticable sensitivities to soy and yellow #5. If she eats either of these then within an hour or two she bounces off the walls (I've seen her actually shake from the excess energy), is rude, belligerant, has screaming (oh and I mean SCREAMING) freak out temper tantrums over minor issues, complete with yelling hateful things and angry roaring (I don't know what the neighbors think) and (with soy at least) she wets the bed.

Without these foods she's just spirited

I second Is This Your Child. From reading that book (and talking to a lot of other moms) we finally did an elimination diet when she was almost 3. Her early years (toddler through age 4) were hard enough as it was, I can't imagine how we would have gotten through if we hadn't figured this out. It helped a LOT. Not that it turned her into some mellow little child :LOL but the difference was still noticable and *wonderful*

And with trial and error I've found out a lot about soy (yellow #5 is much easier to avoid so that hasn't been tested much).

I've heard that people with allergies to soy can eat soy oil (don't ask me why). With my dd, soy oil is the worst. Soy protein is bad, soy flour is bad and soy lecithin does not affect her at all (whew! cuz that stuff is everywhere ).

But you know, I am soy intolerant (digestion problems) and the same holds true for me. Soy oil is the worst, soy lecithin is not a problem and everything else is in between. I have to wonder if we have the same thing but, being 35, I can handle it better without freaking out.

Though I do have bad PMS and a friend suggested I cut out soy and it seems to have helped this month : I know I shouldn't have been eating it anyway, but sometimes I get so sick of policing everything the two of us eat. It's easier to keep my dd healthy and not care about myself. (bad mama, bad!)

Anyway, I love to talk about this I just wanted to know if this is just allergies or all food sensitivites.

Good luck! Yes, it's hard at at times, but SO worth it

[pilesoflaundry]

Well I guess my kids have more sensitivites and intolerances than a true allergy. My 2 year old's eczema is directly related to her ingesting soy or dairy so in her case it is more towards the allergy side than ds who is it is all behavioral and digestive. The baby has an actual allergy to chamomile and an intolerance to tylenol and corn syrup if we are getting nit picky here . Chamomile tea immediatly got her sneezing badly and red itchy eyes after only a few sips. Tylenol and corn syrup make her throw up and cry. IMO if it causes a kid to puke it's an allergy but docs tend to say it's an intolerance if it's not hives, rash, eczema or shock.

I love to talk about this stuff in any form, so I'm not worried about what to call it persay. I just know my kids can't have this stuff and it's easiest to describe it as an allergy to other people so they "get it" kwim? If I say intolerance people still feed my kid this stuff (like family) because they assume it's not going to put the kid in the hospital or make them itch so it's ok to just have "a little". If I say allergy they tend to listen better kwim?

[zipperump-a-zoomum]

Hey there! My son (3.5) has a peanut allergy. Also an intolerance to sulfites. Also an allergy to dust mites, but that's not a food issue (i hope ) He tested as IGG intolerant to about 22 foods. Banana, all gluten containing grain, dairy, beef, pork, chicken: you name it. However, after researching that test I don't feel it is particularly valid. We removed some supplements he was on and the issues we were concerned about cleared up.

I don't know about the littlest, because we haven't had him tested yet. He has pretty severe excema, and I do plan on having him tested using the skin test but I would like to wait until he is older. He has never had a nut product, nor any seafood because we are concerned about the possibility.
Kaly

[zipperump-a-zoomum]

Oh, and the soy allergy but soy protein thing is ok? It's the same for peanut. (Except cold-pressed) I don't know why either. Weird, huh?
Kaly

[squintz22]

I agree with the calling it an allergy for others, even if it's only an intolerance......people sometimes just don't get it.

One of my sisters is seriously allergic to dairy and all dairy products. And the other has reactions to red dye.

I have seasonal allergies, as well as cats and dust - but foodwise, only yellow #5 bothers me. Gives me debilitating migraines, took me months to figure it out too.

With Sloane, it took us most of her life to figure out what the problem was. As a baby, she had bad gas/tummy problems when I ate dairy. So I cut out all dairy for about 3 months, and then tried again. She was fine with it. When she was about 6 months old, I let her try yogurt. She loved it - but she got a terrible diaper rash. I didn't think much of it, other than to not give her anymore yogurt. I felt awful. I wasn't able to pump enough when I finally had to go back to work, and she had to get supplemented. Around that same time, I switched to cloth diapers. Within days, she started breaking out on her poor bottom - to where the skin would peel off and she would bleed! I'd let her run around naked for hours trying to clear it up, tried every ointment, every natural remedy there was. And as soon as it would clear up a bit, it would come right back. First I tried switching back to sposies, then I started trying every single laundry detergent I could find, natural and not. (If anybody needs some, I probably have 10 jugs out in the pantry!)

Then my mom said something about my sister getting rashes that bad after she self-weaned. When my mom put her on milk.

So we cut out the dairy formula supplements, and I started pumping 6 times a day at work, but by then she was old enough that it wasn't as big a deal if she only had me come feed her at lunch. (Almost 9 months - I'd feed her before I left for work at 7:30am, lunch at noon, and then when I got home at 5pm) She'd have solids in between.

Since my mom had been through it with my sister (and she or that sister was watching the girls), I trusted them enough to not give her any milk products.

In the last few weeks we've slowly started adding dairy products back in. Amazing what a difference just a few months have made. The doctor suggested we try Lactaid to see if it was a lactose intolerance or a milk protein problem. The Lactaid made her breakout too. She's got light eczema all over still, but nothing very noticeable like before.

She's been okay now with cheese, and with creamy soups. But I haven't been able to bring myself to let her try much else. I'm okay with her just drinking soy milk, water, and nursing! Since the processed dairy isn't bothering her, it's gotten easier. I'm really hoping that it will get better with time since we found out pretty early! I just hate that it did take me so long to put all the pieces together. Typing this now, I feel like an idiot for not figuring it out sooner......

[evilgenius]

I am on an elimination diet of no gluten and no dairy at the recommendation of my naturopathic pediatrician. My daughter was 3 months old when she began having bloody stools and projectile vomiting. Since abstaining from gluten and diary (and almost all soy just to be safe) she doesn't have any problems. If I cheat or miss an ingredient, it shows up a couple of diapers later or she gets really pukey.

Anyway, I was totally overwhelmed with all the information. Here are a couple of good places to start:
There is a great magazine called Living Without for people with food and chemical sensitivities or allergies. Bob's Red Mill has a fantastic website with tons of gluten free products. Special Diet Celebrations by Carole Fenster is a good cookbook with recipes for lots of tasty things and subsititutions for everything you might be allergic to. Also, there is an organization called Gluten-Free Restaurants. Do a google and you'll find their site has listings of restaurants by state. They have little informational cards to print out for your wait staff/cooks to understand.

Since abstaining from all of these foods, I found that may things about myself have cleared up like constipation, congestion, depression, lethargy, and headaches. I just remember that whenever I want a slice of pizza. Plus, I've discovered tons of new foods that I would have overlooked otherwise. I've tried to have a positive attitude about this special diet and I think that becomes even more important when your kids are older.

Good luck.

[Meli65]

Please count me in -- ds has a number of food allergies and sensitivities. We figured out wheat and dairy when he was just a couple of weeks old -- he was tested at six months as being allergic to those, plus soy, oats, and eggs.

The chiro did a food sensitivity test and on that list were all citrus, almost all oils (except olive), corn, tomatoes, beans ... 30 in all.

We've seen a homeopath and a chiropractor, with some success. But I'm always interested in hearing more from other "crunchy" moms too (had a bad experience with PFAK!). We are currently on the caveman diet (meat, fruit and veg) along with some rice products and assorted cheating here and there, and we're all doing pretty well with it -- I lost about 25 pounds!

I really want to avoid these allergies for the baby in utero so would like to find out more about that, too. Looking forward to getting to know you!

[~*max*~]

I am so glad to hear from you all. It is really helpful to hear other people's experiences. Annab, thanks for the website. I have read "Is This Your Child" and look forward to checking out her site.

ShannonCC, yes, lets definately include sesitivities & intolerances (I am new to this, so didn't know all the lingo when first posting). We are all in the same boat.

Zipperump, w/your dc's peanut allergy, is she/he also allergic to other nuts? My ds eats peanutbutter every day & I am wondering if that too could be an allergen? I know its a pretty common one. He also eats a lot of wheat. I can't even imagine eliminating that one. He is such a particular eater that there will be nothing left. We are working on the dairy first, because that seems most prevalent. Then we will need to look into the others as well.

Evilgenious, (I am laughing just typing your name!), thank you for the book recommendations & resources. I definately need all the help I can get.

Those dealing w/dairy allergies, what do you use for substitutions? Ds will drink the Silk Vanilla Soy Milk (amazingly, because I think it is pretty bad). We tried soy cheese - that had to be one of the worst things I ever tasted. Ds loves grilled cheese sandwhiches. Anyone know of a good cheese alternative? How about a non-dairy butter for cooking & spreads? A milk alternative for cooking? I have read that rice milk is a good choice. Anyone try this? The kids also enjoy Rice Dream (ice cream alternative). It tastes like rice pudding. Dairy was ds's main source of protein, so I am really trying to find alternatives that he will eat.

Thanks all,
max

[~*max*~]

Oh, and I just thought of something else - holidays! How do you all manage the allergies/sensitivities/intolerances during parties, gatherings, trick or treating? At home I give ds anything he eats, but at gatherings it seems like I would need to follow him around constantly to monitor what he has access to. I have explained to him what an allergy is & why he cannot have milk or cheese. But I hate to keep saying no about foods, especially since he is already a very particular eater. I don't want to curb his interest in trying new foods. Sigh, this is hard.

max

[annab]

DS has done stunningly well with his allergies. I have to send his snack to preschool, so he always has something different that the other kids. I just tell him that milk makes him sick right now, but when he is older, he will be able to have it. If there is something questionable, I just tell him it has milk, and he understands. He even asks now, "Dat has milk in it?"

Cascadian Farms granola bars are the only ones I have found that have no milk products. I keep two or three with us at all times in case we are in a snack situation that I had not planned for. It has enough sugar that he considers it a treat. Example: went to a parks department class. There was no mention of a treat at the end. Fortunately, I had my trusty granola bar.

As for cheese, IMO, you are out of luck. Vegan cheese is vile. It does not melt, just gets hard. Tastes pretty gross too. Most soy cheeses have traces of dairy, so watch your labels (casein or caseinate or whey). It was a shocking moment to learn that Veggie Slices have dairy.

Since I was still nursing when all this came about, I was dairy-free too. The vanilla Silk was OK. The chocolate was awesome. We buy a case of the singles for Will. For cereal and cooking, I use almond milk more than anything. It adds a good flavor and bakes better than soy, IMO. Of course, if you have tree nut allergies, that won't work. Oh, it makes THE BEST hot cocoa ever. It tastes like it has a hint of amaretto in it--yum!

The only non-dairy butter where I am is Soy Garden. It is awesome. Even DH was surprised how much he liked it.

I am fortunate that Will likes everything. He eats a lot of beans and eggs for protein. We are reduced-meat eaters, and he likes chicken. Mostly though, he eats black beans.

For Halloween, we have the story of the treat witch. Will knows that what he collects is for the treat witch. We will put it in a Halloween bowl on the hearth, and in the morning, the candy will be gone, and the treat witch will have left a toy. As the treat witch, this works out well for me. Hoping for lots of Almond Joys this year.

HTH!

[ShannonCC]

I wasn't meaning to be nit picking :LOL I just know that some parents of true allergic children (some parents who have to walk around with epi-pens and literally fear for their children's lives) get a little frustrated when a child who "just" has behavior issues is referred to as allergic. And mostly, I was just wanting to know what the OP wanted to talk about so I didn't add to unwanted information (though I still went on and on didn't I? : )

Max, have you tried joining any food issue lists? (uh, I call them food issues - that covers it all for me). Back when I was studying this a lot, I remember other moms saying that an *extremely* picky eater was a sign of food issues. They described it like a drug. The child is allergic/sensitive to a food and it makes the body ill but after awhile, the body starts to crave it (just like a drug that is hurting the body too). And after awhile, the child will eat almost nothing else. I mostly remember them talking about this in regards to dairy but I think it's other foods too (just most commonly dairy and I think gluten?). The bad news it that you have to get it all out of the kids' body and from what I've heard, dairy can take something like 3 weeks to get rid of (and you're better off making everything from scratch when you're doing this because there are so many hidden forms - whey, casein, others I can't think of). The good news is that all the moms who spoke of this said that after a relatively short time (a week or so) suddenly the kid was happily eating other things And no, they will not starve themselves

I highly recommend an elimination diet. It is a PITB but so worth it. It took months to do, adding things in and re-checking them one at a time, but the results were worth it. And it gets easier when they are older. My dd is 6 and though she doesn't read labels or anything, she accepts that she can't have soy. It helps that I talk about how I need to avoid it too, so she doesn't feel like she's alone in this (and her dada can't eat onions and aunt sallie can't eat broccoli, etc).

Parties can be challenging. At home we just don't have food that she can't eat (I feel it's kinder and easier that way). But other people's houses are different. It's easier now that she's older but still, I bring my own food a lot. We are going to a party next week and the mom was going to buy cupcakes from the store so I told her I'd bring some for B (since store bought ones all have soy). I think I guilted her into making them from scratch : That wasn't my intention! But that's what I do a lot. I am upfront with people that my dd has food issues and she can't eat soy and yellow dye. I don't ask people to accomodate us, but I tell them we will be bringing our own food. Sometimes people offer to check their menu for us and sometimes they are just relieved we're handling it and say ok. And there are plenty of things she *can* eat, I just like to be prepared for the things she can't.

My family has had it drilled into their heads that she is not to eat soy so they are cool My in-laws are different though. I don't know if they don't take it seriously or don't want to bother or maybe they just don't think about it My MIL keeps feeding the kids campbells chicken noodle soup and graham crackers - both with soy. I finally decided we'll just pack food for them to take whenever they go over. It's a little weird that I have to do this (we've known about this for 3 years now!) but my kid's health (and our mental health!) is what's important here.

Oh, and yes, it's hard And an elimination diet (if you decide to do it) is hard, frustrating, annoying and makes you want to rant and rave about why your kid can't eat anything he wants. But it does get easier. It's practically a piece of (home-made, soy free, yellow dye #5 free) cake for us now

[AllyRae]

LOL...the treat witch... I like that one. If ds ever goes trick or treating (I actually don't like the practice), we'll have to try that one...

[PumpkinSeeds]

my son has several severe food allergies to egg, dairy and corn.

he's also sensitive to soy, it gives him diarrhea.

The other day he drank a yakult and his throat swelled. A couple of weeks before that a neighbor gave him corn chips and his throat swelled...

ugh, they seem to be getting worse even though every one told me he'd outgrow them...

My mother in law told me that the reason he's food allergic is because I didn't MAKE him eat those things as a baby.
Um, yeah..

[pilesoflaundry]

Originally Posted by ShannonCC

I wasn't meaning to be nit picking :LOL I just know that some parents of true allergic children (some parents who have to walk around with epi-pens and literally fear for their children's lives) get a little frustrated when a child who "just" has behavior issues is referred to as allergic. And mostly, I was just wanting to know what the OP wanted to talk about so I didn't add to unwanted information (though I still went on and on didn't I? : )

It's ok, I understand your point also. I'm sure if a child needed an epi-pen and I was talking to that mom and said my kid can't have milk because it makes him hyper she wouldn't understand my point because it's not as dangerous to him.

Originally Posted by ShannonCC

Max, have you tried joining any food issue lists? (uh, I call them food issues - that covers it all for me). Back when I was studying this a lot, I remember other moms saying that an *extremely* picky eater was a sign of food issues. They described it like a drug. The child is allergic/sensitive to a food and it makes the body ill but after awhile, the body starts to crave it (just like a drug that is hurting the body too). And after awhile, the child will eat almost nothing else. I mostly remember them talking about this in regards to dairy but I think it's other foods too (just most commonly dairy and I think gluten?). The bad news it that you have to get it all out of the kids' body and from what I've heard, dairy can take something like 3 weeks to get rid of (and you're better off making everything from scratch when you're doing this because there are so many hidden forms - whey, casein, others I can't think of). The good news is that all the moms who spoke of this said that after a relatively short time (a week or so) suddenly the kid was happily eating other things And no, they will not starve themselves

This is my ds, I soooo wish we figured it out sooner. He ate anything and everything until age 2 when he started drinking more and more milk, then it got to be he got more and more picky and I like an idiot kept giving him the milk thinking it would help because he wasn't eating. Now almost anything he does eat is somehow dairy related and we have had to cut it all out. He would literally whine and cry and throw a tantrum if I tried to tell him no more milk that day because he had enough. He would drink an entire gallon in one day if I let him and then ask for ice cream. Of course then he would throw up urgh.

As for family, we don't live near any so it's easy to avoid that and when they visit I just keep a very close eye on things. Parties and such are harder but we haven't been invited to any yet since we started the new diet, I will cross that bridge when I come to it.

We may have to try the treat witch this year because with ds's new found allergies there is no way he can have any of it. Between the chocolate, dairy and artificial colors it's pretty much all out .

[~*max*~]

Thank you for the recommendations annab. I'm taking notes!

ShannonCC, you mentioned "food issue lists" . I have no idea what that is. Can you explain? And I have wondered about the connection between his picky eating & allergies. Right now he has been dairy free for about 2 weeks. We are doing the single food elimination diet right now.

What kind of healthcare provider do you all recommend for allergy testing & treatment? I do not want to go the typical allergist route. Ds is just overcoming a strong fear of doctors & I know the skin testing would be a nightmare and set him way back (and I have heard its not always reliable.) So, naturopath, some have mentioned chiropractor, any others? And how do they test kids exactly?

You mamas are the best! Thanks again for helping.
max