I am new to this group. My son is starting middle school

Posted on: Mon, 05/27/2013 - 1:36pm
Sarak's picture
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Joined: 05/27/2013 - 15:57

I am new to this group. My son is starting middle school next yr. He is only 10 and has severe allergy to peanut, all treenuts, eggs and some seeds. The school nurse suggested that i teach him how to self administer epi-pen. My allergist thinks he is young to take on this responsibility. Is the school trying to avoid being the first responders here OR having it with him and learning how to use it is the only way to save him in case of emergency. I would sincerely appreciate sharing your experience on this.
I am also planning to have 504 in place starting this yr. i didnot need it when he was in elementary school as the school was always proactive in every way possible.
My other question is having 504 in place, would that isolate him from any mainstream activities and be socially not acceptable in his school?
He has always sat by himself at the nut- free table in elementary school. Now he is asking to sit with his friends and eat carefully in middle school.
Pl share your thoughts on this as well.

Posted on: Wed, 05/29/2013 - 10:34am
mak2b's picture
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Joined: 09/08/2012 - 07:54

My son also has severe allergies. He knows how to self inject and I keep multiple epi pens in school. One at the nurses office, one in his classroom, one in the cafeteria, and one that travels with him to the special classes outside the classroom (ex gym, art etc).
His 1st year at school he was isolated and by himself at the Peanut Free Table. It broke my heart to see him all alone. By mid 1st grade, after constantly going up to school he finally was able to sit with his class/friends. The way he is protected is they put him at the end of the table and the kids are educated and aware that they are not allowed to sit in the 3 seats next to him or across from him. He is going into 3rd grade and this plan is working out well.
I hope this helps. My son is allergic to peanuts, most tree nuts, all shell fish and peas. Not to mention the animals and all the pollens, grass and trees. Good luck and I hope everything works out for you and your child..

Posted on: Wed, 05/29/2013 - 11:06am
mom1995's picture
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Joined: 11/09/2004 - 09:00

Many responses.....
1) The law on 504 is for inclusion NOT exclusion. Which saddly sounds like what happened in elementary. So when setting up a 504 the 504 cordinator will receive feedback from two or more of his teachers. His testing result and his grades are also reviewed to determin if he requires accommodation in teaching. I'm guessing he does not so the accommodations will be centered around the school providing him with a safe environment WITHOUT excluding him. (Put in your plan that your son can remove himself from ANY unsafe room and report to either the nurse or office area without having to go explain to the adult in the room it is not safe for him. This was very valuable many times for us.)
2) For us it was imperative that our daughter had the knowledge and skill to save her own life. For so many reasons. Middle school usually means a larger campus. There will be times when a nurse can not get to a student as quickly as needed in an anaphylaxis situation. Our daughter was taught by her ped's DR and from then on she has carried one with her at all times. ALL times, even during state testing it sits on her desk even now as a Junior in high school. We also supplied one for the nurse and one for athletics coaches. It has always been our belief to have back up plan and if you have them you won't need them.
Yes this is a VERY serious allergy unlike any that schools seem to comprehend. There will be close calls and times when you think why am sending my child to be taught by people who either don't get or don't want to get it. I sit here now telling you it is all worth it. All the times I had to be less then nice to get them to live up to the 504 and all the times I had to make the crazy arguements to paint the picture. I am now the very proudest mother of a senior next year who this last year took matters in to her hands, met with her principal and got the right results. I know now she will be able to go off to colledge and protect herself like most young adults never have to think about. SO it was worth every single thing. Side note she has declared that she will be attending law school for civil rights to fight for all those kids that have schools that won't do the right thing.
This page has been a GREAT source of knowledge and advice. Never a dumb question and all points of view are always helpful even if their not the one you choose.
Good luck!!!

Posted on: Wed, 05/29/2013 - 1:00pm
LGriffin1's picture
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Joined: 09/06/2012 - 10:45

One thing I did in high school was pack something throwaway to set my food on. I didn't trust the school to do a proper job cleaning. Brown bags tear open to create another surface. Clorox wipe travel packs and wet ones lived in my college backpack. He has to be able to advocate for himself. If it seems unsafe, it might be and take precautions. The reality I learned in high school is to let friends and lunch admins know. He needs to identify himself to these people and get to know them in the lunchroom. Carry the epi, my state did not allow me at the time to self carry without a load of paperwork. Do the paperwork. Have him make sure folks know where the pen is. I was in orchestra so I would eat there sometimes too so I could get extra practice time in. Make sure events, activities, etc have designated food zones. It will help. It also keeps other areas cleaner. There's a FARE teens group, get him involved in something like that. Trust me it will be frustrating, terrifying, but he'll get through it and he'll be prepared to take on high school.

Posted on: Fri, 05/31/2013 - 3:10am
Sarak's picture
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Joined: 05/27/2013 - 15:57

Thanks so much for taking time to share. It always helps to hear first hand info from someone who has dealt with it on a daily basis. I will follow all the suggestions you had in your reply. Again i am grateful for this.
Thanks, Sara.

Posted on: Fri, 05/31/2013 - 3:17am
Sarak's picture
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Joined: 05/27/2013 - 15:57

I feel so assured reading the responses. I am starting to educate my son and will get him trained on self-administration.
I have had 2 good conversations with the school counselor. He suggested that I show up during lunch time for the first wk to see for myself what else could be done to making it safe for him.
I liked that . So that he can work with us and have the 504 meeting and we will be in a better position to list out any special accommodations.
I also spoke to a mom who suggested that if my son’s best friends are in a different lunch time, I can change their lunch time to coincide.
I feel lot better as I get more info and the valuable response from this support group.
Thanks, Sara

Posted on: Fri, 05/31/2013 - 3:20am
Sarak's picture
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Joined: 05/27/2013 - 15:57

Thanks for the suggestions. since my son is class 5 allergy level for peanuts & class 4 for all tree nuts- i have no idea how he will react if someone sits next him and eats a peanut sandwich. I will take your advice and request couple of seats to be vacant so that we maintain a safe distance.
Thanks,Sara.

Posted on: Tue, 06/04/2013 - 4:22am
Christene's picture
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Joined: 06/04/2013 - 11:14

My son is 10 and will be going into the 5th grade in the fall. He has had a 504 since first grade, I too was afraid that he would be ostracized for this but in fact it's been the opposite. All of the teachers and students that he comes in contact with are aware of food allergies, espc peanuts. As parents all we want is to have our children have as normal childhood as possible but the safest one too. He has been carrying his own epi-pen since first grade, along with the nurse and teacher has one, to me it just cuts down on response time if ever needed. So far the school has done a great job. Good luck!

Posted on: Tue, 06/04/2013 - 11:02pm
ddepace65's picture
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Joined: 05/27/2012 - 12:33

My son is now 18 and just finished his freshmen year away at collage. When he entered middle school I came across the same scary choices you are now faced with. My son too asked to sit with his friends. Lunch time really is the one time in the school day that the kids have to freely socialize. I taught my son about peanut safety, how to use the epi-pen and came up with a plan with the school if an emergency were to happen. My son would tell his friends that he couldn't sit with them if they brought peanut butter and so they could all sit together to bring something else. This put him in somewhat control of his allergy. Kids can be mean but just as many or more are caring. Today he is still allergic to peanuts and carries an epi-pen with him always. His old and new friends are aware of his allergy. It is not to young to teach him about his allergy and how to protect himself, and most importantly to communicate with his peers. Best choice I ever made.

Posted on: Wed, 06/05/2013 - 8:01am
Sarak's picture
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Joined: 05/27/2013 - 15:57

Thanks a lot for the response. I feel so much better after i reached out to this support group. So many of my doubts and fears have been cleared now.
I plan on taking him to the FARE walk this summer just to get him educated as well.
Sara.

Posted on: Wed, 06/05/2013 - 8:03am
Sarak's picture
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Joined: 05/27/2013 - 15:57

I very much appreciate sharing your experience. It feels good to have a support group like this.
Sara

Posted on: Wed, 06/05/2013 - 9:34pm
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Joined: 03/13/2013 - 20:19

My 2 year old is allergic to peanuts but I am starting to read these posts carefully for future reference. A friend of mine is a teacher at an elementary school here in Michigan and in their cafeteria they have a nut table where kids go if they bring nuts in their lunch but the rest of the cafeteria is nut-free so it does not isolate the allergic kids. There was an article published by the AAP in the Journal of Pediatrics last December on food bullying...this type of isolation sets up the scenario. You still have to teach the kids about where to sit regardless of which system you use so why not do a table where kids sit if they bring nuts? I am planning to advocate for this later for my daughter.

Posted on: Tue, 09/03/2013 - 2:57pm
Sarak's picture
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Joined: 05/27/2013 - 15:57

I am back to the group with more questions. So far my son is doing good. When we went to back to school night we found out that science class does lots of activities with food. He later told me that one day his science teacher was getting some nuts, beans ready for the next class. When he told that he can't be in the room, she asked him to move over to the far end of the room. I was very agitated to hear that. Even though the nurse's office sent all info about him, why were the nuts allowed in the class.
So i thought that it is time to talk about 504 plan. So i will be meeting with the school counselor about this. Is there a specific format? What do i cover in that? Is there any guidance on nut, egg allergy related 504 plan?
I need help. I want to ask the right questions and make sure he is safe in school.
Thanks
Sara

Posted on: Thu, 09/05/2013 - 2:16am
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Joined: 09/05/2013 - 08:09

Hello, I am new to this group as well and am in exactly the same position as you. My son is also 10 and going into Middle School next year. He has a severe peanut allergy and tree nut allergy that is only slight less severe. We currently have a 504 plan in place at his elementary school and to answer your question: NO, he has never been excluded from anything! He is on the basketball team, has participated in Field Day and goes on field trips with no problem. He has a nut-free classroom and table in the cafeteria and there is a very specific action plan in place in case of a reaction. Every staff member in his school is trained to use an Epi-pen, and he carries two Epi-pens with him at all times. My son's allergy is severe enough that contact with peanuts or even a surface cross-contaminated with peanuts or food that is cross-contaminated is enough to cause an anaphylactic reaction. This level of severeity is extremely rare, and I'm lucky that it has been documented by two doctors on two seperate occassions. Not lucky that it happened, but to have it witnessed and documented by medical professionals goes a long way in conveying the severity to other doctors and the school. My doctor also agrees that my son is too young to self-administer his Epi-pen if a trained adult is present, but also agrees that it's time to start teaching him in case he has a reaction and there is no one around who is trained, such as another student. Legally speaking, he may be allowed to carry an Epi-pen with him at all times, check your state law. We live in Illinois and there is a state law that allows children to carry thier Epi-pen. As far as eating with friends, it would be a good idea to find out who the friends are and talk to their parents. It is possible for your son to eat with his friends, but precautions have to be taken and strictly observed. For instance, absolutely NO food sharing (if he can't read it, he can't eat it), no foods containing allergens to which he is allergic (this one is harder, but it's not too much to ask to skip the PB&J for one day or leave those seeds at home for a snack), and arm your son with WetOnes (I think the yellow-topped containers are the most effective) for him to wipe his area clean and for his friends to use on thier hands. And before you agree to this, review your plans with his allergist to see if s/he has any other suggestions and also with the school. It's hard trying to protect our kids and still allow them to have normal experiences, but the extra effort is worth it. I hope this has helped to answer some of your concerns :)

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