Advice on how to deal with severe allergies/expert recommendations?

[TroilusandCressida]

My adult DD has suffered with asthma and allergies since early childhood, and has tested positive for a number of common allergens, such as pollen etc. However, on some occasions, she has had severe reactions to unknown allergens, which have resulted in a severe reaction, face swelling up for days etc. It is not clear whether or not these arise from consuming certain foods or from allergens in the environment.

DD recently went for her first Covid jab (Oxford), when she had a bad reaction, was rushed to hospital for observation and later discharged with an epipen. She is unsure as to whether or not she will be able to have the second jab. All of this is making her extremely anxious and she is understandably concerned about future episodes and how to cope.

Obviously, the NHS faces many demands at present and, although DD was referred to a dietician, the advice was quite limited. I am not sure where she goes from here but, knowing what a fount of wisdom MN can be, I was wondering if anyone could advise me if they had experienced anything similar and how you cope generally? Any recommendations or suggestions as to how best to manage things and any experts who might be able to help would be greatly appreciated!

Not sure if this will help but can only tell you what I was advised & do.
I have severe allergies, anaphylactic shock landing me in hospital three times. I was referred to an eminent consultant, supposed to be the best in the country at the time( several years ago).
Had a barrage of tests, the usual skin pricks, blood tests etc, but they didn’t get at the root of the problem. Showed a few mould allergies to food stuffs but not enough to account for the serious episodes I’d had.
So first he took me off several drugs I was on, I’ve had other problems all my life, BP drugs, I was born with a wonky heart. Then he prescribed a common antihistamine to take every single day of my life, winter, summer, every day, & an Epipen ( in fact they advise to carry two). But he also told me to carry with me at all times the ordinary Piriton, not the one a day Piriteze but the one you take every four hours. He told me if I felt a reaction beginning, usually in my case my eyes itch or my soft palette, to take four all at once ( ignore the dosage on the packet) then after half an hour take two more, then two more every hour till the reaction subsides. But if breathing affected get to A&E, by ambulance or lying down in the back of a car.
I’m not saying this is what you should do without proper advice, just that it was what I was told. Since following this advice I’ve only needed one hospital visit in the last fifteen years & that didn’t involve overnight.

Sorry, common allergies not mould allergies!
But really if she hasn’t had the prick & blood tests she needs to have them. I really would push your GP to refer her to the allergy department at your hospital. The hospital departments we have found are still working & are getting concerned that people are not getting referred by GPs. I know our GP surgery has been behind locked doors & unanswered phones since last February, over a year! People in the village are hopping mad about it.

I replied on your other thread, but she should as a matter of course be referred to the allergy clinic/immunology following anaphylaxis. She should have 2 epipens (and have been taught how and when to use them) and have a plan.

Having said that, IIRC we have a shortage of immunologists in the U.K., so waiting times can be long, so you may want to consider a private consult.

One thing they suggested to me, before toddler dd saw the allergy people was to keep a detailed diary.
Eg
Breakfast weetabix with whole milk. Glass of orange juice.
Morning. Went to tesco. Walked past 2 smokers in the carpark.

Felt a bit wheezy. Used inhaler.

Lunch. Cheese sandwich, white bread. Apple. 2 glasses water.

PM. Played football in the park with friends. Grass was freshly cut

Teatime
Eyes were streaming while I tried to cook.took antihistamine.

There might be some little detail that helps.

Thank you all very much for your helpful comments. DD is waiting on a call back from the GP to hopefully get a referral to an allergy clinic.

Allergy referrals take 18 months, that was pre pandemic for a normal, none intensive care admission route. I had to wait 10 months and that was after over 10 ITU admissions. Please don't think it's going to be a quick fix, however, I am assuming that allergy with a face swollen for days would have led to a hospital admission. Why was she only just now given an epi pen?

There's very limited allergens in the oxford vaccine though so that should limit it.

Make sure she is tested for rare allergies too.

She will need to keep a detailed food diary of absolutely everything - face creams, hair stuff, make up and food and drink.

Also 20% of anaphylaxis is idiopathic - ie they never find a cause to it.