Another SoCal trip in the books! A couple weeks ago we travelled back to Long Beach for Jonathan’s long-awaited Launch Visit. It’s during this visit we would find out exactly what his plan would entail, how many visits would be in his plan and he would be challenging his first foods!!
Day 1 – Travel to CA
We flew out to Los Angeles on Sunday, November 1st. After our last trip where we arrived way too early for hotel check-in, we took a later flight this time. We left Detroit around 1pm and landed in L.A. a little before 3pm. We flew Delta again and they are still blocking the middle seat and passing out a generic snack/water to everyone.
We noticed the airports – especially LAX were much busier than when we were there in June. However, most of the shops and restaurants were still closed at both DTW and LAX. We were able to navigate around LAX a lot easier this time as we knew our way around to baggage claim and the car rental buses.
The car rental buses seemed to be running more frequently this trip – to accommodate the increase in passengers. However, we were the only ones who rode it all the way out to the lot, everyone else got off at other terminals.
We rented a car through National again because they allow you to pick your car and go without speaking to anyone first. If you join their Emerald Club (which is free to join), you can pick any car in the Emerald Club line and go. Ken had 2 free car rental days, so we utilized those to save some money.
Once we had our car, we started on the drive out to Anaheim. We decided to stay in Anaheim this trip honestly to save money. It’s a longer drive to the clinic (~25 minutes), but we had a decent amount of Hilton Honors points that had built up over the years. The Homewood Suites by Disneyland in Anaheim offered the best value when it came to points per night. We were able to stay for the entire week on nothing but points. We did have to pay for parking, taxes and misc. fees, but it came out to be a fraction of what we would have paid otherwise.
The hotel location was really good and located close to numerous restaurants and a Target for groceries and other essentials, etc. The hotel was not very busy, but they didn’t seem to be spacing out guests at all. Of the four rooms around us I think three were occupied. It was rare for us to see another person in the hallway or elevator, but it still seemed odd. I figured they would space people out a little bit.
A couple other notes about the hotel – the hotel pool was open and reservations were not required. The front desk said the hotel was so empty they would never reach pool capacity. Breakfast was a pre-packaged to-go bag from the front desk. It contained juice, a muffin/danish, apple and a Nature Valley peanut granola bar.
Day 2 – Patch Placement
Day 2 was Jonathan’s patch placement. Patches are placed during this visit to simulate the gut’s reaction to various foods. The cells on your back very closely mimic those in your intestinal tract, so it’s a good indicator of how your body might react. The patches are the same foods we tested during our skin prick tests in June. It gives SoCal more data points and helps them determine if your plan needs to be altered at all.
We had an 8 am appointment and got to the office about 7:30 am since they told us to be there 30 minutes early. Well, that was a huge mistake as they were understaffed this day and we didn’t even go in for our appointment until 8:50 am. Once we were inside the appointment did only take the quoted 15 minutes, but getting inside was a process.
The area where they do the patch placement is VERY small. It was just a curtained off ~ 5′ x 10′ area, with another family directly behind the curtain. You could hear everything the other people were saying and vice versa. Not very private. It’s not like there’s a lot of private medical information being exchanged, I just expected it to be more separate.
Jonathan’s patches were placed on his back and Tegaderm (basically a large band-aid) was placed over the top of it all. We were given a dose of liquid benadryl based on Jonathan’s weight for later as needed. Once the patches are placed Jonathan couldn’t sweat or get wet in anyway. Both could make the patches come off and it’s imperative the patches stayed in tact for 24 hours.
We stayed pretty mellow the rest of the day after getting back from the appointment. We immediately put Jonathan into footie pajamas and kept the room cool. He seemed fine all day until right before bed. Around bedtime he started trying to scratch. We gave him some Benadryl as a precaution and sent him to bed. We also had some extra band-aids on hand just in case the sides of his patches started coming up.
We had two takeaways from this day. Number 1 – This appointment should be listed as a “Nursing Visit” when you check-in online. This wasn’t mentioned in ANY of our paperwork and being new how were we supposed to know? Patch placement isn’t an option at all and isn’t listed under “Nursing Visit” They could easily mention this in the email describing where your visits will be each day. Number 2 – be sure to bring your scenario kit medications if you’ve filled any at home. They asked for the scenario kit medications and looked them over at the patch placement. Luckily I had brought them to this appointment just in case.
A little secret about this day (a lot of people know, but still) is that your child’s plan is usually available on the Athena portal right after your patch placement. For us, I got an email on the way back to the hotel. Once we attempted to put Jonathan down for a nap I dug in to see what it would entail.
Day 3 – Launch Visit and First Challenge
Day 3 is the day everyone waits for impatiently – Launch Day. Also known as the day you actually get your child’s plan and found out just exactly what the journey will entail.
Jonathan started complaining about his “band-aid” around 5am (we always stay on Eastern time and get up around 3am local time). He made it through though and we got right in for his appointment at 8am. Once the patches are removed they wait 10 minutes for the reactions to appear. Everyone reacts differently and no two kids will be the same. After the 10 minutes Jonathan had like no reactions – except for the irritation from the tape.
As I mentioned above, this test is done to see how the skin cells on your back react to certain foods. These skin cells closely mimic how one’s gut will react. It’s another tool SoCal uses to determine if the food dosing plan needs to be altered or if the food might need to be eating “in volume” (added to a carb – rice, etc.).
While we waited for Dr. Farr to come in and explain Jonathan’s plan we completed Jonathan’s first food challenge! This particular challenge was for poppy seed. We were told to open/grind the seeds with a mortar and pestle and then mix with whatever food we were going to use. For the challenge we used apple sauce. Jonathan was hungry so he ate it right away.
After eating the challenge food he had to exercise for 5 minutes to get his heart rate up and see if it triggers a reaction. We stayed in the room for this so he ran from door to wall, jumped up and down, jumped between dots, etc. It was a workout for Mom and Dad too as we had to keep encouraging him and doing it with him. After 5 minutes Jonathan got back on the table and they monitor his vital signs looking for a reaction.
By the time we were done with this, Dr. Farr came in and explained Jonathan’s plan to us. I will go into further detail on this separate post, so it’s easier to reference in the future.
Dr. Farr answered any questions we had and explained what foods the recommended foods help – apple is for cashew, pear is for hazelnut, stone fruit is for peanuts/almonds and soy is for peanuts.
The appointment this day took 1.5 hours, not the 3 hours the clinic prepares you for beforehand. We did record the part of Dr. Farr explaining Jonathan’s plan. We haven’t listened to it again, but I know a lot of people recommended recording it for the future.
Day 4 – Food Challenge Day #2
Back at the clinic for our last set of food challenges. Today we saw Nurse Practitioner Kellie Cusick and challenged chia seeds, macadamia nut and coconut. Jonathan took his chia seeds down with applesauce no problem. The macadamia nut was a little challenging as he had a texture issue. Coconut was challenging at first with coconut milk as the volume was just going to be too much for him. We switched to coconut flour with applesauce and it went down fine.
After each new food he exercised by jumping on a little trampoline for 5 minutes. We really had to encourage him to jump the whole time, but we got there. Just like the day before, his vitals were monitored after exercise to watch for a reaction. I forgot to look how long we were there this day, but I think it was less than an hour. It was pretty quick in and out for us which was great.
One of my favorite things that SoCal does for it’s patients is the passport. It is their passport to food freedom. With each food they successfully challenge and pass they get a stamp for their passport book. It’s such a great visual for parents and patients to see how far they’ve come in the program.
Days 5 & 6 – Food Introductions
The last two days of the week consisted of introducing Jonathan’s first treatment foods. These foods included denatured (boiled) camel milk (0.6ml), pistachio (15mg in gummy form) on Thursday and flax (10mg) and chestnut (30 mg in gummy form) on Friday.
Introduction days are much less low key than challenge days because once a food is given the patient has to sit still for 15 minutes in order to not increase his or her heart rate and the chances for a reaction. We kept Jonathan busy with stickers and his tablet. The gummy introductions were extremely easy as he gladly ate the gummies. The denatured camel milk was a little trickier as he did not like the taste at all (it’s pretty salty) and had to be coerced with apple sauce.
We saw Kellie Cusick each day Wednesday – Friday and she was amazing explaining what was going on and answering all of our questions throughout the process. I know we are not seeing her at our next trip, but I would gladly see her every time.
Once completed with all of our appointments we received our patient summary for the trip which included information on how to grind nuts, our scenario kit, and our plan progression. A lot of the information was really helpful, however, I was surprised to not see any information on how to denature milk. I had saved a post by another TIP parent on Instagram, but otherwise I wouldn’t have known exactly what to do.
We also left that day with two large bags full of flax seed, pistachio gummies, chestnut gummies that we would need over the next eight weeks.
Day 7 – HOME
Saturday was FINALLY our day to go home. We took the first flight out of LAX, which is so easy when we stay on Eastern time. The airport was pretty quiet and there was limited availability for food. We made it back to DTW by early afternoon and begun getting everything ready for our first at home dosing day on Sunday!!
Costs
Below is a cost snapshot for this trip.
Flights: Flights were the biggest chunk of the trip at $376.20 per person. We also checked a bag both ways ($30 each way) and parked near the terminal at DTW for $26/day. Flights were actually cheaper this trip than our last one in June.
Hotel: We had accrued Hilton points over the years and never seemed to use them. To save money, we used almost all of them on this week’s stay. At 54,000/night we used 324,000 total points. We just paid $22/day for parking and misc. fees/taxes.
Car Rental: Car rental for a full-size car was $320/week plus fees and gas tank fill up at the end of the trip. Ken had 2 free days to use, so we put those to use and saved some money.
Food & Misc.: Food includes food purchased at the airport, in CA and a grocery store trip for Jonathan. We also went to the Aquarium of the Pacific one day for $19/person.
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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Disclaimer: This is our experience and Jonathan’s specific treatment plan. His plan is customized for him and would vary from patient to patient. Our experiences are as of this trip and may vary for later trips.
