In June we were finally able to go to Jonathan’s first appointment at the Southern California Food Allergy Institute (SCFAI). This appointment is also called FA1 or the intake appointment. We were supposed to originally go out in April, but made the decision to reschedule with all of the uncertainly surrounding the pandemic at that time.
We decided that myself, Ken and Jonathan would be going to this first appointment with Clara staying home. Below is a breakdown of each day – what we did, where we stayed, how we got around etc. I’ve decided to try and make this as detailed as possible to help others who may be travelling in the coming weeks. I’m hoping our experience and cost breakdown will also help those on the wait list or considering joining to wait list. Of course, the cost breakdown is all relative based on where you live, etc. but this is our experience.
Trip Preparation
In preparation for our trip on Saturday evening, we took Clara to her grandparent’s, put Jonathan to bed and packed all his food. With all of his food allergies we would be taking all of his needed food with us to avoid going to a grocery store in CA if possible.
This all the food we packed for Jonathan in our suitcase. Not pictured are a couple potato buns. We also took cooked pasta and hot dogs in a cooler on the plane. The cooler was small enough for Ken to take it in his carry on.
This was more than enough food for Jonathan. We were able to get fruit (bananas and apples) from the hotel or the airport. We could also get additional crackers, veggie chips, pop tarts, etc. from airport stores if necessary. We brought home a fair amount of extra items, but too much food is better than not enough in my opinion. I have an inordinate fear of him running out of food.
This is everything we packed in his lunch box for the flight and trip to the hotel (plus some cooked pasta not pictured). Again, he had plenty of food and we had extra when we got to the hotel.
I also needed to pack a number of activities to keep Jonathan busy at the airport, on the airplane and in the car ride to the hotel. I wanted to pack enough to keep him entertained without going overboard – usually not my forte. The biggest winners were a coloring activity book, a water wow, reusable puffy stickers and his tablet.
Day #1 – Travel to CA
We flew to California on Sunday, June 14th on a direct flight from Detroit (DTW) to Los Angeles (LAX) on Delta Airlines. The flight is about 4.5 hours long. Our flight departed DTW at 8:35 AM and arrived in LAX at 10:19 AM.
We arrived at the airport at about 7:00 AM. We checked one large suitcase for the three of us and headed to security. Ken has TSA Pre-check for work travel and Jonathan also had it probably just because he’s three. However, I still haven’t gotten it and was not gifted it on my ticket. Instead of trying to see if I could also go through the TSA Pre-Check line, we headed to the regular security line because it was short anyway.
I brought several different mask options for Jonathan in hopes of him actually keeping one on. I thought this neck gaiter option shown on him below would have the best chance of actually staying on. WRONG. He wore it for maybe 2 minutes when we first got to the airport. After that there was no way he would actually wear it. I even got a little one for his Mickey!
After scanning our mobile tickets, handing over our driver’s licenses and pulling down our masks for person verification, we relatively quickly went through the security screening process. We all went through the metal detector and didn’t require any additional screening.
We found our gate and then found an unused gate area on the other side of the terminal. We wanted to not only social distance from other people, but also give Jonathan a little bit of room to run around. He got a snack, while Ken went to get food for us to take on the plane. While we waited, Jonathan and I video chatted with Clara.
Boarding began on the plane and we thought we heard the gate agent say anyone who needed extra time to board could do so at this time. We asked and it was not the case, but since we were already there she let us get on anyway. We usually get on early when travelling with the kids and a car seat since we need additional time to put the seat in place.
As soon as we got on the plane I told a flight attendant that Jonathan had a peanut allergy and they should have seen it since I always mark it on our reservation on the airline website. I also mentioned he was allergic to other nuts, etc. They said they knew and it wouldn’t be an issue. They were also handing out a disinfecting wipe to everyone on the plane as they boarded.
We found our seats on the plane and Ken got Jonathan’s car seat installed while I wiped everything down. We’ve flown with this Evenflo carseat for about five years now, with Clara and Jonathan. It’s slim, lightweight and easy to take with us on flights. Unfortunately, this will be the last time we use it as Jonathan is just at the 40 lbs threshold. The FAA language on the car seat can be hard to find, so I highlighted the words this time just in case. In all the times we’ve flown with it we’ve only been asked about it once, but we struggled to find the language in a hurry.
The flight itself was very uneventful. Jonathan did a great job on the plane and while he didn’t take a nap, he also wasn’t grumpy or loud. Part way through the flight the lead flight attendant (I think his name was Ernest) came back and asked me about serving a snack with Almonds since I had mentioned Jonathan’s other food allergies. Jonathan is allergic to almonds, but he has never had an airborne reaction. We told him this and said we thought it would be fine. I don’t know if they only served the snack in first class or just didn’t serve it around us (row 30), but I didn’t see a single person with the almond snack. I was honestly just surprised and really glad that he actually asked us about it instead of just serving it anyway. Major kudos to him for taking the time to ask!
We landed at LAX, went down to baggage claim to get our suitcase and went outside to try and find ground transportation to the rental cars. We were in Terminal 2 at LAX and they appeared to be doing outdoor construction either removing or hiding a number of the outdoor signs. It took a little while, but we eventually found where we needed to be (2Q). We were unable to get on the first bus because it was full, so we had to wait for a second bus. All the buses had signage about social distancing and had several seats blocked off to encourage people to sit away from each other.
We usually get our rental cars through National. Ken is part of their Emerald Club and you don’t have to go inside. You just go to the Emerald Club aisle, pick a car and leave. It really is the best for social distancing. You don’t have to talk to anyone until you are in the car leaving the lot.
We left the National lot in our Nissan Altima and headed towards the hotel. We stayed at the Homewood Suites by Long Beach Airport. According to our GPS, the trip was only going to take 26 minutes and I would estimate it was correct. Once we got close to the hotel we took a detour to drive around because naturally Jonathan fell asleep.
Little did we know we wouldn’t have been able to check-in to the hotel anyway. We knew check-in time was 3pm, but assumed the hotel wasn’t full and we’d be able to check-in early. Wrong. The hotel was “full” the night before and our room wasn’t ready until about 2:45. We spent the next 2.5 hours eating sandwiches outside, going for a walk and sitting in the car A/C while Jonathan played.
Definitely a lesson learned there. We didn’t have a lot of choices for flight times this trip, but for future trips don’t assume we can check into the room early.
Once we got into the room, we found out we had been given a 1 bedroom suite versus the studio I had booked. More room is definitely okay in our book, so it was acceptable. The suites are spacious and the kitchen amenities are so nice for preparing your own food. Most of Jonathan’s food required minimal prep, but it was nice to have if we needed it. Also, just a side note – our room (room 345) had a GIANT closet near the bathroom. It definitely seemed large enough for a pack and play if you are travelling with smaller children.
The hotel was not providing daily housekeeping service to cut down on close contact interactions. You could set your trash out for daily removal if necessary and call the front desk should you need additional towels, etc. I didn’t ask how they were keeping guests separated within the hotel, but I never saw anyone go into/come out of the rooms directly around us. I also never heard noise come from those rooms, so I would assume they were empty.
We got dinner from The Habit Burger Grill which is directly across the street from the hotel. Ken and I were able to order online and walk over to pick it up. The food was good and it was super convenient to just walk across the street.
We decided to try and keep Jonathan on East Cost time, since our trip was so short. We put him to bed a little later than normal (about 8:15 PM Eastern), but that was 5:15 PM local time. He slept awful that night, so none of us slept very well. I don’t know if it was from being in a weird place or trying to sleep in a queen bed when he’s used to a twin.
Day #2 – Appointment Day
Jonathan was up for the day around 4 AM local time (7 AM Eastern), which is about what we assumed. His appointment was the earliest we could get it at 8 AM, so we had a couple hours to waste. We tried to keep him busy with breakfast and Mickey.
We left for the office about 7:25 AM and had an easy ~12 minute drive to the office. I used the map the office provided and it was relatively easy to find. We entered the parking lot – which was $3 and required cash. I don’t always carry cash so something to note for future trips.
We parked and waited a few minutes because we were early. I was able to easily check-in virtually through the link provided by the office. I got a text and an email when we entered the waiting room and when we were ready to be seen. In the meantime you could check your status in line.
We saw them set-up the green tent and once I received the notification they were ready for us we went up. We waited maybe 10 minutes and was right on time for our scheduled appointment. We each had our temperatures taken on our forehead, cleared and given a sticker to wear on our shirts.
We headed into the office. They gave me a clipboard of information to confirm and we went into our room. We saw no other patients. We first met with a nurse to go over some of Jonathan’s basic information and to get his vitals. After a short wait we met with Dr. Farr to discuss Jonathan’s health history. This included any trips to the emergency room, epi pen use, foods he eats, foods he avoids, etc. He also answered any questions we had and talked about the program in general.
Jonathan then began his testing and had his skin prick test. For him, they had him lay on my chest and then administer the test. I’m sure they’re thinking is that I will keep him more calm and can hold him down if necessary. Jonathan was NOT a fan. He cried pretty much for the whole 15 minutes. See that big one on the left side of his upper back? That’s for peanut.
They scored his skin prick test and gave us a copy. There really weren’t any surprises – peanuts, milk, eggs, almonds, walnuts. However, he did react to cow milk, denatured cow milk, goat milk and denatured cow milk, so I have a feeling that allergy might be a long road to tackle. They gave us liquid Benadryl for him to take to relieve his back, but he wasn’t having it. I took them with us in case I could convince him later. I couldn’t but with time and a bath, his back swelling went way down and looked much better.
We received our paperwork for his blood draw and was told to cross the street to the other building. This sounded so simple we didn’t ask any additional questions. Well, we got outside and realized it wasn’t as simple as we thought. The office for the initial visit is on the 2nd floor and found the stairs right outside, but it didn’t seem like there was any way to get to the other side. The lady sitting in the green tent could tell we were lost and pointed us in the right direction. However, I think it’s also worth noting the main building entrance on E 28th St. is set up (almost like it’s on the 2nd level), so you have to walk through the parking lot.
I’ve put together the map below in hopes of helping others with the logistics of the first appointment. Maybe we just didn’t get it, but I can’t believe others haven’t had the same thoughts??
#1 – Parking lot entrance where you will need $3 cash.
#2 – Location of the green tent and close to the entrance of the clinic.
#3 – Location of the green tent for the main building and lab draw.
“S” – Location of two sets of stairs when you need to go from the initial appointment to the lab draw. The yellow dots also walk you through where to go.
Once again I checked in virtually for his lab draw appointment. We had to wait about 10-15 minutes just because we were early. Right on time at 10 AM, we were notified they were ready and we walked to the green tent. We already had our stickers giving us clearance from before, so we were free to head up the lab. Once at the lab, we buzzed so they could let us in. We were the only patients there and saw no one else.
We have Blue Cross Blue Shield PPO, so we paid our $500 lab deposit and were taken back to the blood draw room. Jonathan sat on Ken’s lap and was initially squirmy. Surprisingly he relatively quickly settled down and they were able to take their necessarily vials without tears. I’m honestly not sure how they did it, but it was amazing. The last time Jonathan had a blood draw, it took about four of us to contain him and it involved A LOT of screaming/crying.
When it was all over he got to pick out a toy from their treasure chest. He picked two ducks – one for him and one for Clara. However, he still hasn’t given it to Clara and has instead staked claim to both ducks. HA! He also got a little box of juice and we were on our way.
When we were all done it was about 10:30 AM. We headed back to the hotel for some lunch and of course Jonathan fell asleep. We decided to wake him up when we got back to the hotel so he would eat.
He ate great for lunch, but of course would NOT take a nap. Apparently his little 10 minute nap in the car was all he needed. We struggled to get to him nap for a good hour or so before we threw in the towel. In the meantime Ken ran to Target for a couple items and picked up Chipotle for lunch.
We decided to stay in the hotel otherwise for the rest of the day to limit our exposure to others. For dinner that night we had take out from The Habit Burger Grill again (my chicken sandwich was REALLY good) and went to bed early.
Day #3 – Travel Home
We flew home on Tuesday, June 16th. Our flight was supposed to leave LAX at 7:00 AM and arrive in DTW at 2:19 PM. Instead our fight was delayed over 1.5 hours because of a plane issue. We left LAX at 8:33 AM and landed in DTW at 3.46PM.
We initially chose this departure time to get back home at a decent time and figured Jonathan would be up early in the morning anyway. We were right and leaving our hotel at 4 AM wasn’t an issue. We packed up most of our things the night before, so we had minimal items to pack that morning.
Even though our flight was delayed, Jonathan did really well. He refused to wear a mask again, but he was also snacking constantly. He slept a lot better the night before, which I think helped in his overall mood. We kept him busy on the plane again with his tablet, games, removable stickers, crayons and his little people.
The security line at LAX in Terminal 2 wasn’t very long and didn’t take much time to get through. The process was the same as we encountered through DTW on the way out. A lot of stores and restaurants were closed, but we were able to find a few snacks at the CNBC store, they also had disinfecting wipes. However, social distancing in the terminal was almost non-existent. The way the terminal is set up with most gates being towards the end, everyone gets crowded in one place. We were originally scheduled to go out of gate 28, but ended up going out of gate 25B. This was probably my least favorite part of the trip and made me the most uneasy about flying during this time.
It’s nice to be back home, but I’m also really glad we made the trip. We now have the long ~12 week wait to get Jonathan’s results. I’m hopeful that maybe it won’t take 12 weeks, but I also know that realistically it could be longer. Either way, I’m glad that we got the process started. The first appointment is a necessary step towards food freedom for him and our entire family.
Costs
Below is a cost snapshot for this trip.
Flights: Flights were the biggest chunk of the trip at $496.20 per person. We also checked a bag both ways ($30 each way) and parked near the terminal at DTW for $26/day.
Hotel: Our hotel was $178.48/night plus fees.
Car Rental: Car rental for a full-size car was $69.34/day plus fees and gas tank fill up at the end of the trip.
Food & Misc.: Food includes food purchased at the airport, takeout in CA and a quick trip to Target for a couple small items I forgot to pack.
Please let us know if you have ANY questions about our trip, our appointment or the program. We would be more than happy to any questions you may have or help in any way possible.
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