Has anyone had OIT for Tree Nuts in the UK?

[HeeHawSeeSaw]

Hi all

My DD has an allergy to cashews and pistacios. I saw a post on a tree nut allergy group the other day about someone starting OIT (Oral Immuno Therapy I think), but it seemed like maybe they are not in the UK? I can't seem to find much info on oit in UK? If anyone has had OIT for Cashew and Pistacios in the UK please can they tell me:

Was it successful?
How long did it take
How much did it cost
Where you had OIT

Thank you so much x

George du Toit is fab and to the best of my knowledge (DD has different allergies) does OIT for nuts. Adam Fox also very well known and equally great.

Not oral immune therapy but my DS who was allergic to all nuts (peanut & tree nuts) eggs and milk and soya did a successful food challenge (over time) for peanut and cashew and can now tolerate both. Hopefully to do the other nuts soon.

He is still too allergic to egg to attempt one but I hope in the future there's a change. One for milk is potentially on the horizon if his bloods and skin test look favourable in the summer.

How old is your DC?

Thank you for replying.

@clipclop5 I will research George Du Toit. I think I came across something for Adam Fox but from what I can remember it was peanut oit and not other nuts? Maybe I am misremembering. I couldn't really find hardly anything on oit for cashews/pistacios. If you don't mind me asking what allergies did/does your dd have and did oit work for her? I think I've read that there have been successful oit for peanuts in the uk , but can't see anything for cashews/pistacios.

@dopeyduck My DD is 3 and we only recently had an allergy test for her by NHS. They just said she is allergic to cashews /pistacios , told us to avoid them, gave 2 epipens and showed me how to use it, and asked us to wait for the letter in the post (which we are still waiting for nearly three weeks later). They said things are unlikely to change in a year in terms of dds allergy, and in their letter to the gp they are going to ask them to refer my dd to them again in about 2-3 years time for another test to see if there is any change. If you don't mind me asking, who decided when your DS can do an oral food challenge and how old was he when he did ? and did your DS have it done privately or on NHS?

I've had OIT for a sever grass pollen allergy if I can help? I still have symptoms now but they are very very mild compared

My ds has multiple food allergies, and was allergic to some nuts, but out grow it. I wasn't expecting that tbh. But He is still allergic to wheat/dairy/egg and many others.
To have food challenge, I think you need to be under allergy clinic. We had few challenges, nuts was successful but not the others.
Also he is undergoing sublingual immunotherapy for house dust mite allergy.
It's all done under the consultant allergy doctor at London hospital.

He was diagnosed with a milk and soya allergy (anaphylactic not just CMPA) when he was 16 weeks old. He was EBF so no epi pen at that stage as he only had breast milk. He was 6 months old when he had a reaction to egg - his first exposure. He was obviously admitted and his bloods showed he was also positive for nuts. We had epi pens from then on.
He did a the challenges between 11 - 14 months. The later being peanut that he was more allergic to.
They have said they won’t be attempting an egg challenge or even considering it until he’s 4-5 years old.

Possibly trying milk soon ish after further bloods and skin testing in July.

All of this has been on the NHS. He is under the care of a paediatrician that he sees every 6 months and he is also seen in allergy clinic 3-4 times a year.

Thank you for replying

@worriedandannoyed I am just really annoyed that the hospital have just left us to it without doing any food challenges or anything. They said so themselves that their skin prick test is not always accurate and then they leave us to it and tell me to introduce other nuts to dd which according to their skin prick test (which may not be accurate anyway) dd is not allergic to. Now I am shitting myself with worry about introducing these other nuts to her. If I don't introduce them to her I think there is a risk of her getting an allergy to them, which I don't want.

@roguetomato that's great news your ds has outgrown his allergy to some nuts. I am keeping my fingers crossed my dd would outgrow it too. I wonder what criteria one needs to meet to be kept under an allergy specialist and not be dismissed! I am sick of constantly being dismissed.

@dopeyduck sorry to hear your ds has anaphylactic allergies, must be very worrying. Tbh, I haven't really been told how allergic my dd is to nuts, whether its anaphylactic or not. I've just been reading that even though the first reaction may not have been anaphylactic, the next one could be. She did go limp in my arms during the first reaction. I just feel so frustrated that they are not doing any food challenges or even blood tests to see if their half baked (by their own admission) skin prick test results are actually accurate or not, and are leaving it to me to introduce other nuts to her at home which according to their half baked skin prick test results she is not allergic to. Surely , this can't be right? She has got a constant eczema as well that never seems to go.

I am also wondering if there could be any treatment for her nut allergies (such as oit) which they are not considering or not even advising us about. For example when I was pregnant I was told about harmony tests etc that I could take privately. These people couldn't get rid of their patients quick enough.

I can't help with the OIT but my suggestion is to try new nuts near the hospital, some parents park in the hospital car park to do this. Anaphylaxis FB groups can be really helpful.

There is merit in not introducing or trying to do challenges too soon. The immune system takes time to mature and the more frequently it over reacts to an allergen the more severe the reactions get so being off nuts for a while is a good idea.
DS was eligible sooner as he was allergic to 4x different food groups which is a trigger point for a higher level of intervention in our NHS trust.
Some food challenges do happen at home. For example DS did his cashew and peanut in hospital on a ward but other nuts are likely to be at home - it depends on the severity of the reaction etc and how allergic they are.

Do you have epi pens? And an antihistamine? The key is to introduce a very small amount and watch for 15 mins and then repeat gradually increasing in amounts. Only introduce one new thing at once and so on.

If they start to react then follow their action plan for your child. Do you have an action plan?

Sorry things haven’t gone smoothly for you, who is looking after your DC? GP or paediatrician? Could you discuss your concerns or ask for a second opinion? Ask to be referred to allergy clinic.

At first his allergies felt overwhelming and confusing but it does get easier. Could you contact a charity for some support?

My son had anaphylactic reactions to peanuts and many tree nuts, as wrll as mystery anaphylaxis which was fun! Repeated skin prick tests for a bit then the allergy clinic seemed to implode and we couldn't get an appointment for years. We went private in the end.

Anyway, all the allergy consultants (NHS and private) told us that with multiple tree nut allergies, any desensitisation treatment will be hard to keep up because you have to act on so many fronts. Once he was successfully desensitised to one nut he would then have to eat it regularly in order to maintain. This didn't seem realistic for us - daily lifelong intake of almond, cashew, hazelnut, Brazil nut, walnut, etc. when he could just avoid them all as he had been doing.

The advice may have changed since then but for us that was the right decision.