I received this in my inbox the other day:
Hi Mrs. High Heels! Welcome to the Southern California Food Allergy Institute (SCFAI). It is our pleasure to inform you that you have reached the top of the waitlist. We are excited for you to join the Tolerance Induction Program at SCFAI – the largest and safest food allergy treatment center of its kind.
We have been on the waitlist for Oral Immunotherapy with one of the most innovative, renowned doctors in the field since April 7th, 2017, so it’s been nearly a year of waiting to see him. They have been working hard to build more efficiencies and whittle down the waitlist because the demand is so high, and have made it their goal to see 350 new patients each year. We were #778 when we signed up, so it sounds like they’re right on target.
In order to get started, I needed to schedule an initial orientation (via teleconference) to set expectations and answer any questions I might have. They also sent me a thorough and informative guide regarding the process as we entered treatment. They were clear, detailed, and upfront … already leaving a stellar first impression and instilling confidence in me as a parent putting my daughter’s life in their hands.
I N T A K E P R O C E S S
The intake process is conducted over 2 visits. A patient’s first appointment typically lasts between 2-3 hours. During that visit, their physician and healthcare team will record the patient’s medical history, review prior medical records, conduct a full examination, and answer questions. Parents should anticipate that their children will undergo laboratory diagnostic testing, skin prick testing, lung function testing, and patch testing, at a minimum. Based on the results of these tests, the medical team will design a specific treatment plan for the child to overcome their food allergic disease.
SoCal Food Allergy conducts the most extensive diagnostics in order to obtain a complete picture of the child’s individual health and readiness for food allergy treatment. The diagnostic testing phase allows the medical team to evaluate at least 300 biomarkers for every patient.
P R E – T R E A T M E N T P R O C E S S
Responsiveness to food treatment depends on a patient’s immunological, pulmonary, skin and gastrointestinal health. Therefore, before starting food immunotherapy, the medical team will diagnose and treat any underlying and connected health conditions that the child may have. If necessary, and based on the intake and diagnostic results, they will create and implement an individualized pre-treatment plan for the child. For example, some patients may undergo sublingual immunotherapy (SLIT) for environmental allergies.
The successful pre-treatment of underlying and connected conditions is necessary for immunotherapy to take maximum effect. It also results in fewer side effects during food treatment.
W H A T T O E X P E C T
Their tolerance induction program (TIP) is individualized for each patient. Upon completion of the program, patients are able to safely eat a normal U.S. dietary intake of their previously allergic food.
- Office visits are only required every 5-8 weeks.
- Predictive modeling is key to designing what dose of food protein the child will tolerate. SoCal Food Allergy has collected over 45 million patient data points, generating robust analytics that helps them create the safest and most effective treatment for your child.
- Allergic foods are introduced in their clinic under monitoring at the eliciting dose established by their medical team for each patient.
- Home-dosing occurs between visits, including 24/7 on-call support.
- Most foods are treated in approximately 6 weeks, culminating in an in-clinic challenge and “graduation.”
- Patients consume a regular “maintenance” dose of the formerly allergic food after successfully completing a food challenge. The size of the maintenance dose may be reduced after further testing.
- “Graduates” are able to safely eat ANY amount of whatever food they want.
Most SoCal Food Allergy patients achieve full tolerance for each allergenic food in just two clinic visits over a period of 5-8 weeks. After that, patients are able to safely eat that food, just like their friends
and peers.
* * * * *
I was just reading an article yesterday about a 12 year old girl who died after having a reaction to a granola bar that her family said she had eaten countless times before (the article didn’t say, but I’m assuming the bar didn’t actually contain nuts, but might have been “made in a facility with nuts” or been cross-contaminated somehow). That is a parent of a child with food allergies’ worst nightmare. Imagine you did everything you could, and a food you thought was safe, somehow still managed to take the life of your child. I don’t even want to think about it. This treatment, if successful, would take a huge weight off our shoulders. That last bullet point above carries with it all my hopes of having a child with a life-threatening allergy – safely eat ANY amount of ANY food. That would be a dream come true.
I look forward to sharing our progress with you as we begin our journey into Oral Immunotherapy.
cherry / 211 posts
We have a peanut challenge test scheduled the end of the month, and I am so nervous. Our worst allergy problem is actually dogs. We have to decline any parties and play dates at homes where there are dogs. I get palpitations whenever we are at a park or outdoor events where there are dogs because some dog owners are pretty lax about letting their friendly dogs sniff around and approach kids. My LO gets pretty severe reactions, and the worst part is, my kids LOVE dogs.Their favorite game is to pretend like they are puppies.
eggplant / 11716 posts
Can’t wait to follow your kiddo’s journey through OI. Can’t wait to hear how the next steps go.
nectarine / 2242 posts
Wow this is so exciting!! I can’t wait to hear how this goes for you guys!
persimmon / 1095 posts
Such a neat process and it’s amazing they can do this! Does insurance cover the treatment?
blogger / eggplant / 11551 posts
@alphagam84: they do take insurance, but it depends on your insurance on what’s covered/not covered. In their email, they provided a document with the billing codes they use based on visit type, and also sent an infographic that breaks down the cost of treatment. They want patients to make an informed decision and know costs are a big deciding factor. They were very upfront about everything.
blogger / eggplant / 11551 posts
@bamblm: Gosh, I can’t imagine how hard it must be to navigate a dog allergy. It doesn’t seem to be common knowledge that dog allergies can be life threatening, so a lot of owners probably think it’s harmless to let their gentle, friendly dogs approach your kids!
cantaloupe / 6730 posts
I find this so facinating and can’t wait to hear more. I forget, is this a nut allergy?
blogger / eggplant / 11551 posts
@Grace: yes, severe peanut allergy and a mild walnut allergy.
guest
Very exciting! It’s especially exciting that the desensitization process is so fast. Does your protocol involve Xolair? My son graduated from the Stanford clinical trials for food allergy to peanuts last year, are we’re now doing “off’label” OIT at home for the rest of his food allergies (all tree nuts). It’s been slow (but at least steady!) progress!
grapefruit / 4361 posts
Very interested to hear more! DH has nut allergies, as well as a host of other items; LO1 is probably allergic to melons, and the jury is out on LO2….. all fingers and toes crossed!
My cousin did some sort of immunotherapy and now is much much better.
DH has done allergy shots almost weekly for 3 years and finally graduated to monthly.
pomelo / 5621 posts
I’m very interested to see how this goes.
persimmon / 1121 posts
I’m very interested in following your journey, we’re looking into OIT as well for our daughter.
pomelo / 5866 posts
Do you have to live in-state to apply?
blogger / eggplant / 11551 posts
@808love: No, they will take any child with food allergies.
pomelo / 5866 posts
@Mrs. High Heels: Cool, I’m number 1080 or something like that. Will be interested in costs. My LO has a milk/yogurt/ice cream allergy but can eat small amounts of cheese.
wonderful pomelo / 30692 posts
I’m so jealous that you’re doing this!!! I can’t wait to read more about your journey! Our closest clinic that does OIT is hours away and just doesn’t seem feasible, but with your mention of only needing to go every 5-8 weeks… well… maybe it is something to look into!
This is for your daughter, right? Is she 7? I forget. Logan is 3, so I’m wondering if maybe he’s too young to start something like this?
blogger / eggplant / 11551 posts
@808love: How severe is your LO’s dairy allergy? I’ll try to blog more about costs in upcoming posts, but need to hear more myself and ask some questions before I tackle that subject!
@Adira: It doesn’t hurt to at least look into it! I was surprised by the every 5-8 weeks number too. I don’t know if other OIT places operate the same, but it is definitely worth looking into and asking some questions. Yes, she’s 7 now. A commenter on my previous OIT post mentioned she had just started her one year old on OIT, so I think 3 should be fine! It might vary from place to place, so I’d ask the place near you what their protocol is.
blogger / eggplant / 11551 posts
@808love: On the OIT 101 site, this is what they say about costs in general –
Is OIT covered by insurance?
In a survey of OIT patients, 84% of them had insurance coverage for OIT, up from 46% prior to 2013. Since OIT is performed 93% at home by the patient (a ratio of 14 home doses to 1 office updose), the majority of OIT treatment is actually done by the patient and family. Oral Immunotherapy is considered experimental but the procedures actually done by the office are covered by many insurance companies.
The office visit appointments are for physical checkups, reviewing of status and issues, and counseling/guidance for next steps, sometimes with a food challenge to a previously-documented food allergy. The doctors bill for time and counseling, and many visits are billed as straightforward specialist office visits.
The OIT physicians are regular, practicing board-certified allergists in offices that accept all kinds of insurance plans for the many services they provide. If you have a deductible, co-insurance, or co-pay, these will apply the same as it would for any doctor visit. Insurance companies dictate the end cost. Depending on where you live, payments to the office of patient plus insurance can range from $150-250/hour for the first day, and $150-300 for each updose (typically 16-26 appointments). Your deductible and co-pay will also determine what you pay out-of-pocket.
For non-insured patients or patients wishing to bypass insurance, projected costs and cash discounts can be discussed at the consult appointment.
guest
@BAMBLM Pet allergies worry me so much! I have a dog and a cat, and so I feel like I’m ALWAYS covered in pet hair, even when I try to not be. Plus, with so many people taking their questionable support animals out and about, on planes and such, I worry that someone would have a reaction in what should be a safe space.
honeydew / 7488 posts
Wow that’s awesome that it will be happening soon for your DD! And to be done in 5-8 weeks, that’s pretty incredible. I wish you lots of success. Just as an update my DD has been graduated from OIT for over a year now and eats her peanuts daily. Sometimes we skip or forget but we try to stay on it. She had PB&J for breakfast today! Over time hopefully the research will support her dropping to a few times a week.
wonderful pomelo / 30692 posts
@Mrs. High Heels: I just found out that Boston’s Children’s does some OIT too, which is a LOT closer to me! I need to call them and look into it! Thanks for making this post!!
blogger / eggplant / 11551 posts
@Adira: that’s fantastic news!! You’ll have to keep me posted on if/when decide to do it!
blogger / eggplant / 11551 posts
@Emily: That’s wonderful! I can’t wait for the day we can call ourselves “graduates”. This is what our program said about the use of Xolair – “SoCal Food Allergy does not believe that Xolair needs to be a staple of food allergy treatment. In fact, fewer than 1% of our patients have required Xolair during treatment in our clinic. Determinations are made on a case-by-case basis.