TIP vs OIT

[u/spriglavender]

Hi everyone,

Curious about your thoughts on TIP vs OIT.

My almost 3 year old son is allergic to wheat but he can tolerate amounts up to a certain amount for items like bread and pancakes. We have been giving him either of these daily for the last year and his tolerance seems to have increased since then. So I’m curious on whether I should continue this process or look into TIP or OIT.

TIP seems to market themselves on full food freedom and that is an attractive point. But it does look like it’d take at least 2.5 years, lots of labs/bloodwork and some appts. I’m not sure how the dosing works but I’m curious if daily medicines are required. If they’re giving you proteins from other foods to condition your body rather than your actual allergen in the beginning, then wouldn’t that decrease your risk and need for medicines?

OIT - once you reach the maintenance dose, what do you do next for full food freedom? Has anyone achieved food freedom from this and how long did it take? I’m wondering how OIT compares from an appt standpoint since it seems like OIT would require more appts (every 2 weeks from when I talked to an allergist). Is the risk higher than TIP since you start off with the actual allergen?

And if anyone has advice on how they got their toddler through either of these I’m also really open to it! Mine has boundless energy and will probably throw a tantrum within 5 min of arriving at whatever place we choose. I’m nervous about the bloodwork process and keeping him occupied for monitoring 😅

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[u/kurious_incredulity]

We did OIT for my 5 year old and achieved full freedom.

I think you'll be able to find more details in my post history but the jist of it is:

• allergic reaction at 14 months
• started OIT at 18 months
• we had 12 ramp ups to our maintenance dose. Took about 1.5 years because of the daycare illnesses. This stage was hard. Appointment for every ramp up and our lives revolved around the schedule. 2 hours every day blocked off for quiet play indoors while watching him like a hawk
• maintenance for 1.5 years (stay at dose, follow general OIT protocol but can eat food with 'may contain' allergen warning and/or eat around the allergen in their food (e.g. we had a cashew and pistachio allergy and he could eat mixed nuts as long as he avoided his allergens)
• bloodwork every 6 months during maintenance (maybe skin prick as needed too. Our son didnt have any reaction when we hit maintenance so we didnt have to do them any more)
  

We hit readiness for a food challenge around 1 year into maintenance but postponed many times because it was winter and he kept getting sick.

Passed food challenge around 4.5 and the recommendation was to eat his allergens 2-3 times a week. Hung onto the epipens until they expired and then didn't refill the prescription.

Now he's just a regualr kid who snacks on nuts a lot. Hardest part is having to backtrack all the severe allergy paperwork i filled out everywhere. School board, camp, dentist, etc. Half their systems dont have a delete button on something as serious as anaphylaxis in the medical history section.

My kiddo is active as heck. You can do this. Find activities to keep him engaged. Take a long bath. Do whatever you have to and get through the daily 2 hour window.

The freedom to eat anything without worry is life changing for my kid. For me, the release of that mental load and stresss/worry i carried for so many years was insane. I didn't even realize it was there until it was gone but it was a huge load.

P.S. I have Celiac so i get wheat free living. Its brutal. I would do anything to protect my kids from the levels of restriction I live with.

[u/zazazazoo → u/kurious_incredulity]

Amazing! So happy to read these types of journeys. We are in maintenance for kid1 and working to maintenance for kid2. Looking forward to our first set of bloodwork soon 9 months post maintenance, really hope numbers have gone down! Hopeful one day kids will be in “remission” and that release of worry comes my way.

[u/irishtwinsons → u/kurious_incredulity]

You mentioned nuts. Did you have to do OIT for each nut separately, or did it work together?
My son is 3 and quite allergic to tree nuts (but not peanuts). Whenever there is even a tiny bit In something he’ll vomit very violently and feel not great for a few hours after. He’s never been anaphylactic and seems to recover without meds (we give them, but usually throws them up with reaction), but now that almond seems to be everywhere (flour, milk, etc.) I’m wondering if it is going to occur more often. His face lit up the other day when he was offered a cookie, but then (caught it after 3 bites) he was not feeling well for the rest of his play date. Made me feel so bad.

[u/kurious_incredulity → u/irishtwinsons]

It was only two of the tree nuts -cashews and pistachios, which are co-allegens and always treated together at our clinic. We kept the rest in his diet relatively consistently based on the advice of every doctor we spoke to and the newest research.

If your child has digestive systems and a rash, that is considered anaphylaxis. It's two or more bodily systems reacting, not just the dramatic throat closing/unable to breathe experience you see in mainstream media. Besides that, we were also told that nut and shellfish allergies tend to get more severe over time. What has your allegist advised you about your child's case?

OIT was life changing in the freedom it gave my son so I would recommend it to everyone. Not easy at all but worth the pain tenfold.

[u/irishtwinsons → u/kurious_incredulity]

He’s never had the throwing up and rash together. Mostly just the throw up (almond, walnut, pumpkin seed). One other time he had a bit of a rash/itchy eyes (cashew), but no throw up that time. His blood tests are positive for almond, walnut, cashew, hazelnut, and coconut. His skin tests were positive for almond and pumpkin seed (another one we discovered) but negative for hazelnut, coconut oil, and almond oil. Our next step is a food challenge for hazelnut in October (because we want to know for sure; he’s never eaten it) and after that I’m curious about coconut as well (also no experience with that). His allergist hasn’t brought up the possibility of OIT to us yet, but I feel like we are still in the stage of figuring out what his allergies actually are.

[u/kurious_incredulity → u/irishtwinsons]

This makes sense. OIT usually requires a clear understanding of thr allergens and targets the most severe cases to try and lessen the severity. I think full remission is rare unless started very early, like with our son. Our clinic doesnt even accept kids over 3 that are not anaphylatic.

I wish you all the luck and best wishes on this journey.

[u/irishtwinsons → u/kurious_incredulity]

Yeah. That looks like what we have ahead of us. Clinic is always booked up; only allergist in our area, and we have to figure things out at a snail’s pace without ever really knowing…

[u/Apart_Hovercraft_842 → u/irishtwinsons]

Has your allergist explained why their is a difference between the blood and skin results? And which is likely most accurate?

[u/irishtwinsons → u/Apart_Hovercraft_842]

Our allergist explained that sometimes there can be an allergy to the seed/nut itself but not the oil. So the positive for almond and coconut but not the oil makes sense. He’s had exposure to coconut oil with no reaction (well he didn’t like it…so either toddler pickiness or OAS?) as well. Hazelnut is the only one where the skin and blood test was different. However, it is possible to get false positive blood tests, so maybe she’s going from that theory? We pushed wanting to know for sure, though, so I think that’s why she gave us the food challenge option. If he has a reaction to hazelnut though, I think we probably won’t move forward with coconut, but we will see what she says.

[u/chompthecake]

TIP is not peer reviewed and I keep hearing about people being “thrown out” of the program just because they reacted. In short, it sounds like they massage their success rates play rejecting people from the program and saying they never were part of the statistic

[u/dinamet7]

We're a TIP family. My advice is always: if your kid has only one allergen and it is a top allergen, go the OIT route. If your kid has multiple anaphylactic allergens including non-top allergens and/or other medical issues that make them a less than ideal candidate for OIT, go TIP. If your kid has not experienced anaphylaxis, go OIT. If your kid has experienced anaphylaxis multiple times or has contact reactions, go to TIP. I think of TIP as the last option for people who will be rejected by or fail OIT, so our family is grateful for TIP because my kid was not a candidate for OIT and we had no other options.

TIP is basically OIT with a proprietary AI guided treatment model. Their marketing is so scammy and I hate it (this article points out pretty fair criticisms of the program: https://undark.org/2021/04/28/unorthodox-allergy-clinic-disrupt-medicine/ - basically, they are treating the kids that no one else would attempt and it's working, but they're not sharing how they do it.) We started out when it was part of a hospital program and you had to be on a waiting list for a year or two to get into treatment, but now it's a huge machine with rapid expansion and is so insanely expensive.

You can get to free eating with OIT, but you will have to shop around and do research to find an allergist with a program that gets you what you want.

[u/ahchoochoo]

Following! Ended up going with OIT, but was always curious about TIP. My doctors did NOT like TIP.

[u/peanut825]

Following also - we’ve done so much research and as any parent, desperate to help achieve food freedom for my child. My kid (4.5yo) also has EOE so OIT is a maybe. We’re almost done with egg ladder so that’s been balancing act with managing EOE but officially starting SLIT for milk in October and hope after 6months to a year we can move up to OIT. If we didn’t have access to a world class and thought leader pediatric allergist, I’d consider TIP more seriously, but it’s so expensive and we’re Midwest so the added travel expenses is too much for us right now. Also, FWIW, the director of allergy at our top ranked children’s hospital basically told me 1) TIP is essentially OIT, 2) they refuse to share their data so that’s sus, 3) at all the conferences and when research papers are being published, they’re not the ones being asked to speak or participate… so I’m thinking it would be a last effort if we cannot achieve food safety / hopefully freedom via SLIT/OIT combo. But, if we lived in Cali for example, I’d be much more tempted

[u/acousticgs]

TIP is a scam. All of their marketing lies. (I am sure I am going to enrage people)

Your child is on a great path forward and you are essentially on an OIT protocol without calling it that and it seems like he is on the path to growing out of it.

[u/batista510 → u/acousticgs]

Why do you think it’s a scam?