With EoE, Allergies, Asthma and a G-Tube

Operation Keep Tinleigh Safe

So just how are we keeping Tinleigh safe at school?20170909_121122

Last year at the end of the school year Tinleigh and I were lucky enough to go to the school together for two whole days and shadow a kindergarten class. It was so much fun. We learned different things that may hurt Tinleigh that we hadn’t thought of.

So here is our list of what needs to be done for Tinleigh.

  1. Tinleigh is allowed at anytime to say to any teacher “I don’t feel safe and I AM going to the Nurse’s office.” I wanted to let Tinleigh know that if she’s uncomfortable around anyone or anything that she has a safe place to go. Teachers don’t know Tinleigh yet and something may happen that may not cross their mind as being unsafe for Tinleigh.
  2. Tinleigh does not go to the lunch room except for the end of the day after it’s been cleaned. They serve breakfast in the morning so she can’t go there after drop off before the bell rings. She hangs out in the nurses office until the bell rings. During lunch Tinleigh goes back to the nurses office. Tinleigh doesn’t mind this at all. She loves helping the nurse with tasks and chatting with everyone working in the office. She’s become their daily entertainment.
  3. 20170915_212734Tinleigh’s lunch bag is left in the nurses office. It never gets the chance to be mixed  among the other lunch bags.
  4. After lunch every kindergartener must clean their hands before going to recess.
  5. Tinleigh has a special table in the art room that is wiped down before she enters. They also bought her, her own art supplies that no one else can touch. The art teachers nephew has EoE as well, she gets it.
  6. In computer class Tinleigh’s keyboard is wiped down and she has a specific one she sits at everytime.
  7. For both Gym and recess Tinleigh gets her belly wrapped with an ace bandage to protect her button from getting bumped or pulled out.
  8. Afternoon snack is on the playground. If a child chooses to eat their snack they sit in a special area. They must clean their hands before going to play.
  9. Tinleigh’s teacher contacts me if she ever has a question about letting Tinleigh use anything.
  10. Tinleigh never rides the bus. Nathan drops her off in the morning and I pick her up after school just like we’ve always done with the boys.
  11. In the classroom Tinleigh does not share her supplies with her table. She has a little carrier that she keeps her things in.
  12. Tinleigh wears her feeding tube backpack twice at school for an hour each time. The kids in her class know what it is and have learned not to touch her while she wears it.
  13. The first week of school I went into the class and read the Tubey book to the class. Tinleigh showed them her button and we allowed the kids to ask questions. I just explained how everyone is made different and this is a special way that Tinleigh is different. I love that age, they’re all so accepting to differences.
  14. Before school started the teachers were taught more on allergies and made aware there would be a child with airborne allergies coming to the school.
  15. She is never allowed to drink out of the drinking fountain.

20170821_150218I am somewhat comfortable with Tinleigh being in school. I have never seen a child so excited about her days. The day she got her first library book she came yelling down the car line “MOM, MOM, look! My first library book!” School is definitely Tinleigh’s thing. I am SO glad we made the decision to try and make it work for her. I feel we have some really good rules in place for her safety. Almost everyday I still fear I will get a phone call that something has happened. I still have the same fear with the boys. I don’t think it will ever go away.

I feel so fortunate that we have landed in one of the best school districts. If they weren’t so willing to really sit down and figure things out it never would have worked out. For that I will forever be grateful.


September 15, 2017 Posted by | LIVING, Tinleigh's allergies | , , , , , , , , , | 2 Comments

Anaphylactic attack at school

To continue on my friends blog post yesterday My hard truth I want to share a true story about just how scary and serious an anaphylactic attack can be.

I can not imagine one of my boys going through this, but every time they go to school, a social food event, or are around other people and food in general they are subject to it happening.

I am so thankful Gage only touched peanut butter that day in his class.

Both of my boys have asthma just as Max does in this story.

This article comes from Protect Allergic Kids (PAK)

7-year-old Boy Survives Peanut Allergic Reaction
A mother’s story.  OMAHA, Neb. — Carter Lake, Iowa

  It was Tuesday, right before Christmas.  My son is in first grade.   They
were having a movie/treat day at school.  I was up at the school around
9 o’clock that morning and the teacher showed me two treats they were
having for the class — popcorn and marshmallows — I okayed those treats.
I went home and I got a phone call at about noon.  His teacher said Max had
taken a bite of a peanut butter granola bar.  So I told her to get him to the
nurse immediately.  They put Max on the phone with me and I asked him if he was breathing okay.  He said yes and was able to talk fine.  The nurse gave him Benadryl (antihistamine) and checked his oxygen level which was at 97.

  I drove to the school immediately.  I got him in the car and he burst out in tears that his tummy hurts really badly.  I took him to the emergency room at Children’s Hospital where we were in triage 30 to 45 minutes with no treatment. Then the hives started creeping up on the back of his neck and his face.  The asthma symptoms kicked in hard and fast, wheezing and coughing.  Max has asthma so when he has a food allergic reaction, respiratory distress is triggered.  The ER crew gave him two shots of epinephrine and three vials of prednisone along with a string of breathing treatments.  Nothing was helping the symptoms at all.

  At that point, the doctors decided to intubate him.  They had to sedate him so they took us to the room next door.  He started to vomit.  They were afraid to aspirate his lungs but he was okay.   His heart rate dropped when they put the tube down his throat.  They performed CPR on him for about a minute and found a pulse.  They rushed him to ICU.  He was bagged.  Someone was squeezing the bag to breathe for him.

  The doctor came out and said he wasn’t doing well in there.  Our only option was to put Max on life support because his lungs had shut down.  The doctor said his survival rate was low enough to put him on a machine called the ECMO (ExtraCorporeal Membrane Oxygenation).  The doctor said if it was his son, they would do that for him.  They had to cut into his jugular veins and put two catheters down into there.  One catheter pumped out the blood with the CO2 in it and went into a machine, cleaned it out and put oxygen in.  And the other catheter pumped the clean blood back in. He was on that machine from Tuesday night until Wednesday morning.  During that process the peanut was finally out of his system.  Max’s case was the first time that ECMO had been used to save a child from a food allergy reaction at this particular hospital.   On Wednesday morning, they were able to take him off the machine.  He was on the ventilator until Wednesday evening.  Max was moved out of the PICU and into a regular room on Thurs. morning.  Thursday evening, we got to go home.

  After that he didn’t talk for two days.  I thought he was emotionally damaged because he was very sad and quiet.  He still withdraws around groups of people.  When he was in ICU with the tube down his throat, we were asking him questions and he was asking about his sister .  On Christmas day, he went into a shell around family and stuck to himself.  Even now, he gets quiet around groups of people.

  Max’s allergist told us Max said “I am going to die” in the ER.  He had that impending sense of doom.

How did this happen?
  His teacher said a little girl brought in a variety pack of granola bars (including peanut butter) and handed it out to all the kids when the teacher was not looking.   Max said he showed his teacher the plate and asked if it was safe to eat and she said yes.  I still don’t understand why this food was sent into the class in the first place and how it landed on his plate without the teacher knowing.   He always has his own snack bag at school.  His epi-pen stays in the nurse’s office at this time.  The nurse did not call 911 because he did not have breathing issues.

Next steps
  Max has a 504 meeting coming up at his school to protect his civil rights.  They had a FAAP (Food Allergy Action Plan) in place at the beginning of the year.  Class parents were notified about food allergies at the beginning of the year and after this incident a reminder letter went out by the principal.  There is now a peanut free classroom poster outside the classroom door.  I hope to remove food from the classroom for birthdays and learning activities.  Because of this incident, the Emergency Room at Children’s Hospital is changing protocols on treatment for food allergic reactions.  The nurse recently read a food allergy storybook to the kids and told them about FAAN‘s Be a PAL program.

Max attends a primary school which includes Pre-K, Kindergarten and 1st grade.   His mother hopes to share her experience with others to prevent this from ever happening to another food allergic child.       

April 12, 2012 Posted by | Charlie's allergies, Gage's allergies, Helpful sites, LIVING | , , , , , , | Leave a comment


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