No School Nurse, not even a "health room"!

[fuji]

My DD (13) was recently diagnosed with a peanut allergy. I've been reading many posts, many informational pages and a couple of books and over and over I see that communication with the school nurse is very important. However, there is no school nurse at my daughters school, they don't even have a health room for a child to go lay down! She has other health issues and this came up with her 504 plan last year. She needed a quiet place to lay down when in pain in hopes of going back to class. The 504 liaison (vice principal) ended up giving her a few options, including the counselors office which had a couch. He's super accommodating, and was very helpful through that whole process, so I think we'll be okay with getting a 504 plan and making it work, that's not really the issue. The issue is not having a school nurse and what to put in the 504! Who would be responsible for overseeing my child in an emergency? Although she is quite mature at 13, she is new to this peanut allergy and is just trying to figure it all out! Yesterday she bought a purse, went in the store by herself and came out with this really cute purse and proceeded to dump out her big bag she's been carrying around and told her father and I that she was hoping the outside pocket on this new purse would fit her Epi-Pens! She thought of that all by herself, with no input from us! It all fit! I was so proud her!
The other issue is that there is no cafeteria at her school, the kids walk about two and half blocks to the 4th-6th grade school for lunch every day. (except when there are weather warnings or it's below freezing, then they get a bus). But don't worry everyone, they have a brand new sports complex and bleachers that are amazing! So obviously she will have to carry her Epi-Pen everywhere she goes, so does she need an extra set at school? or are we better off keeping the extra set at home? It doesn't make sense to me that we would have a set just sitting in the office, she's not usually in the office.
The final issue, I can think of at this time is our EMS system. From what I understand (we just moved here two years ago from a much larger city) the EMS is lacking. All of the EMT's and firefighters are volunteers and their response time is hit or miss. I wouldn't even give EMS a thought back home, you call and they are at your doorstep within minutes!
Just for additional information and clarification:
Her big brother (16) goes to school with her and drives.
The hospital is about a half mile or less from the school.
The firehouse is an additional 3/4 of a mile from the hospital.
Our house is an additional eighth of a mile from the hospital.
Our hospital (if you can call it that) does not have a "real" ER.  When you get there you sign a paper that says the Dr. has 30 minutes to get to the hospital. There is no one on "standby", just a receptionist who may or may not be a nurse/CNA. When they call the Dr., the Dr. can prescribe over the phone and they do that sometimes. The nearest "real" hospital is 80 miles away! If they do medivac someone out, the helicopter comes from the hospital 80 miles away.
Sorry this is so long and probably doesn't make any sense, but my mind is spinning!   

[ajasfolks2]

OK, having read through your post a couple times, I don't see mention as to whether the EMS even carries its own epinephrine?  Have you asked? That is part of equation as well, so far as I can see it.

There will be need for school to have multiple trained-on-epi and trained-to-recognize-anaphylaxis personnel -- they will be staff members who wear other hats, normally.

What does your school do for those students who say, have diabetes, and would possibly need insulin injection or other students with injectable meds during school hours?  How is that handled -- do you have any inside info?

More tonight when I get a chance!

[PurpleCat]

No, not long.  You have a good grasp on your child's situation.  My DD is 15.  Food allergies are much easier with most children as they get older and take on more responsibility for themselves.

Sounds like your daughter is responsible.

Having said that, she needs an adult who can help her.  It is possible during anaphylaxis that your child might not be able to give herself the shot.  Either due to fear or due to a drop in blood pressure.  No matter what, there should be a trained adult who can get to her immediately to assist her if needed. 

I would be concerned with the walk back to school from lunch.  That sounds like the highest risk area of the school day for her and a possible time where a trained adult might not be in the vicinity. 

Does she only eat food from home or will the school be providing her with lunch.  If you send it, I add a paper place mat and wipes in my DD's lunchbox.  She can have a surface to put her food on instead of the table and she can wipe any surface if necessary.  Not sitting directly next to a child eating peanut products is a good safety idea too.

My DD has been eating with her friends since 3rd grade.  No real problems for her in the cafeteria.  Her friends are careful around her and if they have something she is allergic to they just sit further down the table from her.

As for the quantity of epis you need I can share what we do.  DD carries 2, the school nurse has 2 more in her office.  I always have one with me and we have an extra pair at home too.  My DD has historically needed more than one.  Her most recent anaphylaxis she had one at home, the ambulance was here quickly, we were at the hospital in less than 15 minutes, she needed more when we arrived at the er.  The second phase of her reaction was worse than her first.  Our EMT's actually stayed and asked about what was going on because they had never seen a biphasic reaction.  One of the EMT's even spoke with me a few weeks later with other questions they had.

It is rare but possible for an Epi to fail.  I suggest having extra at school.  It really is what makes you and your daughter feel safe and covered.

Based on the remoteness of your situation, I'd suggest speaking with the EMT's in your area as well as the medical facility.  Ask them what they would do if your daughter had a reaction.  Don't wait until it happens to find out or to find out they don't know a good protocol.  If they don't, hook them up with your child's doctor or someone to help them get educated.  Our ambulances carry epinephrine on board.  Do yours?

I also know our police station is where our 911 calls go into.  Ours asked for information about DD so that if they picked her up away from home, they would know what to look for.  My DD also wears a medic alert bracelet.  No mater where she is, medical professionals have access to her medical information.

With lots of work on your end upfront, you will be able to have things in place to help your daughter first to stay safe and avoid contact and secondly to care for her if she were ever to experience anaphylaxis.

Welcome to a great board of people with lots of experiences to share.

[CMdeux]

In addition to all of the above--


find out how CELLULAR traffic is routed in your area-- that is, does dispatch handle those calls as well?  If not-- how are they handled?


If your DD will be without an adult nearby who can help her (that is, during the off-campus parts of the school day), she may need to carry a cellular phone and train friends to use her epipens.  This is something you're going to have to talk to your DD about-- and maybe share some stories with her, if she is resistant to being forthcoming with her friends.  Not to worry you, but there is a lot of evidence that suggests that one reason that the highest risk demographic for food allergy is young teen girls, is that they prioritize social standing and fitting in above safety.  They'd rather die than be embarrassed in front of their friends.  Sadly, some of them wind up making just that binary choice.   

If she's feeling "off" then that is NOT the time to go off to a bathroom alone without telling anyone what is going on.

[CMdeux]

Also wanted to add-- this situation, as described by the OP Fuji?  COMMON in the far west, particularly the rural far west.

This IS reality if you live in a place which is: a) west of the Mississippi R., and b) is NOT in a greater metro area or a city of population > ~15,000.

The realities are thus:

a) NO medically trained school personnel.  Period.  Ever.  If you want people trained, you'll be doing it, and persuading them to be interested in helping.

b) NO professional first-responders-- they tend to be volunteers or county sheriff staff-- if you have a 911 service, that generally gets you to a county dispatch center.  Figure on up to 90 MINUTES response time for medical emergencies in some locations-- best case scenario is generally more like 10-20.    Ask LOTS of questions-- and maybe plan to call dispatch and work out a hybrid, on-the-fly transport plan-- make sure that you have adequate epinephrine on hand to manage this situation on your own.  Talk to your doctor about other medications that s/he may want you to have on hand if you are 2h from getting medical treatment in a real hospital... which brings me to my next point-->

c) MAYBE no "hospital" other than by air or via 2+hr medical transport.

d) uneven or unpredictable cellular service-- patchy dead spots are VERY common in the mountain west and in coastal/remote areas.   Again, use the buddy system-- someone who is medically vulnerable should NOT be alone and without transportation in an area like this.  One of the few things on our "NO-- NEVER" list for that reason is solo distance running or backcountry sporting activities like canoing, skiing, kayaking, hiking.  Not solo.  NEVER.  Also consider whether a satellite communication device is a good idea-- depends on your circumstances, obviously, and the answer is "no" for most people.

[yelloww]

When we go to remote locations (a decent distance from a hospital) I take liquid steroids with us. The allergist has given me the dosing procedure that they would use in the emergency room if they were dosing him up with steroids along with the meds. Maybe that could be part of the plan that someone (the principal??) could give her the dose if the Epi is used to buy you some time.

When we fly, we take 6 Epi's. I'd want at least that many around the school in your situation.

[CMdeux]

 

When we're here in town (regional med center) I'm okay with DD being with just a couple of epi's (mixed lot numbers), but if we go to the beach or something, where we're more remote, or doing stuff that takes us more than 30 min or so from medical care?  AT LEAST four.


I figure that we would HAVE to cover the first 90 minutes of a life-threatening reaction without assistance, basically. 


(When we flew over the Atlantic, we were almost six hours over water-- I had twelve epinephrine autoinjectors on hand, as well as other supportive medications like inhalers, antihistamines, ranitidine, steroids, etc.)  That's kind of how we roll when we fly with DD.  I'm okay with me only having four autoinjectors in that situation, but I'm not as sensitive as she is, and the environment is more hostile to her give the nature of her food allergies (peanut-- mine is shellfish).

All of that is simply rational precaution when you are a person at high risk for anaphylaxis from things that you cannot reasonably control.  Food allergies are in a weird grey area there-- I mean, yeah, you can (mostly) control what you eat-- but the statistics don't really lie there, either-- nobody is perfect.

I would say that you do NOT have reason to "freak out" and that you seem to be doing a great job thinking about a lot of very diverse things, not irrationally so, just-- because you must.  You may eventually determine that some of those things are items that you are NOT going to worry about much, and that's fine-- because you've made a CHOICE about them, see?  That's smart.   

[daisy madness]

Does your state have food allergy policies that schools have to follow? It might be worthwhile to print them out and discuss them with the school to be sure they are in compliance.  And check your district's website to see if they have anything there regarding Epinephrine. 

Please keep us posted. 

[CMdeux]

http://www.aafa.org/display.cfm?ID=5&sub=105&cont=778

Well, that is some good news. 


More official documents:


http://opi.mt.gov/PDF/SchoolFood/Forms/CR/Accom_LifeThreatAllergy.pdf


http://www.opi.mt.gov/Pdf/SchoolFood/Forms/CR/PeanutAllergy.pdf

http://opi.mt.gov/PDF/SchoolFood/Forms/13_14AdminUpdateMemo_RCCIs.pdf

http://opi.mt.gov/pdf/SpecED/guides/HealthCareNeeds.pdf

(Not sure if there might be an update to that last document, which is dated nearly 10 years ago.)




opi.mt.gov/pdf/SchoolFood/HACCP/SOP_FoodAllergy.docx


Honestly-- you may HAVE to dig further at your state health department and Dept of Ed. websites, but understand that very small, very rural districts, and charter schools, may have waivers exempting them from regular school policies that would otherwise apply statewide.