Time for school

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!

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!


Why we walk – Fare Walk for Food Allergies

This year our family has decided to put a team together to participate in the Fare walk for food allergies. This walk helps to raise money and awareness for food allergy reasearch and education. Of course that is a big part of why we walk, to raise money and help to fund this wonderful organization. But, this year we walk for another reason. We walk to show J.T. that he is not the only one, that there are other kids just like him. We walk to show him that there is an organization and a community of people who are on his side and willing to fight for him, that there are people out there who are doing research and looking for cures, and above all that he has family and friends who love and support him. So join us for the walk if you are able or donate money to our team if you can. I’m so excited for J.T. to have an experience where his allergies make him feel included rather than left out. I can’t wait for him to have a day where we get to celebrate him and all of our allergy successes (4 years with no E.R. visits!!). We hope you can celebrate with us!

To make a donation click here!

Busy, busy summer

Wow! Is it really more than halfway through July already? August is right around the corner and then school starts again. I don’t want to rush it, I’m enjoying every minute of this summer! We’ve just done so much fun stuff that it is flying by! We’ve already done fireworks, museums, Disneyland, playdates, dance class and we even dipped our toes in the pacific ocean.

My beach bums in Malibu!

My beach bums in Malibu!

I’m enjoying this time with my kids so much, that I haven’t put aside any time to blog. So this is just me checking in to say that everything is great, as far as JT’s allergies go we have not had any reactions, complications or bad news. I’m hoping to get back on track in September, but for now I’m going to go do some more fun stuff with my kiddos!!

Having fun in Disneyland!

Having fun in Disneyland!

end of the year thank you

JT had his last day of Kindergarten yesterday, and he’ll move on to a new school for first grade. I couldn’t have imagined the roller coaster of emotions it would be. So proud and happy to have him home for the summer, but so sad for him to be leaving such a special place. Last summer, I felt only one thing anticipating the start of the school year, and that was fear. How do you release your child to other people when something as simple as another student’s snack could make him sick, send him to the hospital or worse? How do you trust that they could ever care as much as you do? I was terrified. Really, really, genuinely afraid. Expecting that dreaded phone call would one day come…”He was exposed”, “He’s not well”, “It was an accident”. But, not only did the phone call never come, the fear also eventually subsided. It didn’t take long to realize how special the staff at my son’s school was and that they cared as much as I do. And not just his teacher, but the assistant(s), and the nurse, and the janitor. They all cared. As I sat and wrote out their end-of-the-year “thank you’s”, I sobbed. Yes, they taught my child, and they helped him to make friends and they kept him safe and those things are so, so important. But most important to me is that they CARED, more than I ever thought they would. And I could never thank them enough.

The Results Are In…

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 Results

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!

The Bad
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)

The Ugly
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.

first babysitter

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!

Oral Allergy Syndrome?

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.

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?

allergy transition day

In our school district the students move through five schools before graduating. And after an amazing and succesful year at JT’s current school, it will be time for him to move on. As the parent of a child with medical concerns, all of this switching is extremely nerve-wracking. Just as you get comfortable with one school’s staff and policies, it’s time to change. And it feels like starting over. I remember how emotional I was sending JT to kindergarten but I think I may be more of a mess when he leaves. They have been just wonderful in so many ways.

Fortunately, his next school (grades 1-3) has already anticipated some of the needs of the families with food allergies. They offered an “allergy transition day” for students and their parents about 2 weeks ago. We were able to sit with the nurse and the head of the cafeteria staff. The cafeteria manager explained how lunch works and how student’s allergens are entered into their computer system so that the cafeteria staff is constantly aware of which things a child can and can not eat. She also offered for parents to go into the cooler and freezer to read ingredient labels. JT will always bring lunch from home so we passed on that, but it’s good to know that the option is there if he were to ever outgrow some of his allergies (fingers crossed!). We were able to peek at some of their packaged snacks and it turns out that JT can have some of them, so we could make a note in his lunch account specifying that he is ONLY to eat the pre-packaged (crackers, cookies, etc.). That would be a great option if we were ever to forget lunch or if at some point he just starts feeling left out. Next the nurse explained how the children with allergies are generally grouped together so that those teachers can be extra vigilant in their classrooms and that they will be given a safe place to eat snack within those “peanut safe” classrooms. They will continue the policy of having children wipe up hands after lunch and snack with the allergy parents providing the wipes. That is great for us because we provided all the wipes for JT’s class for this entire school year. We were shown where the epi-pens are kept (centrally located in the nurses office) and we talked about the “peanut free” table at lunch. As parents, we are given the option of having our kids sit there or not. JT will remain at the peanut free table. They wrapped it up with some questions and a tour of the cafeteria and nurses office and we were on our way.

Just offering this program is a great first step and offering it before the end of this school year, rather than the beginning of next year is really helpful. No one wants to go into the school year with lots of unanswered questions. The meeting showed that they were aware of the severity of food allergies and that they would be open to discussions and questions regarding them. I was especially happy to see that parents were able to get into the cafeteria to check out ingredients and that children will continue to wash up after eating, also the nurse made clear that she is available to go over concerns with us. I was disappointed with the phrase “peanut safe” and with the location of the epi-pens. I still after the meeting don’t know what “peanut safe” means exactly. It’s not peanut free, which is an actual thing. I guess it means that the teachers are aware of the allergies and extra vigilant. Does that mean the classrooms are also “dairy safe” and “egg safe”? Perhaps “allergy safe” would be a better phrase? My opinion is that “peanut safe” is just a buzzword to keep parents happy, but it didn’t impress us. As far as the epi-pen location goes, I’m actually ok with it while the children are inside the school, it’s the playground I’m worried about. The playground is not very close to the school and I feel like if JT were to have a reaction on the playground it would be too late by the time their fastest running teacher got his medication to him. I’ll be contacting them about that before the end of the school year to see what can be done.

Overall, I think this meeting was a great idea and I appreciate the timing of it. It was also really great to see some of the other families who have severely food allergic children. It’s great to know that there are other families to look to for support if needed.

Finger licking good

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!