Walk a Mile in my shoes....

WARNING ranting ahead! I need to start by saying,  if your child does not have a life threatening medical condition and you are NOT a Dr., please, plleeaase-keep your "advice" and helpful "comments" to yourself.  This morning I was given a lecture by a mother in Alexa's class.  I left the school wondering what makes some people think they can offer up unsolicited advice/comments on other people's lives when they have no idea of the realities they face every day.  This morning, I was speaking to a friend (who has a child in the same class) about Alexa's recent behavior at home.  She's been well behaved at school but at home she has been angry, unkind and down right nasty towards me and her baby brother.  As I was speaking with my friend, I said "She seems to be taking it out on me".  A woman behind me piped up and said "I wouldn't call it 'taking it out' on you, she's just exhausted and adjusting to kindergarten." ok, harmless enough and probably true.  She then went on about how I need to provide Alexa with a safe outlet to vent her feelings and gave specific ideas.  I wanted to ask her if she was a psychologist but instead I nodded, smiled and thanked her for her advice.  Then I said,  "I've been wondering if she's feeling anxious about being in a school where they serve peanut butter.  This is her first time dealing with it and I'm wondering if that may have something to do with it."  She immediately said "Whatever anxiety she's experience is coming from you and it's being transferred to her." WOW!  Now, I'm not saying this woman is wrong.  Actually, she probably has a valid point.  I do need to be more careful about showing my anxiety to Alexa but what bothers me most about her comment is that other parents often label parents of food allergic children as "anxious" or "overprotective".  I believe most parents of a child with a life threatening medical condition have some level of anxiety about it, whether it's food allergies, seizures, diabetes or some other condition.  It's only natural and frankly, it's to be expected!  I wish that parents would support each other more.  I little understanding and compassion can go a LONG way in this world!

Thought and feelings about this article?

This article makes me frustrated and concerned for the safety and emotional well being of my daughter.  It also makes me a little angry.  Waving a peanut butter granola bar at a child who is deathly allergic reminds me of a child waving a weapon at another child.  This type of bullying should be treated very seriously.  Alexa has been struggling with her emotions lately, now I'm wondering if being at a school where they serve peanut butter during lunch is causing her anxiety.  What are your thoughts? Comment below please!
http://www.cnn.com/2010/HEALTH/09/28/food.allergy.bullying/index.html?hpt=Sbin

I'm officially renaming today- "Allergy STRESS Monday".....

So it's Monday.  Enough said.  But it's also raining and my son is home sick from school.  My fabulous (and there's no sarcasm here) husband offered to drop Alexa off at school today.  This is normally VERY helpful. Today, however, is different.  Here's why, last Wed (when he picked her up from school) he forgot her lunch box.  It was left in the lunch bin in the back of the class because, as usual, my daughter forgot to get it.  This is the lunch box that has a big sign on it stating "I'm allergic-don't feed me".  We'll call this the "allergy lunchbox".  Since I didn't have her "allergy lunch box", I packed her lunch in a plain blue lunchbox and explained to hubby he should transfer today's lunch into the "allergy lunch box" and put the old lunch in the blue lunchbox for me to bring home when I picked her up.  Still with me?  Ok, so THEN I tell him he needs to stop at the nurse and drop off her asthma spacer (that tube like thingy they use to take asthma meds) in case Alexa needs medication during the day.  Since things seemed to be getting complicated and he was getting a bit wide eyed,  I wrote it all down for him.  All set! right? well of course not silly...it's Monday!

A few hours later, as I'm leaving the Dr.s office with my son, hubby calls and says "by the way, I couldn't find her old lunch bag so I hung her lunch in her cubby"  PANIC! yes PANIC!  Alexa's class eats at 11:30.  It was 11:25.  Since lunch bags go in a big bin in the back of the room her OLD lunch (with the half eaten food from WEDNESDAY) is in the bin and her new lunch is in her cubby.  I have NO idea if Alexa is going to figure this out on her own and alert the teacher or if she is going to sit down to lunch and say "I have no food".  When a child at school does not have lunch-they feed them from the hot lunch.  Alexa can not safely eat anything at school-so I had a moment of panic, thinking "are they going to figure this out?".   I immediately asked hubby to call the school and explain the situation to them since the kids were literally just sitting down to eat. ( I have to add thank God for cell phones!) By 11:45 a.m.  I had not heard if all was well.  I called hubby and he stated "I'm not sure if they will get it to her-I told the woman what happened and she said 'don't worry they'll feed her'  I told her Alexa can't eat at school due to her allergies and she said 'ok, I'll check' and hung up."  He sounded a bit panicked too.  So I called the school back.  It took 10 minutes to get a hold of someone but I finally got a call saying she did indeed have the correct lunch.  phew! Note to self and lesson learned-"do NOT forget the 'allergy lunchbox' at school!" or make a second or something....oy.

Ready for part 2?  The spacer/asthma medication he had to drop off to the nurse?  Apparently, on the 504 Form, the Dr. forgot to check what type of asthma medication Alexa is to receive.  So, even if Alexa needs asthma medication, the nurse can not give it to her.  The nurse faxed the form to the Dr. but thee is some kind of fax issue so as the day chugs on Alexa is still out of luck.  The nurse called me at 12:30 to see if I was in the school so I could just grab the form but I'm home with the sick one.  Stupid Mondays....that issue still is not resolved but hopefully the Dr. and nurse are working it out AND perhaps by some miracle Alexa will get through the day without needing additional medication.  Can I go back to bed now? This day has exhausted me and it's only 2 pm!

Relief and guilt over my "normal" child...

My 2 year old son, Nicholas has been blessed enough to escape the food allergies his sister has.  Why? No one knows.  As his Mom I am relieved but also I have tremendous guilt.  Guilt? Yes, guilt! Seeing him healthy makes me wonder if something I did during my daughter's pregnancy caused her condition.  Rationally, I know this is not true but as a Mom and the person who grew her inside me I'll always wonder if it was something I did or did not do.  My son just started preschool.  When I send him off to school, or off with another person, I don't have to remember his Epi Pens or pack him a lunch or snack.  I just kiss him, wish him well and send him on his way.  I feels strange, like I'm missing something or neglecting him somehow.  Does that sound strange?  Alexa has always required that extra attention:  Did I pack her Epi Pens? Does she have snack? Does she have lunch? Who's picking her up? Do they know how to use an Epi Pen. Do they know where we keep them? etc, etc.  Not so with Nick.  My husband dropped him off at school today.  There was no "don't forget his lunch", "do you have the Epi Pens?" "Remember to check snack" added on to his exit, just a kiss and hug goodbye.  It is a relief not to worry about my son but I actually feel guilty about it, as if somehow I'm cheating him.  Strange? Yes,  but it's honest.  I wonder if other allergy Mom's who have a "normal" child feel this way?

Get to know your school nurse!

I stopped by the school nurse's office yesterday.  I thought it would be a quick hello and information exchange but she spent time talking with me, sharing information and specifically asked how I wanted Alexa's symptoms handled should she have a reaction at school.  I'm so glad that a casual "pop in" had such positive results!  I also got the inside scoop on the kindergartner who ate a peanut butter sandwich at lunch, forgetting he was allergic!  (my worst nightmare!)  It was reassuring to hear a first hand account of what transpired and how she handled it.  As a result, I feel more confident than I did a week ago.  My advice-get to know your nurse! She(or he) is going to be the one treating your child if a reaction occurs.  I'm happy to know that Alexa's nurse is caring, careful and thoughtful.  She aires on the side of caution and will not overlook potentially troubling symptoms.  She even confided in me that she lost a child who was 2 1/2 due to choking.  I was heartsick for her but I know that having lost her own child, she will treat ours with love, care and a watchful eye, for this I am grateful.

Almost through the 1st full week of lunch @ school!

TGIF! and I mean- THANK GOD! We made it through the first week of Alexa eating at a big new school where they serve peanut butter.  Our first time experiencing it and she did great-so I am relieved.  However, yesterday a Mom at school told me an other allergic child went in the food line and somehow ended up with a Peanut butter and Jelly sandwich. He took a bite, raised his hand and said "I forgot I'm allergic." Keep in mind -this is second hand and I was told this story in the hallway, in passing at pick up time, but according to her, EMS was called and luckily the child did not have a life threatening reaction.  This raises all kinds of questions for me but NO ONE else has mentioned it at school and Alexa was clueless (thank God-again!).   So I'm on the fence as to whether or not to even bring it up.  I'm reluctant to pass along information from another Mom (grapevine and all that) but curious to know what happened? How was the child? how did the school handle it? What did they learn from the experience? Anyone out there have any thoughts about this? Anyone think I should ask the school for more information?

SafetyTats-tattoos arrived-quick review.

We applied Alexa's Food Allergy SafetyTat last night.  My initial reaction is that they are brightly colored and stand out-Great!  I don't really understand why they are so shiny though and this  morning it looked a bit dried out and cracking.  Other play tattoos the kids have applied are more matte and have lasted weeks without looking dry-even with washing.  So-the jury is still out on this one.  I'm not sure yet if they are worth the money but I'll let you know in a few days.  Please feel free to comment or add feedback if you have used them with success.  Here are the photos:

First full day of Kindergarten with peanut butter served in the cafeteria!

I think the title of this post says it all! Yes, today was Alexa's first full day of kindergarten and that includes her eating lunch in the cafeteria which is shared by the entire school (up to 12th grade).  They serve peanut butter sandwiches to the kids who want them and the 1st graders eat before her class.  SO....the big questions that are probably on your mind...1) Was I nervous today? Yes!  2.) Am I still nervous? Well, lunch was over almost 2 hours ago-so that's a relief! 3.) How did I get through it? Preparation, communication, and a few prayers! After our incident last Wednesday (when Alexa was given an unapproved, but thankfully safe snack) I arrived today ready to educate, communicate, and partner with the school to ensure her safety.  I arrived early (before the classroom was opened) and brought a bag full of safe snacks, a list of safe snacks, and a big smile with a great attitude.  I greeted the teacher with a smile and was pleasantly surprised to see that she was also wanting to talk to me.  I explained what I had brought, we talked about how to handle snack,  I demonstrated how to use the Epi Pens (she seemed relieved that I took the time to do this!) and we agreed to make the room peanut free! yippee!  Alexa will still have to contend with peanut butter (and other allergens) in the cafeteria but at least the rest of her day should be somewhat safe!  I also introduced myself to the school nurse (again) and provided her with a zip lock bag with Epi Pens, our Allergy Action plan, and Alexa's photo.  I also introduced Alexa to Tory (the cafeteria supervisor) and the lunch lady (sorry-didn't get her name!).  I feel  confident that everyone who needs to know-has ben informed of her allergies.  One Mom also recommended that I place a notice on her lunch bag (GREAT IDEA!).   Last night I attached a note on the top which has her name, a "no peanuts" sign and a list of all her allergies.  If she doesn't stand out after that I'll be attaching a neon sign to her head!   Last but not least, I ordered some SafetyTats which she will wear for the first month or so of school.  If you have not heard of them check out their website (no I'm not affiliated in any way-just came across them and liked the idea) safetytat.com . They make temporary tattoos for various applications and labels as well.

I realize some allergy Mom's may not like the idea of placing a temporary tattoo on their child to draw attention to their allergies but it gives me comfort. having her allergies highlighted.  I don't feel the need to hide them or try to make her "blend in".   As she gets older, I'm SURE she'll tell me "Mooom, please everyone's looking!" Her new school is huge with hundreds of children and her little Medic Alert bracelet could easily be overlooked by a teacher, staff member, or volunteer who is watching her.  The tattoo stands out and will attract the attention of an adult who will then keep a better eye on her until they get to know her better.  Most likely I will only use these for the first month or so of school.  I will post a photo of her with her tattoo once they arrive (hopefully today!).  So, 15 minutes to go and so far so good! Let's hope we have a fun, productive, safe school year!!

1st day of Kindergarten with food allergies.

Today was Alexa's first day of Kindergarten. I packed her a lunch, brought her Epi-Pens, 504 plan, Allergy action plan, and Benadryl. She was so excited. It was a real pleasure to see her so happy. But I was filled with apprehension. I pulled the teacher aside (no small feat in room with 60 people!), introduced myself, explained that Alexa had multiple food allergies and showed her the Epi-Pens. The teacher barely glanced at the Allergy Action plan (which lists her allergies) and said "ok, good. Put it in her cubby". She then asked if I had talked to the parent coordinator. I explained that I had-and that I brought everything she requested and she said "ok, good. We'll post this on Monday." I asked if they would be eating in the classroom, since it was a half day, and she said "just snack". So of course, I checked the snack, approved it and told Alexa it was safe for her to eat. We were good to go and I was feeling confident! I gave her hugs and kisses and off I went until pick up time. I was relaxed and relieved. When I picked her up she was smiling and very happy. She had a great first morning and I was happy to head home knowing we had a great first day! As we walked to the subway I asked her, "What did you have for snack today? Pirate's Booty?" I fully expected her response to be "yep!" instead I heard, "No-they wouldn't let me eat it-it had soy oil in it-I had pretzels." I literally stopped in my tracks. I had NOT approved any pretzels. Or even glanced at any pretzels or seen them in the room. They could have had sesame seeds on them or been made with egg or on the same equipment as peanuts! UGH!! So I asked her again "really? pretzels? but honey, you can eat soy oil, that's ok for you and you eat Pirates Booty all the time. Why didn't you eat the Pirates Booty?" "oh" she said. "I thought they were the ones with soy." Immediately I began asking 50 questions, "ok-what kind of pretzels were they? What did they look like? Do you remember the name? Are you sure they were the same kind you eat at home? How do you know that?" Then I realized I might be freaking her out and said "Well-you seem ok-and feel fine so-we'll talk about it later and I'll talk to the teacher." After calming down and letting a little time pass, I talked to her about it again. It seems she became nervous that it may have been "veggie booty" (which contains soy) and NOT the regular Pirates Booty she eats at home so she decided not to eat it. Apparently the teachers showed her some pretzels and because they looked exactly like the ones I give her she assumed they were safe. Thank God they were. I can't begin to tell you how frustrating, upsetting and frightening this situation can be. I've since calmed down but now realize I will have to be much more vigilant and direct with the school. I hope that a good conversation on Monday and a supply of safe snacks will prevent this from happening again and I thank God my baby has a guardian angel on her shoulder and that she did not get sick today.

Pictures of her new placemats

Here's a photo of the placemats we made for her new school. Alexa will eat off of these at the cafeteria to be sure she does not encounter any of her allergens while eating.

Kindergarten starts next week!

Alexa starts Kindergarten next week. We have the usual excitement and anxieties that all families have when their oldest child starts their first year of school, but we (or perhaps I should say "I") also have the dread that comes with sending our food allergic child to a school which is NOT nut "sensitive". At lunch, children in her class could be sitting next to her eating peanut butter, nuts, eggs, sesame, soy, chick peas and other things she is allergic to. While my husband does not seem the least bit phased by this (just my opinion) I waiver between excited, confident, trusting of the school and utter fear that no one will be looking out for my baby girl. I find this very frustrating since I've gained such confidence in the past couple of years- I have allowed her on play dates without my supervision, let her eat at a restaurant for the first time since she was 2 and added multiple new foods to her diet. But putting all my trust in a group of people I don't really know is terrifying. I am taking precautions. For example, I've educating Alexa on how to stay safe (we made a special place mat she will take with her to eat on and had many conversations about sharing food, drinks, etc.), I've communicated with her teachers, the parent liaison, the school nurse, and other parents, but I don't think I will ever feel 100% confident. I'd be satisfied with 90% confident. On the other hand, the current prevalence of food allergies in young children means other parents of food allergic children have paved the way for us- and for that I am extremely grateful. It means I do not need to educate the school or her teachers about the seriousness food allergies. I'll keep you updated on our journey and how she does. I will also post photos of the homemade placemat she will take to school with her. Feel free to use the idea and enjoy the last days of summer!!