Sunday, September 22, 2013

Are there any walnuts, pecans or hazelnuts in that?

Earlier this week we had about a 6 hour stay at the allergist office.  Patrick was due to go from 100mg to 125mg so we go in and do the normal thing, they give him what I think is 125mg, we wait 2 hours and then we leave with the doses for the next two weeks.  While we are riding down the elevator I notice that the bag says 100mg....hmmm that isn't right.  We go back and after about 10 minutes figure out that they thought Patrick was supposed to be going from 75mg to 100mg instead of 100mg to 125mg.  We verify that he has indeed been on 100mg for the past 2 weeks so at that point we need to give him another 25mg and observe him for another hour.

At this point it was about 12:30 though and we were both hungry so we ran down the street to McDonalds before giving him the additional 25mg.  When we got back to the office Patrick pointed to his happy meal and asked me "Are there any walnuts, pecans or hazelnuts in that?".  I told him no and gave him a high-five, a big hug and told him it was awesome that he asked that question. He's asked this a couple of times now and we are excited that he is starting to think about it.

Thursday, September 12, 2013

research notes - what's with all the allergies? 504 suggestions for tree nuts

108th day
Sep 9, 2013

It's been a heavy research week for me - talked to lots of folks about 504 plans and such.  Everything has been calm, although we had to switch to dinnertime dosages so that we have 2 uninterrupted hours to keep an eye on Patrick.  On workdays we don't always have 2 hours of blocked time with him, so we are now keeping doses in the car (in case we go out to dinner or are running REALLY late), and trying to adjust our schedules.

Things of interest:
Discovery Channel documentary on the epidemic of food allergies in America - you can view this online which is awesome.  They have some good stories (and some very scary ones), and talk about OIT therapy at about the 40 minute mark (which is what we are doing with walnuts right now)

State laws for allergies/asthma by state - NC summary and links to the actual legislation

North Carolina law, Section 115C-375.2 (2005), requires local boards of education to adopt policies authorizing students with asthma or anaphylactic reactions to possess and self-administer asthma medication on school property, at school-sponsored events, and in transit to and from school.  These district policies must include certain provisions: 
  • written authorization from the student’s parent or guardian permitting the self-administration of medication
  • a written statement from the student’s health practitioner verifying the student’s health condition and prescription of medication
  • a written treatment plan for emergency protocol provided by the student’s health practitioner
  • back-up asthma medication to be kept on file in the school in the event of an emergency

Some salient points about the NC law and why I care:
-We are at greater risk because asthmatic kids are more prone to anaphylactic reactions
-We can let P self-carry his epinephrine injectors - this is unclear in all the Wake County school documents and varies widely by school.  But if we have to fight for it, we have the tools now.
-If a teacher forgets to move his injector around the school with him, he can always have one on him.  They might not have minutes to run and get it.  And if it's not on hand, they are less likely to use it as fast as they should.
-He can carry to/from school, for sports, and field trips.
-schools have to have school wide policies in place for asthma and anaphylaxis (we need both so this is positive and means the staff are more likely to be trained)
-They don't stock unprescribed epinephrine (yet) - but the bill S.B. 700/H.B. 824 is still pending. 

I'm sure it won't be a walk in the park, but having help navigating the minefield of rules has been fantastic.

504 notes - I talked to a GREAT lady from the POFAK (parents of food allergic kids) forums who helped me to start a list of accommodation requests that seem reasonable for a 504 plan.  Having a tree nut allergy but NOT peanuts changes the list pretty dramatically.  The risks aren't quite as great for us.  (He might not NEED to sit at a nut free table).  I won't send him to school with peanut butter (but he can eat it at home).  Erin doesn't get PB anymore either, there is one boy in her class with a severe peanut allergy.  Sunbutter works just fine, but we have to watch packaged foods.  (Kashi cereal bars, squeeze applesauce, annie's cheddar bunnies, and seed trail mix packs from peanut free planet are all favorites.  We try to pack our own foods but sometimes you're in a pinch!).

The current idea list - modifying as we talk to more folks and figure out what makes sense:

1. All staff who may supervise kiddo must be epi-trained and able to recognize a reaction.  (this should include bus driver, teacher, aides, lunch, specials staff)

2. Kiddo will self-carry epi-pens in a waist pack.  A backup kit with epi-pens, Benadryl, and rescue inhaler will be in the classroom with the teacher or with the nurse. (2 reasons to have the kid only carry epi: so epi is the only choice available and to eliminate risk of another kiddo getting a hold of the liquid/chewable meds).  If he isn't ready to self-carry, word this for teacher to carry and hand off to specials, lunch, etc.  Remove self-administer - he's too young, and honestly most folks having an allergic reaction feel so bad and can be so out of it that they aren't capable of doing it during a reaction.  We can't count on that, adults should be in charge if that is needed)

3. Staff will supervise handwashing (soap, not hand sanitizer) of each student after snack and lunch time.

4. Staff will sanitize tables and chairs after daily snacks with sanitizing wipes. Anything with actual TN ingredients is not served in the classroom as a group food.

5. Classroom will be food free except for the following: daily snack, birthday parties (kiddo's parents must be notified 3 days in advance), Winter and Valentine's parties.  (We might need to be the room parents, have parents send in money for the parties and then we do all the shopping.  This makes sure everything is safe.)

6. Substitutes that are not trained to use epinephrine: Kiddo will be placed in epi-trained teacher's classroom for the day or epi-trained para/TA will remain with the substitute teacher for the day.

7. Regular substitutes will be epi-trained. (i.e., the ones who do a lot of subbing for the school or who will be there for a long-term sub assignment)

8. Lessons that include food or allergy trigger must use safe brands.  Kiddo's parents shall be given a minimum of one week's notice to research and give approval.  If no safe option or accommodation can be made, the lesson will be replaced.

9. Kiddo will have a treat box kept in the classroom for use as needed.  (Covers when mom forgets to pack a snack, random PTA "surprise" food reward, candy handed out by specials teachers, etc.)

10. Food allergy bullying will not be tolerated.  Any bullying will be handled according to district policy.

11. "No shared mouth instruments, parents will provide a dedicated one as needed". (if they use kazoos, music instruments) - higher risk for peanut allergic kids more than ours.

12. Empty food cartons/cans being reused.  Often teachers will "clean" a nut can to hold group supplies or will stock a housekeeping center with empty real food containers.  Discard any unsafe containers of common allergens (nut jars, trail mix containers)

13. pencil pouch/box for his supplies.  Knowing how often little kids touch faces, stick fingers in their mouths, etc., we felt better keeping kiddo's supplies just for him.  

Notes for approaching teachers: "I know you don't want to have to epi my kiddo and this is one way to reduce the risk/make your job a bit easier" helps a lot.  Most don't want to have to be "the one" who messed up or who had to epi.
lunch arrangements.  Our school has a "nut free table".  Patrick eats PB&J just fine, he probably doesn't need to be isolated.  (Although I wouldn't send PB - I'd use sunbutter or wowbutter, etc...)  He's not airborne allergic to his nuts, it should work for him to sit with his class.  Suggested - sit at the end of the table and the kids next to and across from him can't have obvious TNs. 

Thanks to all the other moms and dads for the recommendations/assist on the idea list - keep them coming!  We will keep a running list until the summer and then sort it out with the school, allergist, etc...

Wednesday, September 4, 2013

100 days of mostly non-events

Sep 4, 2013
Day 100

It's been a while, but here's your status check on not so little Patrick.  2 weeks ago he was supposed to go up to 125mg, but he was fighting an infection (unrelated) and had a nasty cough and cold.  So we went to see the allergist as usual but they decided the safe course was to lower his dose for 2 weeks.  So we went back down to 75mg for 2 weeks.  Have to remind ourselves it's not a race, and that being safe is more important than doing this quickly.

Today is day 100!  And appropriately, we've gone back up to 100mg.

All is well, we're juggling lots of appointments (nothing new), and Patrick is bored at the allergist.  I'll take it.  Bored at the allergist is way better than excitement at the allergist.

We found out that Erin has a kid in her class with a severe peanut allergy, so she's getting only peanut safe snacks at school now too.  (the preschool is nut free).  Thankfully we already have a lot of that stuff for P, so it's not a big deal.  If she starts asking for peanut butter and jelly, we will get some wowbutter or sunbutter.  They keep using food as a reward for good behavior, so we went on amazon and bought some super cheap party favor stuff to donate to the goodie box.  I'd rather do that than have her always bringing home candy (half of which her brother can't have).

This is getting easier day by day, week by week, etc... The kids are more aware, we are more confident, and our circle of friends, schools, etc... that we feel are safe is always growing.

Happy summer everyone!