Alright...so you just got home from the allergist. I am sure your doctor told you to stay away from the Internet (and you didn't). That is okay. We are going to give you our top five musts for surviving the first few months of an allergy diagnosis.
1.Cry in the shower. Go ahead. You deserve it. Life just changed drastically, and it may or may not have done so traumatically. Give yourself a chance to get it out.
2. Clean out the cupboards. Anything that contains the allergenic food goes. It will save your sanity and create a safe space for your loved one.
3. Pick up your EpiPen. You will want at least 2 sets. They are expensive...and no one ever tells you about the coupons. Here is the link.
4.Prepare for shopping to take a bit longer. And involve tears. The Snack Safely List Rocks. Shop the outside of your grocery store...you are less likely to run into problematic foods out there.
5.Remember that you are LIVING with food allergies. Don't barricade yourself in. The temptation is there. Bring lots of wet ones wipes, pick areas that don't have lots of food to build your confidence, and get out there! And know we are here for you!
Sunday, April 27, 2014
What Accommodations Should I Be Asking For?
I will start by saying that this is a conversation you should have with your allergist. Only you, your kiddo, and your allergist can establish risks and parameters that you are all comfortable with. That being said, here are some commonly requested accommodations:
-Allergen free classroom (talk with your allergist about whether this needs to be simply free of the allergen or free of food that contains/may contain/is manufactured with)
-Allergen Free Tables (with or without buffer zones)
-Hand washing before and after meal and snack periods
-Medications (lots of options): Self-carry/Self-Administer, Self-carry/Teacher-Administer, Teacher-Carry/Teacher-Administer
-Separate supplies to reduce cross contamination
-Food Free Celebrations
-Epinephrine delegated staff (janitors, bus drivers, EA's, cafeteria aides, recess monitors, etc.)
-Signage indicate "Allergen Free Zones"
Tell us what accommodations you have!
But My School Says They Don't 'DO' 504's?!?!
If I had a dollar for every time I heard some one state "But my school says they don't do 504's for food allergies. They are great at taking care of kiddos so they don't need anything but an IHCP (Individual Health Care Plan)", I would be living somewhere VERY warm right now!
Let's begin by talking about what a 504 is. A "504" is a plan that references Section 504 of the Rehabilitation Act of 1973. Under this act, "qualified handicapped" (yes, the term is a little dated) individuals are entitled to accommodations under the act. In terms of food allergies, for a long time, schools would (successfully) argue that things that mitigated the allergy allowed them to not develop a plan. However, the under the Amendments Act of 2008, those evaluating cannot look at mitigating measures when determining eligibility (for greater detail on this, check question 13 on the OCR's page discussing this.
Now that we understand 504 just a bit better, we can return to the original question about schools that "don't do 504's". All schools have an obligation to identify and evaluate student's with disabilities (this is referred to as Child Find). If your school is saying this in the course of conversation, my best suggestion would be to send a written request (either email or certified mail) requesting a 504 evaluation on the basis of life threatening food allergies. Do not talk about accommodations...only evaluation. If they using this as the grounds for denial, then you can pursue the remedies available to you as outlined in your procedural safeguard manual (sorry...since we are not attorneys, they won't let us say much more than that!).
Just remember...any school willing to accommodate should be willing to write it down.
All of this said, if you walk into a school and get the impression that there is nothing you can do to convince them to keep your kid safe, you need decide if this is the right choice for you. You can file complaints, lawsuits, and bury them in paperwork until the cows come home, but you will never be able to force compassion. At the end of the day, you know your kiddo and what they need...go with your gut!
Let's begin by talking about what a 504 is. A "504" is a plan that references Section 504 of the Rehabilitation Act of 1973. Under this act, "qualified handicapped" (yes, the term is a little dated) individuals are entitled to accommodations under the act. In terms of food allergies, for a long time, schools would (successfully) argue that things that mitigated the allergy allowed them to not develop a plan. However, the under the Amendments Act of 2008, those evaluating cannot look at mitigating measures when determining eligibility (for greater detail on this, check question 13 on the OCR's page discussing this.
Now that we understand 504 just a bit better, we can return to the original question about schools that "don't do 504's". All schools have an obligation to identify and evaluate student's with disabilities (this is referred to as Child Find). If your school is saying this in the course of conversation, my best suggestion would be to send a written request (either email or certified mail) requesting a 504 evaluation on the basis of life threatening food allergies. Do not talk about accommodations...only evaluation. If they using this as the grounds for denial, then you can pursue the remedies available to you as outlined in your procedural safeguard manual (sorry...since we are not attorneys, they won't let us say much more than that!).
Just remember...any school willing to accommodate should be willing to write it down.
All of this said, if you walk into a school and get the impression that there is nothing you can do to convince them to keep your kid safe, you need decide if this is the right choice for you. You can file complaints, lawsuits, and bury them in paperwork until the cows come home, but you will never be able to force compassion. At the end of the day, you know your kiddo and what they need...go with your gut!
Preparing for Kindergarten
For most parents, the first day of Kindergarten is filled with emotion and apprehension. Their baby is growing up. Have they prepared them well enough? Will they make friends? So many concerns.
For those of us who have children with allergies, asthma, and anaphylaxis, the first day of kindergarten is totally different. If we are honest, if they rode the bus, half of us drove behind, terrified. We watched our cell phone/office phone religiously. Our thoughts were not on social adjustment and the like. We were wondering if the teacher would remember and respect the allergen free hand accommodation. If they would enforce the allergen free classroom. If someone would touch our child after having a peanut butter sandwich. If we are honest with ourselves, that first day, and for the rest of their life, we send our child to school each day wondering if they will come back to us.
So, what is the best way to prepare for kindergarten? Here are our tips:
1. Start early...like before kindergarten roundup. Early spring is best. This is not the time to talk about accommodations. This is investigatory time. Talk to the teachers. The cook. The janitor. The EA's. All of the behind the scenes folks, because they will be the ones taking care of your kiddo. And THEN talk to the principal. Ask him/her what they feel their role is when it comes to managing a kiddo with a food allergy.
2. When kindergarten roundup starts (and you have your school picked) send a letter requesting an evaluation for a 504. I PROMISE you won't regret it. Any school willing to accommodate should be willing to write it down. 504's have procedural safeguards, IHCP's do not. You can always choose to end the 504...but it is easier to go that direction than the other. DO NOT DISCUSS ACCOMMODATIONS at this point. Only request an evaluation for your child based on life threatening food allergies.
3. In the weeks headed up to school, you will have your 504 meeting. Your kiddo may either be determined able to self-carry epinephrine or not. If not, you CAN request a teacher carry it. IT SHOULD NEVER REMAIN IN THE NURSES OFFICE! When minutes count, you want the Epi with your kiddo. You will also be talking about what other accommodations may be needed.
4. Start talking to your kid (more) about not sharing food, washing hands, how to recognize and report symptoms to adults, etc.
5. If your kiddo is self-carrying, get a self carrier. If teacher is carrying, get something similar. With our daughter, they carry a lot (and I mean a lot). We got a messenger style bag that carries her EpiPen Jr., Inhaler, Spacer, Wet Ones wipes, an Child CPR mask (worst case scenario), a pulsoximeter, and a thermometer.
6. When the big day arrives, be brave in front of your kiddo. They are likely just as scared as you. We have to do everything in our power to keep life as normal as possible for them. Sometimes that means telling them they will be fine and then crying in the car.
7 .Enjoy the year. There will be mistakes. Deal with them as they come. Some will be minor, some, not so much. Try to pick one thing you can "not complain about" so that you are not the parent that does nothing but complain about the school. Let me first say that I am not saying let them off the hook. Let me give you an example: My daughter's school has been nothing but one battle after another. I swear, sometimes I no more than get one issue resolved before we are on to the next. All allergy/asthma related. I also don't particularly care for their teaching style. Guess what...I shut my mouth about the teaching style. Why? She is making good academic progress, and I AM NOT A TEACHER. I need to not be fighting about EVERYTHING!
Good luck!
For those of us who have children with allergies, asthma, and anaphylaxis, the first day of kindergarten is totally different. If we are honest, if they rode the bus, half of us drove behind, terrified. We watched our cell phone/office phone religiously. Our thoughts were not on social adjustment and the like. We were wondering if the teacher would remember and respect the allergen free hand accommodation. If they would enforce the allergen free classroom. If someone would touch our child after having a peanut butter sandwich. If we are honest with ourselves, that first day, and for the rest of their life, we send our child to school each day wondering if they will come back to us.
So, what is the best way to prepare for kindergarten? Here are our tips:
1. Start early...like before kindergarten roundup. Early spring is best. This is not the time to talk about accommodations. This is investigatory time. Talk to the teachers. The cook. The janitor. The EA's. All of the behind the scenes folks, because they will be the ones taking care of your kiddo. And THEN talk to the principal. Ask him/her what they feel their role is when it comes to managing a kiddo with a food allergy.
2. When kindergarten roundup starts (and you have your school picked) send a letter requesting an evaluation for a 504. I PROMISE you won't regret it. Any school willing to accommodate should be willing to write it down. 504's have procedural safeguards, IHCP's do not. You can always choose to end the 504...but it is easier to go that direction than the other. DO NOT DISCUSS ACCOMMODATIONS at this point. Only request an evaluation for your child based on life threatening food allergies.
3. In the weeks headed up to school, you will have your 504 meeting. Your kiddo may either be determined able to self-carry epinephrine or not. If not, you CAN request a teacher carry it. IT SHOULD NEVER REMAIN IN THE NURSES OFFICE! When minutes count, you want the Epi with your kiddo. You will also be talking about what other accommodations may be needed.
4. Start talking to your kid (more) about not sharing food, washing hands, how to recognize and report symptoms to adults, etc.
5. If your kiddo is self-carrying, get a self carrier. If teacher is carrying, get something similar. With our daughter, they carry a lot (and I mean a lot). We got a messenger style bag that carries her EpiPen Jr., Inhaler, Spacer, Wet Ones wipes, an Child CPR mask (worst case scenario), a pulsoximeter, and a thermometer.
6. When the big day arrives, be brave in front of your kiddo. They are likely just as scared as you. We have to do everything in our power to keep life as normal as possible for them. Sometimes that means telling them they will be fine and then crying in the car.
7 .Enjoy the year. There will be mistakes. Deal with them as they come. Some will be minor, some, not so much. Try to pick one thing you can "not complain about" so that you are not the parent that does nothing but complain about the school. Let me first say that I am not saying let them off the hook. Let me give you an example: My daughter's school has been nothing but one battle after another. I swear, sometimes I no more than get one issue resolved before we are on to the next. All allergy/asthma related. I also don't particularly care for their teaching style. Guess what...I shut my mouth about the teaching style. Why? She is making good academic progress, and I AM NOT A TEACHER. I need to not be fighting about EVERYTHING!
Good luck!
Saturday, April 26, 2014
What Causes Food Allergies?
We wanted to take a second to share some of the good info from UNC about Facts about Food Allergies!
- There is some thought that our environment might be too clean, causing our body to respond to "normal/safe" substances.
- There are no good studies showing mom's diet during pregnancy and it's impact on food allergies.
- There is no "right" way to introduce allergenic foods. The community remains divided about this.
To read more about the great work being done to uncover possible causes of food allergies, head on over to UNC's page!
Surviving the summer months with Allergies, Asthma, and Anaphylaxis!
When it comes to summer, as parents, we already have a lengthy checklist. Did we remember the sunblock? Toys? If you have kids with motion sickness (like I do) extra blankets/buckets/towels/wipes/changes of clothes? Diapers and wipes (for those with babies)? Special toys and blankets? Tablets? IPods/IPads/Tablets? By the time the car is packed, it can look like you are moving out (especially if you are a family of six, like us.
For those of us with children with food allergies/asthma/anaphylaxis, preparing for the summer weather takes some extra planning. Do we have enough EpiPen's/EpiPen Jr.'s/Auvi-Q's? Inhalers? Benadryl/other antihistamine? Any other meds/equipment? If you are like me, it takes longer to pack for the coast than drive to it!
So, with all of that being said, what can we do to ensure that we keep our supplies stable in hot weather? First and foremost, NEVER leave an EpiPen in a car. There are two reasons for this. First...it does you no good there. Second, Mylan recommends keeping your EpiPen at 77 degrees (or between 59-86 degrees). Auvi-Q has the same recommendations.
In terms of asthma medications, while all companies advise specific temperature parameters, a study found that exceeding these parameters had no impact on the efficacy of the drug.
Apart from medicine, the other thing we often have to consider is food. Ice cream and similar treats are a frequent go to during the hot days of summer, but pose a huge risk for kids with food allergies. We recommend sticking to the Snack Safely list to refer to safe treats during the summer. And of course, read labels for sun block and drink up! Kiddos with asthma (who are breathing more rapidly) are going to be at higher risk for dehydration!
For those of us with children with food allergies/asthma/anaphylaxis, preparing for the summer weather takes some extra planning. Do we have enough EpiPen's/EpiPen Jr.'s/Auvi-Q's? Inhalers? Benadryl/other antihistamine? Any other meds/equipment? If you are like me, it takes longer to pack for the coast than drive to it!
So, with all of that being said, what can we do to ensure that we keep our supplies stable in hot weather? First and foremost, NEVER leave an EpiPen in a car. There are two reasons for this. First...it does you no good there. Second, Mylan recommends keeping your EpiPen at 77 degrees (or between 59-86 degrees). Auvi-Q has the same recommendations.
In terms of asthma medications, while all companies advise specific temperature parameters, a study found that exceeding these parameters had no impact on the efficacy of the drug.
Apart from medicine, the other thing we often have to consider is food. Ice cream and similar treats are a frequent go to during the hot days of summer, but pose a huge risk for kids with food allergies. We recommend sticking to the Snack Safely list to refer to safe treats during the summer. And of course, read labels for sun block and drink up! Kiddos with asthma (who are breathing more rapidly) are going to be at higher risk for dehydration!
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