Peanut Allergy - Charleston, IL

Hi J.,
If there aren't any support groups in your area, I'd say start one yourself. Food allergies can be deadly and deserve to be honored. I would ask your school if they can accomodate your child's needs. There's got to be someone who has experience with it. I'd also do alot of praying. Don't mean to get all religious here, but God has always come through for me when I was at my wits end. My son was diagnosed with lots of food allergies early in his life and has been on asthma medicine since he was 8 months old. Its frustrating, but there is help to be had. You'll find what you're looking for. You just have to keep trying no matter what. :) My son is allergice to peanuts too, but he's tolerating almond butter so that's what we use. You can always order food online, if you're having trouble getting what you need. I know that there's a gluten-free mall online. If you do a search for kids and food allergies online purchasing you'll find it. In my experience I have just asked the owner of the market- if its family owned, they'll be more likely to want to get it for you. I recently asked if they would consider getting Goat Milk on their shelves, that my son drank alot of it and we were currently having to go across town to get it. They ordered it and are currently still stocking it! Stay strong, you'll find the way! :)
Blessings,
J.

Hi J. - a great site is www.kidswithfoodallergies.org - over 11,000 parents of FA kids there.

Also support groups:

POCA (Parents of Children with Allergies) of DuPage County, a similar support group in DuPage
www.pocaofdupage.org

POCHA of Will County Parents of Children Having Allergies
www.pochaofwillcounty.com

MOCHA - main site - Highland Park, IL and northern burbs
www.mochallergies.org

MOCHA - Chicago (Mothers of Children Having Allergies
Contact: Lorraine Bachand
Meetings at: Children's Memorial Hospital Outpatient Center

MOCHA-North (Mothers of Children Having Allergies)
Contacts: Denise Bunning, Anne Thompson
MOCHA Northwest
Contact: Dana Trawczynski, ###-###-####

FAAN's support grp page: http://www.foodallergy.org/anaphylaxis/SupportGroups.pdf has:

CIFAN; Central Illinois Food Allergy Network
Group Name:
S. Wilds
Contact:
____@____.com
E-mail:
www.cifan.org
To educate members living with food allergies by bringing in professional speakers
and by reaching out to children by helping them integrate into the community. We
also work on developing a social network.
Mission:
Website:
,
Downers Grove
Location: Illinois
POCA of DuPage; Parents of Children with Allergies
Group Name:
K. Konieczny, K. Miller
Contact:
____@____.com
E-mail:
____@____.com
www.pocaofdupage.org
We provide support and information to members and increase community awareness
of food allergies. POCA advocates for change on important issues. We focus on
practical ways of coping with food allergies and anaphylaxis in everyday life. Our
meetings frequently include speakers and discussions.
Mission:
Website:
,
Northern Chicago
Location: Illinois
MOCHA; Mothers of Children Having Allergies
Group Name:
A. Thompson, D. Bunning
Contact:
____@____.com
E-mail:
www.mochallergies.org
MOCHA educates the community and supports families of children with severe food
allergies. We are located in northern suburban Chicago. We also offer tips to help
families cope with the stress in dealing with day-to-day aspects of managing food
allergies.
Mission:
Website:
, Group Name:

Oak Park
Location: Illinois
POCHA; Parents of Children Having Allergies
Group Name:
D. Fascione
Contact:
____@____.com
E-mail:
We provide support, speakers at meetings, social events, education and advocacy
opportunities within our communities and schools. We also have a reference library
for our members.
Mission:
,
Peoria
Location: Illinois
Peoria Food Allergy Parents
Group Name:
S. Kroodsma
Contact:
____@____.com
E-mail:
peoriafoodallergyparents.googlepages.com
We provide emotional and practical support for parents of children with severe food
allergies through meetings, shared resources, social activities, and advocacy projects.
Mission:
Website:
,
Statewide
Location: Illinois
Educational Association; Illinois Food Allergy Education Association
Group Name:
J. Campbell
Contact:
____@____.com
E-mail:
www.illinoisfaea.org
The Illinois Food Allergy Education Association is a not-for-profit corporation
dedicated to educating the Illinois community about food allergies.
Mission:
Website:
,

,
Will County
Location: Illinois
POCHA of Will County; Parents of Children Having Allergies
Group Name:
E. Garrow-Majka
Contact:
____@____.com
E-mail:
www.pochaofwillcounty.com
To provide information and support to our members, to raise community awareness
of anaphylactic food allergies, and to advocate for changes in policies and laws as
needed. POCHA of Will County focuses on practical ways of coping with food
allergies and anaphylaxis in everyday life.
Mission:
Website:
,

After running a preschool for ten years I can not imagine that a factility would not make allowances! We had students with peanut allergies so we bought soynut butter and always provided peanut free snacks. If there were peanut snacks at school the allergy kids got their own table. Milk& gluten free kids were accomidated for as well. Maybe it would just take some education. We were the only facilityin a small townso I felt an extra obligfation to meet parents' needs. Educate the facilities! Good luck!

My 5 year old was diagnosed at 18months. When we sent him to preschool at 3 it was very stressful. Also, this was also kind of new to the school.

It is so important to be the advocate and educator. I agree that people just don't get that it can be life threatening. I understand how they don't get it because I didn't either until...

My understanding from our docs is that one kind of reaction to peanuts/nuts does not tell you what a future reaction might be. The reaction might be mild one time them anaphalatic the next. This is in contrast to what several people have written here. Ofcourse, I always caring an epipen (actually two) and one in his classroom and one in the school office. I have personally trained my son's teacher and teacher's aide. They now state on every monthly newsletter that there are several (in our class four!) students with nut allergies and asking that nothing with nuts gets sent. (This is easy this year as these kids as half day w/o food). Next year will be a different story.

I also agree with those who emphasize the importance of educating your child. We have talked about this with our son from the beginning. He asks if foods are safe (in fact, he used to ask me and my husband that when we offered him food) and if we say no that is the end of his interest.

I guess I would say to know your action plan (devise it with your doctor) write it down and give it to anyone who takes care of your child. I actually have pencil case that has all instructions and medications and I just hand it off.

It is really scary in the beginning but I have found that it gets better!

J.

My step daughter has a peanut allergy and we have just taught her to ask questions about everything she eats. If she doesn't know who made something or what is in it, she will not eat it. My son has a little boy in his kindergarten class that also has a peanut allergy. The teacher sends home reminders about snack and she reads all labels and he also tells her if he has had that snack or not. The kids that have this allergy just learn very quickly to ask questions for there own safety. I hope that helps.

Hi, I have a 3 1/2 yr old son with a peanut allergy and although I don't live in a small town I can definitely relate to your concerns. I come from a large family (I am one of eight children with 14 nieces and nephews) and unfortunately family events have become very difficult because my family members don't understand the importance of it being nut free. Regardless, my advice to you is to first - join any local or online support groups (FAAN/Kids with Food Allergies) if you have not already. Then, after educating yourself more start with the school administrators trying to educate them - you can get lists of foods that are "safe" for school snacks as well as many groups offer conferences and training for educators as well as parents/caregivers(check with the closest city to you and their support groups). The important thing is educating people on the severity of food allergies in general - I doubt your child will be the only child in town with a food allergy growing up - they are on the rise! You can also go to your local newspaper - maybe they'd be interested in doing an article on food allergies (not necessarily talking about your child if you are not comfortable - but the rate of increase in recent years, etc). And I guess the last thing is for you - never be afraid to stand up for your child, her rights and her health - no matter what others might think or how they might feel inconvenienced. Good luck!

Is your daughter in day care and have you talked to the care-giver(s) about the allergy? You can also contact the school district or school to see what their policy is and help to inform them of ther seiousness of this allergy. People are being exposed to the seriousness of the allergy everyday and are beginning to respond; maybe some info from the doctor may be helpful.

There are different forms of this allergy. Our daughter showed a peanut allergy when I was nursing her so we have kept her clear. She showed a stomach/intestinal allergy which is much different than the anaphallaxis allergy (closing of the throat, etc). She doesn't have a very severe allergy and would actually shell peanuts for us. She is now 4 and, after talking to the pediatrician, he has suggested trying small amounts of peanut butter and monitoring her to see if she still has the allergy instead of a blood test (not a pleasant thought with a toddler). Thankfully nothing has happened as she may have out-grown the allergy.

I have a three and a half year old daughter with the same issue. You are not alone, as this is becoming extremely common compared to 10 years ago. Life with an epi pen is stressful, and I am sure you are very concerned. I worked closely with my daughter's preschool to help them understand the issue. I read every label if the class is having any food besides fruit. I have cupcakes at school for my daughter, and she eats her special treat instead of anyone else's birthday cupcakes. Food Allergy and Anaphylaxis Network online has a lot of great resources, including stuff to help you teach daycare and school staff. They also have videos and books so you can help your daughter understand why she isn't eating the same treats as the other kids. I hope you find an allergist who can help you find safe spaces for your daughter. Once she is in elementary school they have to accomodate her. If necessary get an educational advocate, as she has a legal right to a safe education. I hope you find the resources you need.

Hi, I have 2 children and both have anaphallactic allergies to peanuts, tree nuts, and one to eggs and dairy. It is hard, and it is stressful to know that all around there is poison to your kids. Everyone needs to figure out how much risk they are willing to live with, but at the same time nobody is going to care as much about your children's safety as you do. My son was in a wonderful preschool, and even letters were sent out to all the parents regarding his allergy, but in school the teachers still had a huge warehouse size jar of peanut butter in the classroom! I happened to find it on a day when I was looking through the cabinets to see if something they were using that day in class was safe(it wasn't). After a lot of soul searching, our decision was to homeschool our children for now. This is not the only reason we made that decision, but like the final straw that pushed us over the edge. We have been doing it for a few months now, and everyones stress level is way down. I used to spend every moment he was in school waiting for the call that he had been taken to the hospital. For now, we are happy and at least I know that he is safe. Eveyone deals with allergies differently, and it is up to you to decide what is right for you and your children. Take in all the information, and then do what you feel is right for your family. Good luck! -Jen

Hi J. C,
I am so mad hearing your request that there is no daycare or school that is peanut free!!! I am a licensed daycare provider in Illinois and eventhough I have peanut butter in my home for my children, I still have children with special needs regarding food allergies. I have one girl that can have no citric acid, no kool-aid, cheese, milk, etc. I have all of her allergies listed on the frig and in the livingroom by where I do my crafts. Just to make sure we don't use anything that will affect her.
I just find this amazing. Especially after watching the Celebrity Apprentice on Channel 5 with Trace Adkins and his dtr having that peanut allergy.
I wish you all the best and I hope it all works out for you.
C.

Have you looked into the possibility of licensed family childcare in your community? I am a licensed family childcare provider. I have a five year old in my care with a peanut allergy. Since he came into my care at 3 months old, we obviously didn't know about the allergy at the time. He was diagnosed at about the age your daughter is now. Since then, along with his parents, I have become very careful about reading labels etc. His parents have done an excellent job of teaching him to ask if there are peanuts in anything when he is given something different to eat.
I have an epi pen which I keep with us at all times, and the protocol from his doctor regarding what steps to take if needed. Because family child care is a smaller group, I think it's easier to accommodate his needs. All the parents of other children here are also aware of B's allergy and very cautious if they invite him to their birthday parties, etc
So check into family childcare in your area. You maybe able to find someone willing to work with you about this.

K.

My 4 yr old son has a peanut allergy that is not life threatening. His current school and most of the other schools and daycares in the area are all peanut/tree nut free. It is hard for some people to understand how many different food items contain peanuts or are processed in a plant that manufactures peanut products. My sisters have nut allergies and are always asking about ingredients in restaurants and bakeries. Their motivation for finding out what's in something before they eat it is very high because their reaction could result in a hospital visit. Do you have an epi-pen for your daughter in case she has a very severe reaction?

Hi J.. :) I don't have a child with a peanut allergy but my 9 yr old step sister has a very severe one. We too live in a fairly small town. I know your daughter is only 2 but I know with my sister they talked to her about it at a very young age and she had that fear of eating the wrong thing so she always asked "is it safe?" before eating it. I know she has been in preschool, daycare and now regular school and hasn't been in a "peanut free" school/daycare but the people who are caring for her are aware of her situation and my step dad has explained every possible part of her allergy and they all carried an epi pen. I'm not sure how severe your daughter's allergy is and no matter what it's going to be hard and stressful, but I think if you found someone you trusted and explained at ALL to them then everything would be fine. Good luck!

My son has had a couple of allergic reactions to some food, so I've been careful to avoid those as well. No one can understand how helpless you feel and how absolutely scary it is unless they've watched their child have that kind of a reaction. That said, I've become very clear whenever leaving him with anyone that he may have an allergy, so please keep the allergens in a different part of the room and clean the kids up that consume them. I also carry the new portable Benadryl in my diaper bag and let his caretakers know that if he starts to break out in hives, they should give him a dose right away. If your daughter is not allergic enough to require an epi-pen, you may want to try this route and carry 3-4 in your bag at all times. Best of luck to you!

Get in touch with the Food Allergy & Anaphylaxis Network (FAAN), because they have a lot of information to help you. You also need to keep emphasizing to people how serious a reaction could be -- even if it just scares them enough to make them careful around your daughter. My 8-year-old son is also allergic to peanuts, and there have certainly been times when it's gotten scary -- like the lunchroom workers who give out unsafe candy at holidays. But he's been ok, and learns more and more to ask if food is safe. It IS hard, and you have to stay on top of it all the time.
Good luck!

My 4 1/2 year old son had an anaphylactic reaction to milk-based formula when he was barely six weeks old. I found out after testing that he is severely allergic to milk, beef, and peanuts. I dreaded starting him on real food and when I did, family functions were nightmares for a while because no one took it seriously enough. When he broke out in severe hives from a contact reaction to popcorn, people began to believe us. Starting daycare and preschool were both so frightening as well.

However, it doesn't matter what size town you live in ... educate yourselves and those who care for your child. You are your daughter's mother -- you have the primary say-so in everything that deals with her. Tell all caregivers exactly how to take care of her. I did and his babysitter and his teachers have been wonderful!!!

As for how to deal with her being around the allergin -- educate her! :) We started with our son from the day we learned he had allergies. Even before he understood we would tell him that he couldn't have certain tastes from plates because it would make him sick. We were very, very honest with him. Never once has he ever taken something from someone without checking first. He won't even take things from his grandparents without making them check the ingredients list. ;) In fact, as a toddler he was always "sensitive" to foods -- we learned of his beef allergy because of how he would shy away from it. We had him tested and found out that he was in fact allergic and not just picky.

Good luck with this .. it's not fun, but it is manageable and even survivable!! :) Please feel free to contact me anytime you need to talk or need support.

Jess

You've already received great advice. Just know that you're not alone. It is extremely stressful. My husband and I decided to go peanut/treenut free ourselves because our child's allergy is so severe. Our home feels safe, but going anywhere always increases my stress. It has gotten a bit easier over time. I'm still looking for a good suppport group.

If your child is in daycare and they're not sure how to deal w/ peanut allergies you should be able to contact your county health department and ask to speak with a nurse consultant. Many of them travel to daycares and do presentations on how to handle many situations, including peanut allergies! Good luck!

Seems most people know someone w/ this too. my son (3) is allergic, tho not anaphylactic (sp?). he used to just break out into hives for a day. now he vomits after accidental ingestion. i take him to a homoepath, dr. josephine polich, in naperville (www.dupagehomeopathic.com) for treatment (he also has eczema and just recently diagnosed w/ reactive airway disease (the precursor to asthma)). she says that his allergy is getting better since he now vomits instead of just keeping it in; its a sign the body is rejecting what it can't handle. he takes a homeopathic remedy for an allergic reaction, if he has one, and the hives start going away in about 2 minutes. no benadryl! we hv an epipen in case of any disaster. we are fortunate to have a peanut/tree nut free preschool in Naperville that he goes to. i highly recommend seeing a professional homeopath for your daughter's allergy. it can really help improve the condition and may even elminate it (not guaranteed). the best part is the remedy is natural and has no side effects like benadryl has.

This is my testimonial I wrote about my son (go to the page and click "Eczema and Peanut Allergies"):
http://www.dupagehomeopathic.com/testimonials.html

Email me offlist if you want to talk more!

I completely understand what you are going through - our daughter went into shock at 11 months of age from eating an egg, and since then they have tested her for everything and we found out she has both an egg and peanut allergy. Her allergist said most likely she will outgrow the allergies and will be retested when she is 4 or 5. It's very hard when even your closest friends and family can't seem to understand & think you are over-reacting to every little thing, but they have no idea how stressful/emotionaly draining it can be when all you are trying to do is keep your child safe and healthy -people dont understand the things/steps you have to take to make sure your child is not exposed to that food. I competely understand where you are coming from. Our daughter is 2 now, and it has gotten "easier" now that we know what to look for when grocery shopping, etc. The best route to go is to try to get foods that are the least processed as possible. Any other questions, etc feel free to message me :)

Have you been on the website foodallergy.org? It's sponsored by the Food, Allergy & Anaphylaxis Network (FAAN) and it has all types of great information and provides great support. We depended on the website heavily when my peanut-allergic son, now 7, went into anaphylaxis three years ago. They also have a free program that you can sign your school up for that includes a "comprehensive, multimedia program that includes a video, EpiPen® trainer, Twinject® trainer, poster, and binder filled with more than 100 pages of information and standardized forms".

You should also check on your state laws. In Illinois, children with severe food allergies have the right to a 504 plan. The plan spells out everything--with whom and where your child can eat lunch, keeping the classroom peanut free, use of food in classroom projects, and much more. In addition, you have the right to attend EVERY classroom party and field trip. Plus when your child is older, the school must allow your daughter to carry her epipen with her wherever she goes. You can order epipen carriers on the FAAN website when the time is right.

Also, to those moms who think that their child's peanut allergy is not severe, be VERY CAREFUL. I used to think that my son's wasn't severe either and just made sure that he stayed away from peanut products. But he didn't need his epipen until he needed his epipen--his few previous reactions were very mild. Luckily, we had a pediatrician explain that there was no such thing as a mild peanut allergy and that every reaction could be different. He insisted that I carry an epipen all of the time.

Sorry if I scared you, but it's a topic I feel very strongly about. I hope this helps and good luck!

my son had a milk allergy that was really serious, so we saw the Dr. and began to slowly introduce dairy to him in extremely small forms. The dr. showed us how to very slowly over time build up his immunity to the allergy.
He is now allergy free!!!
I know what you mean by daily life being more stressful having a common food allergy.
check out your Dr. see what he has to say, maybe in a couple years, she will be immune to it.

I have had a peanut allergy since I was 7. I am now in my early 40's. It has been rough due to the fact that most people do not get it or care. It is a very serious problem. I have nearly died a few times. I recommend being very vigilant about your child. Be an overly protective parent. Check every food item that comes to school. Your child must not be an adventurous eater. Only allow your child to visit or play at homes that take his/her allergy seriously. This is not a time to take chances. Good luck!