Finding Freedom: My First TIP Appointment and How I Got Here
Leading up to TIP: The Backstory & About SoCal Food Allergy Institute
I still can’t fully believe that I am part of TIP at the SoCal Food Allergy Institute. And quite frankly, there are lots of emotions. If you aren’t familiar with the SoCal Food Allergy Institute, it’s a facility paving the way to helping kids and young adults (up to age 21) with food allergies to finding their way to food freedom. While many who are familiar with OIT treatment may assume this treatment is the same thing, the SoCal Food Allergy Institute has a different approach. At SoCal, patients follow the Tolerance Induction Plan, aka TIP treatment.
While TIP also works to help desensitize the body through the gentle introduction of allergens, it is far more personalized than OIT treatment. With OIT treatment, the goal is to treat one particular allergy, and everyone follows a similar introduction pattern. However, at SoCal, the goal is to look at the entire immune system and work towards food tolerance through the careful introduction of the lowest sensitized foods first. Eventually, the treatment will build-up to the worse anaphylactic allergens. No two patients’ plans will look the same, as everyone has a different system, and SoCal recognizes that.
Another major difference is that SoCal welcomes any case, and will work to treat those even with conditions like asthma. OIT treatment is far more limited in who it will accept for treatment. And most importantly, from what I have heard, TIP is much more successful in the long run than OIT is. If you want to learn more about TIP click here, and if you would like to sign up for the waitlist, click here.
There are so many amazing groups on social media that are full of incredibly helpful information and insight into the program. I myself have found some amazing people online who have truly guided me through this program and the early process. If you are curious about it at all, I would recommend checking out the Socal Facebook group or looking for current patients on Instagram. There’s information there that really can only come from personal experience, and I will try my best to provide some of that as well.
My Waitlist Experience
When I first signed up to be on the waitlist, I had barely any hope of actually getting my turn in before I turned 22. Unfortunately, Socal only accepts patients from 6 months to 21 years. However, as long as a patient is still 21 by their first appointment, they can continue on past the age requirement. And once you are a patient, you are a patient for life, requiring yearly testing after graduation. I first heard about the program when I started getting more active on Instagram in October of 2018. I wasn’t sure how I felt about the program, and honestly thought it seemed too good to be true. But then, out of the blue, on February 3, 2019, I signed myself up for the waitlist. I did it on a whim. When I first posted about my first appointment on Instagram, I think I had said that I signed up for the waitlist in 2018. However, looking back on my emails, I realized that I had actually done it in 2019.
That just makes this whole thing a lot more surprising honestly. I was a number in the thousands on the waitlist. The estimated wait was about a year, which would give me roughly two months to get my first appointment before my 22nd birthday. Part of me wondered if there was even any point to putting my name in because it seemed so unlikely I would get in. But I did it anyway and I am so glad I did. Turns out that a bunch of people ended up declining treatment, and those who were still on the waitlist had a big drop in numbers on the waitlist.
I wasn’t aware of this at first. The waitlist system that they use does send emails and gives you the opportunity to check up and see what number you are on the waitlist, but I never checked because I didn’t think there was much hope because of my age. I was afraid to get too emotionally attached to the concept in case it never happened to me.
So flash forward to December 2019, and I got an email saying that I was in! I have email notifications on my phone, but oftentimes I miss the notifications. But for whatever reason, this email stood out to me. I remember the moment I saw it. I was already on my phone and all of a sudden I saw a subject title all in caps fly by the top of my screen. I immediately opened up my email and read the whole thing. Pure shock. Pure … holy cow… I’m in!! Admittedly, when I first saw that, I immediately felt my guard go up. I thought, “Okay so this could definitely be a big thing, but what if it’s a mistake? What if I don’t get in? My parents probably won’t want to go do it. I mean, is it even possible? … oh, wait … my parents don’t even know!”
The funny thing about the way I went about this, was that I didn’t even tell my parents when I signed up to be on the waitlist for SoCal. I didn’t tell them about the program or the fact that I signed up. I was so afraid that something would go wrong and I didn’t want to get my hopes up too soon. So after finding out I got in, I quickly filled my parents in. I did it with somewhat urgency because I was so scared to lose my place on the list. We talked about it as a family and I explained all I knew about the program.
After finding out that it was my turn, I did as much research as I could about TIP. I looked up just about every person I knew online that was saying they were part of TIP and asked them about it. I read almost everything there was to read on the SoCal website. And after about a day or so, my parents told me, “well it’s not really a question, we’re going to do this if you want to." Their response brought me to actual tears.
Going into this program I was anxious but so excited. With my age being close to the 21 years age limit, I knew that I could not waste time. Living with food allergies is really hard sometimes, and the idea that I might be able to live a little bit more freely was something that was too good to pass up. We had to initially call the office a few times in order to get the invoice needed to make the original payment and a few other things, which definitely worried me. But after we paid, we were able to schedule my very first appointment: January 13, 2020. My first appointment ended up being exactly a month from when I first got the email saying it was my turn! It felt like a good sign.
While I was excited about being a scheduled patient for TIP, I was also very nervous. I think that anything involving food allergies can be nerve-racking honestly. But during the holiday season, I did my best to focus on the holidays and push my anxiety to the side until the new year. So when 2020 hit, I felt that anxiety hit too. In order to prepare for the allergy testing that is done for the first appointment, I had to avoid antihistamines for 7 full days. If you know me well, you know that I am always taking antihistamines.
My environmental allergies are really bad and I am constantly needing to take meds. I could go outside and immediately get an itchy throat. For those of you who know about IgE levels and what they are, my IgE levels for ryegrass is 10.7 kU/L. For more reference, my worse anaphylactic reaction was to walnuts, and those IgE levels are at .34 kU/L. So yes, 10.7 kU/L is a BIG number. So going without for 7 days was terrifying for me.
The Anti-Antihistamines Week
Going on without antihistamines for a week was straight-up rough. I had such a hard time with it. A few days before, I deep cleaned my room. I vacuumed everything I could reach, and I kicked the pets out of my room just in case their hair might bother me. I didn’t want to have any possibilities of being itchy because I feared that being itchy would cause a full-on panic attack for me. Unfortunately for me, antihistamines are such security blankets for me, so it definitely felt scary going on without them for some time.
I was scared to eat, and I ate about a meal a day if even that. All I would let myself eat was boiled chicken, plain baked potatoes, and boiled carrots. While limiting my diet like this seems very extreme, I was just so nervous and eating anything else felt way too risky. I attempted to eat normally as I would, but I was so afraid without the extra layer of protection.
I soon found out that not eating was bad for me in a few ways. I found that I had really bad heartburn that was almost unbearable for the whole week. Then I also threw up two different days because of my birth control pill. I have found that not having enough food in my stomach when I take the pill makes me feel really ill and throw up several hours later. However, I haven’t had it happen in a while so it wasn’t until day 2 of throwing up that I realized why I was feeling ill. Ultimately I found that just stopping the pill for that week was my best bet, and things went more smoothly for me afterward. After this week of minimal eating, I found myself at 94 lbs, which meant that I lost about three or four pounds during that week.
During my anti-antihistamines week, I stayed inside as much as I could. I had two friends and my boyfriend come to see me and watch movies with me to help keep me sane. I felt so loved having their company and support. But even so, there were a few times I broke down and cried. I can’t fully explain what it feels like to starve yourself out of fear of food. And the four-hour drive to Long Beach, California from Northern California was not fun on the way there. I traveled with my mom, who probably knows me better than anybody. She saw all the emotions experienced that week.
There was the initial panic when I threw up (because at first, I thought I had the flu and was afraid I wouldn’t be able to go to my appointment) to the tears of joy I cried when all the testing was finally done. She stood by me like a true hero, constantly answering my questions of, “Mom are your allergies bad?” so I could gauge if the itchiness I was feeling was environmentally sourced or something to be really worried about. Thankfully for me, most of the time I was at my itchiest, she was uncomfortable with her environmental allergies too.
We drove to Long Beach the night before my first appointment. While my mom originally wanted to leave early on Sunday morning and get to Long Beach early, we ended up adjusting that plan. On the Sunday before my 9:00 AM Monday appointment, I was the itchiest I had been all week without medications. I was stressed out and nervous, and she decided that going at night would allow me to stay at home where I was more comfortable for longer. Throughout the drive over, I was uncomfortable, and I found myself especially nervous when driving through the mountains. However, I managed and was so incredibly happy when we finally arrived at the hotel. I didn’t eat at all on the drive over but did manage to eat a bit of boiled chicken that I had brought with me from home. I found myself anxious that night, but mostly really just wanting to get all the testing done so that I could go back to my normal ways.
The Day of My First TIP Appointment: Prick Test & Questions
On the morning of my first TIP appointment, I woke up with a strange mix of excitement and nerves. For the first time, I started to allow myself to realize that I was really in the program and I was really going to do this. I took a shower and put on a loose, comfy outfit on so that if the prick test left me itchy I wouldn’t have to deal with a fitted shirt that had the possibility to further irritate my skin. I lucked out because my hotel was literally four minutes from the SoCal Allergy Institute so that was truly convenient, especially as the office has a notice that says you may be asked to reschedule if you are later than ten minutes past your appointment time. I’ve yet to see how strict they are about that, but it’s definitely something to keep in mind. The night we drove up to Long Beach, my mom and I figured out where the Allergy Institute was located so the morning of, we knew a good idea of where we were going.
I’m not going to lie, the Institute was not what I expected it to look like. I feel like when I hear the word “institute” I imagine a huge fancy building. This was not exactly what it was like. The first part of the first appointment with SoCal is dedicated to prick testing and lots of questions from a doctor. This part of the appointment for me was at the Hillside location. After that, I had to get a blood test. That was done at the main location in the building right next to the Hillside location. I didn’t expect the offices to be spread out the way they were, or mixed in with other offices in the building. However, it wasn’t too difficult to find our way and if we had any questions, there were several people who were so happy to help. There are also a few emails that they send a few days before the appointment that tell you which building to go to first.
The staff themselves at SoCal were seriously so nice. Everyone had a smile on their face when I came in. I saw a few other TIP patients while visiting the clinic, but no one as old as me. It was mostly moms and their kids that particular day (though I know I’m not the only 21 years old doing the program). That felt a little bit weird honestly though. Most of the documents that they have at the clinic are meant for minors (especially little kids) and their parents. So a lot of the time I was signing as patient and guardian on forms. Most of the questionnaires and such that I’ve had to fill out before the appointment directed the questions like “does your child…?” but I just answered as if it were directed to me directly rather “my child” haha. They told me that was the right thing to do.
Once I arrived at the Hillside location, they took me in pretty quick and I was welcomed with “Welcome Jessica!” written on the paper strip on the patient chair/bed thing (don’t actually know what those are called??). I’ll attach a picture to explain better haha. The nurse told me they wanted everyone to feel welcomed as we start our big journey through TIP. She weighed me and measured my height and then wasted no more time getting the prick test started. She told me I was going to be tested for tree nuts, peanuts, coconut, and I think mustard as well. She gave me a blue cover for my front so she could expose my back for the test. As soon as I had changed and was lying stomach down on the chair/bed thingy, she brought out the prick testers. She had two sets that she placed on my back for ten seconds each. Then she told me that I would have to wait about fifteen minutes before they could wash it off and put cream on it.
Going into the appointment that day, the prick test was one of the things I was most concerned about. When I was twelve, I had a prick test that went really badly and ended up needing an epi for it. What I have learned since my appointment, however, is that a prick test that ends up causing a bad reaction is fairly rare. The way a prick test works is that the things that are placed on the skin scratch off a thin layer of skin to expose your body to the allergen. As long as the test is done properly, the exposure will not get to the bloodstream. If it were to reach the bloodstream that could cause a bad issue. Finding this out definitely helped me get through the testing. She knew I was nervous so she promised to check on me a lot. And while I was lying stomach down being testing, a doctor also came in and asked extensive questions about my allergy history and family background. I was so happy that my mom was there because there were some things that I didn’t even know.
A few of the questions that I remember (there were so many more though) him asking were:
Do you have any other conditions like asthma or eczema, and do you take anything for those?
(for my mom) What were the first signs of allergy that you noticed?
How have you been tested before?
Have you gone into anaphylaxis before? What happened? What did you notice first? How did you respond to the medications?
Do you have siblings or other family members with food allergies or environmental allergies?
(for my mom) Are you from the area? If so, how many generations have been living in the country?
(regarding my dad who’s an immigrant, now a citizen) Where was he born? How long has he lived here?
How much of _________ do you eat in a week? In a month?
The doctor went over the questionnaire that I had to fill out before the appointment (it’s online, and the link is sent to you once you are served). He asked about everything I didn’t eat and asked me to describe all my bad allergic reactions in detail. The whole while I was in my head worrying about the prick test on my back, so talking about really scary reactions wasn’t ideal for my anxiety at that moment, but it turned out okay. It wasn’t long into the fifteen minutes that I started feeling itchy.
The top of the left side of my back was really itchy. The doctor sat in a chair with a computer while my mom and I talked to him (remember I’m still basically face first on the bed thing haha) but the nurse came in a few times to see how it was going. One of the times, I asked her what the top left one was, and she informed me it was walnut. Figures! Even though it was not the most comfortable way to answer questions about my entire life with food allergies, I also found talking and recalling things distracted me from the testing a little bit.
After fifteen minutes, the nurse came in and used a wet cloth to wipe off my back and then added Benadryl cream all over my back. She asked me how I was feeling, and I truthfully felt okay despite some itching on that one spot of my back and some anxiety. I’m guessing the prick test was probably done within 30 minutes of me being there, but we didn’t finish talking to the doctor about my allergy history until about 10:33 AM. So the first part of the appointment took about an hour and a half. Before my mom and I went on across the street for my blood test, the doctor listened to my lungs and asked me how I was doing again. He cleared me and we were directed by the front desk lady on how to get to the lab.
The Day of My First TIP Appointment: Blood Test
The lab was a lot smaller than I thought it would be as well. But literally every staff member was so friendly and easy to talk to. Normally, I am absolutely terrified of needles and getting blood drawn. However, after such a long week, I think I was ready to just get it over with. I was called back as soon as I got there, as I was the only patient at first. I informed the lady that I get pretty nervous about getting blood drawn and that I normally get dizzy afterward. She was so incredibly understanding and I felt comfortable with her right away. They had really nice chairs with armrests for patients. I had been told multiple times from hospital staff that my veins are pretty small and hard to find, so sometimes it takes a few pokes! Definitely not great for my anxiety! However, this lady was so nice and good at her job; she got it in on the first try.
I had been warned by a few other people who had been in the program that they take several vials of blood, and so I was kind of prepared for that. They took about six from me total. It felt like forever getting all that blood, because, as the lady explained, they only had small needles so it took a little bit of time. I felt a bit more anxious near the end, but the lady with me talked to me about my allergies and about school and that definitely helped. Afterward, I was dizzy and a bit out of it, but I was allowed to stay seated for as long as I needed before I got up. I don’t exactly know the time stamp with this part of the appointment, but I think we finished up before 12 in the afternoon. And once I was done with the blood test, I was done for the day! I cannot even begin to describe how incredibly happy I was after that was over. And I was okay! No reactions, though I did find myself pretty tired for the rest of the day. My mom and I went back to the hotel and watched movies before heading home the next day. First appointment down!
I will be returning again for my second appointment at the beginning of March and will make sure to document that as much as I can as well. That appointment will be a two-day appointment because I will be doing patch testing. I will have to have some type of amount of allergens on my back for about 24 hours. I don’t know the full details yet, but I know that the first day I will go in, and they will set of the patch testing. It’ll be tapped down to my back for 24 hrs, and I have to go about my day without taking it off. The next day, I come at the same time as the first and the patch test will be taken off me and we’ll see the results of the patch test. From what I’ve heard, I will also find out the results of my blood test and see my treatment plan that day. I don’t know what I’ll actually be doing for treatment until that day, so there are still lots of unknowns, but I promise to share more later!
If you have any questions about anything in my blog feel free to comment here on the blog or message me through my Instagram @nutfreementality. I can also be reached via email at firstname.lastname@example.org.