Peanut immunotherapy Cambridge

[MardalaRhyme]

Wondering if anyone has had experience of this. How did you fund it and was it successful? Is your child eating peanuts as part of their diet now or are they still taking the nut protein capsule? We are considering a self referral for DC so I'm in information gathering mode.

[PragmaticWench]

DD is seen at the clinic at Addenbrookes for peanut and other allergies, but they aren't offering her immunotherapy at the moment. Are you planning on going private, or NHS?

[sunshinejourney]

I'm in a couple of Facebook groups that focus on immunotherapy. Many of the UK parents travel to the US for treatment - even with accommodation and flights, it is apparently still cheaper than Cambridge?

There's a lot of success in those groups. But requires a lot of life changes and serious commitment- and of course, the financial strain.

[MardalaRhyme]

Thanks for replying. As far as I'm aware it's only available privately atm. I have been hoping it will be available on the NHS but judging by the state of the health service currently I cannot see it happening anytime soon.
sunshinejourney would you mind sharing the name of the FB groups you have mentioned? I haven't even thought of the USA.

[sunshinejourney]

Peanut Allergy Immunotherapy OIT - there's a few groups with that in the title, including a UK based group.

[MardalaRhyme]

Thanks!

[HenTeeth]

I agree with you that there is no point in waiting for it to ever be available on the NHS. And it can only be carried out on children at the moment so we can't wait forever.

It's been on my mind too this week with the epipen shortage and the girl who died on the plane.

It costs about £18000 which is out of my reach.

[TerryIsAllGold]

DS is now in the 'down-dosing' phase of this ie it's 2 years since he started the original treatment and he is about to go onto 1 dose a week for the foreseeable future.

The maintenance dose (which he's been on for the past 18 months or so) before down dosing is equivalent to 2 peanuts a day.

He isn't able to pro-actively eat peanuts - that isn't what the treatment is aimed at, it's designed so that if he accidentally eats some he won't go into anaphylaxis. Think of it as being able to go into a Chinese restaurant - he can't order the chicken satay but if there is a bit of cross contamination or a peanut in the special fried rice he won't die. Whilst on the 2 peanuts a day maintenance dose he had one accidental eating of peanuts - he knew immediately as he felt 'funny' but a standard dose of antihistamine sorted him out - prior to the treatment there was every chance he would have gone into anaphylaxis so we've already seen the benefits.

The main benefit is the 'peace of mind' in terms of accidental eating of peanuts through cross contamination, mislabelling, or more likely as he gets on his teens (but hopefully not) being a dick and not checking something properly. In all seriousness this was the huge benefit in my eyes - it's fine (or at least manageable) when they are small but the idea of him in his late teens, drunk, going for a curry and either forgetting to check/not wanting to make a scene and eating peanuts terrified me!

In terms of the treatment itself the initial treatment before you go onto the maintenance dose is intensive - it's every other week and you are at hospital for pretty much half a day by the time they've done the checks, given you the dose and then you have to wait under observation for two hours. It's a huge commitment in terms of time for a parent and the child and you will need to work around the missed school etc. Depending on how far from Addenbrookes you are you are looking at missing 10% of their schooling for pretty much a whole term if you have to take the full day for appointments.

DS was reasonably ok with the updosing every time. It used to make him feel a bit rough for a couple of hours whenever the dose increased and for a few days afterwards. You also have to work out how to fit the dose into your daily routine as they have to be observed for a couple of hours afterwards and can't be too tired etc or run around for those 2 hours. You also become masters at mixing it into different yoghurts etc as the kids really cannot stand the taste of peanuts (which is a great thing).

For us though the benefits are amazing, at DS recent skin tests it was gobsmacking how much smaller the hive was (he still does react to peanuts but at a much lower level). He's also not allergic to any other nuts so can now eat Nutella, walnuts etc whenever he likes.

It's not cheap and it's such a shame it isn't available to everyone as it truly is life changing. I'm eternally grateful we've been in a position to do it both in terms of the money and the initial time commitment.

[MardalaRhyme]

Thank you Terry. Like you my hope is that it gives my child the freedoms to eat out and travel with lower risk. I doubt he will ever be a fan of peanuts. When we discovered his allergies many years ago his consultant thought that immunotherapy would become standard of care by time DC was old enough. That was obviously before the current government came into power.
It's very useful knowing about the time commitment etc. Addenbrooks is a bit of a trek and I will need to juggle childcare for other DC so if we go for this timing is crucial. Financially it will mean putting back a house by a few years but at least we are fortunate enough to have the option. May I know how old your DS was when he started the programme and how did you prepare him for it?
Hen it's the epipen shortage that made me think seriously about this again. It's the 3rd time now we are going through a shortage.

[Westwing1]

Hi, my DC is doing this, first visit to Cambridge he was 11. He took nutlife (peanut protein capsule) daily for 2 years and is now on the once a week capsule. We had to wait about 18 months before our DC was taken on (at the highly allergic end of the scale). Terry's post is excellent and reflects our experience. Skin prick tests and blood tests after 2 years of treatment showed a huge reduction in reaction to peanuts. As Terry says the treatment is not about eating a few peanuts deliberately but rather should peanut be eaten accidentally the result is stomach issues or nausea etc rather than anaphylactic shock. Also DC is now no longer allergic to the other two nut types they were allergic to. Unfortunately the treatment is not currently available on the NHS. We are a few hrs drive from Cambridge and it was tough. However you only go once a fortnight for 3 or 4 months and then you continue at home. When we attended there were children from other countries flying in for the immunotherapy. The staff at the clinic are great with the kids and very thorough in their methods.

From the child's perspective they are eating a poison when they take nutlife (at least mine did), however our DC has a happy go lucky nature and got on with it with little complaint. I do know of one child who had a little therapy half way through the programme as they were finding it tough. They pushed through and all was well.

Terry hi! Just wanted to say switching to once a week is heaven. Our DC is loving it, they chose to take it after breakfast on a day they have absolutely no sport and no problems so far (4 months in).

[MardalaRhyme]

Thank you West. Helpful to know there is a wait time. Is this because of severity of your child's allergy or is there a waiting list regardless?
My DC like yours treats peanuts as poison - rightly so. I was curious how the kids took to the treatment as I think the psychological bit about eating peanuts willingly would be the difficult bit for mine.

[Westwing1]

Hi Mardala, I don't know if there is a waiting list at the moment. I know for our DC at that time it was because they were at the high end of the scale and also asthmatic. The psychological aspect is to be considered. The peanut protein (not the actual round nut) is sprinkled into a food but our DC could smell it. Often we would have a cut lemon for them to sniff, or an open cola bottle, tv on etc. You get good at working around the difficulties, but it is a commitment, every day for 2 years and then once a week. Obviously the child needs to be willing and understand the future benefits. Our DC feels more confident around food now, took pride in reading how their blood test results had changed and seeing their wheal size halved (skin prick test).

[MardalaRhyme]

Thank you West. That is incredibly helpful. I may contact them to make enquiries but put off starting until DC is better prepared.

[HollowTalk]

Oh this sounds interesting. My son has a peanut allergy - he's in his 20s. Is this treatment only available for children at the moment?

[Westwing1]

Hi Hollow, unfortunately I am pretty sure it is just children at the moment (age 7-16), it's still at 'drug trial' stage. I think the Cambridge Peanut Clinic at Addenbrooks Hospital are trying to get a license so it is more readily available to all. I imagine this could take a couple of years but I really am completely guessing at this point.

[HollowTalk]

I hope so. He wasn't diagnosed until he was an adult so I appreciate how much more worrying it is for those of you with younger children, but he's away from home and it makes me really panic, particularly when he goes out for meals.

[TerryIsAllGold]

Hollow it may be worth getting in touch with the clinic and registering an interest iyswim. I think longer term they want to expand who they can offer it to so you may be able to get 'on the list' for if they start running a trial on older patients. I can imagine how stressful it must be, hopefully though in his 20s he is past the daft teenage stage and able to take it seriously.

West am very much looking forward to 1 dose a week - (starts this week!). It has been a constant battle to get him to remember to take the daily dose (I had this lovely hope that it would become a habit and part of his routine but I feel like every other day I've had to remind him ). DS was also pretty good about it all and never really complained - he's bloody sick of yoghurts though. I've promised him now I'll be buying a single pot he can go wild and pick whatever flavours he likes (I've been bulk buying Petits Filous for the last 2 years!).

Mardala there was an article in the Times at the weekend about allergies - that said it would be 3-5 years before it's a widely offered treatment so I think you will have to go for it privately via Addenbrookes if you want to get it for your child.

[MardalaRhyme]

Thanks Terry. I'm so glad I started this thread. The mumsnet allergy board has been my most useful resource since my child was diagnosed!