Very scared Mommy, please read

Hi everyone,

I'm new to the site. My son is 5yrs old and came very close to death before his 1st birthday because of allergies. He is severely allergic to peanuts/tree nuts and also has allergies to wheat, soy, eggs, maple syrup and so much more. He's supposed to be starting school in a couple of months and I'm deathly afraid to let him out of my sight and in the care of someone other than me. Everyone around us jokes and calls him bubble boy but this is a very serious matter. Where do I start with the school situation? How do I make them aware of the severity of it? I want to make sure I cover all bases when it comes to putting him in school. We live in California, what do I need to make sure to do or file with the school or district? Please help ever if I left something out that I should be thinking about I would appreciate it. This was a fear of mine since he was a baby, I don't want to put him in school but I know I have to.

Thanks everyone.

By alexakay on Sun, 08-04-13, 17:39

Hi, you've gotten a lot of great advice here from the other posters! I totally relate to your fears. My daughter has a severe PA and is allergic to TN and soy. She will be starting 1st grade in a few weeks. We meet with the district and school nurses before school starts so we know everything is in place before the chaos of the new year. I give them her medications - epipens, benadryl, and her asthma inhalers - in a clear bag with her picture on it. When I did this last year, the nurse thought it was such a good idea that she did it for all the students who need meds at school. I give them two sets, one for her classroom and one for the nurse's office.

We also had a meeting with the principal, learning specialist, school psychologist, district and school nurses to write out a 504 plan for her. I had both her pediatrician and allergist write letters explaining her allergies and asthma, especially that the PA is life threatening. This helped as supporting documentation for her plan. I also brought along the results of her allergy tests.

I worked with the staff to make sure she has a peanut free table for snack and lunch, which is brought out for her and a few friends, and then put away when they're done. There's a sign where it's stored that indicates its a peanut free table and not to be used for anything else.

The nurse sends a letter to the parents at the beginning of the school year to inform them that there's a severe PA in the class. The teacher communicates to the parents that any treats brought in must be peanut free and I encourage parents to come to me with questions. It helps to be room parent so that you're in contact with parents and easily visible, if this is a possibility for you. Lets see... Oh I also provide the teacher with a bag of safe treats for her for those times when I'm not on campus and she's not sure if a great is safe.

My advice is to stay in good contact with the staff, from the teacher to the principal. I keep in contact with the custodian responsible for moving her peanut free table. Basically I try to provide them with everything they might possibly need to make their jobs easier! Best of luck to you!!

Edited to add: Last year I also had to add something to her plan, which was to make sure that any sub who worked in her classroom had to read the teachers notes in my daughter. We had one sub who tossed the notes aside and said that she didn't have time to read about the "troublemakers", assuming that's all the teacher's detailed notes contained. When in actuality, right there in bold print, underlined in red was my daughter's name and her life threatening PA. I only knew this because another mom was working in the class and told me about it. She didn't read the protocol for hand washing or anything. AND, she had a PB sandwich for lunch that she was going to eat in the classroom! So that would be yet another area to consider!

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By kel22dd on Mon, 06-24-13, 08:15

Hi, This is my first time ever posting something, but your story is exactly my story. My son came extremely close to dying at age 2. He is allergic to peanuts, tree nuts, soy and seeds. I have had a very difficult time accepting that he is going to have to go to school. He is 5 yrs but will be 6 yrs first week in July. I held him back. I wasn't ready to send him to kinder at age 5 and I felt he was just to young emotionally. I have met with the principal a couple of times over the past year in preparation for this upcoming year. The first meeting I had, I gave the principal a big binder all about allergies, school policies and forms, 504 plans, allergy signs and symptoms and teacher check lists. It was full of information. I was going to change as much as I could to peanut/tree nut free. My goal at this point was to try NOT to have any food items brought in class for b-day parties and celebrations. (in kinder you will notice every holiday and every child's birthday is celebrated with food). I also wanted all kids to wash their hands good after they ate and also I would be interested in a peanut free table. The principal was open to everything but wanted to meet closer to the new school year. I also have an 8 year old daughter who does not have food allergies who attends the school. I was very excited because at the beginning of her school year we received a letter from my daughters class asking parents to please not bring any food items to school for any celebrations because there are some children who have serious food allergies. They asked for non food items. This is exactly what I was hoping for in the coming year with my son, so I was very excited. Well as the year went on cupcakes and cookies were sent for birthdays, however the teachers and room parents were absolutely wonderful. They would not give the children the food until parent pick up and they had allergy free alternatives available. As nice as the teachers/room parent was, it didn't keep the food out of the classroom. But I realized that a few of the things that I was asking the principal for were putting other parents in control and giving me a false sense of security. Sure I can ask for peanut/tree nut free class and non-food celebrations (which obviously doesn't work) but then I would have to assume that all parents would completely read ALL labels for allergens and there would never be cross contamination. I am sure some parents would try, but to put my son's life in the trust that all parents would do this, is just not realistic. So when I recently met with the principal I decided that it is up to me to protect my son by teaching him how to live in a world with food allergies. Just as some of the parents have written in about teaching their children and their friends about their allergies. So of course I am still asking for the teacher to send home a note to parents just asking if they could please not send peanut/tree nut food in the children's lunches/snacks.(just as extra safety). But my goal is to teach my son never to eat any food from anyone even if they say its is peanut free. I am going to have a container of safe food/treats that the teacher can give my son for any special occasion. I also plan to bring in safe food and safe treats such as a safe cupcake for my son if there is going to be a party. Whenever I am available I am going to be at school during snack time and lunch time so I can teach him what to do during different situations. I do not think I want a peanut free table as of now. He really wants to sit with other kids, so I will have him sit on the end of the table and whoever sits next to him will not have peanuts. I also asked for the principal and the teacher to put a picture of my son on their desks with listed allergies and treatments, that way if a substitute or an aid is in the class my son is top priority. There will be epi-pens in the nurses office, the principals office, the cafeteria, the classroom, his sister's classroom and also on him. The principal and teachers and all of the parents are wonderful and all look out for each others children and do know which child is who and who does have allergies. I will be vocal about that. I also have in the back of my mind to request a personal aid through the school with 504 plan to be by my son if I feel that everything else wasn't enough, but I really feel good and prepared for the first time since he had be diagnosed with these life threatening allergies. I have had such a hard time, anxiety and so much more about sending him to school and honestly for the first time ever, since I have decided to take the control and teach him and not rely on everyone else I really do feel so much better. I know this is a very long story, it is just so important to feel comfortable and safe when you are sending your allergy child off to school and your story was my story and I just had to write what I have gone through and am going through. Good luck and my thoughts and prayers are with you.

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By Food cop on Wed, 06-12-13, 21:07

Hi,
I have read this site for awhile, your post is the first I wanted to write on. I know your fear, I felt the same way 13 yrs. ago when my son with peanut, almond, egg & wheat allergies started kindergarten. I was so scared that I said I was going to sit in my car in the Target parking lot across the street from the school for the next 13 years. The hardest thing I ever did was drive away that first day. I think I cried everyday for the first few months. I'm happy to say he graduated high school last week having no allergic reactions ever except, once at a church dinner with me. First you MUST talk to the school and you MUST continually talk every year esp. to all his teachers. My son's school never had a peanut allergic child before so I basically had to teach & train the teachers and staff (take a Trainer Epi-pen and an orange to practice on). I took books to read to his classmates, stickers & info. to hand out so the children would take them home to their parents. His teachers helped me talk to the kids about how everyone was different but everyone wants to be included. I got permission from the school to send a letter home to classmates parents informing them of the severity of his peanut allergy and asked them to call me at any time if they had questions or concerns (this helped him be included to play dates and parties). I signed up to be a room parent in grade school (he didn't want me there in MS or HS). Every summer during teacher planning, I made sure I was there to give my "talk". The school also, took precautions creating an allergy table, washing hands etc. It sounds like I went overboard but I tried very hard to present myself as a helper to the school not as an annoying, over-barring parent. It's not been easy but been well worth it to keep him safe at school. I want to add, I was a mess until I realized he needed to go to school, he needed to learn how to keep himself safe & he needed to be "like the other kids". I had to trust my faith that God would be with him. Now that he will be going off to college in the fall, it's tough, I feel the fear starting again but, I know my son is informed and cautious. As for me, I continually pray for his safety and for me to have peace. Plus, I will be going with him to talk with the cafeteria staff at college.

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By ddepace65 on Wed, 06-12-13, 19:57

Speak to the school, teachers and I sent a letter to the parents in the class. Just to make them aware. I stayed involved in everything and volunteered to supply all party snacks and bake everything. Because not everyone understands allergies I felt safe doing it that way. As my son got older I kept him involves in everything. I was blessed and he out grew wheat, dairy, soy, and tree nuts. He is 18 now and a strong healthy young man. He just finished his first year away in college and all the memories of kindergarten came back. The best thing I ever did was to teach him how to be responsible with his allergy. Good luck with everything.

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By bethnbutler@bellsouth.net on Wed, 06-12-13, 19:27

I understand your fears. We have been dealing with a peanut/tree nut /fish allergy and a pre-school/ daycare for 2.5 years. My daughter is 5 and was diagnosed at 2 1/2. I want nothing more than to just quit working some days and home school her and have her live with me forever and ever!I know this is not possible so I have to just trust that the more I inform them , the better they can help my daughter. They have been really good and we have never had a reaction at the daycare. My daughter starts public school next year and I'm terrified too. I've already talked to the nurse and she will have an epipen in the classroom and in the office. I plan on meeting with her Dr next week to go over his recommendations for school. I know I'll be sending in lunch and snacks EVERYDAY! I know pb&j is a childhood staple, but good grief it haunts me now! It would be easier of schools would just ban all nuts. I pray she gets an allergy educated and compassionate teacher and not an eye roller. Not sure how I'm going to handle it either.

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By aceron30 on Wed, 06-12-13, 19:15

My daughter was a kindergartner last year and will be in 1st grade this year. She also has a peanut/tree nut allergy. I was a nervous wreck when she started school because I didn't think they could possible watch her at all times. Well, she never once had to use Benedryl or her epipen. The teachers and staff were so great! At lunchtime, they had a special table for her and would let her friends sit with her after they checked their lunch to make sure it didn't contain peanuts or tree nuts. They also made the class wash their hands very frequently. If they went on a field trip and had to bring their lunch, the teachers went through all the kids lunches and if the lunches were safe they could sit by my daughter. If they weren't safe, the kids had to sit at another table and then if they wanted to come over by my daughter they had to go wash their hands. As a parent, I worried about her every day, but it wasn't about her allergies. My next worry is that her 1st grade teacher won;t be as good as her kindergarten teacher. :) My advice is to be an advocate for your child. Talk to the nurse, teacher, principal, aides, everyone who will be part of your child's experience at school. The parents of my daughters class new me as well as the staff at her school. They were all very nice and willing to work with her food allergies.

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By ketial on Thu, 06-06-13, 01:20

Hi very scared mommy,

I completely understand what you are going through, my son is starting kindergarten in September and he is severely allergic to peanuts/tree nuts. I called up the school district that he is supposed to attend and I was able to get a meeting set up with the superintendent, district nurse, director of food services for the district, the principal of the school that he will be attending. I brought in lab results from the allergist, and my husband and I (along with grandma and grandpa) explained the concerns we had regarding the safety of our son. we are in the process of trying to get a 504 plan for him, and also asked that peanut butter and jelly no longer served in the cafeteria. we asked for our sons classroom to be peanut free and we are trying to get a one on aid who will shadow our son through out the school day with his epipen in case he should need it. thank God the district nurse has been very helpful, but you have to keep fighting. I am not going to give up until this is off the menu. YOu have to be persistant and keep calling the district until someone talks to you.

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By mizzlopez on Thu, 06-06-13, 15:27

Hi ketial,

Thank you so much for the info. I now know where I need to start. It's so hard to get people to actually take this seriously. His Sunday school teacher has known him since birth and she still didn't listen to him when he went to tell her that someone at his table was eating a peanut butter cup and peanut M&M's. She made him go back and sit down, luckily I was walking in as this happened and I heard him telling the kids please "don't touch me, I can't be near that." I felt so bad, my heart dropped to hear him say that and I ran to the classroom. Seeing that the teacher that's known him all his life wouldn't listen to him how will I be able to trust a school that's just meeting him for the first time? I'm so glad I found this site because I've felt so lost and I feel like I have to be on guard every minute of the day with him. I work full time and attend school part time but I'm ready to just quit to go to school with him. Again thank you for reading and replying to my post. Please keep me updated on any new information you find out that can help. I will keep your child in my prayers and hope you have much success with getting the school to follow what you request. I will not give up and I'm ready for a fight. Have a great day!

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