We finally had our long awaited launch week at the SoCal Food Allergy Institute! We got the email in early June that they’d finished analyzing all of the information that they obtained during our April visit and they were ready for us to return and start Jacob’s TIP treatment.
We were in sunny SoCal from 8/16-8/21 with appointments every single day. Even more exciting, we were able to bring our 20 year old, Novali along with us for the week.
Logistics:
We flew Southwest from Chicago Midway to Long Beach. Both ways went smoothly. We flew in on Monday morning and I was super anxious about possible delays because we had our first appointment that same afternoon. But all worked out well! We landed with enough time to grab lunch before heading to the clinic.
We rented our car from Hertz using their Gold Member program. One tip, even if you’ve prepaid for your rental, continue checking their rates! The week before we traveled I realized they’d lowered the prices and I was able to upgrade while still getting a refund back! The previous trip we used Autoslash/Priceline to book.
We stayed at the Staybridge Suites in Irvine again. The price was right at $125/night for a king bedroom suite (this was a special rate for SoCal families). The rooms are not super fancy but nice! The kitchen is a must for us! We love that they have actual bedrooms because we were able to put Jacob to bed at night and stay up prepping for the next day and watching a little tv to unwind without disturbing him. We also made use of their laundry room. Free parking and breakfast are a plus. The commute to and from the clinic was anywhere from 25-45 min depending on time of day. We’re so used to driving in Chicago that we didn’t mind it too much.
My tips for Staybridge: bring your own coffee and filters, coffee is super important to me and the one they provide is just ok. No Keurig. Also no Netflix, etc. We brought our Roku Express and it worked like a charm on their wifi!
Ok, on to the important stuff!
Appointment 1 – Monday:
This appointment was a nursing visit for lung testing and a patch test placement. They did a PFT to test his lung capacity and make sure there was no inflammation. They placed a 24 hour patch test. It tested the same foods that were on his skin prick test in April but the patch helps to determine how his gastrointestinal system reacts to his allergens. So it tests for the possibility of delayed reactions or GI symptoms like vomiting.
It was a fairly quick visit then we went to pick up grocery orders from Target and Whole Foods and checked into the hotel for a relaxing evening.
He couldn’t sweat, swim, bathe, etc. with the patches on so we chilled. He was itchy and uncomfortable that night and the next morning. We gave him Benadryl and did our best to distract him!
Appointment 2 – Tuesday:
This was the big appointment where we got Jacob’s treatment plan! We returned to the clinic that afternoon, 24 hours after the patches where placed to have them removed. Dr. Ripp came in to talk to us and go over all of the treatment details. We found out that he’s allergic to more foods than we realized, some of them anaphylactic (ANA). For example he had soy, sesame, and sunflower come up as ANA and we had no clue! They treat all sensitized foods plus the ANA foods so treatment plan is for 20 visits which will likely average out to about 4 years. We are treating 25 foods and 13 of them are ANA. So we’re in it for the long haul! Dr. Ripp was so patient and thorough. She answered all of our questions and Jacob began his first food challenges. During that visit he challenged chia seeds.
After that we were tired and headed back to the hotel for dinner!
Appointment 3 – Wednesday:
Now that we had all of the treatment information, we continued to challenge foods. These are the foods that testing determined his body can tolerate. Had we not started this process we would have continued to avoid them for who knows how long. Now’s he’s eating them daily!
We had an 8 am appointment and J challenged poppy seed, chestnut, and pine nut. He passed all 3 with flying colors. We saw Anita as our PA that morning and she was wonderful.
Then we had the whole day free. It was a little drizzly and overcast so we decided to drive up to LA at my daughter’s request. We found a cute playground to let J burn some energy and we went up to Rodeo Drive.
Appointment 4 – Thursday:
Another 8 am appointment and we overslept and had to run out the door! We were so tired at this point! Our PA that morning was Torrey. Jacob challenged and passed pecan, and introduced alfalfa.
Introductions are foods that he’s mildly allergic to at this point (we won’t get to his ANA foods for a long time) and he will micro-dose these foods at home for 8-12 weeks, increasing the dosage weekly, before coming back to challenge a larger amount. We were told alfalfa would help with his legume allergies.
We also got to meet Dr. Randhawa himself! Dr. R founded this clinic and his vision is the reason why we’re here. He has helped thousands of patients achieve food freedom. He used to see every patient himself but the clinic has grown so much that now he has a team of providers and he only sees the toughest cases in person. So most patients never actually get to meet him. However he creates and oversees EVERY patient’s treatment plan which is pretty mindblowing to me. He happened to be walking past our room while Jacob was exercising and he stopped to chat with us. It was so nice meeting him but we hope to never need an actual appointment with him!! We’ll settle for seeing him in the hallways.
After all was well and good, we spent the day at the Aquarium of the Pacific.
Appointment 5 – Friday:
The last one for the week! Another 8 am and J introduced mustard seed and macadamia. We had Marcella as our PA. We were told that our dosing cycle would be 8 weeks and given mustard and macadamia gummies to take home for dosing. The clinic formulates the gummies because the doses are too small for us to accurately measure at home! And they taste yummy, so far.
After this visit we had a nice lunch and spent the afternoon at Seal Beach. All this mama wanted was a few hours at the ocean!
Now we are home and set to return in October for visit # 3 to challenge alfalfa, mustard, and macadamia. We will introduce walnut, flax seed, and kidney bean at that time (this whole week counted as visit 2).
All of the foods that he challenged are now part of what’s called morning “maintenance”. He eats a specific amount daily in order to solidify tolerance and help desensitize his more severe allergens.
Only 19 visits to go!
Oh, I wanted to list out the “safe for us” restaurants that we ate at this time around (always call to make sure they can accommodate your allergies): Sensitive Sweets, In-and-Out Burger, Jersey Mike’s, Rafael’s Pizza in Santa Ana, McDonald’s, and Noble Bird Rotisserie. Noble Bird is run by a TIP mom! Syed and I also snuck out one night to have dinner on our own at Ra Sushi.
Whew! That was a lot! If you read this far I appreciate you!
XOXO