Experiences of OIT/ desensitisation for nut allergies?

[DottyCat]

We’ve been looking into oral immunotherapy therapy/desensitisation through Professor Fox’s London clinic for my daughter who is 1 and has several nut allergies. It’s very expensive but we are fortunately able to manage the cost. However, having had an initial consultation I am a bit overwhelmed by the commitment and potential for DD to have reactions through the process.

It would be wonderful to reduce the whole families stress about her allergies and for her to have more freedom as she grows up - but feeding her something she’s allergic to every day, and making sure she’s well/not tired/not going on a toddler rampage would be a lot to juggle, especially around work and nursery! And there’s always the possibility it fails and we’re back to square one but thousands of pounds worse off.

So I was wondering if anyone has been through the process, and if so would you recommend it?

We are at the same stage as you of investigating the process. Like you, we are a little overwhelmed at the number of appointments which would be required and also the length of time for the trial (we were told to expect years) and there is no guarantee of a positive outcome.

Additionally, there are no centres offering this in the country we live in, so it would mean fortnightly trips to America which makes the cost even greater.

Very interested in hearing other experiences too.

I can't recommend it enough.

This is especially the case as more recent studies are highlighting that OIT in under 4s even has the potential to "cure" the allergy completely.

We've been doing OIT with DS since he was almost 3 (he's 5 now).

Initially it's daunting and he's had a few minor reactions (flushing, hives) to updoses, but we find it very manageable.

We time his dose so it's during down time e.g. tv time while I cook. It was explained to us that if he runs about a bit or has a tantrum it's not a major issue, but you don't want him getting overheated or e.g. playing sports.

We've had days where we skip due to a fever or cold, but the clinic has a plan for "building back up the dose".

It's expensive and the monthly visits are time consuming and a bit stressful but he can now eat a tablespoon of tahini a day (which is amazing considering he got a hive from his first sesame dose of 1mg!)

DS has 14 allergies so this hasn't opened up doors like restaurants or bakeries for us, but if he just had nut allergies, I can imagine it would have.

It also gives me much more confidence when he eats "may contains" foods.

Generally, it makes me feel like he is so much safer around food and I feel like it's massively worth it, especially now he's in school.

@DottyCat

Wow this is so helpful! Thank you for responding! I can’t imagine how challenging it must be to manage 14 allergies.

have they let you know when you might be able to drop down to less than daily dosing? They mentioned to us that it would be possible in the future after a while on the maintenance dose and that seems much less intense

This hasn't been mentioned to us, no. Maybe this is because my DS was older when started?
However, we're hopeful OIT could mean outgrowth and we'd do challenges!

Not that clinic but yes we did peanuts for DS in Switzerland. They were way more relaxed here, didn't give us any measured amounts etc, just did a few trials at the clinic and then fed small amounts. It worked - he now eats full sized snickers bars without any reaction. Such a relief.

I have our annual allergy check up coming up and would like to ask about this. Last time I asked the consultant was quite negative about it, saying it's a commitment for life and it's difficult to keep up when they reach teenager stage and the process is not managed by the parents. She said it become dangerous when for instance a teenager forgets their daily dosage for a while and they still think they are covered but they are not and they end up having an allergic reaction.
Is this a possibility? Do you really have to take a small amount of the allergen every day for the rest of your life or is there an end to it? I really need to look properly into the process.

Our doc didn't say he needs a daily dose - just that he needs to eat peanuts regularly. His allergies were not severe, so that probably makes a difference.

My DD took part in the BOPI 2 clinical trial. They started with a food challenge to determine how much peanut she could tolerate to set the starting dose.

Every two weeks the dose was doubled in hospital.

Now she has to eat 6 peanut M&Ms a day to maintain tolerance.

It hasn't removed her allergy completely. She has an anaphylactic reaction at not a great deal more than 6 peanuts.

She also had an anaphylactic reaction when unbeknown to us she was telling us she had taken her peanuts when she hadn't and her tolerance dropped.

So it's not a cure and she can't just go out and eat a snickers but the point is that she is less likely to have an anaphylactic reaction on accidental exposure.

She said it become dangerous when for instance a teenager forgets their daily dosage for a while and they still think they are covered but they are not and they end up having an allergic reaction.
Is this a possibility? Do you really have to take a small amount of the allergen every day for the rest of your life or is there an end to it? I really need to look properly into the process.

See my previous post. The study DD was taking part in were going on to see how long between doses you could go without reducing tolerance but DD didn't meet the criteria to go onto that part of the trial.

Thanks very much all!

We’ve decided we’re going to go for it - already feeling quite anxious but I think we’ll regret not giving it a go. I also think that maybe by starting this young it could become more part of the routine like toothbrushing and make it less likely she’ll give it up as a teenager - or maybe there will actually be more treatments by then!

Hi OP - I wondered if you might be comfortable to share your experience with OIT/ desensitisation please, as well as any tips/ tricks!? I have a 10 month old under Professor Fox and we have been advised that OIT is an option for us due to peanut and cashew allergy. It would be great to hear any experience you’re happy to share. Thanks

Hello! Yes of course. We decided to go for it and are about half way through now (just moved onto actual nut pieces!)

so far we are really glad we did it - I am still quite anxious about the doses but this is lessening and it does feel more routine now, and when we moved on to the actual nuts I started to feel more relaxed about things like cross contamination, and hope this will only get better. The team are really helpful and responsive, and even though it’s a massive pain to go in every couple of weeks I’m actually really grateful to have met other parents doing it and to be able to ask the doctor questions when we’re there. On the downside, it is quite tricky when they are poorly as you have to pause and we have missed an appointment due to this.

happy to answer any more specific questions you have!

Is this only effective in young children? I have a nut-allergic ten year old and his consultant doesn't seem to know anything about this process when I asked her. I enquired at another hospital which is running a peanut trial and was told their trial is for toddlers only. I wonder if it's too late now.

I'd recommend the podcast EpiPod - it's American but has a mum on it who has one child in TIP and another just starting OIT - she's done loads of research into the pros and cons or different options.
She's on Instagram - foodallergiesotg

We were told my son could take part in the BOPI2 trial up until he was 18 so not too late.

My daughter was around 10 when she started taking part in it.

US based here. My son started OIT at 3 years old for peanut. He is 7 now. We have been giving him peanut every day for four years. It's his only allergy. It has been so worth it. The hardest part is getting him to eat the dose each day. At first, we mixed it in ice cream. Then we tried yogurt. Then applesauce. Chocolate sauce on ice cream. A bowl of whipped cream. Whatever it took to get it down. There were rough weeks when he cried and refused it because it made his mouth itchy or his stomach hurt. Finally, we got to maintenance dose. 4-6 Reese's pieces or 3 peanut M&MS. First we crushed them in ice cream or yogurt. But it still sometimes made his mouth hurt and he started rejecting it. Now he swallows them whole with his favorite juice. Sometimes he is sick and misses doses. One time it was a whole week missed when he had the flu. We cut the dose in half and then worked our way back up at home to the maintenance dose.

So, pros. I don't worry every time he goes to a birthday party or another kid's house. I'm slightly less worried when he goes to school. It takes away the accidently ingestion issue. It also makes it fine to eat things that say "may contain peanuts." That is huge. Thanks to lawsuits, everything says "may contain" now and it's a useless label.

Cons. The dosing is hard. You feel like you are giving your kid poison every day. When they fight you on it, it sucks. Some advice, once they are at maintenance dose, it's ok if you miss a day or two. If they are really fighting it, take a break. I also worry about an anaphylactic reaction to the dose itself. Sometimes an hour after dose he is in bed and says he doesn't feel well. So I stay up all night checking to make sure he is breathing. Yeah. Also, it's hard to explain when they are little. Peanuts will kill you! Here, eat this peanut.

Our plan is to get him to teenage years and then let him decide if he wants to keep going or if he wants to just avoid peanuts.

Oh, big tip. Hot baths and running around make the chance of a reaction to the dose go up. Basically anything that brings his heart rate/body temp up a bunch. We try to put two hours between dose and activity or hot bath (or we do a super quick bath). So hard if they are into sports to find the right time. Luckily my kid is a gamer. But figuring out best time to dose is hard. We didn't want to do it before school. But also not right before bed in case he had a reaction is his sleep (is that a thing...?). Anyway, our sweet spot is 4pm after a big snack.

In sum, so worth it. They get to live a more normal life.

Oh also, side note, we started before it was approved in the US. It's only peanut powder, not a controlled substance, so it isn't illegal for a provider to give it to you. Same with other allergens of course. We found an allergist who specialized in it. He bought the peanut powder from some grocery store. He was Indian and said they had been testing in India. Basically the only reason to do it at an allergist (as opposed to at home) is because they measure the doses super precisely for you and you do the up dosing at the clinic where they are experts in how to manage an anaphylactic reaction. But in theory, you could do it at home. Would not recommend that because I think it would be terrifying. But look for holistic whatever clinic if a regular allergist won't do it. Another allergist we saw refused to touch it until it was FDA approved. Which is silly since, again, it's just peanut powder. There are charts online for how much to go up each week. I would not have felt comfortable without an allergist guiding the process, but having now done it, there's nothing profound about it. Just a tiny bit more each week.