The Big Reveal

Today's the big reveal.

It seems absurd to suggest that idea but, I am anticipating an unveiling of a disposition. Today, I will meet the school principal, nurse, and counselor at our new school. We will discuss my son's food allergy and his asthma. I will discover their attitudes and desired approach.

I am hoping for the best. I am praying for the best.

The school nurse called me last week to request a 504 Plan meeting.

What is a 504 Plan?

The 504 Plan takes its name from Section 504 of the Rehabilitation Act of 1973. Section 504 is a civil rights law that prohibits discrimination on the basis of disability. It applies to all institutions, including public schools, which receive financial assistance from the federal government. The purpose of Section 504 as it relates to students with food allergies is to ensure that a child's education is not negatively affected by your child's food allergy.

Did you know that a severe food allergy, one that can lead to anaphylaxis, is considered a disability? Students are protected by a law so that they cannot be discriminated against on the basis of a severe food allergy or asthma (included under the "other health impairment" section). Interesting, isn't it?

My husband and I are well-informed about food allergies. And yet, we sat up last night researching 504 Plans, Emergency Care Plans, Individual Health Plans and Individual Education Plans (IEPs). The bottom line is: My son will be kept safe. Beyond that, we have to determine the reasonable provisions that need to be made for him.

Parents of food allergic kids take many approaches to protecting their kids. I've been amazed by the lack of provisions for some and surprised by the extremely strict rules for others. So many factors come into play: the severity of the food allergy (or the perceived severity), the allergist's approach to managing food allergies, and past allergic reactions and experiences.

When you consider the dissonance between adults managing food allergies (parents and doctors, alike) and the way food allergies are covered in the news, it is no wonder that the general public doesn't know what to think about food allergies.

So, the big reveal... What will the attitudes be? How will the medication be handled? What provisions will be put in place?

What's Up Doc?

The allergist makes my son nervous. We had an appointment on Wednesday. The doctor he sees is an allergy and asthma specialist. My son was consumed by a fear of "the shots" (the allergy skin tests, which seem to hurt my son tremendously when he is tested for his peanut allergy). He must have asked me 15 time between Tuesday night and the appointment if he was going to have to have "shots".

The appointment went really well. No allergy skin tests ("shots").

My son does not need to use the nebulizer regularly anymore. Basically, because of his age he can now handle using pulmacourt in his inhaler instead of having the medicine in the nebulizer. My son is thrilled. He hates "the mask" (the nebulizer) because of the time it takes. At least for the next month or so while we live in this valley (the self proclaimed grass seed capital of the world), he needs to do the inhaler treatment morning and night. It will be nice. He does his inhaler much easier (more willingly) than the nebulizer.

That's the biggest change.

The doctor also thought my son will be better off in the new climate we will be in once we move. There will be less grass in Nevada- thus, less grass pollen to aggravate his asthma. That's one bright side to Nevada.

When asked about meds, I said that we had been using claritin for seasonal allergies and it doesn't seem to be working as well as the zyrtec. The doctor said zyrtec is a much better antihistamine.

The doctor asked about my son's peanut allergy reactions. When I told him about my son's most recent contact reaction, he shook his head slightly and said hadn't outgrown the allergy. There's no doubt. So we could have another skin test in a couple of years... but really, it seems unlikely he will outgrow the allergy.

No "shots". Again, my son was thrilled.

My son's prescriptions are renewed. We are armed with a note from the doctor to take to the new school district. The doctor is going to call with a doctor recommendation for our new area.

All in all, it was a great appointment.

Now I just need to get the prescriptions filled... new epipens, new inhaler medicines, and I need to pick up some zyrtec.

Allergies and Asthma on My Mind

Allergy and Asthma Thoughts: A little of This and That

This past weekend I almost bought something for my son that had peanut warning. The allergens were written in bold letters. It said Contains: Milk and Wheat. The ingredients were above that. It looked wonderful. As I was checking out, the clerk offered that he thought he could find another non-peanut item for me. He pulled the item. It wasn't safe. It made me re-look. There in very, very small print, at the bottom of the package was a warning, "May contain peanuts". It was ridiculously small. When will we have standardized labeling? Will it ever happen?

My PA son is going to VBS this week. I couldn't help but laugh at myself this morning because my nerves were shot. I was nervous taking my son to vacation Bible school. Part of me felt like I should get a grip. Part of me felt extremely brave. All of me was thankful for a special friend that understands food allergies and made sure to work with the food, verify ingredients with me, and make sure my son was comfortable. Will new situations ever get easier on my nerves?

My oldest son is at Cub Scout camp this week. I packed him such a big lunch, I laughed to myself this morning. He ate it all. (How in the world does he bring home half his lunch during school and then eat a monster sized lunch today?) He could have eaten the lunch provided, even in addition to his lunch. He won't eat the provided lunch because it contains peanut butter sandwiches. I explained to him that he could still eat it and then come home and wash his hands. He isn't willing. PB&J was his favorite when he was 4. Now, I wonder, will he ever eat peanut butter again? I marvel at how my son's food allergy affects his siblings.

This morning I was reading Chicago Tribune article about kids with peanut allergies and asthma. My son walks up and asks if I am reading about his allergy. As he stands next to me, I hear him breathing. I notice him breathing. I ask him if his asthma is bothering him. He says yes. We get his inhaler. I ask him if his asthma bothered him yesterday. He says yes. I spent time explaining that he needs to treat his asthma when it is there or it will get worse. I wonder why he waits until his asthma gets bad before he wants to treat it. I wonder if others have trouble with this with their asthma kids. I wonder when and if he will change.

I experience times of stress and nervousness about my son's future. Sometimes it is just unreasonable. Why do I worry so much? I plan and do the best I can. I pray. Why worry? But still, I am afraid. I worry about future events (like day camps and sleep overs). I worry about school. Just today when my son said he didn't like a girl at school, I worried that it was because she made fun of him. (But, I got him to explain...turns out, she just doesn't talk and he talks all the time. He says they are opposites. Now that's funny.) I worry about him being in a new class in the fall with a different teacher and different kids. I am often afraid. I hate it. I wonder if I will ever be able to let go of the fear or if this is a fear that allergy moms carry forever. I also wonder, if you pray, will you pray for me?

A Safe School Year and Summer Break (TTT 131)

My loot upon picking up my son from his last day of Kindergarten:

Used medication: Inhaler, asthma medication, benedryl

Unused medication: 2 Epipen Jrs

The unused medication brought me overwhelming relief, feelings of triumph and thankfulness. The unused Epipens make me feel so happy.

I tear up when I think about it. He made it through Kindergarten! It sounds dramatic. I know how it sounds. The threat is real. The fear is real. The school year is long.

And...We...Made...It.

His teacher...his amazing teacher...told me that she was so relieved to make it through the year without any problems. She was not the only school staff member to admit to me that fearful tears were shed early in the year.

We did it.

We kept his classroom peanut free. His teacher sent note after note home to the parents about peanut free snacks. Snacks were left in the staff work room for me to check the labels. Party items were left in the staff work room for me to check labels. Parents bought items off of our peanut free snack list. Parents bought candy off of our peanut free candy list. Parents brought the snacks early for me to check out before the party celebration at school. Calls and emails came to me days before parties and sometimes the day of a party. My son sat at a peanut free table at lunch. Kids were so aware that they told on my son for having sunbutter at the peanut free table. My son questioned the treat left (not in a prepackaged box) by the Leprechans on St. Patrick's day. My son never sat alone at the peanut free table. Parents told me they went on special shopping trips so they could provide peanut free lunches for their child who desperately wanted to sit with my son.

And more- there's so much more that I am not thinking of...

Staff members emailed me or left me notes about concerns. I was called and texted about special school-wide parites or classroom celebrations. My son's teacher carried an Epipen with her daily- each and every day of the school year. At the beginning of the year, the aide that was on duty on the playground would stop by my son's room just to see what color shirt he was wearing so she could keep up with him. I heard parents at PTO events suggest to their child not to have a peanut filled candy bar so they could sit with my son. I saw children chose not to have peanut butter candy so they could be with my son.

So many people, children, parents, teachers, staff members, worked together to make sure that my son was safe at school.

I am thankful. I tried to express it in a note to a few staff members but it was impossible to find the words.

How do you thank someone for protecting your child's life? At the end of the year, I am proud of him for excelling in school. I am so proud. But, my relief and my thankfulness overshadow everything like a mountain over shadows a speed bump. I can't help it.

My son gets it, too. He understands. He said he wanted to draw a picture for his teacher for the last day of school. Then he changed his mind and asked if he could make her a card. He asked for help spelling out the words. It was heart warming and heart wrenching to help him spell out his thankfulness for safety. I wonder if this was his teacher's first thank you note for safety.

I thank God for the people that helped keep my son safe at school.

I thank God that he made it through Kindergarten without an allergic reaction to peanuts.

Along with my son's medication, I brought my son home for summer break.

There's no break from food allergies.

But, all the same, it's nice to be on summer break. It's nice to eat breakfast, lunch, and dinner with my son. Call me overprotective. I know. It's true. I realize it won't get easier as he gets older and leaves home more often.

But, for me right now, it's all the more reason to cherish every moment this summer.

I am thankful for summer break.
I am thankful for a safe school year.
I am thankful for summer break.


This is my Thursday Thanks Tank (TTT 131).

Peanut Allergy Questions and Answers

I am still trying to make progress on some tasks around the house that are getting out-of-control. I am also behind on answering emails. I decided to take a break from my cleaning and organizing to answer emails. I quickly realized it might be better to answer some of my blog questions in a post instead of in replies to emails. All of the questions were asked in Allergy posts during Food Allergy Awareness Week. If you missed those posts, you can view them by selecting the Allergy label on the left side of my blog.

RLR asked:
Q1. Will you be packing lunches every day? (I'm assuming that if he's the only PA kid there, he won't sit at the 'allergy table' during lunch. Some preschools here have a special table for allergy kids that stay for lunch bunch. Don't know how they handle it in public school, since this is our first experience with my son in K and my daughter in 3yo preschool).
Q2. Are you more concerned about his classmates (and their parents) having a more through understanding (as compared to everyone else at the orientation)?

A1. Yes, I plan on packing a lunch for my son everyday. I hope he stays away from the cafeteria line. Right now, Peanut Butter and Jelly sandwiches are a lunch option everyday. The school is setting up a peanut-free table for him. I am debating what to do about sending Sunbutter and Jelly sandwiches. The principal was okay with it. I am nervous about it. Sunbutter is my son's first choice for lunch every day.
A2 I am most concerned about his classmates and their parents. However, the kindergarten classes do a lot together. The school is going to send home a letter to all of the kindergarten parents at the Kindergarten assessment. I know I cannot educate everyone but I will share information with anyone I can.

Trisha asked:
Q1 Have you used the ready-to-go benadryl dispensers?
Q2 We don't have the inhaler yet, still the nebulizer. When did you guys make the switch?

A1 I have not used the ready-to-go Benedryl dispensers. I should probably get some. I haven't even checked them out. I prefer the liquid because I think it gets absorbed into the body quicker.
A2 We didn't make the switch, really. We have both. I guess we are transitioning a bit. This will be helpful for when David starts school. However, he is allergic to grass and we live in an area that claims to be the "Grass Seed Capital of the World". So, we do daily nebulizer treatments as a preventative measure during "Grass season".

RLR said:
We have meds (EpiPens, Benadryl) in our daughter's backpack, and an extra set in a makeup-type case that we use when we aren't hauling the entire backpack. We like the pre-dosed Benadryl and Benadryl tabs, but it's not always practical since our daughter's dose changes as she grows.
Q1 Will the new school let him keep his meds in the classroom?
Q2 And, at what age did he understand it was medicine?

A1: The medicine plan at this point is to have his Epipen with him at all times. "With him" meaning that it is with an assigned adult that is at his location. That means- when he is in the classroom, his teacher will have it; when he is on the playground, an assigned duty will have it; when he is at PE, the PE instructor will have it, etc. All of the assigned people will be Epipen trained at the beginning of the year. There is also a school Epipen in the health room. His inhaler and benedryl will be in the health room.
A2: What a great question! I am having to think about this. I'd guess it happened around 3. I don't know. We have always been very open and honest about the purpose of the medicine. We were careful not to scare him. The book Allie the Allergic Elephant was excellent for opening up discussion. We pretty much explained that if he ate something with peanuts in it, he would have trouble breathing. As he has gotten older he has grown in his understanding of that. I was a bit surprised when he brought up dying in his Allergy Interview. I am glad he understands the seriousness, of course. Back to the medicine- around 4 we showed him the trainer and explained the Epipen more. He calls it his "shot."

aerotatt asked:
Q1: Have you found out whether you can choose the teacher or not?
By the way, thanks for reading. I loved getting your comment. (aerotatt also has a incoming Kindergartner at our school.)
A1: I haven't pushed the school to determine David's teacher. I think I could because food allergies are covered under the Disabilities Act and the school pre-determined the teacher for other students with special needs. I am extremely ready to know his teacher and begin working with her. However, I haven't pushed that. I have been told (by teachers not administration) that you can request at teacher at registration. (And, yes, I wonder if I should be pushing this issue but I want to pick my battles carefully and start on the right foot.)


I hope that was helpful to some and interesting to everyone else.

Check out this great post about starting Kindergarten with Allergies:
Entering School With Food Allergies

Thursday Thanks Tank #70

I am not really sure where to start. Wednesday was not a good day for me. I'd like to tell you all of the details. I like to talk to you one-on-one about how sad I feel about the day but I just can't. It is impossible for me to blog that conversation. Instead I will just tell you that I was caught off-guard by the events of my day. My dog, Bailey, had to be put to sleep. I didn't see that coming. I had no idea my day would unfold like it did. We got our dogs, George and Bailey (yes, yes- named after "George Bailey"), 6 months after we got married. My husband picked out George and I picked out Bailey. George died in April. Bailey was 13 years old in December. I was unbelievably sad all day Wednesday. I still am really sad. I lost a great dog.

On top of my grief is the knowledge that I don't know if I will ever have another dog. Last January we found out that my son is allergic to dogs. It shouldn't have come as a big surprise because there had been several times where his asthma would flare up around dogs. Our dogs never bothered him. The doctor said due to that and the age of our dogs, we could manage David's asthma and keep our dogs. Getting another dog would be risky to David's health. I know that. Knowing it does not help me grieve. It makes me angry.

I was just reading another friend's blog about her son's allergies, some of which are newly discovered allergies. She said that allergies stink. Oh, I agree with my whole heart. Today I was angry that David has allergies. I was angry that he has asthma. His asthma has been acting up lately. I was sad and then I was just plain mad.

In the middle of it all, I remembered something... My God cares.
He cares about me. I believe that he cares about how I feel. When my heart hurts and I am sad, it matters. When I feel angry about my situation, God cares. He will listen to me. I can pray and pour out my heart to God and God is compassionate.

I AM THANKFUL FOR THESE TRUTHS:

Psalm 55:22 "Cast your cares on the LORD and he will sustain you..."

Nahum 1:7 "The LORD is good, a refuge in times of trouble. He cares for those who trust in him."

1 Peter 5:7
"Cast all your anxiety on him because he cares for you"

It doesn't matter how big or small the anxiety, frustration or anger, God will listen and he desires for me to turn to him. I am not over my grief. I am still very sad. But, I know that I can tell God exactly how I feel. That comforts me.

Oh, and one more thing- if you ever have a bad Wednesday, hop on over to 5 Minutes for Moms and check out the Wordless Wednesday posts. I let the kids watch a long movie and loved every minute of browsing the pictures and making comments! There were so many great pictures that made me smile. I am thankful that I had some time to do that. I am also thankful for all of the people that hopped back over and commented on my blog. Each comment was a "happy thought" for me on an otherwise very bad day.