@bananaskin123
Nearly 18 year old granddaughter was diagnosed as possibly having anaphylaxis. Short history is that six months ago she had her first attack, blue lighted etc. She has now had about six in total roughly I suppose fortnightly. She is under the care of a dermatologist with a special interest in this but all the tests ie blood tests have come back relatively normal. She was supposed to be having patch tests in two weeks but the consultant via his secretary has said this is not now necessary as she doesn't appear to have an allergy. She is on antihistamines and another drug. When she had a reaction last night apparently it was slower (maybe because of the drugs she has been prescribed) but still blue lighted to A&E.
Does anyone have any experience themselves or with their own child and maybe might know what the next step might be when they see the consultant next. My daughter is taking no chances and is ensuring she is not alone at home. It really is quite nerve wracking. Nothing has changed house wise, makeup, all the usual culprits etc. Apart from this she is very healthy, doing well at college and hoping to start an apprenticeship in June.
Not my daughter but me.
Mine are unknown triggers.
I had 5 in 7 days in February 2020 -no cause identified. 5 A&E trips -put on steriods until July 2020.
Trailed them off. Nothing From March 2020 to this February 2021. We have moved house and area, I had two in February -serious. Then I have 3 in 3 days in March. 2 in 2 days in April.
Currently awaiting the same emergency appointment I was referred to in February 2020. I was given one last week and this was cancelled the day before. 15 months for an 'acute emergency referral' -I'm back on steriods and antihistamines.
Got a panicked phone call from the GP today -the GP was a bit flushed and say 'Got a call from immunology double everything, steroids and antihistamines' umm I'm x2 over the dose that recommended by the drug company already. Fexofenadine 180 mg x 2 a day -really I said double the dose of double the dose? Yes they said.
GP said the hospital had phoned and said I needed an emergency acute appointment -I said good luck with that -that what I was told 15 months ago before they cancelled it all.
Anaphylaxis is shocking, frightening. Mine -I can feel coming on and I usually have a chance to grab my Epi pen.
Epi pens are like gold dust I had to fight to get one, then two and then argue with them for more.
Normally they won't give you one -you really have to fight it. Mine are so life threatening and serious -I have 5 Epipens -one stays in the car, one on my desk at work, one close by at work (nearest colleague), one in my handbag and one on the kitchen table.
It wipes you out totally. I am beyond exhausted after one. In addition the hives I had mainly on my head and face and hands -bloody hurt and the skin peels on.
In 90% of cases such as mine -they do not know what causes them. I know some triggers but these are unknown. So no reason.
I am sure mine is something inhaled -you can drive yourself insane.
For me the following advice -take pictures constantly during an attack -and date them with times on them
Get an Epipen
Get a referral insist on the patch test -when my new GP argued over me having more then one Epipen I said 'Can you please write in my notes. Patient requested more Epipens GP refused it. Patient said she was scared and needed more Epipens -GP refused.'
Funny how he said minutes later -perhaps you can have two. I now get 5 at a time.
Dates on Epipens -aren't very long either -although you can use any Epipen and even an out of date one in an emergency.
I'm sorry I can't be more positive -I can tell you it takes me weeks to recover and the skin about 2-3 months -but this is me -others have different experiences.
Being not alone -doesn't work. You need to toilet etc -you need an Epipen and training to use it and a mobile phone charged.