Merry Christmas & Happy New Year

From our family to yours, have a safe holiday season.  Keep your epi-pens close and read labels. If in doubt don't eat it no matter how tempting.

Merry Christmas & Happy New Years from the Taylor's

504 Plan in your school for your allergic child

Recently Laurie came across a great article with tips on getting a 504 plan put together for your child at school.  I am reposting in hopes it will help others.

How to Create a 504 Plan for a Child With Food Allergies

By cantisa, eHow Member

Difficulty: Challenging

Instructions

1. Have all necessary medical information available to put in his or her file at school. This shows all relevant school officials that your child has a medical condition (life-threatening food allergy) that is classified as a disability and will require protections guaranteed under the ADA.
2. Contact all relevant school officials, in the spring before school starts if possible, to schedule a 504 meeting. School officials can include, but are not limited to: the principle, the school/district nurse, the primary classroom teacher, teacher's aide (if applicable), child's allergist, student services representative, food service director/manager, and, if age appropriate, the student with the food allergy.
3. In the meeting, explain what a food allergy is, its severity (contact or ingestion can result in death, brain damage, or coma), and why it is different from a food intolerance. Review anaphylaxis and the risk of cross-contamination.
4. Let them know which particular food allergies your child has and provide the medical documentation, including doctor's instructions regarding your child's food allergies and how to use an Epi-pen.
5. Provide and request any other documents that will be included in your child's 504 or IHP, including, but not limited to:
   A. your emergency contact information,
   B. emergency procedures should a reaction occur,
   C. lunch procedures and storage of your child's lunchbox (if applicable),
   D. letters to other parents informing them of snacks that are acceptable in the classroom and those that are not (revealing your child's identity and medical condition by school staff to anyone other than emergency personnel and those expressed in the 504 Plan is a violation of HIPAA laws),
   E. allergen-free classroom (extends to necessities of classroom pets),
   F. allergen-free lesson plan guarantee in all classes,
   G. hand-washing procedures for students and staff who have contact with the child with the food allergy,
   H. state and school/district policy regarding emergency medication at school (Epi-pen, Benadryl, etc.) and always check expiration dates,
   I. allergen-free assurance for bus rides (if applicable) and field trips,
   J. and anything else you deem important and necessary.
6. Make a notebook with all the information decided on and approved by yourself and give to the principle, nurse, teacher, and any school staff that will have your child as a student in any area or classroom during the school day and during any extracurricular activities. Be sure to collect these at the end of the school year as well as his or her medications.
7. Send out thank-you cards to all those involved in monitoring your child over the school year, unless, of course, there were ongoing problems or allergic reactions due to negligence. If the latter is the case, consider consulting with an attorney.

Tips & Warnings

• You are your child's advocate. Do not be afraid or think that you are being overly protective when asking for and preparing a 504 Plan and expecting school officials to follow through with its instructions. This is your child's life and quality of life. Nothing should be more important.
• For more information on the 504 Plan, ADA, and other food allergy topics, please visit the Food Allergy & Anaphylaxis Network (FAAN) at their website: http://www.foodallergy.org/.

We found this article at the following website:

Read more: How to Create a 504 Plan for a Child With Food Allergies | eHow.com http://www.ehow.com/how_5284046_create-plan-child-food-allergies.html#ixzz17rvOBcjw


Hope this helps, have a great weekend.


The Taylor's

We are making progress at the national level!

Check out the video from Yesterday and Senator Chris Dodd on the Food Allergy Bill.

See the video here

We are making progress.

Have a great day.

The Taylor's

8 years ago this week!

8 years ago this week our lives changed forever. Laurie and I welcomes our first baby girl into the world. Now with an infant in the house I figured my life would need to adjust... but boy did that become the understatement of my life. It did not take long, by Jan. we knew Lynda had food allergies. Her eczema was flaring well beyond baby rash and she was miserable. It has been an interesting journey- a bit part of why this blog is here in hopes to help others to learn from the path we have taken. Lynda has grown into a beautiful girl and has a normal life (as normal as she can have). She has been able to expand her diet to several new foods since our return from National Jewish and enjoys school, music, her sister and friends. She is no longer locked in the house out of fear the outside world will hurt her and she can live a normal life. She has made our family stronger and hopefully we are able to help those with similar issues with advise, knowledge and support. We cherish each day as we know it only takes one bite, we are diligent in keeping her safe and have good partners helping us with those at daycare, school, church, our family and friends.

Happy Birthday Lynda.. We love you! We are Proud of you!

Mom & Dad

Halloween Safety

Hello all food allergy supporters- I can not believe it is almost Halloween and I have not posted my annual safety post.

• Make sure your child wears gloves when trick or treating so they can enjoy the event and not have issues with touching cross contaminated candy.
• Trade out the candy for something non food related- we generally do books to help our daughter read better.
• Donate the candy to a local children's shelter, brighten someones day.
• Trick or Treat for a cure- FAAN has a great program that allows you to raise money for research- take advantage of it as it is a great way to educate your friends and neighbors. 
• Dress to be seen & watch for cars
• Be safe! 

Happy Halloween!

 It's always a good idea to let your child participate as long as they can be safe.   Happy Halloween from the Taylor's.

Enjoy the night! Boooo!

Schools and Food Allergies

It is great to see parents and schools working together to make food allergies part of the discussion with classmates. As we are fond of saying Knowledge if Power and this helps to minimize bullying and helps classmates awareness to make sure they keep kids safe. We have a fantastic school district in this regard at Center Point Urbana School District. (Homecoming tonight by the way).

The Lollipop Game- Lynda loves these suckers!

Here is the Article posted by the Food Allergy Initiative. CLICK HERE

Just remember parents working with your school is a PARTNERSHIP and you will have to compromise and work on creative solutions. I works, we have lived it.

Have a safe weekend!

The Taylor's

This Article highlights the importance of communication with your School when dealing with food allergies

Yet another recent article about food allergies and schools.  This time two children are being held out of school due to the reversal of a policy on no nuts at school.  That being said- Lynda goes to CPU and they do not have a no nut policy, but do take proactive steps to ensure her safety.  It is also important where school policy or action falls short parents need to be proactive with a workaround for the safety of their children.

You can read the article HERE.

Have a great weekend.

The Taylor's

It is sad that this is becoming so prevelant we have seen 2 different articles in a week

Two different articles in one week and both in the national media dealing with bullying and food allergies.  If your child has food allergies- talk with them about bullying and make sure it is not happening to them.  The latest article is found at livescience.com - I have a copy of the article HERE for you to read.

Bullying is not ok for any reason- but this is life threatending to our kids- Knowledge is power- keep this information in front of your schools, daycare providers and family so everyone takes it seriously.  Losing one child to ignorance is too many.

The Taylor's

Bullying and Food Allergies

Thanks to all our friends that send us these articles. I can tell you kids with food allergies that show reactions on their skin etc are already self conscious about their situation. Lynda sure is and we and the school work very hard to make sure she is safe and feels good about who she is. It breaks my heart to see articles like this and they happen all the time. I get questions about how we deal with this all the time.

The Article is on CNN.com or you can read it HERE.

Kids can be mean and it cuts deeper when kids are different, I don't care if they have food allergies, down syndrome, speech impediment we need to make sure our kids are safe from bullying.

Knowledge is Power and understanding, kindness and Love are needed.

The Taylor's

Kids Living with Food Allergies

This video pretty much says it all- Thanks to my friends at Team CDO and the Food Allergy Initiative.

Eczema Flare

Well since school has started a little over one month ago we have been battling an eczema flare. This weekend we bathed Lynda three times a day and she was wet wrapped the whole time. Benadryl every 4 hours and we put her back on Zyrtec.  This disease is very frustrating.

An Interesting Article from CNN regarding the rise of Food Allergies

I recently saw an article on CNN.com discussing food allergies and their rise. 

"One theory is that the Western diet has made people more susceptible to developing allergies and other illnesses."

It is good to see that Food Allergies are getting some national exposure, but this also shows they are no closer to figuring out why this is happening and working on a way to prevent or cure it.

You can read the full article HERE.

Nothing is more frightening than a parent seeing their child in a reaction.  Each time you do you risk their life, you can't predict the outcome.  Help support those who have this affliction with your time, talents, resources, money or just tolerance. 


Keep your kids safe as we start the new school year!

Have a great weekend,

The Taylor's

Picture from CNN

Are you ready for the new school year?

The start of a new school year is just around the corner.  Have you completed your pre-school year education of your educators?

Have you?

• Met your child's new teacher?
• Educated them on your child's allergies?
• Have you reviewed the FAAN's site for new materials to use in the classroom and to educate classmates?
• Met with the nursing staff, reviewed emergency plans and what to do if your child has a reaction at school?
• Met with the nutritional staff regarding your child's allergies and conducted cross contamination training?
• Identified any safety concerns as it relates to your child and proposed a solution?
• Worked with the bussing department and certified your driver on use of an Epi-Pen?
• Updated medical information including emergency contact, insurance and preferred medical facilities etc. 
• Update your 504 plan if you have one
• Meet with your principal to discuss any concerns and make sure they are on board with the plans in place. 

If you have not done these things, the sooner the better.  The closer you get to the start of school the more hectic things are going to be and more likely you will not have your educators full attention. 

A sad note to report....Keep you inhaler close at all times

We are sad to report the nephew of my wife's boss who suffers from asthma had a very bad attack last week. It came on so quickly they were not able to get his inhaler administered prior to him losing consciousness. When the young man left the house in an ambulance he had no pulse and was without oxygen for 30-40 minutes. He suffered cardiac arrest and lung collapse. After being airlifted to the hospital he was in a coma and on life support until today when he passed. Please keep this family in your prayers. Asthma is an affliction we should never take for granted. It is especially hard when we lose a child.

Rest in peace and be with god Patrick.

The Taylor's

Dissapointing News regarding Airline Travel & Peanuts

This is the headline I did not want to see since hearing about the proposed ban on peanuts on airlines:

DOT backs off on proposed peanut ban on planes

Yep the hope of my daughter Lynda being able to fly somewhere fun like Disneyland or Florida vanished in an instant. What the Government officials and the Georgia Peanut Producers do not realize is that children and adults with severe food allergies to peanuts have limited time to get to medical attention. EpiPens have a life extension of approximately 10 minutes each- I have done a significant amount of travel in my career and I can tell you that any given moment in time (even in an emergency situation) 9 times out of ten there is no way an airplane can get down on the ground and medical personnel attending a child in 20 minutes unless they are already sitting on the runway (which is not where they serve the peanuts). There are plenty of snack foods that could be available for service on planes or areas voluntarily designated as peanut free zones. In my eyes the airlines are limited their income- the amount of individuals with severe food allergies is growing at an alarming rate- eventually will they have a significant drop in business if this continues.

Disappointing at best- We have traveled by car due to this issue- I recall 3 year ago going to National Jewish in Denver for Lynda's treatment and we spent 2 days in the car each way due to the fact we could not guarantee her safety on the plane. Any neither could the airlines when we spoke with the.

I have the full article posted HERE for you review. Keep writing your airlines, congressman etc. and eventually we will get some change and common sense here.

Knowledge is Power!

Have a great day.

The Taylor's

The Financial Toll on Families with Food Allergies

There is an article published on the NY Times website on May 14th of this year talking about the struggles of families that have true food allergies. If you want to read the full article go HERE.

I can tell you from the Taylor standpoint the amount of money we spend in co-pays, deductibles and specialty foods far outweighs most peoples budgets. Yes some people dealing with cancer and other lifelong illnesses are in the same boat we are. Although I would estimate we spend more per month on Lynda's specialty food required for her than the other three folks in the household (Scary it was still true when Matt lived here too).

“The loss of income and the additional costs associated with food allergies can have a significant financial impact,” Dr. Perry said the article states.

The other issue is that families with serious food allergies tend never to get ahead. It only takes one bite or someone who did not wash their hands after exposure to peanuts or milk and we have a several hundred or thousand dollar medical bill. It is hard for many people to comprehend. And if either of us is out of work-that puts a larger strain on the family finances.

"Take a quick look at any health food store and you will immediately notice the high prices. Factor in the dozens of special products people with food allergies need, and you have a huge grocery bill. " the article continues- many of these food items need to be produced in facilities that also do not produce items with tree nuts, peanuts or milk.

Most of the public does not realize how much their food is cross contaminated. The same equipment that makes your M&M's also makes the Mars Bar with peanuts.

Moral of the story- if you have a child with food allergies- watch every dollar even in the good times, if you don't... pray for those who do.

Have a great week.

The Taylor's

Huge Increase in MRSA with hospitalized Children!

Recently in an AP story talked about MRSA and the huge increase in cases involving hospitalized children.
"The number of children hospitalized with dangerous drug-resistant staph infections surged 10-fold in recent years, a study found." the story read. This is especially concerning for us as Lynda easily contracts MRSA as it is with her skin reactions due to food allergies. Once MRSA gets into the blood it is hard to beat and for children that are allergic to most antibiotics this presents in most cases more hospital time.

"Almost 30,000 children were hospitalized with MRSA infections at the hospitals studied during the 10-year period. Most had skin or muscle infections, and 374 youngsters with MRSA died." the article continued.

This should be concerning to any parent as MRSA can turn quickly and can cause death. Keeping your childrens hands clean, cleaning and disinfecting their cuts is important to keep this threat down. For those children who have skin issues due to eczema or open sores it may cause you to resort to adding bleach to baths. By adding a table spoon or two to a bath tub full of water you can greatly minimize the risk of MRSA.

If you would like to see the full article you can access it HERE.

Have a safe weekend.

The Taylor's

Food Allergies: What's the Reality?

Food Allergies in the News- Story today on GMA

As I ready for work this morning I see that GMA is reporting on food allergies. See the Video Posted above. Once again the media diepcts this as something most people don't really have. They do provide some helpful and useful info in this clip- but to the casual watcher all they here is " food allergies are real?. This as you can image concerns me about way this is reported and sensationlizing of the story to get viewers. <>

Parents and Food Allergic adults already have a tough enough time with people thinking they are over reacting or it is not as bad as they make it out to be. Then to have an story like this it makes it worse. Due to what is available for testing- the limited resources in the medical community and the lack of funding and research on a national level this is not going to get better any time soon. If someone is intolerant vs. allergic I would rather them assume they are allergic then for their family to find out the hard way.

Food for thought- I wish that everyone keep safe when it comes to food allergies and the danger they pose to your loved ones. GMA's expert did remind everyone to check the expiration dates on their Epi Pens- what a great reminder- do me a favor and check yours TODAY!

God Bless

the Taylor's

Stormy Weather.....

Well we had a few days now of cold rainy spring season- that has prompted a nice asthma attack and we ended up in the hospital ER this afternoon. Then off to the Pharmacy for another round of steroids to get her through this bout of asthma distress.

Opening Night at the Kernels

Another HUGE Thank you to the Cedar Rapids Kernels for another wonderful Allergy Free Night at the Ball Park. It was a cold spring game and the good guys ended up not winning, but fun has had by all- there will be another Allergy Free Night in June- more to come.

Lynda has out grown her allergies to dogs!

I has been seven long years since we first found out that Lynda was allergic to dogs. Our neighbors got two new puppies several weeks ago and Lynda has been playing with them everyday. Not one sign of an allergic reaction. The puppies even have licked her, nothing.

Consulted with her doctor if we could get a puppy, and she said yes with two conditions. 1. that it be an outside dog. (totally I don't want a dog in my house). 2. that it must be a lab because that is the same breed as the puppies.

We will have to see what the future holds for the Taylor family and getting a dog.

Springtime brings Asthma

The spring rains are coming- damp weather and temperatures that go up and down. With this weather asthma attacks can come at any time. This is a great time to check your inhaler and make sure you have your stock of medicines for your nebulizers.

With spring also comes increased pollen, molds and dust as those spring winds start to kick up. Do you part to keep an eye on your symptoms.

Enjoy the warmer weather and keep yourselves safe!

The Taylor's

Interesting Article- check it out

Time magazine has an interesting article about poisons and allergens in household dust. The article can be seen HERE.

This article brings to the forefront how important it is when you have an allergic child to have a whole house filter and to sweep or vacuum on a regular basis. This time of year especially with the cold weather in the upper midwest we have to be a little more diligent.

Hope you all are keeping safe- check out the FAAN site as they have had a lot of changes in personnel. It should be interesting to see the direction of the organization.

Keep safe-
The Taylor's

Food Allergies and Vaccinations- Be careful

Hello All,

There seems to be a conversation that has been coming up more frequently in the food allergy world for kids (and adults) that due to a recent trip to the hospital for Lynda came back up to the surface. Many of the vaccinations such as the H1N1 vaccine are made from Eggs, thus making it unavailable for Lynda and many other children with food allergies. Over the years when working with her doctors and pharmacists we have gotten push back regarding the ingredients within certain drugs due to the companies not wanting to disclose what is in their product for "trade secret" reasons. I can understand protecting your brand and product, but when so many of these children have to pass on potential solutions to medical issues because we can not take the chance it makes it difficult to treat against medical issues to keep our children safe. In Lynda's case she already has so few options and we get concerned about long term issues like those 2-3 drugs her body will become resistant to and then we are at a potentially life threatening situation.

Here is a link to a website that has 3 articles regarding this issue:

CLICK HERE

Be safe and have a great valentines day. (Men do not forget tomorrow is Valentines Day!

The Taylor's

January Rain!

Well what a winter we have had in Iowa so far! First a ton of snow, then ice and now over 1/2 inches of rain in the last 12 hours- so what does this have to do with anything- When the air is cold and damp it triggers asthma attacks- Several times in the last week Lynda has come to either Laurie or I and indicated she needs a breathing treatment. Well the little bugger has been right each time. Her peak flows have been low- so watch your asthma kids closely and listen to them during this time of the year. It seems that the moisture in the air and the cold is a bad combination for our little one.

Lynda and her sister Callie had a birthday parthy for one of Callie's classmates. How excited was Lynda when there was some Lynda safe food at the party. And it was a pool party to boot so a little extra hydration time for her skin as well. They both had a blast from the report I got.

Have a great weekend.

The Taylor's

We got to Come Home

Well after a few days in the hospital Lynda got to come home and and to have a PIC line put in to facilitate a portable IV pump. She has been doing pretty good by not using the off hand and watching her tubing to make sure does not pull the pic line out. Dr appt tomorrow to see if we can be done with the anti-botics. Thurs should have the pic line taken out. She has been doing pretty good and she has had to miss two weeks of school.

Looking forward to getting life back to normal.

Have a great week.
The Taylor's

All good things must come to an end......

Well today after a 2 1/2 year hiatus we are back in the hospital. Lynda got an infection that she could not beat so we are back in the hospital for another 10 day stint. She is doing very well, last night was really rough with all the attempts to get her IV in and then once it was in it did not stay- so we had to do it again. She has been a real trooper.

On a real positive note- we are the only folks on the entire peds floor. I see that as a huge blessing that there are not any other kids here. I like empty hospitals!

Callie is not happy since with the H1N1 regulations in the hospitals these days she is not allowed to come up and visit. She told me this morning that her sissy needs here and she needs to go up. What a sweetheart. A special thanks to all our family, church family and friends and they have been a great support. We appreciate all your prayers and assistance. Hoping we can get this knocked out and it is a bump in the road....

Have a great weekend.
God Bless
The Taylor's

Welcome to 2010!

Hello all,

I hope you had a very safe New Years Eve. We spent the night with family to make sure we did not have a situation with Lynda. Parties are always an issue with lots of unsafe food, people that do not understand cross contamination etc. We have been blessed this year with Lynda not having any hospital visits in 2009 and we are hoping that we continue this trend into the new year. We were able to skirt the flu for the most part- both the girls had it this fall, but not as badly as we were concerned they would. Now that the temperature has dropped to the below zero on a more regular basis and the wind has kicked up her asthma, we have had a few more breathing treatments.

We are so excited that our local minor league base ball team is expanding their Allergy Free nights to 2 this season- so we will be attending both in support of the Cedar Rapids Kernels! Thanks for all your help Jessica and support the safety of kids with food allergies! We will pass along the dates as soon as they are firmed up.

We are also continuing to lobby for funding so our schools can keep nurses in each school. With the budget cuts across the nation many school districts are going to part time medical professionals and many are are services to they do not have the same person at the school all the time. It is so important that there is consistency when dealing with children with food allergies, if they don't know what the norm is for the child they don't understand when there is a problem. And this is just one medical issue that children could face- we have to consider others such as diabetes etc. Write your legislators to change the laws or provide funding so these positions do not get cut. We are also still pushing for better and more accurate labeling of food, training for school bus drivers etc.

I hope you all have a great 2010 and a very safe 2010. God Bless

The Taylor's