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A Season of Celebrations

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I am ready to celebrate! Sunday we declared rice an official pass and yesterday E passed the initial oat challenge!!  We still have to finish out the oat trial, but things are looking good!

If you recall, I was not looking forward to this December.  In fact, I was dreading it.  I was so focused on all of the challenges that we were set to face that I didn’t even think about all of the things that we would have to celebrate this season.  I was so caught up in the stress and negative aspects of FPIES that I totally forgot that I was going to get to spend Christmastime with a two-year-old!  Without knowing it, my own little elf has reminded me of what this time of year is all about.  So, in contrast to the post I wrote about a month ago, I want to share with you all of the fun that we’ve been having this holiday season, despite living with FPIES and enduring serial food trials.

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We kicked off the season with a dairy challenge the Monday before Thanksgiving. I know, how festive!  Despite the stress and uncertainty of the trial, we managed to have a wonderful Thanksgiving.  Jonathan’s sister and her husband hosted a beautiful family dinner.  They graciously offered to make it safe for E but we decided to err on the side of caution.  The possibility of mistakes or cross-contact was too high, especially during the dairy trail, so I brought a safe dinner for E.  It wasn’t necessarily a traditional Thanksgiving meal but he gobbled up his turkey meatball, mashed potatoes, applesauce, green beans, and corn bread.  He also ate in a highchair so that he was a little more removed from the table (and allergens).  I don’t think he even noticed that he wasn’t at the table or that his dinner was different.  He loved eating with the whole family, especially his cousins!

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After Thanksgiving, the countdown to Christmas began!  For as long as I can remember my mom has always made a paper chain to help us countdown to Christmas.  I was so excited to make one for E this year because he can finally understand what it signifies.   Every night before he goes to bed, he rips a link off and declares that we are “one day closer Christmas and Santa Claus will be here.”  It’s the cutest thing ever!

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After two weeks of trialling dairy we aren’t totally sure it’s safe and decided to retrial it after things settle down in January.  It’s disappointing to spend another holiday dairy-free but we are becoming pros now at finding substitutes and modifying traditions.  E is in love with the idea of “kissmiss coosies.”  In addition to the safe chocolate chip cookies, we have been experimenting with recipes for shortbread cookies (which are naturally egg-free!).  Baking and decorating the cookies is almost as fun as eating them!

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Next up was the rice challenge, which went so well we were able to combine it with a visit to see Santa Claus.  E has been so excited by the whole idea of Santa Claus and talks about him every day.  I think he was a little starstruck when he first met the jolly old elf in person, but managed to file his request for his “own kitchen” (which is all he’s been talking about!).  He was also lucky enough to get a private visit from Santa Claus who arrived at his Grandi and Grandad’s house via firetruck!  The icing on the (allergen-free) cake was definitely the email that he received from Santa last night.  Santa sent a video that announced that E had made it to the nice list!  We have watched this video about 10 times already and each time E gets more and more excited!

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We’ve also been spending time watching some classic Christmas TV specials and, of course, choosing and trimming our Christmas tree.

E’s excitement about Christmas and Santa Claus has absolutely been contagious.  I think actually at this point I might be more excited for the big day than he is.  I can’t remember the last time I was looking this much forward to Christmas!  Seriously, I’m giddy.

When you are in throes of FPIES, or any other stressor, it’s hard to step back and remember that this is not the only thing going on in your life.  The holidays are full of parties that center around food (food that is full of dairy, egg, and shellfish).  So, having a child with food allergies can be stressful.  It means more planning.  It means more work.  It means constant vigilance.  But it also means that we will spend lots of time surrounded by people we love and who love us.  It means that E will get to hang out with his family, many of whom we don’t see enough.  Sure, some traditions have to be tweaked, but E is two! He doesn’t know that there are cookies that we’ll omit from our baking menu this year.  He doesn’t care that he can’t partake in my dad’s famous Christmas Eve shrimp scampi or Aunt Jean’s lasagna.  He’s never had those things and would probably even prefer a peanut butter and jelly sandwich.  I’m definitely guilty of mourning the things he can’t do and I love that he is always ready to remind me of all that he can do and what’s important to him, and what’s really important about the holidays (hint: it’s actually not the food).

I hope that the joy of our Christmas season can bring hope to those of you that are in the thick of life with FPIES or any other challenge.  We’ve had so much fun watching E getting excited for Christmas and enjoying all that comes with this time of year that we’ve been able to shift our focus away from FPIES (even though we were in the middle of some pretty serious food trials).  The opportunity to take a step back and remember that there is so much more to life than FPIES has been a bit of a Christmas gift (and lesson) to me.

Thank you for celebrating our passes and Christmastime with us.  I wish you the joy and excitement of a two year old on Christmas and a happy and healthy new year full of your own celebrations!

5

Rocking the Rice Trial!

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E’s rice challenge on Monday was great! This was our fourth challenge overall and the second one in the past month so we are old pros at this point. E knew just what to do.  He humored the nurse and allowed her to take his vitals and ran to the scale for his weight (I wish I loved the scale so much).  Then he ran to find his favorite toys in the playroom.  We were spreading the toys all over the floor before we even saw the doctor 🙂

He inhaled his first dose of rice flour (1/4 tsp mixed in applesauce) and could barely wait the 20 minutes until his next dose (1/2 teaspoon mixed in applesauce). The rest of the day was gloriously boring. There was no sign of any problem or discomfort and we were out of there by 1:00!

E was such a good boy that we decided to embark on our annual trip downtown to see the Christmas Light Show and Santa Claus at Macy’s. He was very excited to see Santa and ask him for his “own kitchen” following a recent disagreement with mommy about his presence in her kitchen. The nostalgia of the light show was totally lost on him but he loved meeting Santa Claus. He ran right up to him and gave him a hug. Then he got shy and uncertain but, with some encouragement, he submitted his request and posed for an obligatory picture with no tears at all.

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Jonathan and I were in awe of what an amazing little boy we have. He is so flexible and brave! We are so lucky.

Mommy and Daddy left the hospital on Monday in a totally different mood than two weeks prior when we left the dairy challenge. The rice challenge really felt like a pass. We weren’t hesitant to call it that and we weren’t just waiting for the other shoe to drop. We really felt like things were good.

That definitely called for a celebration so we decided to take E to one of our favorite local restaurants. We still brought all of his food (we weren’t ready to get crazy) and had a great time enjoying wonderful meals (and a celebratory beverage for mom and dad). Again, we couldn’t believe that after a day that was totally out of he norm, with no real schedule, and a 20 minute nap he was still incredibly well-behaved at the restaurant. Perhaps he will get to “go out eat” more often.

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The way we felt leaving the rice challenge – like a weight had been lifted – really put our feelings about the dairy trial in perspective. Dairy still doesn’t feel like a pass. We can’t explain it, there aren’t any concrete reaction symptoms, but it doesn’t feel right. So we are going to put dairy on hold for now.  Dairy did come off the official allergen list in E’s medical record and we are less likely to body check a toddler waving around a goldfish cracker, but we aren’t going to be offering him cheesecake any time soon. We’ll retrial it systematically in January. Right now we’ll focus on rice and oat (which we start in a week and a half) and enjoying Christmas (even though it will still be dairy-free).

So we are in the middle of the at-home portion of the rice trial. There was a different attending allergist at this trial than the last and the trial protocol we were sent home with was very different from the one we got for dairy.  We were told to give E 1 tsp of rice for two days, 2 tsp for 2 days and then 1 tbsp for a day. The difference between this protocol (5 days) and the dairy protocol (12 days) makes me feel not at all guilty about changing it up to conform to our trial protocol. So our plan is (after the 3/4 tsp in the hospital on the first day) 1 tsp for one day, 2 tsp for two days, 1 tbsp for two days, 2 tbsp for 2 days, 3 day break, 2 tbsp for one day, 2-4 tbsp for two days. We are using rice baby cereal mixed with applesauce because E loves applesauce. We are hoping for less drama and fewer games than the milk trial.

So today was the fourth day and he’s doing great. We have had some weird sleep issues the past two nights but they occurred at different amounts of time after his rice doses (it was about 12 hours after his dose of rice on the first night but about 21 hours after his dose the next night).  We can’t really be sure what this is all about. He hasn’t been sleeping well for a couple of weeks, since having a bad cold, so it might be nothing. We’ll just file it away and see if any real pattern develops. Otherwise, there hasn’t been anything to concern us. No lethargy, no weird poops, nothing. So we are very hopeful that this will be an easy and clear-cut pass. Only time will tell…

6

A Season of Challenges

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We are stocked up and ready to go for the first challenge – milk, new cars, and a bravelet to remind mommy to “be brave”

E was diagnosed with his IgE milk allergy on a Friday afternoon, the Friday between Christmas and New Year.  The allergist appointment and events of that night were a stressful whirlwind of emotions and logistics.  Despite our feelings of anxiety and fear related to the fact that milk was equivalent to poison to our four-month old, we had a limited amount of time to fill the prescription for the epi-pen and figure out how we were going to get our hands on Neocate (let alone pay for it) before we went into another holiday weekend.  On top of all of this we had a baby boy who was totally off of his schedule, hungry, and still wondering why we let a stranger scratch his back.  At some point that evening I called my mom to fill her in.  She was anxiously awaiting the results of our appointment and I needed to process.  I told her about the allergist’s impressions and the scratch test and learning how to use an epi-pen and the new formula that was going to change our lives.  And I mentioned that the next time E tried milk it would be in the hospital.

It’s no wonder that in all of the chaos of that night and the relay of information (that I didn’t even fully understand at the time), that there were some miscommunications.  A couple of days later my sister called me confused, “Mom said that E will have to try every new food in the hospital, is that true?”  I explained to her that it was only milk that he would have to try in the hospital and that it would be ridiculous to have to try every new food in the hospital.  He was only four months at that time but the allergist had already told us that new food could be introduced when he was ready, while avoiding milk.  We laughed about the miscommunication and the absurdity of trying to feed every single new food to an infant in the hospital.

Ah, ignorance was bliss.  At that time I had no idea how complicated our relationship with food was about to become.  After that E continued to have chronic FPIES reactions as well as several acute reactions.  We learned that we do indeed have to introduce new foods in a very controlled and drawn out way and that every new food has the potential to be an allergen.  While we are able to introduce most new foods at home using one of our own food trial protocols, we also have two clinic-based food challenges under our belt (neither one for milk) and we are gearing up for 3 more before the end of the year!

Starting today we will embark on 6 weeks of food challenges/trials.  We will go to the hospital’s out-patient clinic every other week for E to have his initial dose of dairy, rice, and oat.  If he passes the first day, we will complete the rest of our two-week food trial protocol at home.  These are the allergens that we’ve known about the longest.  The ones that pretty much define E’s FPIES.  I’m super-nervous and plan to be super-strict about the trials.  And we are doing all of this over the holidays!

You know, because it isn’t stressful enough to take your food-allergic, curious toddler to holiday parties and dinners hosted by other people.  Now we’ll be doing it in the midst of food trials, when an accidental exposure will cause even more stress and confusion than usual.

Oh, and just for a little extra excitement, we made an offer on a house last night. So we might be moving during all of this.

You’re right – we probably are crazy. But these appointments were the earliest we could get.  We made the appointments in September and the first available was November.  We didn’t want to have to wait any longer than that.  E has been avoiding dairy since December 2012 (about 23 months) and rice and oat since about March 2013 (about 20 months).  His scratch tests have been negative for all IgE allergies (including dairy) for the past 18 months.  We are well over the 12-18 months of avoidance that is generally recommended and we are eager to find out if he is still allergic.  I feel like I need know.  I need to know if I have to continue to be so paranoid around these foods.  I need to know what we are dealing with.  And the only way to know is through a challenge.

I have no idea how the challenges will go.  I vacillate hourly between daydreams of passing the challenge and sharing ice cream with my son and preparing myself for the devastation of a fail.  This is our third challenge in the last year.  We know the drill.  We know where the clinic is, where to park, how to check in.  We know the procedure, that we’ll wait in a waiting room (where they will be irritatingly be playing Spongebob on the TV) until 8:00, when a nurse will take all of the families up the the clinic.  E’s vitals will be taken, we’ll be assigned to a room, we’ll meet the attending.  E’s allergist decided that he doesn’t need an IV this time, so hopefully he will face less trauma and get his first dose of the challenge food earlier that he has in the past.  We have new cars to play with and all the Curious George episodes on an iPad. Hopefully we can keep my active little boy busy and happy all day in a cramped hospital room

So far we are 50/50 – E has passed a challenge and failed a challenge.  We’ve experienced the stress and disappointment of a fail and the joy and relief of a pass.  We’ve left the hospital at 4 pm in different clothes, 4 hours after a reaction that soaked both E and I in vomit.  And we’ve left at 2 pm, an uneventful 4 hours after E ate a dose of barley.  But I can’t predict the outcome of today’s challenge.

To say that I’m anxious is an understatement. For the past two years I have treated a glass of milk near my son as though it was a loaded gun. Today I will put on a happy, excited, encouraging face and watch as he drinks milk. I can’t ignore that at one point he tested positive for an IgE allergy. It’s possible a fail today could result in an anaphylactic reaction, not “just” an FPIES reaction. It’s unlikely, but possible. I know that he’ll be safe. He will be watched closely by medical professionals as well as his father and me. But I’m still worried.

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Waiting for the first dose of milk

So, if you have a minute today, we would really appreciate any prayers, positive thoughts, good vibes, etc, we’d really appreciate them. I’ll do my best to post an update tonight or tomorrow.