Two Book Recommendations

The two books I am listing here today are not books "about food allergies" - but they have certainly helped me understand my food allergic son very much. They would fall into the category of parenting with special needs.

1. "Raising Your Spirited Child - a guide for parents who childe is MORE intense, sensitive, perceptive, persistent, energetic" by Mary Sheedy Kurcinka

It talks about how children have their own temperament, has helped me learn to understand and accept my child with the temperament of his own, to view them as a blessing instead of something that I have to change, tame, fight with. I am not alone!
Me and my husband both bought one book each for ourselves, and also a workbook that comes with it. I think I am done with this book and would be happy to pass it on to the next person. So let me know if you'd like this book.

2. "When Love is Not Enough - A Guide to Parenting Children with RAD-Reactive Attachment Disorder" by Nancy L. Thomas

I found this book to be, unexpectedly, very helpful in understanding my own son psychologically. It has made me realize that, before his food allergies were diagnosed, how much pain he was inflicted upon - 24/7, wth no way out. I am not surprised if this sort of "emotional, physical, trauma" has had an impact on how he learns to relate to the world, including his mother. Also included is good tips on how to draw boundries and to protect "myself." It talks about how parents can be emotionally abused when the children they are raising have issues (Reactive Attachment Disorder in this book). In the book, I learned it was OK to fee the way I was (wondering if I understood and was connected to this child, for example), and was also given lots of hopeful tips. If you feel like you need someone to understand your struggle, this book puts a lot of those feelings into words.

Blessings to all of those who are working hard for the best days!!

KozyEpi - EpiPen carrier

Wanted to introduce a seemingly kids-friendly and an easy to carry EpiPen carrier, KozyEpi!

Some alternative/Chinese medicine point of view

This is something I wrote about a year and a half ago, after living in Japan for 15 months in response to someone who asked how allergy test scores and the severity of food reaction relates to each other.

In Japan, allergists are aware that the score does not necessarily relate to severity or reaction, and I got the impression that they take more notes on what has actually happened, also how the numbers have changed, rather than what the number is at the moment.

My son has retested positive to egg yolk/white while we were in Seattle and we were told to stay away. A couple months later, we moved to Japan and the allergist there said something like "although the RAST test gives us this number (which wasn't necessarily small - I will try to find the number), he's been avoiding it for sometime (3.5 years then), and the number has actually decreased, so let's give it a try." and he did pass egg yolk challenge (but not egg white). So I guess I learned that science, numbers cannot tell everything, and sometimes experience is more reliable.

Again, sharing another personal dialogue; when in Japan we have visited a western medicine doctor, whose father was an acupuncturist, his father in law was a Chinese medicine doctor, and his daughter is an acupuncturist as well. So his office basically incorporates both eastern/western medicine. He would check my son's pulse, would look into his eyes, the whole eyeball almost, touches his skin, presses his abdomen, and take notes of his medical history, and gives a thorough traditional diagnostics. According to him, it's been said from the old times that, in general, when a child has bluish lines (blood vessel) between the eyes, they are the very very sensitive type.... not just emotionally, but immune systems tends to be as well....! (I wonder if this is true, parents in this group, I'd appreciate your response, if you can see it on your child's face? Or it could be just for Asians; We do come with Mongolian Patch, blue-ish purplish birthmarks).

My son was then prescribed Chinese herbals and has been on it for about 1 year. The idea is to change the body system (because what you eat is who you are) to be more calmed down, again with sensitivity to all different sensory input, food being one of them.

I asked if accupuncture helps (we don't have to do needles for young ones, but rather simply stimulate the points), and he gave me a great nod "oh yes sure, they will". At first my son was reluctant to the idea of acupuncture (as the word is the same sound with Needle - sounds ouchy), but soon he realized it feels good and he actually asks for it sometimes now.

It might sound bizzar scientifically (my husband who is a scientist does not get it), but I think this one year treatment have greatly improved the situation for us. Ofcourse, it could be that he simply is growing out and growing up with stronger systems. However, I am thankful we have had a chance to be exposed to these new stuff.

Now we moved to Fort Collins, CO after one year in Japan, and are working on BioSET right now.

The L.Ac here says, my son is not actually allergic to peanuts, nuts, eggs, sesame, oats, barley, most dairy, among others (which the RAST-test says he is), but rather "INTOLERANT" - she says he is definitely allergic to milk = albumin (but not cheese) and buckwheat and wheat. I am not quite brave enough to try them yet, but according to her, he's lacking the right amount of enzyme to digest those food (peanuts, nuts, etc) properly that he gets an allergy-like reaction. She says that blood tests, skin tests in allergists office do not give enough information on whether one is truely allergic, or is simply "intolerant" - I'm still needing to test and confirm what she says, but just throwing this out as an example of allergists scientific method not being complete. (I honestly don't think I can give my son Cheese now, just because she says it's OK, but it kind of explains why the test scores alone don't give us the whole picture of what our child is experiencing, what could happen etc).

Now I read over this, and I realized how my son did NOT react to cheese when he ate it without knowing at his friends house (scary!! but without problems!!). This friend told me a couple days later how well he ate their food, I asked what he ate, and in it was cheese ....

Just throwing out some information to confuse people further....

Our Legislators Regarding Food Allergies in School

Dear Members,

Thursday December 11 was a meeting called PSD Legislation Summit. In attendance was, but not limited to: Senator Bob Bacon, Rep. John Kefalas, Rep. Randy Fisher, PSD Super. Wilson, and US Congresswoman Betsy Markey. The following question was read by the Moderator:

"Several State legislatures have recently passed laws regarding food allergy management in public education facilities. Legislation is currently pending in the U.S. House of Reps. and I have heard legislation may be introduced in the Colo. House. Are you aware of this? And are you an advocate for it?"

None of the above listed attendees voiced knowledge of the food allergy legislation. One or more stated Colo. is an on site managed school system and these matters may be better managed on a local/individual level.

This meeting can be viewed on the PSD Cable Channel 10 or contact district for other ways to view so you can generate your view of this issue...

Catherine

Cooking Class for allergies

Dear Members,

I am pleased to offer a cooking class lead by Linda Hoffman a local chef and avid student of nutrition. Linda runs a business called Back to the Table that offers cooking classes and catering. Linda specializes in whole foods cooking and nutrition. Linda also writes a column for the Coloradoan featured on Wednesday mornings.

Details: The class is specially designed for parents dealing with food allergies focusing on healthy fats that include: coconut oil, butter or ghee, avocado oil, and pumpkin seed oil (no tree nut or peanut). Class will cook a meal that will involve chicken or fish and vegetables. Included will be several recipes for quick dinners and snacks, how to cook wild and brown rice and oats quickly, and possible substitutions for items family may have allergies to. Linda will also include nutrition information and local farmer contacts for fruits, vegetables, and pasture raised animals.

For more information on Linda please look up her website at: www.comebacktothetable.com

*PLEASE CONTACT ME BY DECEMBER 17 IF INTERESTED. RESERVATIONS WILL BE FIRST COME FIRST SERVE AND MUST HAVE 8 PEOPLE. CLASS FEE IS $40.00. DATE: SUNDAY JANUARY 18, 2009 5:00 PM-8:00PM.*

Happy Holidays!
Catherine
rcateck (at) msn.com

GoPetition.com

I just learned of this site GoPetition.com and was thrilled. Not growing up here, writing petitions is not easy and this makes it very easy to get parents/caregivers voices together, e.g. so we could work on the school district to establish policies on food allergies!

Inspiring Children with Allergies Network (I-CAN)

Leader of local food allergy support group I-CAN (Inspiring Children with Allergies Network)has asked the group, if anyone might be interested in a "magazine share" group.

Each person in the group has a different magazine subscription and we share our monthly issues? ... I thought this would be a fun way to get the benefit without the pocket book. Magazines such as: Living Without, Prevention, Heathly Living, FAAN Membership (share newsletters), and many more. Let me know if interested-Catherine (rcateck (at) msn.com)

A great idea. She has been organizing I-CAN with our own meetings, coordinated meetings with local Asthma education group, Egg-free-Egg-Hunting and other fun events.

I-CAN has a mailing list that Catherine maintains, as well as a Yahoo Group another member (Pam) maintains. We are run by volunteers, mostly parents of children who have food allergic children. Some has other conditions such as eosinophilic esophagitis as well.

Through mailing lists, we try to exchange information about doctors, experiences, how to work with schools etc. One project a couple of members are working on right now is, to implement a policy in the school district regarding food allergies. More information on that could be found on this link.

For more information about the group, please contact Catherine (rcateck (at) msn.com, 226-6181).

"Parents advocating for food allergy safety in PSD"

Parents advocating for food allergy safety in PSD

Fort Collins Coloradoan (CO)

October 26, 2008
Author: HALLIE WOODS Section: A Section
Page: A1, A2
Estimated printed pages: 4
Article Text:By HALLIE WOODSHallieWoods@ coloradoan.com

Almost a year before her daughter's first day of kindergarten, Katie Martin is already nervous about her daughter going to school. Four-year-old Lily Martin is severely allergic to peanuts and tree nuts and can suffer an anaphylactic reaction simply from a brief brush of peanut or tree nut oils on her skin. That can mean anything from a drop in blood pressure to narrowed airways, a rash, swelling, vomiting to unconsciousness or death if not treated with an epinephrine injection, or a trip to the emergency room. Though Martin wants her daughter to go to school like any child, the thoughts of lunchrooms where peanut butter sandwiches are served and delicious but dangerous snacks can come into the classroom at any time worries her. While Lily is still in preschool, Martin and Cheryl Pietrangelo, whose son, Connor, also has severe peanut and tree nut allergies, are working with Poudre School District on a food allergy task force to create better awareness, education and resources for their children and so many others who have food allergies. "We just want our kids to be safe," Pietrangelo said. Food allergies growing About 3 million children 12 years and younger, or four out of every 10 children, reported having food allergies in 2007, according to a study released last week by the Centers for Disease Control and Prevention. And those numbers are continuing to rise. Food allergies have increased 18 percent since 1997, when 2.3 million children reported food allergies. Medical officials have come up with a number of possible explanations for the increase, though there's no definitive answer. "Doctors are reporting more children in their clinics with food allergies than ever before," said Anne Munoz-Furlong, founder and chief executive officer of the Food Allergy and Anaphylaxis Network. "All signals are saying that we are becoming more allergic as a population. The question is why are we becoming more allergic, has it peaked or is it still growing, and can we stop this allergy trend?" Munoz-Furlong said she believes the increase in allergies is due to both more diagnoses and prevalence. Just eight foods account for 90 percent of all food allergy reactions in the United States: milk, eggs, peanuts, tree nuts, wheat, soy, fish and shellfish, according to the Food Allergy Anaphylaxis Network. Children are most commonly allergic to peanuts, milk and eggs, said Lisa Thackwell, a physician's assistant at Colorado Allergy and Asthma Centers' Fort Collins clinic. "Often when patients are diagnosed with a tree nut of peanut allergy, we often have them avoid the other because they are often processed in the same facility and there is greater risk for cross contamination," Thackwell said. Tree nuts include walnuts, pecans, pistachios, almonds, cashews and Brazil nuts. Lily was a toddler when Martin smeared a small amount of peanut butter on her lips. Within minutes, Lily's breathing was compromised and she was rushed to the hospital. "I literally turned back around and her face was completely swollen," Martin said. About 100 to 200 deaths occur each year from the 30,000 episodes of food-induced anaphylaxis, most of which affect children and adolescents, according to the National Institutes of Health. Lily has been able to avoid accidents by avoiding peanuts, tree nuts and items that can be cross-contaminated. Small doses of epinephrine go with Lily everywhere, Martin said. The family also eats only at certain nut-free restaurants that can ensure Lily's safety, and her preschool does not allow any nuts in the classroom near Lily. Allergies in schools Martin and Pietrangelo said they first felt concerned to hear that most schools provide a daily peanut-butter-and-jelly-

sandwich lunch in the cafeteria. "We just want more acknowledgment that this life-threatening allergy exists," Martin said. PSD does, however, provide health-care action plans for students with allergies, working individually with parents, students, teachers and staff to provide a safe environment for the student. Each school will also provide peanut-, tree-nut- or other allergen-free tables, requiring all students sitting there to have a peanut- or tree-nut-free lunch. The tables are also cleaned with special soaps and sponges that do not touch the other tables, which reduces the chance of cross contamination, said Nancy Weber, health services coordinator for PSD. With parental permission, staff can also provide information to other students in a classroom about classroom snacks and washing hands. Cafeteria staff cannot guarantee that food being served in the lunchroom has not been contaminated in the production facility, but parents are welcome to read labels and boxes of cafeteria food supplies, said Marei Wallace, child nutrition supervisor. Health-care staff, teachers and employees who are in regular contact with a student with allergies can be trained to use emergency medication, such as an epinephrine pen, in case of a reaction. In addition to these measures, the task force also hopes to provide online information and resources on the district's Web site for new families or families whose child was recently diagnosed, Weber said. "There are schools that handle it very differently," Munoz-Furlong said. "There is not one way to manage food allergies. It really depends on what works for the students. What is consistent is education and awareness, not just with the staff, but with everyone in the school." Munoz-Furlong said it is important that other students in the classroom are aware of a classmate's allergy to prevent contamination or food sharing. "Children care about each other, and if a child has a food allergy reaction in school, it traumatizes all the children," she said. "If they see their friend collapse or carried away in an ambulance, it's traumatizing. In a school, a classroom becomes a community. What happens to one affects all of them." At the federal level The Food Allergy and Anaphylaxis Management Act of 2008, recently passed in the U.S. House of Representatives, will make available a voluntary nationwide policy for managing the risk of food allergy and anaphylaxis in schools. On the Internet The Food Allergy and Anaphylaxis Network: www.foodallergy.org Copyright (c) The Coloradoan. All rights reserved. Reproduced with the permission of Gannett Co., Inc. by NewsBank, inc. Record Number: ftc30994001

FWD:African American Asthma Study Information

Allergy & Asthma Network Mothers of Asthmatics
November 18th, 2008

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New CEO for FAAN

FAIRFAX, Va., Dec 01, 2008 /PRNewswire-USNewswire via COMTEX/ -- The Food Allergy & Anaphylaxis Network (FAAN) today named Julia E. Bradsher, Ph.D., as its new CEO, replacing Founder Anne Munoz-Furlong, who is retiring.

Dr. Bradsher brings to FAAN extensive knowledge of anaphylaxis, a severe, potentially fatal allergic reaction. For the past six years, as Senior Director of Marketing, she led the marketing team and strategic planning for all Dey Pharmaceutical products, including EpiPen(R), an autoinjector device containing epinephrine, a drug that can stop an anaphylactic reaction. In that role, she has dealt extensively with leaders in the allergy-related scientific community. She has also conducted research on the needs of those who suffer from food allergy and anaphylaxis.

Frank Yiannas, FAAN's Chairman of the Board, said, "Julia's background in the treatment of anaphylaxis, her knowledge of the allergy community, and her passion for protecting food-allergic individuals are what made her an ideal candidate for this position. She is well positioned to help set FAAN's strategic agenda for the next five years."

Hugh Sampson, M.D., FAAN's Medical Director, said, "Julia's background in health policy and administration, her understanding of anaphylaxis and its effects on patients and their families, and her appreciation of the history and culture of FAAN make her an ideal candidate to lead the organization over the coming years. With Julia, our patients' welfare and scientific accuracy will remain at the forefront of FAAN's mission."

Bradsher holds a Ph.D. in medical sociology from the University of Miami and a master's in business administration from the Sawyer School of Management at Suffolk University in Boston. She has authored 10 journal articles, seven book chapters, and other solicited publications, and she has held research and faculty appointments in private research institutes and universities.

Anne Munoz-Furlong, FAAN's Founder and CEO for its first 18 years, said, "We have been searching for someone who can provide the intellectual leadership and the compassion for the families affected by food allergy and anaphylaxis. Julia has both and will lead FAAN into the next phase of its growth."

Giving Thanks at Thanksgiving

Thanksgiving, one of the festive time of gathering around food, has often not been one of the most allergy friendly events for me and my 6 year old son. However, now I look at it as a perfect chance to bring up the topic. It's because, we all come together agreeing that we all want to enjoy food - food is such a center of the occasion, not an additional cake etc. But yes, if you have other cooks, planning and communication is always important. For now, I would like to remind everyone that at times things might seem tough, but it will get better. I am thankful for the fact that I am making progress, and so let me share a little bit about that.

Here is my journey:

1. Just learning about food allergy
   --> Totally at loss, don't know what to do, feel resentful that we won't be able to join parties, because there is probably going to be no food that's safe.
2. Slowly getting a better grasp of food allergy and allergens
   --> If we have good relationship with someone who cooks and enjoys cooking, feels encouraged to open up the topic about what could be eaten and what not. Still taking chance of accidents, and when nothing happens, falls asleep so fast with relief. Or, when something does, beats herself up for allowing this to happen.
3. Having more information and control of the FA(=food allergies)
   Feeling more and more confident, ready to deal with accidents should they happen, but optimistic that they won't 99.99% of the time. Still aware and is keeping eyes open.
   
4. Feeling more relaxed and believe that things are going to be fine~
   (My goal is to get here.)
   

I am sure others have a lot of experiences and great ideas on how to continue our journey from stage 1 and up, and make special occasions more survivable & enjoyable. If you have anything to share, please feel free to leave a comment.

Personal Chef (from local collage student)

I wanted to share something that has worked out very well for our family in the past.

We had a local CSU student be our personal chef - plus my cooking teacher.

You can post an ad on the student emplyoment site (http://ses.colostate.edu/) and here's what I did. I put a bit of information on
- my son's allergy,
- how we are needing someone who is aware and can accomodate food allergies,
- my needs of wanting someone who can teach me how to cook
- take care of the cleanup part as well.

My kids were small enough that they'd rather have me be with them and having someone else do the cooking, rather than a babysitter watch them while I cook - well, cooking is NOT my strength, and perhaps having an international background was a helpful excuse to say TEACH ME!. I got at least 9 responses, and have settled to one guy for now. He loves cooking (a business major), loves experimenting with food, etc. Some other reponses were from students who has celiac or food allergies themselves, or who have a friend/family who has them, or some studying to become dietician, saying this will be great learning experience for them.

Here's a flow of what happens:
- J (the guy's initial) would send me in a couple of recipi ideas in advance,
- I get to choose which ones to cook,
- he then sends back ingredients list,
- either I or he picks up the needed stuff from grocery stores (if we don't have them at home),
- the cooking day, he comes over later in the afternoon, does cooking demonstration while I assist (like chopping, cleaning),
- when it's all done he packs his own portion to take back,
- the rest would be served on a plate or kept wrapped in foils etc till we eat,
- we clean up the kitchen, and
- then he gets paid ($15 first hour, $10 for the next, plus grocery), and takes off.

He would often stay up to 2 hours, we pay him $25, which is in our case $5/person (with some left overs for the next day). If I am to do this again, I'd certainly make doublt batch so we could store up the rest for later days.

Halloween Ideas (2)

A friend shared her Halloween tricks, and here it goes (thanks E.P.!)
-----------------------------

Hello, all. We have a technique for dealing with Halloween that has
worked well for us in the past. We make an offering to the Great
Pumpkin (or you could call it whatever you want). My kids
trick-or-treat. Then we sort the candy leaving just a few pieces that
we know are safe. The rest we leave out on the front porch for the
Great Pumpkin to take away (translation: mom waits until the kids are
asleep then throws all the remaining candy in the trash). In the
morning the Great Pumpkin will have left a gift for each child on the
front step in place of the candy. (Again, this involves me leaving a
gift on the front step very early in the morning for the children to
find.) It's fun since the kids get to anticipate a present and it
saves having to explain repeatedly that "no, that one has peanuts in it
so it's not safe for you to eat." You can have the kids keep as much
or little candy as it appropriate and safe for them. Maybe they don't
keep any but the Great Pumpkin offers some safe candy or treat for them
in return for their "offering." I hope this idea helps. It has really
been a life-saver for us. Good luck.

Halloween Ideas (1)

I just wanted to share something we did this year and I thought it turned out pretty well.

We had a Pumpkin Bank offer free accounts to all customers (with a free tattoo as an incentive).
The children would deposit whatever amount of candies they'd like, and for each candy they drop off, they will get 5 cents.
For example, child A brings 5 candies, he gets 25 cents.
Instead of giving out actual coins though, they were given a little bank check, where we fill in the following information
1. their name
2. the number of candy they deposited
3. the amount of money the Bank owes
They'd bring the little slip back home (along with a note to the parent, explaining how this system works),
and hopefully the parent will let the child withdraw the amounted stated (from their wallet).

No upfront cash needed to get the bank started. My food allergic son was so ready to exchange his Yummy into Money, and so were (some) other children - not all. A quick report of what I sent out to neighbors to follow.

------------------------------------------
NOTE to PARENTS:

Dear Parents,
Your child has deposited some goodies (to be donated to the food bank) and is thus given a "Check" from the Pumpkin Bank.If you could support the bank by allowing your child to withdraw the noted amount (from your pocket), that will be greatly appreciated! If you would rather not, your child could still withdraw his/her money from one of our branches. Please instruct them to visit Mitsuko. Thank you.

-------------------------------------------

PUMPKIN BANK REPORT sent out this morning

Some informal reports from the banker:
Angelica was the very first bank visitor. And a very good repeater.
Liana is the one-time drop off champion - 9 candies at one time.
Leslie is the most candy drop off champion - 11 candies total (after adding more and more cady to deposit)
Thomas was pthe very curious, and yet very determined not to deposit any candies. In order to solve his internal conflict, he came up with a brilliant idea - to deposit his brother's candies - but then gave up when the banker told him, the coins too will have to be his brother's.
Jade wanted to deposit the gummy bears that was once in his mouth - the banker had to decline the yummy offer this year. We'll see how it will be handled next year.
Mali C. was the oldest depositor - thanks for coming!
Olivia was the last to deposit as we were cleaning up - a nice surprise.

We had many other visitors, too many to list, and the total deposit last night was 71 candies! These will be handed over to Katharine and she'll take care of the rest (donate it to food bank?).

Thanks everyone, and please come back again next year!

A New Allergies Blog

Here is a new born blog in town dedicated for issues related to food allergies, asthma and the like. Feel free to utilize this space to send announcements etc.

For now, I will post a couple great resources in the area when you're dealing with allergies etc.

• Inspiring Children with Allergies Network (I-CAN)
  Contact person: Catherine
  

• Dr. John James
  1136 E Stuart St # 3-3200
  Fort Collins, CO 80525, United States
  +1 970-221-1681
  

• National Jewish Hospital in Denver
  
  

• Children's Hospital in Denver
  1056 E 19th Ave # B251
  Denver, CO 80218, United States
  +1 303-861-6888