How do you remember to carry your EpiPen?

Our support group had its first official play date on Sunday! It was fun being at the park with other families who really 'get it'. It is sooo nice to be able to talk to other parents about whats going on in our lives, and how allergies affect it.

I asked the other moms how they remember to carry their Epinephrine? Each mom had Epis or Twinject in their handbags. Because Dads don't have handbags (or manbags!), it was a problem. Many parents have spare Epinephrine stored in the car, despite knowing the Epinephrine is temperature sensitive, as it was the only solution they had.

I'm glad I asked the EpiPen manufacturer at the SF FAAN Walk to make the Epis smaller; at least I tried.

Making Epinephrine dispensers a more convenient size would make it easy for people to carry the meds everywhere with them. Imagine an EpiPen the size of a lipstick, that you could use as a key fob? Or even a large watch with two pre-measured doses - to inject you could just press a button to get the life saving epinephrine (it could also tell the time :-)

We have an Allergy Pack Combo that we use as a (very large) keyring. So any time we go anywhere, our keys help us remember to bring along the Epi..

How do you guys carry your Epinephrine? How about your spouses?

First foray into baking without a kitchen

We're doing a major remodel of our kitchen, which is extending rapidly into other parts of the house (there was a 5'x5' hole in our bedroom wall last week!). Our kitchen is a big hole.

I usually do all our baking to avoid nuts.. and because my Kindergartner needs an afternoon snack, I thought I'd try to bake some healthy (?!) cookies for him in our temporary kitchen upstairs.

I started out with an oatmeal cookie recipe, added toasted wheatgerm, currants, and tiny dark-chocolate chips (it can't be any worse than the nut-free Quaker granola bars he's been taking for afternoon snack!).

The kids were very excited about my baking, as its been over 2 months since cookies or cakes have appeared.. so they couldn't contain themselves and were aching to dive into the cookie dough, which they did to their satisfaction.

Well, the DeLonghi convection toaster oven did ok - despite its convectionness (!), the bottom cookie tray took longer, and the top tray browned faster.. but I made them!! I also decided bigger is better when it comes to my sons.. hence the second batch of super-sized cookies.

Its good to be back baking, and blogging :-)

FAAN walk for a Cure.. in SF!

Our support group attended the FAAN walk towards a cure in SF this weekend. Despite the drizzle and grey skies, it was great!

There were lots of vendors represented; I especially liked speaking with one of the managers at EpiPen. I requested they look into redesigning the Pen to make it smaller; there is apparently something in the works for next year.

I tasted Divvies cookies which are great, a new candy bar from Enjoy-life foods, which is really yummy - and also Crayon all-natural fruit and sports drinks, which I LOVE. My son can't drink Gatorade because the whites of his eyes go red (allergy?); I guess its the artificial color.. so these natural ones are great! Thank you Crayon! Now he wont feel left out when his team have a special after-soccer drink :-)

Gabrielle and I manned a table for our support group; we had lots of people interested in finding out about our group. We shared the table along with FEAST, a support group based in the East bay. It was really great to meet the FEAST leader, Mimi, and talk to her about what they had done.

Gabrielle and I had cute buttons for giveaways, which said 'Peanut Free Mama', 'Ix-nay Uts-Nay', and 'Dont you dare feed me'. They were really popular. Next year we'll also have some other foods represented (Allergies are not Eggsadurated, or TWheat Allergies Seriously!, maybe?). If you have good ideas for other slogans, let me know!

Swings and roundabouts

Its been ages since I posted last. Lots has happened. The prep for our remodel and trip to the UK, and L going to school really took its toll.

The worst was the first day of K. On the way home, my son casually told me (as only a 5yo can), that he had a Turkey and cheese sandwich at school today. But I didn't pack him a sandwich!!!!

Turns out the head teacher (to whom I had spoken at great and copious lengths), FORGOT to tell L's teacher that he was *only to eat food from home*; his teacher knew about his allergy, but not the no food rule. Thank goodness he was fine. But I was not - I fell to pieces. After all the effort trying to prepare for his new school; something as fundamental as this went wrong. It totally blew away all confidence and faith that I had it 'under control'.

I also couldn't believe he stood in line with the other kids! He must have asked the cafeteria staff if there were any peanuts or tree nuts.. because he asked me if he was allergic to wheat (which was probably what the cafeteria staff asked him!).

What could I have done differently? What did I do wrong? What should I have done that I didn't do? What if he had had a reaction? Lots of guilt, worry, fear, anger - on top of my travails of the last few months it was all too much. It totally blew my energy stores, and I was left bereft!

What did I do? First thing was to speak to his teacher first thing next morning. She was horrified and very sympathetic. Then what? Need to regroup and work out what additional profilactic actions I can take?

I read Linda Coss' How to manage Your Child's life Threatening Food Allergies and also Caring for your Child with Severe Food Allergies. Both gave me a really good idea of what I could have additionally done.

I also scanned KidsWithFoodAllergies web site (one of my favourite online support forums for Parents). Along with reading great posts from those that have been-there before me, I found an excellent 'Food Allergy Discussion Guide' bySafe@School, in the Resources section.

Anyways, I cobbled together a discussion list for the head teacher, and also put together a folder for the Class teacher (and any substitute teachers). The folder includes:
o Emergency Action Plan
o A summary of L's allergy and asthma, and dermatographia (1 page)
o A list of possible symptoms, along with 4 pictures of L having a reaction (2 pages)
o An introduction to Food Allergies (2 pages)
o The Chart which shows the grading of symptom severity

I met with the head teacher and his class teacher. We discussed the contents of the folder, how we would deal with L's penchant for lining up with the other kids, the symptoms and signs of an allergic reaction. We also talked about using FAAN's PAL program. The school were very positive! And I feel a little more positive now. Although my illusion of control is not in evidence (probably a good thing!).

I still need to work with L on a new set of skills of how respond in this new environment...