Soooo new to allergies and VERY overwhelmed!

Posted on: Thu, 02/01/2007 - 1:46pm
Anonymous's picture
Anonymous (not verified)

My 12 mo. old had RAST testing results of Egg(Level 5)Peanut(Level 4)Wheat (Level 3)Milk, Rye, Soy, and Banana (Level 2)...doc said total elimination of eggs and peanuts from diet...since baby is soooo young, he hasn't been exposed to egg or nuts that i know of, so i fear I'm going to live in fear and be overprotective of his peanut allergy, especially in worries of a horrific reaction...we live in boonies, so doc prescribed I right to assume all precautions should be made to keep my son away from ANY peanut exposure, cross-contamination, etc. What can be done?

Also, is there any help out there anywhere for making meal plans in order to make sure child is getting the right nutrition, since he's allergic to wheat and is showing signs of reacting to milk, I worry about getting the grains and dairy he'll need on a daily basis(without him tiring of eating the same thing day in and day out)!
I'm sooo glad I found this site...I look forward to any help and advice I can get!
Thanks all!
Lincoln's Mom

Posted on: Fri, 02/02/2007 - 1:53am
anonymous's picture
Joined: 05/28/2009 - 16:42

Just wondering what prompted your son to have a RAST test? What was he reacting to in the beginning?
There are alot of people here that have children with multiple food allergies, and a wealth of info.
We will all help you get through this.
Take care,
Stacie - Mother to:
11 yr. PA
8 yr. TNA
3 yr. PA&TNA

Posted on: Fri, 02/02/2007 - 2:12am
maddiesmom's picture
Joined: 12/20/1999 - 09:00

When DD was 18 months old we found out about her multiple food allergies (wheat, milk, soy, peanuts, tree nuts, eggs) and we felt the same way.
Have you thought about going to see a Dietition/Nutritionist??
DD's allergist and also her pediatrition gave us a referral to go see a Nutritionist. We had 2 meetings with her and she helped me to figure out what to feed her, and how to make sure she was getting all that she needed.
DD DID outgrow most of her allergies (except peanuts/tree nuts and soy) so it did get a lot easier. Complete elimination is recommended so they can hopefully outgrow some of them. But, if they don't outgrow them at least you will have alternate food ideas they could give you.

Posted on: Fri, 02/02/2007 - 2:29am
Momcat's picture
Joined: 03/15/2005 - 09:00

If you live in the "boonies", consider getting several epipens. The effects of an epipen wear off after about 15 minutes. If the first one does not stop the reaction, you will need another.
Mom to 7 yr old PA/TNA daughter and 4 yr old son who is allergic to eggs.

Posted on: Fri, 02/02/2007 - 2:34am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

We were in the same boat with my 1 yo. I can tell you that the most challenging thing was the grains. There ARE good alternative grains, but they are not always as straightforward to work with as wheat, barley, oats and rye.
We used corn tortillas as a convenience food, and learned to cook with amaranth and quinoa, in addition to rice and corn. We bought ourselves a fairly inexpensive nutrition book "The American Dietetic Association's Complete Food and Nutrition Guide." This was (in our opinion) far more helpful than the dietician we saw, who made suggestions which were questionable (to say the least) in a child with MFA.
The other two things I would suggest you look for are any of Carole Fenster's (think this is her name) cookbooks (she write gluten free cookbooks using some very creative alternatives) and also Gioannini's "The Complete Food Allergy Cookbook." It isn't exactly "complete," but it IS very helpful in terms of grain replacements that aren't too dangerous for people with nut allergies. It has a lot of information about different grains and how ot use them.
Be very careful buying cookbooks sight unseen. We found that a great many of them weren't really suitable for true food allergic people at all. One even encourages you to eat nothing but tuna fish and rice cakes as an elimination diet, for example... slowly adding in other "low allergen" foods like, umm, nuts. [img][/img] So you can see what I mean.
In all seriousness, though-- if you see NO improvements after removing wheat and its relatives from your child's diet for a month, I'd call the allergist back and ask for more advice. Same with milk (I forget if that one is on your list). These can seriously compromise nutrition and in young children that can have lasting health consequences, so you don't want to eliminate it if it isn't really necessary.
This just feels overwhelming right now, but it DOES get easier. And in your child's case, it sounds very encouraging that it may not be forever, either! [img][/img]
Many kids outgrow milk, wheat, and egg allergies before they are 4 or 5.

Posted on: Fri, 02/02/2007 - 2:45am
Anonymous's picture
Anonymous (not verified)

Thanks for ALL the great replies this morning!
Reason why I had my son RAST tested was beginning at about age 2 months, he had HORRIBLE eczema, rash all over face, horrible cradle cap, etc.
NOTHING improved his skin and he also could only tolerate hypoallergenic formula!
Thanks for the great advice and tips on cookbooks, I said before, and as I'm sure you ALL know, this is VERY overwhelming for a 1st time mom...
I have a 4 year old that has NO known allergies and he loves all fast foods, and of course PB&J's and the having to eliminate things from his diet, for the sake of baby brother is NOT going to be fun at all!
ANy suggestions on eating out, or should I just NOT do so?

Posted on: Fri, 02/02/2007 - 5:15am
anonymous's picture
Joined: 05/28/2009 - 16:42

Quote:Originally posted by Hawknz:
[b]Reason why I had my son RAST tested was beginning at about age 2 months, he had HORRIBLE eczema, rash all over face, horrible cradle cap, etc.
NOTHING improved his skin and he also could only tolerate hypoallergenic formula!
This was my DS's story too. He's 17 months now and allergic to Wheat, peanut, Egg, soy milk, sesame, cats, desitin and balmex, and we suspect a whole lot more. However, since removing the food he's allergic to from his diet (and mine when nursing) his eczema is gone, unless he gets into something.
It's a huge change in life. At first DH and I still went out a lot and didn't remove food from our house but over the last several months (and lots of reactions) weve decided to remove wheat, egg, sesame, and peanut from the house. These are DS's most sensitive and it has made such a difference. We still have some milk but we keep it well contained and we've never been big on soy. We went through a cleaning phase where every corner was scrubbed. We don't allow others to bring food over. Fast food is only for when DS is not with us (reactions), and eating out has become difficult to do. We occasionally do and order only steamed vegetables (no butter or seasoning) and we always explain his food allergies. We still occasionally have reactions. Other precautions when eating out (or even a friends house) we use a floppy, bought and use a place mat, wipe everything down, and check (as much as possible) for x-cont. of dishes etc. We always keep meals and snacks for him with us. It turns into a lot of work so lately we just invite others over and make dinner ourselves.
Nutrition has been a worry for us too. We have opted to keep DS on formula although we have cut it back quite a bit. We hope that he can have milk and soy soon.
I've found that the hardest allergy for us is wheat. It is in everything and is everywhere. It's almost impossible to keep contained because of flour and crumbs. This is the allergy that DS is most sensitive to. Especially since you have to worry about rye, you might want to do some shopping online from companies that cater for celiac disease. The two I prefer are:
We use Mrs Robens products for baking since they are guaranteed wheat free, unlike other companies that say they are because they clean well between. Most wheat free breads you can buy are just odd. Tinkyada makes really good rice noodles and Lundberg makes good rice cakes. Since DS is a toddler we have our "Cheerio Substitutes". We use Kix which is mostly corn products, puffed corn/ rice, and amaranth O's. Sunbutter makes a really good PB substitute although it does have a soy contamination warning. There's Peabutter too but we think it is discusting. You can find some of these foods at Wild Oats or Whole Foods if they are in your area.
Some lessons I've learned. Oatmeal is almost always manufactured in the same facilities as wheat. Lots of x-cont. Don't trust baby foods. Especially baby cereals and especially Earth's Best/ Hain Celestial. Be careful around pet food (and pet licks). Always check and recheck ingredients. It's amazing where you find some of these allergens. Check soaps and lotions. Avoid processed foods. Avoid processed meats like sausage and lunch meat. Can contain fillers not labled for. Always have benedryl and at least 2 epipens with your child.
An issue we ran into early on with DS is plain ignorance. I know this is long but a short story. I told the nursery at church every week that he was allergic to xyz. After a couple weeks of reactions every sunday I told them not to feed him and still had reactions. One day I caught them giving him goldfish. The ladies could not understand that goldfish would be dangerous for him because "Every kid eats goldfish." We still have reactions so he now sits with us.
It is a big change but your not alone. There are a lot of others here who have a wealth of information and ideas. I learn something new everyday. Sorry so long [img][/img]. Good Luck.

Posted on: Fri, 02/02/2007 - 6:22am
Anonymous's picture
Anonymous (not verified)

Thanks AndysMom...don't EVER apologize for message being too long, I'll take ANY and ALL information I can get right thank you SOOO much for taking the time to be so detailed!
I appreciate the shopping website links, and all the information...
Can I ask you what sort of reactions your DS has had? I ask, because I totally understand the need to be soooo careful about going out or even over to friends with the placemat and wiping things down, but if my DS has never reacted other than with skin rashes or bad diaper rash and i think he wheezes a little with milk products...but I just wonder if people will think I'm NUTS for being soooo careful and protective (MIL for example) she's soooo old fashioned and I can already tell she does NOT see the potential severity of a reaction in my son,but also, I just don't want to be a totally freaked out and overprotective mother, if I don't need to be!
I DO have 2 epi-pens and benedryl, but wonder, for your son, do you keep the liquid benedryl? i see they have the mouth-strips...might be more convenient for on the go?
Sorry for all the questions...I just feel my allergist is GOOD, but has NOOOO extra time in the world for all my silly questions and concerns and his answers are always brief and to the point! He says since DS's wheat allergy was just level 3, I should do a rotating diet of wheat, maybe 4 servings a week? and he told me to NOT avoid milk, cause allergy was slight, yet the 2 times I've given DS milk, 1st time his eyes got all red and face broke out and he scratched his face and hands for 2 days...also had bad diaper rash 2 days later...tried again a week later and face is slightly broken out, no diaper rash, but has started kinda making a wheezing noise only when he breaths in, not always, just when he is laughing and gets really excited.
So, to me, he's reacting to the milk...
Sorry, I'm rambling...just wondered if you've experienced an anaphylaxis reaction and if so, what happened?
also, I'm from the midwest and am NOT familiar with what a "floppy" is? can you fill me in?
thanks again for all the great info and advice...

Posted on: Fri, 02/02/2007 - 1:18pm
solarflare's picture
Joined: 02/07/2002 - 09:00

Ah... I've been in your shoes, although my son was a little older when we had him tested.
Be careful with the nutritionist or dietician. Many of them are not well versed on food allergies. The number one complaint I've seen from other parents of food allergic kids who have seen dieticians is that some of them are not very knowledgable about allergies.
You might want to go take a peek over at is great for peanut allergies, but kwfa is more helpful in regard to your son's other allergies. There's some overlap in membership too.
Cheryl, mom to Jason (9 MFA including peanuts, tree nuts, shellfish and egg)
Joey (7 NKA)
Allison (4 milk allergic, suspect shellfish, avoiding PN/TN for now)
Ryan (1) nka *knock on wood*

Posted on: Fri, 02/02/2007 - 1:38pm
Anonymous's picture
Anonymous (not verified)

Thanks...I think that's the main reason why I haven't bothered seeing a dietician or nutritionist yet, is that most answers I've gotten from them, or their information sources is NOT allergy specific.
I'll certainly go check out the kwfa website...thanks again!

Posted on: Sat, 02/03/2007 - 10:38am
anonymous's picture
Joined: 05/28/2009 - 16:42

My DS typically only has hives and occasionally diarrhea when he gets into something he is allergic to. Having said that though we have had a few scares. When I finally decided we needed to see an allergist (pediatrician didn't think we needed one) was following a night of DS screaming from stomach pains and severe diarrhea. I only recently found out this can lead to another type of anaphylactic shock.
(torwards the bottom)
We also have had one episode where I should have brought DS to the hospital but didn't because I just didn't know. He use to eat a lot of rice crackers with sesame in them and never reacted. I gave him tahini when he was about 12 months thinking he wasn't allergic to sesame and he immediately spit it out, started rubbing the inside of his mouth, swelled some, ect. I knew about his allergies at the time but I didn't know we could give him benedryl and we didn't have any epi's. His ped. seemed to think that it was all mild enough that it wouldn't be an issue. In hind sight I realize how close to death he actually was but at the time I thought he was still breathing so he's ok. When it came out the other end it left huge welts on his bum. It took him weeks to recover. One thing to keep in mind about food allergies is that one time can be nothing but hives the next time can be shock. Reactions can vary even in the same individual. However DS does tend to react differently to different foods. For ex. when DS reacts to wheat I can always tell because it starts as hives and if we don't benadryl he gets cramps and diarrhea a little while later and then eczema a few days later. Milk he gets hives from contact and ingestion but nothing else.
What you said about your allergist wanting you to continue wheat and milk concerns me. Most of the medical community agrees that a childs best chance of outgrowing an allergy is strict avoidance, something about the immune system "forgetting" the allergy. Also if your child is wheezing after drinking milk don't give him any more. The other symptoms you said he has would certainly make me think he is quite allergic to milk. Keep in mind that the numbers from tests only show that your child would have a tendency to be more allergic. A level 5 may have nothing but hives when ingesting and a level 1 could go into shock. Wheezing is serious and is a definitive time to use the epipen so long as it is related to his allergy.
Another thing you might want to consider is that your child has asthma. There is something called an allergy pathway that some kids follow. Often it occurs the following way, atopic dermatitis then food allergy then asthma. These are only possibilities but something to keep in mind with children like ours. If it's possible I would recommend you get a second opinion from another allergist. Does your child still struggle with eczema? If so it could be because wheat and milk are still in the diet. When I removed "may contains" from DS's diet it also made a large difference.
I know how you feel about being overprotective. When we hang out with friends, especially when foods involved, I just make a blanket statement that normally goes "I know I sound like an over reacting mom but please remember Andrew has food allergies. Don't feed him anything and make sure you wash your hands before touching him." I usually get the your crazy looks but I get a lot of questions too. Most of our friends have seen or heard of his reactions now and are more understanding then they use to be. I still always watch him like a hawk especially because he's such a mouthy kid. For a couple years at least I think we will be labeled as over-protective.
I haven't looked for myself yet but I think that the benadryl strips have soy in them. DS is crazy and loves just about every medicine though so it's not too much of an issue for us.
The Floppy is such a help with peace of mind. We keep it in the car and use it when shopping or eating out. [url=""][/url]
Hope I helped.


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