Gifted Issues Discussion homepage Forums Twice Exceptional UPDATE - IEP help - academics, PDD-NOS, allergies

Whoahhhhhh.... "locked" is really, really, REALLY bad.

Our DD has been wearing her epipens since she was not quite 3. Our rationale (suggested by our allergist, actually, in light of her super-fast and super-scary reaction history) is that you want your instincts to lead to the RIGHT (and best possible) outcome-- so what would you do if the allergic child appeared to be in distress? Run to him/her to find out what is wrong, right?

Anyway, locked is really bad. The reason is that you have to ask-- just how long would it take in a worst case scenario to get to them? Next IEP meeting, if you get pushback on having a set in the classroom, calmly ask them to PROVE IT to you that such a thing is unnecessary. Bring a stopwatch.

If it takes them more than 1 minute to get that epipen in front of you-- it's too long.

I think what I read in the school policy was kids that self-carry also have to self-administer. Which is why we didn't even consider him carrying it ... that and the fact that he wants to know how everything works so I cannot trust him with it just yet! lol But I will push for having it in his classroom and the teacher or aid or someone take it wherever they go.

Another thing I thought of too... If your child does any afterschool activities, the nurse may not be there. I have felt comfortable doing these things for my son when they have not been food related, and I talk with the instructors ahead of time and tell them about DS's allergies and his epipen. DS has an epipen in his backpack, which he takes with him to the afterschool activities. This possibly wouldn't be allowed if I went through any official channels, as I don't think the kids are supposed to self-carry in DS's elementary, but that's what we do.

The schools DS attended had this same policy, which is why we don't have DS self-carry at school. Really, if someone is having a horrible ana reaction, which may include passing out, how can they possibly self-administer?

lol that reminds me of my verbal agreement with DS's OT he goes to every other week. When I need to leave him there alone for a bit, I leave the epi pen there and I promised the therapist not to sue her if she ever tries to save his life! And I KNOW she is ready to break their own office policy should the need every arise.

Good thinking.

Yeah, kids are ready for self-carrying (and later, self-administering) at different ages. It's very individual.

The field trip thing is hard. We basically look at ANY disruption to standard routine as being high risk. So, with that in mind, holiday parties, field trips, testing days, substitute teachers, etc. are all higher-than-usual risk for human error. You'll want to build extra safeguards around those things-- probably spelling out responsibility for meds, for checking on safety, etc. much more explicitly than in the usual school day.

This is why in-class surprise treats are so problematic. Many parents choose to have a "treat box" for their child in the room, but there are a few things to think about with that choice. Who will have access to it? I've heard more than one story about safe treats being replaced with not-safe look-alikes by a well-meaning staffer that raided the stash. Also, at 6-8yo, a lot of kids begin to REALLY dislike being different, and for them, the safe treat box becomes an emblem of exclusion... and you can bet that the adults in the situation think nothing of leaving your child out several times a week (without even telling you) if your child has a safe treat box.

Thirdly, there are teachers who simply FORGET to let the child get anything from the box. Subs may not know it exists-- and may give your child unsafe items along with his/her classmates.

I'll second the notion of REALLY not trusting school staffers to decide on food safety. They don't have the day-to-day experience to draw from, so they are far more likely to make mistakes. What works well for some parents is to use a STICKER to indicate to the child that a particular food item has been checked and approved by mom/dad. Another word of caution there, though-- be wary of cross-contact in handling/serving of group snacks. It does no good to have 'safe' tortilla chips sitting next to the eggy veggie dip and a crowd of people reaching into the bag. KWIM?

They can't. Which is what we STILL tell people-- and my DD is almost 14.

It's a stupid policy, for sure-- but a common one. A good allergist can find ways around it, though, such as treatment orders reflecting a need for "immediate" access to emergency meds, but without an expectation of self-administration.

My daughter has had multiple anaphylactic reactions to trace amounts of several foods, including and especially eggs. We did about 1/2 year of a public preschool program, secured a stellar 504 Plan, and then pulled her to homeschool. A few comments:

First, I don't know the interaction of IEP plans and food allergy plans because my daughter didn't qualify for an IEP. I will say that I would be very leery of only having an Individual Health Care Plan to address the food allergies. A 504 Plan (or IEP) has legal teeth. The school district MUST follow it with consequences if they don't. An IHP has no legal teeth. They are being "nice" and doing you a "favor" with no consequences if they ignore it. Also, a 504 Plan protects your child's right to "participate and access" school, unlike an IHP. A 504 Plan ensures your child doesn't sit in the principal's office or hallway while everybody else has a Winter party or goes on a field trip.

Many people find that the plan they initially get is the plan they get for the remaining school years. School's tend to be inclined to say whatever accommodations they have done in the past are sufficient for the present and future years. I approached our 504 Plan (or food allergy protection in an IEP) with that in mind. I needed to get NOW what I was willing to live with for my child's remaining school years.

Even with that, I decided not to utilize the bus. Too many kids eat eggs for breakfast, so the risk, I felt, to my child was very high. Even though they would have the bus driver trained and willing to administer an Epi Pen, they wanted to simply keep the Epi Pen on the bus. I feared that however carefully I explained how putting the Epi Pen in the glovebox during subzero (-30 degrees F) that for convenience my daughter's Epi Pen would end up being kept in the glovebox. The risk, of course, is that then the driver can go through all the motions of giving her an Epi Pen, but with no effect, because the medicine has been rendered inert by the extreme temperatures in the glovebox.

I would fight to the end to get the Epi Pen unlocked. I pulled research articles in pediatric allergy journals that cited locked Epi Pen's as a very dangerous practice that led to deaths. I also found their own regulations stating that Epi Pens must be kept unlocked and instantly accessible at all times. When a child is in rapid demise, you have a very, very scary situation. Fumbling to open locks and fumbling to find the keys can have catastrophic effects.

I would also be very careful that the school doesn't have a policy that only a nurse can administer the Epi Pen. Because our school had a nurse a few doors down from my daughter, they were firm that only the school nurse could administer the Epi Pen. Even with two school nurses in the building, invariably one is administering flu shots at a different building and one is sitting in the lunchroom because she needs a 10 minute break. In short, times invariably occurred where NO ONE was available who could give my daughter an Epi Pen.

Again, that article in the pediatric allergy journal that examined the dangers of school for kids with anaphylaxis and the key deficiencies responsible for fatalities at school assisted me greatly. That article cited a failure to train multiple people how to use the Epi Pen as a major, dangerous deficiency found in some schools.

I found it very helpful to keep away from "what mom wants" and point to "what pediatric allergy research shows" and other studies, like Massachusetts study and suggestions for preventing food allergy fatalities in schools, to get the measures implemented that I wanted. That approach, I felt, even more so because I presented it in writing, also put them in a position that they hopefully knew that if they refused to correct known "major deficiencies" that resulted in death/severe consequences to any child that they were in a precarious position.

I also would caution you to consider emphasizing that ANAPHYLAXIS LOOKS LIKE ASTHMA!!!!! A chilling cohort of kids die because it looks like they are having an asthma attack. They even say they are having an asthma attack. They and others grab their inhalers. They frequently die because what appeared to be an asthma attack was actually an anaphylactic reaction. I asked the head of a pediatric allergy clinic how I could distinguish (and tell others to distinguish) between an asthma attack and anaphylaxis. She said they are indistinguishable and told me that I should treat an asthma attack with an Epi Pen if there is any chance that my daughter has ingested her allergens. (Of course, double check with your own M.D.) But I had her write that into the emergency action plan for the school.

Hope this helps.

I would be careful about Epi Pen's on buses

Thank you again all for the great suggestions!

So, with any recommendations / notes from the doctor / allergist ... I should have all that ready prior to the IEP, right? To give the team heads up and to save us from having to meet again?

YES. Have copies available to "share" with "the team."

Go in with a bullet-point list that goes (from most to least critical) down your list of "must" haves, and make SURE that they hear all of it. If necessary, pleasantly offer to continue at a second meeting.

Don't be pressured into signing anything without thinking it through.

INSIST that the health plan be made part of the IEP. Your child qualifies as OHI (other health impaired) because he would otherwise have a 504 plan. He is NOT able to care for his basic needs to the same degree as same-aged peers.
Mom2277 makes exactly the same points that I'd encourage you to consider.

It might help you to actually visit your child's school and 'walk' through a typical school day-- that way you can take careful notes of hazards that aren't apparent to other adults. (Egg cartons for science projects, mayo jars recycled to hold paint brushes, etc.)

One more helpful thing to take a look at is Rhonda's outline:

http://foodallergyadvocate.com/

I've known Rhonda since ~2002. She is AMAZING. And thorough. Read through her version of a food allergy 504 plan-- cross through those things that don't seem to apply, but she WILL make you think of things that you'd otherwise miss.