Hi Hive! It’s been awhile, but we did go to our first in-person appointment at SoCal Food Allergy back on June 11th, 2018. The first appointment was all about data collection, and was a 3-4 hour appointment just like they said.
They start by asking you a food intake questionnaire. We did this in person, but it looks like they’ve now streamlined it so you get an email asking you to fill out the questionnaire in a Google Doc before you even go into your first appointment. They just continue to find ways to be more efficient, and are going through the waitlist at an incredible pace!
Anyway, this food questionnaire is for them to get a historical look at what kinds of foods your child has eaten, how frequent, and if there were any allergic responses to foods in the past.
Next, they’ll have your child do a skin test. The skin test does not actually prick the skin. It is superficial, so they simply press a small amount of each allergen topically onto the skin. Some of the different allergens they press into the skin are in the picture on the left below. On the right is my daughter’s skin reacting to the allergens they pressed onto her skin.
They had Lil’ Miss Louboutin lay there for 15 minutes without moving in order to give time for the skin to react. The stronger the allergy, the bigger the bump and the larger the circumference of red. It was very uncomfortable for her, but she was able to watch a show on my phone and that helped pass the time. When you go in for appointments, I highly recommend bringing an iPad to help distract them. SCFA has free wi-fi.
Once the 15 minutes are up, they’ll come in and measure the bumps with a little measuring tool they have. As you can see in the below document, there are two numbers – a numerator and denominator. The numerator measures the size of the bump, and the denominator measures the amount of redness. Anything 3 or greater is considered a positive reaction, meaning she is sensitive to that food in some way.
After this, they had us go downstairs to a Quest Diagnostics Lab to get bloodwork done. They collected about 8 vials of blood from her. If your child is under 50 pounds, it’s unlikely that you will be able to get all the bloodwork done at once. They will ask you to schedule a separate appointment at a Quest Diagnostics of your convenience to get the remaining bloodwork done.
This was pretty much the entirety of our first visit. We did not get to meet Dr. Randhawa until the second day of our next visit (a two day visit), which was scheduled 7 weeks after this visit. They need at least 6 weeks to get the results from the bloodwork back.
I know everyone is curious about costs. I’m not sure how much other OIT programs are, but your out-of-pocket costs at SCFA will be a minimum of $4,500 per year, charged quarterly. So every 3 months, we pay $1,125. Then on top of that, you might have the standard medical costs based on what your insurance covers or doesn’t cover (things such as blood work, office visit copays, etc.). SoCal Food Allergy has been very clear about costs, and will provide you the billing codes up-front so you can check what is covered by your insurance plan based on the billing codes they submit.
If you’ve gone through OIT, how was your process similar and/or different? Please let me know what other questions you might have about this whole process and I’ll do my best to answer in future posts!
wonderful pomelo / 30692 posts
Thank you so much for sharing!! I can’t wait to hear more about this journey!!
wonderful kiwi / 23653 posts
This is so so interesting and I can’t wait to read about the next part of your journey! I def wish that this is more affordable with more locations so more kids can utilize this amazing service!
guest
Is there a minimum age for how old your child needs to be for immunotherapy? Best of luck to lil Miss L!!
guest
Can she do OIT for more than one allergen at a time?
clementine / 874 posts
Love the updates on this! My family has lots of food allergy history, so this may be something we need to do.
pomelo / 5866 posts
Thanks for the update. I was so excited to learn about them. We made it to the top of the waitlist and were on an orientation call recently. Everyone is really professional and nice. We decided not to go for it right now but may consider again later. (In case anyone is wondering why, the cost plus my daughter’s allergy is slight and it doesn’t really bother her. Mainly she wants to eat cheese and ice cream occasionally but we, as a family, are moving toward plant based diet so we are ok with alternative dairy free products.) We put ourselves on the waitllist again in case we change our mind. We were on for about 6 months and we were number 1000 or so. Like you said, they are getting more efficient.
guest
I took my son this summer to Dallas allergy partners to look into OIT for him. He’s allergic to peanuts and cashews and shellfish. They would do peanuts and shellfish at the same time. They did the skin prick in the office but not blood work. It’s a minimum of 20 office visits. Does it take about the same for you?
I had to call back to get financial info and scheduling info and I never did it. Or I should say I haven’t followed up yet. We live 3 hours from Dallas and at a minimum, we are looking at a two year process if we went to Dallas monthly. There’s no way we could handle weekly visits.
Plus, my son is super active. The food has to be given at the same time each day and then the child be calm for at least an hour afterwards while you watch for a reaction. How do you fit that in your day?
Right now it seems like a lot of logistical problems. If they did it where we live, I’d pursue it further.
guest
Wait, I should have said peanuts and cashews at the same time so if he had a reaction, we wouldn’t know which one he reacted to.
pea / 8 posts
Thanks so much for blogging about this! I wouldn’t have heard about the program otherwise or put our name on the waitlist 6 months ago. We had our phone orientation yesterday and it was really informative. I especially appreciated the explanation of how this program is different that other OIT programs. We are going to put ourselves back on the waitlist to give us some time to do a little more research and save some money, but I think it’s something we really might do.
blogger / eggplant / 11551 posts
@C: They estimated about 16 months for Lil Miss L. We don’t need to go in weekly like some other OIT programs I’ve heard about. We go in every 6-7 weeks for the next dosing phase, but in between those visits we dose daily at home. Did they say why they would do peanuts and cashews at the same time? For us, it’s only one treatment food at a time. Once they are cleared of one allergen, they move onto the next.
I will blog about the logistics in a future post!
blogger / eggplant / 11551 posts
@CookieMama: Yes, the differences between this and other OIT programs really stood out to me too. I wasn’t sure how I was going to make weekly office visits (which is what I heard you had to do in other programs), but was pleasantly surprised that it was every 6 weeks, which is way more doable for our schedule.
blogger / eggplant / 11551 posts
@Emileee: I’m not sure about a minimum age specifically for this program. I’ll ask them and get back to you!
pomelo / 5866 posts
Can you check your ‘read more’ link on your newest article? It says it is restricted. Also can’t expand article by clicking title.
blogger / eggplant / 11551 posts
@808love: Are you still having this issue? It’s working for me, but if it’s still a problem I can’t fix it myself – the post is locked once it’s published. So I’ll have to see if the Bee’s can fix.
pomelo / 5866 posts
I got in and read your great post. It is still acting up but my phone settings may be the culprit?
pea / 8 posts
Hi Ms. High Heels! We got off the waitlist again and are now scheduled to travel to CA for my son’s first appointment in September. I am curious if the program is going well. Have you been happy with the treatment? If you have any update you’d be willing to share I’d love to hear it!
blogger / eggplant / 11551 posts
@CookieMama: So exciting! We hear the waitlist is now over 2000 ppl long! It is going so well, and we are more confident than ever that we made the right decision putting BOTH our kids in this program. It is life changing, and has given us such peace of mind. If you have FB, there is a great FB group they have that have all sorts of helpful details – it’s called “Southern California food allergy institute’s kitchen table”.
pea / 8 posts
Thanks so much for the update! That is so great to hear. I will definitely check out the Facebook group! I am really looking forward to getting his lab results and treatment plan after the first visit.