Today I got a call from J.T.’s school nurse. She was letting me know that in art class the students were using egg cartons…and that J.T. was choosing not to participate. After the art teacher checked in with the nurse, the nurse tried telling J.T. that the cartons were safe for him to touch and when he still refused she offered to call me, I think expecting me to say it was OK. Which I immediately said it was not. Egg’s are a life threatening allergy for J.T. and our thinking about them is very black and white. Eggs are unsafe. There is no gray area where J.T. has to make decisions about when or why they “might” be safe. He knows they could make him very sick and not to come into contact with them. Someday he will have to make those decisions for himself, but not in first grade.
The nurse was concerned that J.T. would feel left out if he didn’t participate in the project, he was more concerned that he would get sick if he touched the egg cartons. I was concerned that it was happening at all (since it states in his health plan that all project materials are supposed to be allergen free). But the overwhelming emotion that I felt through all of this was pride. My first grader stood up for himself, and not just to his peers but to his adult teachers. He made it clear that he was uncomfortable and that he was not going to participate in an activity that he felt was harmful to his health. He understands his allergies and the risks involved and that is so important. In the end, he didn’t feel left out or different and he didn’t let his allergies get him down. He had a great day and came home to 2 super proud parents!
The story of Giovanni Cipriano is a heartbreaking one. Giovanni,a young boy just starting highschool, mistakenly ingested peanuts and went into Anaphylactic shock. Sadly, after several weeks of being in a coma, Giovanni passed away on October 18, 2013. Giovanni’s heartbroken parents have come forward after this tragedy to urge other parents of children with food allergies to have a food allergy action plan. I commend the Cipriano’s for their bravery and honesty in coming forward with this message. Watch the video and if you are the parent of a child with food allergies take this message to heart. Create a plan, find an allergist you trust, educate yourself, your family and your child, and advocate for their safety whenever necessary.
Watch the video here. You can also visit Giovanni’s GoFundMe page.
When I tell people about JT’s allergies and about all of the precautions we have to take the most common response I hear is “that must be so hard”. People hear about how you grocery shop, what you cook for dinner and how you prepare for outings and they say “I don’t know how you do it!”. And really, there is nothing wrong with this response. It’s not insensitive or rude and I don’t mean to imply that it is. I’m sure in a different life I would have had a similar response. But, things like shopping and food prep aren’t hard. Does reading EVERY label in the grocery store make shopping take twice as long? Sure. Does finding (or creating) recipes that are safe for JT and still yummy and healthy enough to serve my family require more research? Of course. Is not being able to just spontaneously grab dinner out at a restaurant inconvenient? You bet. But those things aren’t the hard part.
The hard part has nothing to do with time or convenience. The hard part is that gut-wrenching hour after you notice a few unexplainable hives on your childs face and you are just watching and waiting for an allergic reaction. It’s rubbing your childs back as they retch and vomit for 6 hours straight because tests results have shown that they have outgrown an allergy, but not an intolerance. It’s seeing your brave child’s lip tremble as they hold back tears at a birthday party and the cake that they can’t eat has their favorite character on it. It’s emergency room visits, hospital stays, ambulance rides, testing and testing and more testing. Hard is dropping your child off at school KNOWING that at some point they will be in a room with something that could kill them and hoping, just HOPING, today isn’t the day you get a call from the nurse.
That’s what is hard. The other stuff is easy.
As Halloween quickly approaches (eek! I guess it’s time to finish up the kids costumes!), I wanted to share some ideas for staying safe with food allergies while you trick or treat this year.
FAAN has some great trick-or-treat tips here.
Click here for more ideas from Kids With Food Allergies.
You can also check out my Halloween Post from last year.
Happy Halloween!Have fun and stay safe!
Molly is such a great little sister. She adores her big brother, she wants to do everything JT does and be with him all the time. She misses him like crazy while he is at school. At 3 years old, Molly doesn’t fully understand JT’s allergies, but she knows on some level that certain foods will make him sick and she is very careful about it. She knows that she has to be thoroughly cleaned up after meals and that it’s not OK to share food with JT. What I don’t think she realizes is how much she is missing out on because of JT’s allergies, although I’m sure that won’t last forever. We all have to make some sacrifices to keep JT safe. I realized recently that Molly has never been out for breakfast. With JT’s egg allergy being his most severe, we don’t go to any restaurants that serve breakfast, even for lunch. So after JT went off to school today my Mom and I took Molly out for her first restaurant breakfast and she loved it. She got pancakes shaped like Mickey Mouse with whipped cream and syrup and chocolate milk. I also order her a scrambled egg with hopes that she would give it a try (our house is egg free) but she wasn’t interested, and since today was about doing something special for a special little girl that was just fine with me.
Forgot to snap a picture this morning, but here is the best little sister around!!
This summer has absolutely flown by! And while a week ago I was hanging onto the sunshine and warmth for dear life, this week I suddenly feel ready for crisper air, sweaters and soup in the crock-pot. I think it may have a lot to do with the fact that JT had a very succesful first week in first grade and so my fears of him starting in a new school with a new teacher have been relieved and I’m starting to relax…a little bit anyway.
Ready for first grade!
Our school system has been wonderful, but I know that I still have to work hard to advocate for JT. It’s really important for me to start making sure all of our medication and forms are up to date and that the staff is fully aware of any updates or changes to his medical history well before that first day of school. I also have to be sure to educate myself on any changes in school and classroom policies. Being prepared helps me to be able to enjoy sending JT off to start the new year.
Over the summer I was able to get in touch with JT’s new teacher and we chatted about his allergies. I immediately felt like he was in good hands. The first thing that helped was that his teacher taught at his old school last year and so she already knew of JT and his allergies. Second, she is good friends with his teacher from last year and so they were able to discuss, at length, what worked in her classroom and what didn’t work (I’m confident that this info would have been relayed regardless of friendship, but still, I think it was helpful). Third, his new teacher has severe food allergies. Knowing she has food allergies means that she “gets it” on a level that many people do not, it also means she can be a role model to JT as a succesful adult who lives with severe food allergies and that is really important for him (and me) to see. Now, this doesn’t mean that a teacher who does not have food allergies won’t “get it”. JT’s teacher last year was nothing short of amazing and didn’t have food allergies. It just means that I have to do less explaining and quite honestly, less hoping that she understands.
Aside from JT’s teacher, there are other factors that have made me feel confident in this new group of people who are responsible for JT on a daily basis. The first is that his classroom (which includes several children with food allergies) is the closest to the nurses office (where his epi-pen is kept). Also, they will continue to have a peanut free table in the cafeteria. Even though peanut is not JT’s worst allergy, I continue to have him sit at the peanut free table because I feel like that way the lunch room monitors always know where he is. After speaking with the nurse we were reassured that the school would continue to follow JT’s individualized health plan from last year. Some of the accommodations stated in his plan are that children will wash hands after lunch and snack, that JT has his own trash barrel in the cafeteria so that he doesn’t have to touch a barrel that has been contaminated with his allergens and that the we can provide extra snacks to be kept in the classroom just in case something were to come in to contact with JT’s food (for example, a milk spill). In addition, classroom celebrations continue to be non-food based – yay!
I feel like our school system has some great policies in place and they have been willing to work with us to make modifications that will keep JT safe. I wish that every child and family with food allergies had a similar experience but I know that is not the case. If you feel like your school system is not doing all it can for your child’s safety, I would strongly suggest having your child put on a 504 plan. Every child deserves the right to learn in an environment that is safe for them!
At our last visit to the allergist we did some blood testing to see where JT stands with his allergies. The Dr. opted against skin testing for this time around. This was partly because this time of year it’s just too difficult to keep JT off of his daily zyrtec for long enough to get an accurate result. I think that the skin test can be hard for kids, especially the waiting, so I was on board with his decision. Although, going to get blood drawn was no picnic this time around either. You could hear my normally calm and collected kid coming from a mile away!
Here is what the numbers mean:
0-.35 – No allergy
.35-.69 – low allergy
.70-3.49 – moderate allergy
3.50-17.49 – high allergy
17.50-49.99 – Very high allergy
50.0-100.0 – Extremely high allergy
100 + – craziness
The Good (ish)
Soybean .38 (down from .46)
Peanut 1.96 (down from 3.96)
Beef .62 (down from .96)
Pecan, pistachio, pine nut, brazil nut, almond, and cashew were all down to .35 or below!
Walnut .52 (up from .35)
Hazelnut 4.21 (down from 4.39) Even though this is “down” I still put it in the bad category
Birch pollen 9.17 (previously not tested for)
Egg white 68.8 (down from 70.3) Again, it’s “down” but still terrifying
Milk 102 (up from 77) This has increased every year. (2009 was 49.2 and 2010 was 56.5)
Some things the Dr. didn’t re-test for like cat dander because we no longer have cats and mangoes because we avoid them very easily. He also didn’t re-test for shellfish so I’m going to ask that he do that next time, I’m curious to see what those numbers look like. I’m happy to see so many things heading in the right direction, especially those tree nuts and peanuts! But really, positive changes in the milk and egg results are what I’m hoping for. It’s clear that those allergies aren’t going to just disappear overnight, but let’s hope that next year we see them trending down. For now we just keep on doing what we do…avoid it all and keep our boy safe.
We found a babysitter!
Until a few weeks ago the only people who had ever watched my children were family members (we are very lucky!). Even if JT didn’t have allergies and asthma to contend with, I think I would still prefer my kids to be with family members when they couldn’t be with us. And with the allergies, it always felt like too much of a responsibility to put on someone who wasn’t family. Even still, Chris and I recently started thinking that it would be nice to have someone outside of the family to babysit just once in a while. For a long time it was only a thought, but recently we got to know my niece’s dear friend, Colleen, and the thought became reality. The first thing that got me thinking was that my kids just loved her right away and I could tell the feeling was mutual. On top of that it’s obvious that she is a hard-working and trustworthy girl, she works full-time while attending college and last month when she was maid of honor in my nieces wedding, she was immensely helpful. So we asked if she would ever consider watching the kids and she said yes! She and the kids were both so excited, and we were too! Finally finding someone outside of the family that we could trust was such a huge relief.
Of course, when the night came, I was nervous but I made sure to be organized and keep Colleen informed and that helped to settle my nerves. I had her come about an hour early so that I could go over all of the information without feeling rushed. I also wrote everything down so that she didn’t feel like she had to memorize everything I was telling her. I explained all of JT’s allergies, his asthma and their symptoms. I showed her how and when to use his medications and we went over the chain of command in an emergency. One really important thing I did was to leave out a basket of JT safe snacks and told both Colleen and the kids that they were only to eat food from the basket so that there would be no chance of a mistake. I also fed the kids dinner before we left so that she would not be responsible for a full meal. I tried my hardest not to overwhelm her but I’m sure it was still a lot for her to take in.
We went out for dinner and had a really fun time and more importantly things at home went great! The kids were not only safe and healthy but they had fun. I honestly would have been happy if they had sat and watched a move all night, but they did crafts and played games instead. The kids loved having Colleen watch them and we love having another reliable person to call if we need a sitter for the kids. We are looking forward to having her back, but not as much as the kids are!
Over the past few weeks JT has been getting lots of rashes on and off. He’s got some eczema acting up on his forehead and is getting an occasional welt or hive on his face. I think mostly it is in response to spring time, which is typically a tough time of year for JT. He is allergic to different grasses and pollens and I’m sure other flora and fauna that we haven’t tested for.
The other day, after eating an apple, JT broke out all around his mouth. He has never reacted to apple before so I’m wondering if it is Oral Allergy Syndrome? If you don’t know about Oral Allergy Syndrome, you should read this post written by Celiac and Allergy Adventures. And if you aren’t following her blog already, I recommend it. Her perspective as an allergic adult gives me a glimpse into and hope for JT’s future.
Red bumps around mouth.
This is not a great photo but I snapped a shot real quick to send to my husband. If you look closely you can see the rash goes all the way around his mouth.
Has anyone else had any issues with Oral Allergy Syndrome just popping up this season?
Sometimes you just have to laugh…
My husband, Chris, and I have worked really hard to help JT to learn about and understand the severity of his allergies. To the point that I was even concerned that we had made him overly sensitive. About the time he was ready to start school (when I was probably over-loading him with information) he started worrying a lot more about things like touching dirty tables, his food accidentally coming into contact with his clothing, or just being near his allergens. Since then I feel that JT has been able to maintain a good balance of being very careful about his allergies without being totally over-the-top hyper-vigilant.
But just recently JT has regressed, not to the hyper-vigilant stage, but waaay back. It’s like for 2 weeks he had a weird lapse in judgement….and started licking people. Yup. Licking people. First he licked his Uncle’s hand (right after the Uncle had eaten a sandwich), then about a week later he stuck his adult cousin’s thumb in his mouth (right after she had eaten crackers and cheese). I have to laugh about it now, because it’s really just so ridiculous. He’s such a bright kid and certainly knows better than to lick people, allergies or not. Maybe he just got tired of being so careful all the time and this is his way of letting loose. But, aside from just being gross, “letting loose” has caused two pretty bad allergic reactions. Not reactions requiring the epi-pen, but ones that required benedryl and lots of monitoring. Fortunately we had a scheduled appointment with the allergist last week, so he was able to reiterate all of the things Chris and I had already told JT about why not to lick people. Starting with…”it’s gross”! I’m hoping we’ve seen our last licking reaction and we can go back to our happy medium.
Oh, and we did some blood work at the allergist, fingers crossed for good results!