How many have to die?

Saddened and angered by yet another avoidable food allergic death of Amaria Johnson, a 7 year old girl at school, I've been thinking how am I going to keep my child safe at school. As soon as I start to get more comfortable with the idea, another child suffers and a family is devastated because our schools aren't keeping our children safe. Do I have a solution? Not for every child, but it's time for schools and all parents to start taking food allergies seriously.

I don't understand why epi pes aren't available in all schools. They have defibrillators in some schools for emergencies why not epi pens? The chances of an allergic reaction happening are rising. For a $100.00 a year so many lives could be saved. Most people don't know they have a food allergy until they have a reaction. To me it's common sense that the school has them.

So right now there are two links I want to share:

1. FANN also has a sample letter to send to your senators to encourage them to pass the School Access to Emergency Epinephrine Act. This is federal legislation encouraging states to adopt laws requiring schools to have epi pens to use for any student.

2. A petition from change.org asking that epi pens be available in all schools. It takes two seconds to sign.

Do your part. Send that letter and sign the petition. Fight for your children's right to be safe.

How many have to die?

Goodbye 2011 & Hello 2012!

Trying to find 10 minutes or more to sit down and write theses days is next to impossible. I don't know how the other mom bloggers do it. My hats off to you ladies! I myself am not that organized. I have piles of laundry waiting to be put away, a sink full of dishes, bottles and pump parts. My dining room is stacked with picture frames waiting to find a photo and a home. I'm not even going to describe what our "play" room looks like. At least my desk at work is nice and neat.

With that said, I look at the mess and think we had one heck of a year. Most important is that Cormac became a big brother. We are lucky he is such a good baby, and Mac is a great brother. Now add my hubby's new horrible schedule, to the new baby, Mac starting preschool, going back to work, and me trying to start a photography business, and needless to say, life has gotten challenging. There are days I say to myself, somethings got to give. Maybe his food allergies will disappear. That would make things easier. But that's not realistic. A girl can dream.

We went for our yearly allergist visit to see if we would get our Christmas miracle. Turns out his peanut numbers went up. A lot! It makes no sense to me after the huge drop last year. But what can you do? I can't say that it didn't upset me when we got the call. I was really hoping we were getting closer the possibility of him growing out of it. I guess I will always hope that it will change.

The good news is we may be able to rule out all tree nuts soon. We got the go ahead for hazelnuts. He's even had nutella, and is doing fine with it. The Dr said she wants to do a food challenge for cashews. If he passes, we can say he's not allergic to tree nuts! It's the last one showing up in the tests.

At the moment I'm excited about the idea of the food challenge, and the hope that we can take away the tree nut fear. But there is a waiting list for the challenge, so by the time it happens I'll be a mess. For now though, I'll think of it as a good thing.

We are also debating on whether or not to test the baby. Our allergist recommends having him tested for peanuts around 9 months to a year. We probably will, but I have concerns regarding false positives. We will look more into it and then decide. If anyone else tested because of an older sibling can you please share your experience with me?

Our holidays from Halloween to New Years were uneventful in a good way. Thanks to a snow storm the week of Halloween, trick or treating wasn't an issue this year. Family made all the holiday meals safe. I couldn't be happier. There are tons of other things that happened in 2011, but to write it all out would take all of 2012. One one my resolutions is to be better about blogging. Now if the kids would only cooperate.

I hope 2012 is a wonder reaction free year for you all!

Goodbye 2011 & Hello 2012!

Happy Thanksgiving!

From our family to yours.

I am so thankful for my two happy and healthy boys, food allergies and all. We face food challenges daily, but compared to what others have to face, I feel truly blessed.

Wishing you and your family a safe and happy Thanksgiving.

PS: I apologize for not keeping up. I don't know how these mom bloggers do it. Hats off to you ladies. You are more organized than I!

Happy Thanksgiving!

What is a Peanut Free School?

So far so good. Mac has been in school for a month now and everything is going great. I check the snack every time before class, and he comes with me to "help". Now he even asks if it has peanuts in it as I read the ingredients. If it's not safe I tell him, and he's ok with having his own special snack. We've had one party and he had his own cupcake. Again he was fine with it. The funny thing is, the other kids want what he's having. The teacher is doing a great job teaching the kids not to share or take each others food. I love that she is turning his allergy into a teaching opportunity. That's a good teacher.

So what is a Peanut free school I ask? His school is peanut free, yet we've had to say no to a number of snacks. Mostly cookies. They get snacks that are processed on the same equipment or facility as peanuts or tree nuts. To me that's not peanut free, but to them it is.

I'm not asking them to change their policy, but did ask about it. The answer I got bothers me. I was told that it's just a disclaimer and that if they had to find snacks that didn't have this warning, the kids wouldn't have anything to eat. Um so why is there a huge bag of snacks for my kid in his classroom? There are tons of things for him to eat that are safe.

While it's true some companies put it on their products as a disclaimer, others don't. Again I'm not asking for a change. I just think they need to revise their peanut free statement. It creates a false sense of security. I know every parent has to make the choice of what is safe and not safe for their food allergic child. In our family shared equipment or facilities are not acceptable. He is still too young for us to take that chance especially when not with us. For other families theses things are ok. I'm not judging at all. It's each families choice.

Next month there are 7 birthdays in his class. I'm going to bake a batch of cupcakes and freeze them. This way I'm prepared!

What is a Peanut Free School?

First day of School!

The first day of School was a great success! We are really happy with the school, and his teacher. The snack was safe! We followed our food plan, and so did the teacher. I felt very comfortable leaving him in her care. I even brought a variety of snacks for the teacher to keep in her closet "just" in case.

We went over all his meds with the Director, and she asked some good questions. I love when people ask questions! I have to say I really like how they make me feel. I think we are very lucky this year.

There were no tears for mom, dad, or the little man. We are so proud of him. We are off to a good start for the school year! He is already asking to go back!

First day of School!

New Addition!

So yes I've been totally neglecting my blog. I do apologize, but I have a good reason. As mentioned in past posts, I was preggers. In my last month I was not a happy camper. Being pregnant in August is no fun especially when you have a crazy toddler running wild! So I decided to spare you all complaining I would have done if I actually sat down to write.

Well after a quick and crazy labor of only 2 hours and 45 minutes from start to finish, Cormac became a big brother last month to baby Kieran! He is doing well with him. Not so much with mom and dad. He's decided to stop listening for the most part. Most of it is the fun terrible 2's and 3's, but some has to do with baby brother. So we are adjusting as best we can. We've gotten a lot of help from my mom. Thank God for Grandma's!

Big brother starts preschool next week! I can't believe it. We are really lucky that his teacher totally gets the food allergy world. Her teenage daughter actually has food allergies so she knows what to do in an emergency, and knows what is at stake (I wonder if she babysits). That makes me feel so much better. The school itself is great about it too. They have gone out of their way to make me feel comfortable with sending him there. They also don't make me feel like a crazy over protective parent.

We have a food plan set up and I am happy with it. When we drop him off we have to approve the snack before we leave. If it's a no, she will give him a safe snack that I supplied already that she will keep in her closet. They are also going to let me keep 2 cupcakes in the freezer for the unexpected birthday. Otherwise I will get notice of parties and such. Two parents have already asked me about his allergies with concern for him. That was very nice too.

Fingers crossed things go well next week and the rest of the year. Diving into the school thing for the 1st time for an allergy parent is scary, but we have to do it at some point. I'm just glad we have an understanding teacher and director to work with.

New Addition!

Start Planning for the School Year & 504 Plans!

So far summer has been pretty uneventful this year. I'm 8 months pregnant and not enjoying the heat. I feel bad that my little guy isn't getting to do much this summer. Momma just can't stand the heat!

I know this sounds crazy, but summer is half way done! For those of you sending your kids off to school in the fall, it's time to get your 504 plan in place soon. FAAN has a good link explaining what the 504 plan is, and how to go about getting it in place. Basically, if your child suffers from a life threaten food allergy the government considers this as a hidden disability. The 504 plan is available under the federal civil rights laws, Section 504 of the Rehabilitation Act of 1973. It is there to help you keep you child safe and set up accommodations with your public institution.

There also may be local resources available to help you with your 504, or written management plan. For instance, there is a nonprofit organization called Putnam and Westchester Living Centers here in NY. They provide services to parents with children with special needs (which includes life threatening food allergies). They have offered to come and do a workshop on 504 plans for the Food Allergy Families of Rockland support group I have co founded. I hope to get this set up soon as baby may be here soon, as well as the school year starting in about 6 to 8 weeks. Best of all their services are free of charge.

As Cormac isn't starting kindergarten for quite some time, I don't have any personal experience with setting up a 504 plan. In the time being, I am anxious to learn as much as I can. He will be attending preschool in the fall, and since it is private they do not have to do a 504 plan. However, I've already spoken to them about his food allergies, and are set to meet before school starts to set up his accommodations and procedures and to meet with his teacher.

My advise is to start looking into what you need to do to keep your kiddo safe in school now. You may not be able to meet with the school just yet, but get yourself on their schedule before school starts. Talk with your Dr. about what they feel is the best plan of action for the upcoming school year. Have all your ducks in a row so you are prepared to do what you have to. The more information you have on what they have to and not have to do will be your best weapon.

If you have any experience with this, please feel free to comment here or on the No Nuts For My Peanut facebook page. I'm sure there are plenty of people beside me who would like to hear what your expediences are.

Start Planning for the School Year & 504 Plans!