More School Fun

We are heading off this morning to have a "shadow" day for Conor at the local nut free school that he may attend next year for kindergarten.  I went to visit the school myself last week and spoke to the director and two of the teachers.  This is a very small school (only 3 multi-age classrooms for all grades) and only has about 80 kids total.  All staff is trained in epipens, and food allergies every year (of course it is a small staff, but still a good thing)  There are epipens hanging on the wall in the classroom, in the office and on the playground.  They also have a nut free food service provider for lunches, and absolutely no nuts are allowed on the premises.  It seems like a perfect fit for us, but I am a little unsure about the size, having Conor go to a different school then his brother and sister, and of course the price.

Since I think I have a pretty solid alternative, I thought now that the pressure was off, just for fun, I would see how my favorite underfunded, chaotic, nurse-less local public school would address some food allergy questions.  I emailed our not so fearless Principal and asked about the schools food allergy policy.  The principal is they type of guy who tells you what you want to hear, and then never does anything he says he will do, even if you have proof of it in writing.  His first response to me was that the school district web site laid out the policies of the school district in regards to food allergies.  Of course I had already checked the web site, and there is not even so much as the word allergy on it, much less a district policy on food allergies.  I politely emailed back Mr. Principal, and told him I am sure I missed it, but could he please send me the link of this fabulous food allergy policy he was talking about.  In a few days my inbox was blazing with an email message stating that ooohhh gadddsss, I was right, and there was no such policy there.  He gave me the name and address of someone over at the district office who was in charge of the Food Programs and said they should know the answer.

OK, first of all, why should my medical question be handled by the person in charge of food programs?????  Would you send a diabetic to Food Programs to deal with their medical condition??  How about someone with a seizure disorder, or asthma, or cancer????   I know there is no school nurse for the district, but I did not realize that the Food Programs was the medical replacement. It is kind of like going to a Dr. appointment at the local hospital complex, and being sent to talk to the head of the cafateria instead.

So, just for jollies, I have emailed Ms. Food Programs to determine in writing that the district officially has no food allergy policies.  I think I will stand by my inbox now waiting for a response......

Always Take Your Epi Pen - Super Epi Pen Flies Around the Country

Since the creation of Super Epi Pen, everyone in the house has been very excited to figure out what sort of exciting things he can do.  Although they were impressed with him posing and flying, they wanted to know how Super Epi Pen would travel around anywhere he was needed. What if we were up in San Francisco for the day????  What if we traveled to New York on vacation???  Would Super Epi Pen be able to get to these places to save the day.  I tried to explain that it is very important that we always take an epi pen with us wherever we go, but Conor wanted to imagine that us carrying the epi pen with us always was like Super Epi Pen flying anywhere he was needed.  So, I decided to play with photoshop yet again, and try to show Super Epi Pen flying all around the country.  Upon seeing this Conor said "Yea Super Epi Pen is flying, that is what it is like if we take him everywhere."

Super Epi Pen is flying over near the bay bridge in San Francisco.

Super Epi Pen is flying by the Golden Gate Bridge

Super Epi Pen flies by the Statue of Liberty

Please let me know if there is anywhere else you would like to see Super Epi Pen fly.  If you take your epi pen with you, it too will be a Super Epi Pen.

Oh No!!! He Has Asthma Too!!! Links to Get Started With

As I was bribing my sweet little boy to use his nebulizer this morning by allowing him to play the PlayStation (which I HATE) while he sat there, and was thinking back to what it was like when we discovered Conor also had asthma.  It wasn't as overwhelming as the food allergy discovery, and I knew it was a possibility since he is as atopic as they come, but it was still scary, confusing and a new world of medicines, instructions and funny devices.

So, I went back, and tried to find what sites I had saved on my computer, that I looked at to try and help calm me down.  Below is some of the ones I located on what was left of my bookmarks bar since the old computer died.  Hopefully you don't need them now, and won't need them in the future, but just in case......

http://www.aanma.org/headquarters/ 

This is the Allergy and Asthma Network's Mother's of Asthmatics website.  This is a great website filled with tons and tons of information.  There is so much information that I have come nowhere near looking through all of it, but it is a great resource to start searching for what ails you.  (or your child)

http://www.aaaai.org/patients/resources/inforequest.stm 

(click on Tips Brochures to read them first)

This is the really really great American Academy of Allergies, Asthma and Immunology, and there is so much good stuff on here not only for food allergies, but for asthma.  There are great general overviews on what asthma is, what the medications are, and how to use them.

http://www.aafa.org/display.cfm?id=8⊂=14

This is the Asthma and Allergy Foundation of America's website, and is also filled with great info on everything generally dealing with asthma. Check out the asthma overview.

Also look at the glossary of asthma terms here.

National Jewish: About Asthma

This is a great overview of what asthma is, and how it effects the lungs and breathing.  There is a ton of great general information here and a great place to start reading.

Checklist of early warning signs

This is a great checklist from the Jewish National site about early warning signs of an asthma attack.

Asthma Action Plan

This explains how to create as asthma action plan with your doctor, so you have a clear picture of what you need to do and when.  It also gives you helpful tips about what to ask your doctor in developing your plan.

Why Super Epi Pen is my Super Hero

I am sure you have all been wondering recently what my obsession is with super heros, and why I feel the need to dress up all sorts of things around me as super heros.  My husband saw me dressing up the epi pen as Super Epi Pen, and thought all the recent stress had gotten to me, and I had finally, officially lost my mind.  But no, there is some sort of bizarre logic behind all I do, even if it only makes sense to me.

True, I dressed up Buster the Pug long ago, but the new desire to dress up epi pens as super heros is a new phenomena for me.  I think it really started when Conor recently discovered that the epi pen is actually a shot he would have to receive if he got sick from eating a peanut, or getting too close to a cat.  His new modus operendi is to run screaming in the other direction if anyone even mentions a shot.  (this was loads of fun when he was getting his flu shot).  He did not want to see the epi pen, was upset if he saw me take the epi pen out with us, and said he would never, ever, ever let it be used on him.

To try and explain why the epi pen was really a good thing, I started trying to describe it to him in terms he would understand.  Conor loves Superman and super heros in general (the fruit does not fall far from the tree).  I explained to him that the epi pen was kind of like a Superman, who would fly in to save him in an emergency.  It was not a bad guy who was there to hurt him, but a good guy who was there to save the day.  Conor really liked this idea, and asked what Super Epi Pen would look like.........

Taking inspiration from one of the greatest artists of the 21st Century, Terry over at Bent Objects, and helping Natalie pry those annoying Barbie clothes on and off of dolls countless times, it occurred to me that I could make a Super Epi Pen that Conor could actually see in person.  Then when the computer died, I got a new version of Photoshop Elements on the new computer that I have been trying to figure out, and lo and behold Super Epi Pen was created.

I made an initial prototype with a trainer epi pen, and everyone (children that is - the adults still think I have lost it) in the house thought it was just the best thing ever.  They liked to try and make it fly, and practice how to use it to save the day if someone was suffering from anaphylaxis.  I played with photoshop for a bit, and everyone loved watching Super Epi Pen pose for the camera and fly through the air.  Everyone started making up stories of what Super Epi Pen could do, and all the different ways he would save the day.  He would fight dangerous allergies, he could fly anywhere all over the world to help anyone in need, and he could save lives.  Our new super hero was born.

The best part of it all though was that when Conor saw Super Epi Pen he said he would be OK getting the shot from the epi pen if the shot came from Super Epi Pen.  He said he wanted Super Epi Pen to come with us everywhere we went, and felt safer knowing our super hero was with us.  To me the epi pen is my super hero, because it can help to save Conor if he suffers from anaphalyxis.  Super Epi Pen is also a hero to not only Conor, but to me, because it helps a little boy who has been stuck with too many needles, and lives with too many restrictions to understand things he should never have to understand.  

More Great School Resources

So School is going in full session, and I hope everyone is doing well with their school environments.  I had previously posted about resources for 504 plans here.  In that post I told everyone about the truly awesome Food Allergy Support Message boards, and their amazing resources for dealing with schools and 504  plans.  http://allergy.hyperboards.com/index.php?page=Schools_MAIN

Since writing my previous post, it appears that these totally awesome people over at the Food Allergy Support Message boards have added even more great information to their School resources section.  The main page for resources is here.

http://allergy.hyperboards.com/index.php?action=view_board&board_id=27

Here are some of my recommendations to check out.

Dept. of Education, Office Civil Rights: State-by-state contact info

http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=2739

This is an absolutely wonderful resource.  As the school year goes on, and you discover that your lovely school is not doing quite what they promised, here is how to go about contacting your local Office of Civil Rights to get their input on the situation.

Recent 504 impartial hearing ruling

http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=1672

This is the results of an impartial 504 hearing as to whether a Student  was entitled to protection of Section 504 of the Rehabilitation Act of 1973 in a Connecticut School District.  In the end it was decided that a student who had a know allergy to tree nuts, peanuts, enviormental allergies and asthma was sufficiently impaired that this impairment did rise to the level that substantially impacts his major life abilities.

The above link has the entire decision, and it really is a must read for anyone embarking on a 504. 

USDA FNS Civil Rights Organization (CRO): state by state contact information

http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=3020

The USDA Food and Nutrition Services administers the National School Lunch Program--a federally funded program. The have their own civil rights offices as well and those cool people over at the Food Allergy Support Message Boards have put it all out on the link above. 

Links to School Districts' Food Allergy Policies

http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=4541

This link contains food allergy guidelines and policies already set up in schools throughout the country.  It is a great resource, but made me very mad to discover how few policies (none) our school district has.  This is a great resource to show your own school district though.

2008 ADA Amendment Now Law

http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=6767

This link has the 2008 ADA Amendment act and the changes that have been put in place that are beneficial for those with life threatening food allergies.  The primary changes have to do with the definition of disability, under the ADA, and the entire changes are printed at the link above.

Thanks again to all you really great people over at the Food Allergy Support Boards.  In addition to having a great section on Schools, they have tons of other really useful message boards covering almost everything you can think of related to food allergies.

Super Epi Pen Flies

Life After a Successful Egg Challenge - Answers and Questions

Eggs have re-entered our home and there is rejoicing all around.  We have made brownies, pancakes and scrambled eggs.  I am sorry for those of you still egg less ones, but eggs really do make things easier for the cooking impaired such as myself.  The brownies actually taste ok, and don't double as a stepping stone for the garden.  The pancakes can be removed from the pan without a chisel, and actually resemble a pancake.

However I am still uncertain about this whole egg thing.  Previously Conor had never really reacted to cooked egg.  He ate lots of things with egg cooked in it and I never noticed anything before.(not that I was a little bit slow on noticing these things before).  He seemed to really react to raw egg, or things like meringue powder that I put into icings.  How do I know if he will react to these things now, and what if he does???  And if he gets some eczema, how do I know if it is exacerbated by the eggs???

Now here is my other really stupid thought.  He used to be allergic to eggs, and now he ate one.  How do I know he is still allergic to peanuts.  Sure I remember a few years ago when he ate on and his head blew up to the size of a basketball, but how do I know he still is.  I am thrilled that he has not had a peanut reaction since, and it means we are doing a good job keeping him safe, but the part of me thinks denial is a river in Egypt wonders if I am just being paranoid in my anti-peanut crusade.

Don't worry, I know he is still allergic to peanuts.  We will navigate the waters of our own journey with eggs one egg and one day at a time.  We got some new answers I really like, but why do I still have so many new questions.