To pay for Palforzia for dd (peanut allergy)

[ThanksAntsThants23]

My dd is 8 and has a peanut allergy, she has never had an anaphylaxis but had bad reaction when fed peanut butter as a baby (hives + vomiting), skin prick when she was 5 showed clear reaction at test site plus swelling of face/lips following the prick so was given an epipen. I’ve seen her react to peanuts in the same room with hives on her face so assume allergy is airborne although again never had anaphylaxis.

we have carried these epipens around for years and thankfully never used them but like most kids with severe allergies she has had her life restricted because of the allergy/epipens. She can’t go to sleepovers or even play at friends houses unless parents are happy with the risk and possible need to administer epipen (most are not and she never gets invited anywhere despite having lots of friends in school). She hates carrying the epipens because she has asd related social anxiety and she doesn’t like having attention drawn to her, if anyone asks her about them she gets upset.

Because of the anxiety I am fairly certain that’s if she was having a severe reaction/anaphylaxis she would be more likely to hide in a corner somewhere than ask another adult for help if I wasn’t there, so even when there is a system in place to deal with allergies/epipens in holiday clubs etc I’m not really 100% comfortable leaving her. Building her confidence etc is a continuous work in progress and she is improving but not enough for me to feel that she would ask for help if needed.

I’m in Scotland so Palforzia isn’t available through NHS, Aibu to consider paying for it at around £19000? I would have to pay through a payment plan and even then would probably involve taking out loans and credit cards to make the payments, financially crippling me for years to come. Can anyone who’s child has had this treatment tell me if it’s worth it?

Hi,I just saw your post. You should go to peanut allergy Facebook group and ask relates questions.

I've lived with an anaphylactic peanut allergy for 58 years. It's never curtailed my social life, except that I won't eat anything that I don't know the ingredients of. I grew up reading labels on packaging and avoiding anyone eating peanuts. I've never heard of an antidote or cure for food allergies but I would never spend that amount of money for it.

My DH has a peanut allergy that isn't anaphylaxis- he's been diagnosed with adult fpies but it's much more common in children. Epipens don't work for this type of allergy. So if I were you I would ask for a referral to an allergy clinic to get an exact diagnosis of what type of allergy your daughter has before going any further

I'd never heard of it so just had a quick google. Yes, personally, I'd absolutely pay for the treatment if it was my child. But the financial impact wouldn't be anywhere near as noticeable as it sounds like it might be for you, in which case I'd have to think long and hard about it.

My understanding is that it would still just be tiny amounts tolerated, a peanut m&m or so rather than eating a satay diah or Peanut Butter sandwich. So you'd still have to carry allergy meds and go through the communication at sleepovers etc. However I'm not an expert so could be wrong, it's on my list of questions for my DDs annual review at the allergy clinic. But if so that is a lot of money for not a complete cure

Can you afford it? It does sound like it would take a massive weight from both your shoulders, I can see why you would benefit from it.

Just to give another option if the cost of it is a factor, there is currently a clinical trial using actual peanuts (rather than a drug form like Palforzia) which if it goes further than a clinical trial would reduce the costs for people. Not sure how long treatments like this take to go from trial to normal routine care but perhaps worth a discussion with your doctor on if its worth waiting for.

You could see if they are still recruiting participants for the trial as well?

https://www.narf.org.uk/the-natasha-clinical-trial

Oral immunotherapy for my DS (different allergy) has made a huge difference. It has made the difference between constant hospitalisations and risk of dying and spending sometimes weeks at home off school to just flourishing and having no hospitalisations since the beginning. If this is an option, and I do stress the if, because your DC should get completely tested, then I can only recommend it.

Side--note - previously tried a years worth of immunotherapy at 6 years of age (monthly injections). This stopped working at 12 years of age so we started immunotherapy again (oral).

All the best, OP.

Snap. Except it’s 53 years for me. Never stopped me doing anything. I am careful not to eat anything I am not 100% sure about. I don’t even carry Epi-pens. I have had severe reactions when younger (late teen) but never anaphylactic level. Haven’t had a reaction in years, in fact thinking about it my dh has never seen me have a reaction and we have been together 30 years.

Should have added I am allergic to all tree nuts, peanuts and fish.

I would look into this and all of the alternative options very carefuly before committing.

The German health authorities have concluded that it does not offer any benefits over avoidance. The actually impact on quality of life can differ significantly from one individual to another.

Up to 25% of participants choose not to continue due to the requirement to stick to the protocol and due to the side effects experienced.

The protocol needs to be closely supervised by trained medical staff as a significant number of participants experience reactions including administration of adrenaline which is itself, not without consequences, including the potential for long term impact to the heart.

In one article I read.. "At trial’s end, two-thirds (66.9%) of patients reached 1 year of immunotherapy; 38% reached 2 years; and 8.3% reached 3 years."... I don't know exactly what that means .... but my understanding is that this is a lifetime protocol and if you stop, the allergy can return... but maybe I am not fully understanding this.

The protocol is not effective in adults and a significant proportion of children will outgrow their allergies before 18 so there is a question over whether it potentially exposes some participants to unnecessary allergic reactions and administration of epinephrine.

One article raised the question as to whether the annual cost of £10 per day was reasonable for what amounts to 2 peanuts. There are many elements to that discussion.

I remember reading the testamonials of parents whose children participated in the EAT and LEAP trials and they hsd no hesitation in their support for it and where unequivocal in their statements that the outcomes were life changing. The reserach is compelling but I would also want to look at how the EAT and LEAP studies are different to the Palforzia process / protocol and not least... would your daughter be able to swallow the pills daily for the required period... if it is indeed a lifetime requirement. Could you / she also cope with the anxiety of the chance that she could react at any time to the pills that are supposed to help her?

Many many questions.. what other options are available?

On reflection.. the EAT and LEAP studies relate to early introduction so I have unnecessarily brought this into the discussion. Sorry.

I've also consulted Google and apparently there are still no reliable treatments for anaphylactic food allergies except for epinephrine.

There are other desensitisation options but they might not be available in Scotland. I think it might be worth considering the acupuncture/ kinesiology method of NAET if you could get tests done before and after... especially if the alternative was £19,000 and a lifetime of taking an expensive pill.

At least if you spend £19,000 on a proven treatment you'd have a good chance of it working. If you spend even £100 on acupuncture or kinesiology its a complete waste of that £100

How far did you exptensive google search take you? Not far I am guessing.
There are definitely immunotherapy options around for anaphylaxis, its just that the UK doesn't have them available on the NHS.
The option the Op has asked about isn't an easy or cheap option, but is a genuine option worth exploring none the less.

There are some really good options for undergoing immunotherapy treatment abroad - in the US for example.

We went 4 years ago for a 3 week stint and our daughter now eats 6 M&Ms on a daily basis (to keep up her tolerance). Life changing!

It was LOADS cheaper - and that included a 3 week stay in Atlanta for 4 of us! They have been doing it out there for over 10 years now (actually probably quite a bit longer than that!).

Have a look at the FB group OIT abroad and feel free to PM me if any queries.

@littlebabycheeses99 Can you tell me which hospital in atlanta you did this through please id be very interested. Thanks

Hi @Aberdeenusername it's www.freedomallergy.com
Ruchir Agrawal
115 Genevieve Ct, Peachtree City, GA 30269

Can't seem to PM!

My son carries epipens for cashew and pistachio allergy. He’s 3. I would pay whatever it costs.

I’m really glad you haven’t found you’ve missed out or been curtailed, but it’s such a constant worry. I didn’t even know stuff like this existed and now I’m going to look into it.

Thank you so much ☺️

I am in a similar dilemma. I really want this treatment for my son but not sure I can afford it. What were the international opinions you found?

I'd recommend you look at the OIT Abroad group on Facebook - there's loads of information on there regarding different options abroad including France.

@ThanksAntsThants23 My son has a peanut allergy and I am concerned a bit by your post because it is my understanding that hives, vomiting and swelling of the lips/face does mean your child has had anaphylactic reactions. You don't have to have your airways close for it to be considered anaphylaxis is my understanding. The fact that she gets hives from airborne peanut particles and have swelling of the face/lips just from the skin prick suggests she is extremely allergic. I recommend you ask your doctor to clarify this for you because this all sounds like an anaphylactic allergy to peanuts to me and you need to be very clear at what point you need to administer her epipen if she gets exposed.

my.clevelandclinic.org/health/diseases/8619-anaphylaxis

My son was fully informed of the risks of doing a similar treatment and he (and we because he wasn't an adult yet) decided against it because his doctor told him that there was a risk he would have an anaphylactic reaction, have to be given epinephrine and there was a risk of death. He was a teenager by that point and felt it's easier to avoid peanuts than go through that.

Looking at the website for Palforzia it does make it clear that the first treatment and all first treatments when the dose is increased needs to be given in a health care setting by trained professionals because of that risk. Given that your daughter has reactions to even being in the room with peanuts, I would be very concerned of the risk for an anaphylactic reaction leading to administering multiple shots of epinephrine. In clinical studies life-threatening anaphylaxis occurred in 8.7% to 9.4% of participants (www.aafp.org/pubs/afp/issues/2022/0100/p20.html). That's a significant number of people. That may be a risk you are willing to take but you need to make a fully informed decision and clarify with your doctor whether she has an anaphylactic reactions already.

www.palforzia.com/

I live with peanut allergy. I actually live a pretty full life and it's never curtailed anything. I use a peanut butter spread substitute called wow butter when I need a peanut hit. It's made from soya. I work as a nurse. Go out for meals, go to parties and go abroad on holiday.

Have you spoken to many other peanut allergy families to help you manage the anxiety you must be feeling.

19k is a huge amount of money. I will be honest...is it necessary. If your kid is pretty safe,you have never needed the epipens ...is it 100% effective?

@Sleepydoor Absolutely. This has been my understanding as well. There is indeed a risk of death and therefore, not something I would consider.