Tuesday, December 30, 2008

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!!

Friday, December 26, 2008

KozyEpi - EpiPen carrier

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

Friday, December 12, 2008

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

Tuesday, December 9, 2008

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!

Saturday, December 6, 2008

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).



Friday, December 5, 2008

"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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Wednesday, December 3, 2008

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."