Asthma or Anxiety?

'Mom, I can't breathe.'  'Mom, it's hard for me to breathe.'  'Mom, I'm not kidding.'  This is what I heard for 3 hours Friday morning.  Nick was in school, trying to stay in class, but went to see the nurse 4 times. Yes, 4 times in 3 hours. Nick is asthmatic so this is not unusual.  What is unusual is there were none of the normal triggers present (dramatic changes in the weather, illness).   On the 4th visit, I called the peds and got an appointment later in the day and sent him back to class.

At lunch time, I met him at the cafeteria.  He was uncomfortable with his table.  The first day of lunch he had a peanut-free table, but was to share the table with another class.  He was worried the other students would have peanut butter.  He shared this within in minutes of getting home.  I immediately sent an email to the teacher and principal and asked to meet to correct this.  Within minutes, I had a response from the principal (our school is pretty amazing when dealing with his food allergy).  His table will be changed.  I met Nick at the cafeteria.  He now has a table that is strictly for his class and is peanut-free.  It is moved away from the other tables to eliminate the risk of contact with peanut products (Nick is contact allergic).  As soon as the table situation was handled, Nick became his outgoing self again. I watched him interact with peers and advocate for himself telling each peer that they were welcome to sit with him if they didn't have peanut butter.

After lunch, it was off to the doctor's office.  He hadn't complained of trouble breathing since lunch, but I didn't want to take any chances.  ***Not-so-much Mom of the Year Moment*** I once made him wait to go to the doctor because I thought he was just trying to get out of school when in fact he had pneumonia***  Needless to say, I don't wait anymore.  He was given a clean bill of health....

Hmmm.... we talked on the way home about feelings of nervousness and difficulty breathing and how they kind  of feel the same.  He finally told me he was just feeling really, really nervous about his lunch table.  Since our bullying incident in May, Nick has had a greater awareness of his food allergy, but apparently along with the awareness has come anxiety.

We are now in the process of trying to identify a professional to help him with his anxiety about his food allergy and how to tell if it's anxiety or asthma.  Just one more step in this journey.

First Day of School... Hoping it ends this way too!

bully. Update

This update is looong over due and for that apologize.  Emotionally, I haven't been able to process it all and then life just got busy with summer.  So here's an update from the bullying incident at school.

• At Nick's request, his peanut-free table was moved further away from the other tables and closest to the cafeteria monitor's desk.
• The incident was treated as a life-threatening incident.  The child was given a day of in-school suspension. Code of conduct calls for 3 days of out-of-school suspension, but given the age and that if the child was home they would likely be watching tv, a day staring at walls seemed more appropriate. 
• Nick's 504 plan was adapted so he could carry and self-administer his epi-pen and asthma medicine.  Everyone was very accommodating and let me decide what would be best. The pediatrician doesn't usually write self-carry scripts (NY is the only state that doesn't have a self-carry law for epinephrine) for 8 year olds, but felt he was mature enough to handle this.  
• This is the coolest thing of all (of course, I'm probably completely biased). Watch this video.....

 Ironically, this video came out near the time of the incident.  The first time I saw it, I cried.  Ok... I cry every time I watch. The little boy gets me every.time. Could this hit any closer to home? I showed this to Nick and asked him what he thought.  His response,'That's exactly how I feel.'  <insert silent manic here>  Oh my.... he doesn't feel safe at school.  I let him lead the way by prompting him with questions.  Here's what he told me... 'Mom, kids don't get that peanuts are like a loaded gun to me.  They can kill me. (by the way, this is not the cool part of it) I think my friends should see this.'  

 From that statement, we made an action plan and presented it to the principal.  In June, Nick showed 75 of his classmates (his grade level) the video and answered questions for 20 minutes. I can't tell you how proud I am of him.  In those 20 minutes, his confidence grew and his friend's gained a greater appreciation of his allergy.  I was amazed at how insightful and thoughtful 8 year olds are. Nick has asked to talk to the WHOLE school during their anti-bullying assembly at the beginning of the year.   

So... we start school in 4 weeks.  I'm on heightened alert all the time, especially since the death of 13 year old last week after she took one bite from a rice krispie treat.  We've met with the new teacher.  I've been more assertive with my requests about a peanut free classroom and reminders being sent home with holiday party information.  I've signed up for webinars about food allergies and bullying.  I'm on a small mission (as much as time allows) to find out why NY doesn't have a self carry law. And Nick... well, he's pretty resilient.  He just keeps leading the life of an 8 year old boy.  

bully.

I've started this post so many times and deleted it just as many.  I'm not really sure where to begin or where to end.  I thought I would have a few years before I would ever have to write about this.  But not so. I guess the easiest way is to start from the beginning. To process it from the beginning. And maybe, just maybe, I'll find my way to the end.

Friday I received a call from the school. My heart always skips a beat when that number shows up.
Me: Hello? (In my meekest, most uncertain voice. The one I always answer with when it's the school calling)
Principal: Hi Heather. It's Tiffany.  First, I just want you to know I have the situation under control.
Me: Ummm. (A variety of things are running through my mind.  They never say that. They always say "Don't    worry. Nothing is wrong')
Principal: We had situation in the cafeteria.  A boy tried to wipe peanut butter on your son's face.  He is fine. He wasn't touched.  I'm handling the situation now, but wanted you to know.

I'm not really sure what was said after that.  I tuned it out.  One of my biggest fears has become reality.  My son was bullied.  An act, a ridiculous, thoughtless act, by a 7 year old put my son's life at risk.  I'm absolutely furious at everyone, at no one.  I want to find out who the child is, talk (maybe not so quietly with the parents) and demand why! Why would you think this was funny? I was already headed to the school for an assembly. Timing couldn't have been better.

I saw my son at school at the assembly.  I wanted to cry when I saw that he was okay. Laughing with friends. He didn't mention the incident.  Good.  It isn't affecting his day. I scoped out all the kids in his class wondering who the little bully was.  Talk about checking your emotions.   I met with the family social worker at school briefly.  I needed to time to process it before I met with the principal.  I had to find the middle of the road between hysterical mom and accommodating mom.  I needed time to tuck the tears away for later that day (maybe over a glass or two of wine).

Here's what I know.  Nick was at his peanut free table when this boy purposely took his fingers, wiped them in his packet of peanut butter he brought for lunch, walked over to Nick and waved them in his face trying to touch him.  Nick immediately backed away and told the monitor.  Kudos to him... My preaching (nagging) has paid off.

The principal was very sincere and understanding.  They are treating this has a bullying/life threatening/harassment act.  The boy will be suspended.  Is this enough? I don't know.  Can I send Nick school without panicking? I don't know.  She asks,'What more do you want me to do?' I Don't Know!  I tell her I need the weekend to think, to process.  I need to talk with Nick and see what he wants.  We'll meet again on Monday.  She assures me she will do whatever needs to be done so Nick feels safe at school.

Here's what I'm feeling now:
Furious~ I'm angry that I even have to deal with this. I'm angry that there are mean people in the world.  I'm angry that unless you're an allergy mom or 'have a child with some sort of special needs' mom... you just don't get it.  You don't get that I live my life in the extreme, the worst case scenario.  You say I'm over protective, maybe a little neurotic.  I'm angry that now I will be a little more neurotic.  I'm angry that I will now have to find the middle road between being hysterical mom and accommodating mom.

Sad~ Sad that Nick will always have fear of going to school now.  Sad that a 7 year old felt the need to be funny and just 'didn't get it.' Sad that Nick will always be singled out because of his allergy.  Sad that I will always worry that Nick won't come home.

Motivated~ Motivated to make a change.  Motivated to help others understand the severity of food allergies.    Motivated to help incorporate food allergies (along with diabetes, etc) more into anti-bullying campaigns, teacher orientations, student orientations.

Overwhelmed~ Overwhelmed with all of it, with all the emotions and all the worry.

Here's my plan (for now) 
First, we praised Nick for doing the right thing and telling a teacher.  I asked Nick how he felt about it.  He says he's 'kind of' afraid to go to school now (my heart just broke a little more).  Reassuring him that it's mine, his dad's and the schools job to make sure he's safe, I asked what we could do.  He wants the student to be moved to a table far away from him and he wants the tables surrounding his to be moved further away because other kids eating peanuts make him nervous.  Pretty good plan for an 8 year old, don't you think?  (I was going to ask the child be removed from Nick's class and not be able to eat in the lunch room, possibly pay a visit to his home. I'm kidding about the last one. I think I'll stick with his very appropriate 8 year old version instead. You can learn a lot from children :)
I'll request these for him and also request that he be able to carry his medicine with him at all times.  I can't control everyone or even the environment, but I can make sure he has quick access to medicine should he need it.  I'll make a bigger deal about his allergy. If I make a bigger deal out of his allergy, maybe they will understand they seriousness of his allergy.

I'm not sure where to end this or if there will be an end in this.  Perhaps it's the beginning of bigger, better things for us and peanut allergy awareness.  Or perhaps it's the beginning of the end of my sanity.

Jitters

I'm not sure what is worse the anticipation for eye appointments or the allergist appointments.  I get the pre-appointment jitters for the eye appointments because I don't know what they are going to tell me.  Is the eye still the same? Are her pressures good?  Will we increase or decrease patching time?  Anything could change.  For the allergist appointments, I get the pre-appointment jitters, because NOTHING is going to change. He will ALWAYS be severely allergic to peanuts and he will ALWAYS have asthma.  Allergist appointments are reality in full color. They are the appointments that tell me no matter what I do, I can't make this better or make it go away.
Overall, the appointment went well.  Peanut allergy is the same and we are to continue avoidance of peanuts and all nuts when we are in public.
Asthma is hit or miss.  This beautiful WNY weather is terrible for is asthma.  We are currently using both his  maintenance inhaler and his rescue inhaler.  This will likely continue until June.  At least I now know what are likely triggers for him and what helps.  We will continue with our current treatment and follow up in a year.
Proud mom moment at the visit:  The allergist told Nick he seemed very mature for his age regarding his allergy and asthma.  It's nice to hear.  It's not that I take credit for it,. Nick has had this since he was 8 months old so he knows no other way.   It just reinforces that we are doing something right with educating and trying to teach him responsibility.
While the appointment went well, real life living with a peanut allergy gets harder for me.  We try to do 'normal' things, but as he gets older, it gets harder.  Easter Sunday we decided to stay for brunch at church.  BIG mistake.  The brunch was great, but Nick couldn't eat anything, but fruit.  And at 8, he's just not that satisfied with fruit for breakfast.  There were peanuts/nuts on almost everything and the food that didn't have nuts were sitting next nut filled food.  We graciously at our fruit, excused ourselves and headed off to McDonalds.  So sometimes trying to do normal things, just doesn't work.  I'll keep practicing and by the time he graduates, it will all be normal :)

The EYE has taught me that accessorizing is cool (even for boys). Here's a shout out to two of our favorite 'accessories':

A pencil case from PBTeen (I love that store).  Seriously, this case only cost $3.99 (personalization is $7) and can hold 2 epi-pens, 2 inhalers, a spacer, 4 doses of single dose Benadryl and 4 packets of handi-wipes. It goes where ever we go and can clip onto bags.

Survival straps is our latest Medical ID purchase.  Some argue that it looks too fashionable and can't easily be identified as a Medical Alert bracelet.  I say, whatever he'll wear consistently is much better than the bracelet laying on his dresser.  Survival straps lets you  custom design the bracelet. So, of course, his bracelet is the color of our monster truck.  And the price isn't too bad.

Photo courtesy of Survival Straps.com 

8 months to 8 years

Today, we celebrate this little man's 8th birthday! 

I guess he's not so little anymore. Even though I want him to be. I even bought a candle for his cake. It was a   '6'.  I guess a mom can dream.

It really is a miracle that we have made it 8 years without major mishaps.  Not because he's a boy and a klutz  and does crazy boy things, especially with his cousins. But... because he is allergic to peanuts and has asthma. 

When he was 8 months, I almost killed him.  Looking back it is so much worse than the actual situation. Being ignorant was probably a blessing at the time.  I gave him a bite of peanut butter pie.  He instantly started screaming.  My thought...Hmmm, he must want some yogurt instead. Nope, still crying.  It was then that I noticed the hives around his mouth.  I faintly remembered reading something in the multiple 'how to be a totally awesome mom' books I had scoured over the past year about a peanut reaction.  Ok, so Grandma runs to the store for some Benadryl.  Because really, who has Bendaryl in the house for an 8 month old.  Give it to him and it works.  Yay for me and him!

Off to the pediatrician for a well child visit.  I mention our little mishap and the doctor's eyes became huge. Ummm, okay, so maybe I'm not such an awesome mom.  Her suggestion is to monitor and avoid peanuts.  No big deal, he's like 9 months old, I control everything!  

We are careful and we avoid and I sneak Reeses Peanut Butter Cups when he's napping and then brush my teeth and wash  my hands. Yes, I know, a total closet eater.  

Next reaction was purely accidental.  I filled a bird feeder with peanut butter.  The birds love it.  Nick loved to watch the birds.  I carefully take the spoon in and wash it. Put the peanut butter in the top cupboard where he can't reach it.  Play a little outside and he starts to get spots on his back which I thought was a bug bite and then they spread all over his body.  Hello totally awesome mom, they are hives NOT bug bites.  Another dose of Benadryl, another save!  

Another well child visit and we are pretty certain he's allergic to peanuts.  We do a RAST (a bloodwork test that tests the IgE levels).  His levels are high. He's allergic.  Here's your script for an epi-pen, benadryl, note to avoid peanuts and carry medicine....blah, blah, blah.  Okay, so maybe it didn't go quite like that, but that's what I heard.

Here's what I learned from my own research:  

• it is one of the deadliest allergies
• peanuts are in just about everything... may contain traces of, processed in a facility...
• gatherings such as birthday parties, family picnics will require you to take your own food
• of course he's more likely to have because he has horrible eczema
• be aware of public places... peanut butter can be anyplace

Cue- Totally Freak out Mommy..... This is so not in any manual or mommy the greatest book

Here's what I learned from living in it- You will have to navigate this crazy journey on your own. There  is no one to ask how this has affected them and what works and what doesn't. If your child lives through the day, you rock.  If you have a reaction at some point, you suck. 

One of many necklaces

So for the past eight years, we have survived this allergy thing.  We have lots of medicine.  An epi-pen in the house, one at school, one in his backpack (shhh... don't tell the school... it's way too much paperwork if they know) one at the sitters.  We keep track of them because unlike other meds once the pens expire, they are no good.  Do not use once they expire, they probably won't work. I am the mom at the pharmacy having them check dates and refuse to take them if they don't expire at least a year from the purchase date.  Hello... they cost $325 a pop (thank goodness for insurance).  We carry lots of Benadryl (this comes in handy for lots of other kids too :)) And of course we have inhalers.  EMTs have nothing on our medicine cabinet.  Oh yeah and clorox wipes.... I'm not a germ freak.... I have 3 kids. I'm a "I don't trust that you wiped your toddler's hand after they ate out of the peanut butter jar or had their 3rd peanut butter and jelly sandwich and now wiped it all over the shopping cart' freak.  

Rubber bracelets are cool at this age

I educate, but try to overbear.  I may be lax in my approach, but here's my thought.  I believe Nick needs to live in the real world and despite my mom instinct to protect and not let him grow up, he will.  I cannot follow him around. I educate him. I show him how to advocate for himself.  He knows no other way.  He is unlikely to eat at celebrations because food isn't safe.  It's his choice and I don't try to convince him otherwise. I send safe snacks/food everywhere he goes, but I never force him to eat it.  I show him how to read labels and how to ask people and not be afraid.  I have shown him and his sisters how to use epi-pens.  Keep it as normal as possible is our motto.  It still SUCKS though! Every day he knows he's different. He can't eat at any table in the cafeteria as a precaution.  He can't eat birthday snacks or holiday cookies or cake or most candy.  He has never complained... He rocks.  He may be sad because he can't join in, but never once has he asked 'why me ?'  He has some awesome friends that make sure he has someone to eat with everyday.  And some awesome friends whose moms are awesome too. They call and ask what is safe for him. THANKS to AWESOME MOMS!   And thanks to his AWESOME SISTERS... they totally advocate for him.  

This makes me chuckle

How about outgrowing this?  20% of kiddos do.  He won't. He has eczema, asthma and allergy...the triple threat.  We have done 3 blood tests in 8 years and the levels are off the chart... over 100. I forget what normal level is but it is single digits.  But as allergic as he is to peanuts, we have yet to use the epi-pen (knock on wood)!  

Every day I send him out the door and say a little prayer that he will live a normal life and he still return home safely.  I pray the kids will be nice to him and not tease, not bully (very real worries).  I pray that I will always have the strength to make his peanut allergy as normal as possible and not be a complete Mama Bear.  And I pray I will always keep perspective... this could be so much worse.  

Halloween Conquered

A week ago, I hated Halloween and what it represented for us.  A time of fun, but not carefree fun, a day of endless worrying.  Essentially, in the end, I saw it as another loss.  But you know, my kids taught me another lesson: It's not a loss, it's our way of life. We can choose how to view it.  This year, we not only survived Halloween, we conquered Halloween!

A werewolf, a zebra and a princess... What more could a mom want

Trick or Treat! What fun words.  Running from house to house, collecting candy.  Comparing who has more,  who has better candy.  Kicking up the leaves, playing in the rain.  We made it around the whole block... a first. No tears, no fights and no use of an Epi-pen... a MIRACLE!

My favorite memory of the night....
Conversation between the oldest two:
Nick & Delaney: Trick or Treat
Nice Guy:  Happy Halloween (puts treats in their bags, which happen to be peanut butter cups)
Delaney: Ummm. Just so you know, he can't eat anything with peanuts cuz he's allergic.  And I don't take anything with peanuts cuz he's allergic (diva-ish hand wave while she says this)
Nice Guy: Oh, thanks for telling me (takes back the candy and gives them Smarties)
As they are walking away, I hear Nick say, ' Delaney, don't tell people that.  The more candy with peanuts I get the bigger the prize I will get.'
He had a good theory, but it wasn't going to happen.  It didn't matter, Delaney told anybody who listen to her.
Candy compared, sorted and separated.  Even the girls were happy to contribute to the Candy Witch pile.   Nick wrote the following letter to the Candy Witch:

Sooo....  I was so touched by his letter that I wanted to share and do something bigger.  We have now started a Candy Collection at our elementary school and letter writing campaign to soldiers.  Really, what better time to do it than now, in November.  Honestly, if we only get a few letters and  a little bit of candy, we'll touch the life of a few soldiers and it's a lesson for my kids (and a bigger lesson for me).

Halloween will no longer be dreaded in our house.  It's now our holiday to give back!  And it only took my 8 year old to show me this.  In 2012, Halloween was Conquered!

Surviving Halloween

Halloween... In our house, it's not about enjoying it, it's about surviving it. And that makes me kind of mad and kind of sad. Sad that it's not a carefree holiday for us and my son feels left out and realizes he is 'different'. And mad I'm that we even have to deal with this.  You see, my oldest has a peanut allergy. I'd tell you it's a severe allergy, but any peanut allergy is severe.

Surviving Halloween isn't something new. We actually don't know how to do this any other way. We've been doing this for 7 years, but I thought it would get easier when in reality it gets harder each year.  He's growing up and knows he's different and often feels left out. Classroom parties, trick or treating, friend's party.

When he was younger, we would trade candy he couldn't eat with 'safe' candy. One year, we paid him for the candy he couldn't eat. Both worked.... Except for my hips. They screamed and begged for a different approach.  Two years ago, we invented the 'Candy Witch.' The Candy Witch was a brainstorm developed on a Disney trip. We knew most candy was off limits and we also knew we didn't want take it home with us.  The idea... The kids trick and treat and save a few pieces of 'safe' candy and the rest is left by the door for the Candy Witch. The Candy Witch zooms in while they're asleep and swaps the candy for a prize. The kids love this!  (And my hips are smiling too!) AND.... I'm not ashamed to admit that I've used the Candy Witch like I would Santa Claus... That's how much the kids live the idea!

The Candy Witch, however, doesn't work for classroom parties.  Nick has a fabulous teacher who doesn't allow any peanut products in the classroom. BUT.... There's always a but.... I worry about cross contamination. So he's not allowed to take homemade food or donuts or candy that may contain peanuts. I tried filling up a goody bag of 'stuff' and surprised him with it at school hoping to make him feel special not just different. It went over okay, but he then decided he felt bad for his classmates and wanted me to make one for everyone.  So this year, my plan is to check all the food that comes in the class (I do this for every party) for potential safe food, send in goody bags for all is classmates. These contain some food items, but mostly non-food trinkets.  And pray... Pray for a day filled with laughter and fun. Pray that he feels including in the celebration.

And while I pray, I will reconcile my sadness and madness with reality. This is our reality. We know no other way.  I will carry more medicine than most ambulances have and diligently check candy. I will laugh with my kids and enjoy these moments while they are little.  If my reality is teaching my son how to survive Halloween so eventually he can enjoy Halloween, then not only will we survive Halloween, we will own Halloween.