Should I have called an ambulance? What do I do now - bad(?) reaction to dairy challenge.BTW LONG potentially.

[stottiecake]

Background
Ds has a number of allergies/ intollerances. His main ones are CMP, egg, peanuts but he also came up as positive in a skin prick test to soya, wheat, cod (so advised no fish)almonds.
He has had some other quite bad reactions to CMP - when he was a couple of weeks old we gave him a bottle of formula (Cluster feeding, tongue-tie sore boob desparation) and that night he went bright red and whimpery. We took him to the drs the next day and she couldn't say what was wrong with him (it seems so obvious now)
Anyway when he was about 5 and a half months I let him lick a bit of icecream off my finger and within minutes he developed hives all over his face, his lips swelled up as did his eyelids. I didn't phone an ambulance. I suppose I worried about wasting peoples time - it was just a very nasty (terrifying for us) rash.
I think he had at least one more reaction like that while we lived in London but I didn't get him checked out as I figured it was an allergy and decided to avoid all the commonly known allergy foods whilst weaning until we moved back to Yorkshire. (We moved back to Yorks when he was 6 mo) (I knew we were moving and our Drs in London had been useless in helping me with bf-ing problems, his tongue-tie so I thought I'd wait to get him looked about potential allergies at back north)
So in Yorkshire we were referred to an allergy specialist and they did a skin prick when he was about 7mo and discovered he reacted to the above. We have been seeing a dietician also.
We have done (I have!! Me!!) really well with his meals (I worked out that in the first 6 months of weaning I had cooked the equivalent of 6 years worth of roast dinners for the average family - basically I was making a roast dinner every day -what a massive faff!) He has grown, is bright and intelligent and am dead chuffed with how we have coped.
He has had a couple of overnight hospital stays due to asthma (not yet diagnosed but he has a steroid inhaler every day)

Our last apt with the allergy consultant was fine but I was expecting him to be retested as it had been well over a year since he had last been tested. anyway they didn't and we are going back in Jan. However in the meantime we have had an apt with the dietician and she advised doing some challenges - starting with a biscuit with some milk within the ingredients. WE did that and he was absolutely fine. The next day I tried him with a different brand of biscuit and he was absolutely fine - no reaction.

Today:

Argh. I stupidly thought it would be an idea to give him a quarter of a small square of chocolate. Absolutely no reaction. That was about 10am. I went in the shower about 11am and during my shower I heard him coughing so I jumped out and gave him a puff of ventolin as he seemed to need it. I got ready and he sat on my lap for a bf and started to scratch his legs. Anyway basically within 10 mins his whole body was covered in hives, his ears swelled up (bizarre) and he seemed to be having difficulty breathing through his nose. I realised he was having an allergic reaction so gave him 2.5mls of piriton. It took 2 hours for all the hives to disapear and he fell asleep during that time. Now his legs look like he has been sitting too close to a fire - red and blotchy - what's all that about??

So here's the question (finally) Should I have called an ambulance? WWYD? He didn't have any breathing difficulties just his nasal tubes may ahve swelled. He was fine but was I taking too much of a chance (worried about wasting peoples time) If he was going to have an anaphylactic episode would it have been apparent from the outset?

Would shouild I do now? I feel I need to discuss this with a medical person. I phoned the dietician for advice but she hasn't called back. Do I go to the GP or contact his allergy consultant? Do I just leave it?

They have been reluctant to give me an epipen so far (I feel like I have been a bit fobbed off tbh)

What an awful day.

Anyone give me any advise?

Just to add, well done on insisting for the MMR in hospital - as you say, one never knows how an allergic child will react.

my dd had an intolerance to lactose, she was terrible with bf she wouldg gourge and vomit and gourge and vomit, she was in pain from the onset and put down to colic then adviced against the gourging but it was difficult as she vomited alot i think the courging a bit like colicy babys demand feed as the feeding seems to sooth the pain for a while. she had a very distinct odure and always had a sore bum and bacterial rach around her nose mouth chin and even spread down her body. I realised it was milk when i weened her to cows milk and also used ff top up due to the gourging as it would seem to keep her asleep longer in the night. but it gave her a sore bum.

i had a hunch and was but not taken seriously untill i demanded a feacal sample as i did not belive it was a stomach bug. when she started on cows milk was at her worst when i had to demand a referal. she was a year and we did not introduce any cows milf for 18 mnths and she was fine, i think it reoccurs at times as she gets bloated and has the same smell about her so I cut down her milk intake. so luckily for us nothing as seriouse as your ds. i would def get more pushy if i where you is the only way at times.

Thanks Superoz (just spotted your post) I'll mention your points at the drs tomorrow (hopefully will get an appointment) You make perfect sense.

The way we have been treated seems ridiculous looking through everyones posts. (Although it was my idea to do the chocolate at the end of the day...)(but I wouldn't have considered doing it had someone not talked to me about doing challenges at home)

I am going to make a fuss tomorrow.

Crikey what an awful and worrying time you have had Allhallows. Am glad you have been able to get to the bottom of it - but it sounds like a nightmare at the very least.
Fantastic that you stuck up for yourself and pushed for help (something I definitely need to do more of.)

good luck

DS has had food challenges for milk, they went fine, give him a bit of dairy every day and his asthma get wild. So even the challenges may be wrong.

I think you should be carrying an epipen, and if your doctor insists in not giving you one, make a fuss about what happened today.

With regards t the original question, I would be tempted to call an ambulance if the child is experiencing breathing difficulties and you don't have an epipen at hand. If you had one, you have more space and tie to wait for the Piriton to work.

I'm sorry to scare you but you don't have much time to act if your child stop breathing, you have minutes, just minutes, to react to the situation.

Now, with regards to chocolate, if your child is allergic to nuts treat them with caution as there is a high risk of transcontamination from other "models" of chocolate which may have been prepared in the same equipment beforehand. According to what I have been told, the equipment is not washed between making a chocolate with nuts and doing another version without them, therefore the fist batch is expected to have traces of, or even nuts, in it.

nottired now has covered it all, I think. Might be an idea to speak to Anaphylaxis Campaign's helpline. Also, this NHS page warns against home food challenges - "...Never attempt to carry out a challenge test at home because there is a small risk that you will have an anaphylactic reaction."

Stottie - how terrible! But I'm afraid really similar to the start of my DS story.
Re home testing:
His consultant placed my son on a strictly excluding diet and referred us to a paediatric dietician. Under both their care we gradually tested some foods. Some of these I did do at home, under careful instruction and for those allergens which we agreed were less likely to have an impact. First I touch tested against his arm. If no reaction, a day later touch test against his lips, again if no reaction, a day later tiny bit on tongue and so on. It helped me enormously as it did allow us to bring foods back into his diet (soya, tomatoes, fish). More significant allergens, to which he'd shonw a higher RAST or scratch result, we only attempted once the scores had been reduced under the consultant.
Re treatment: always call an ambulance - never trust a reaction to get better. I have never been told off for calling an ambulance for my son.
Re: epi-pen - i would push for one, the properly trained excuse is a load of crap - I'm as daft as anyone and can bang an epi-pen into my son like any nurse could! ;D. It's having the bottle, not the skill!!
Re: vaccinations - we had the MMR under supervision in hospital, the GP's refused to treat him - we also had 12 medical students keen to see my wee lad react - mmmm!
Good luck you - you're doing really well - I know it's a total bugger but believe me it gets better. Fight your battle for the epi-pen and referral to a good consultant - sounds like you need to.

You don't have as much as 30 minutes, actually may be not even 10. As far as I'm aware an adult can't be deprived of oxigen for 10 minutes without getting brain damaged. You have less time with a child.

I agree with many of your posters, home food challenges, are not safe.

testing in the form of skin prick tests, bloods tests and history are taken in to accounte before food challenge is considered.

then, ideally, and this is of course depends oon your local allergy care, a food challenge in a hospital setting.

as for reactions, again ring the anaphylaxis ccampaign, until then, here is a explaination in simple terms about a reaction.

when the body mistakes a food protein as being a illness, the white cells realise histamine.
histamine have two main effects on the body.

1. they cause the smooth muscles in the throat and chest to narrow and constrict.

1. small blood vessels start to leak blood, and diverts blood from major organs, such as heart and brain.

when you are looking at your child, its wise to be aware of whats happening inside your child.
the coughing was a sign of the narrowing of the muscles in chest and throat, causing an astma response. as was the difficulty breathing through the nose.

The sleepyness can be put down to the piriton, but also its worth considering the signs of lowing blood pressure, such as being pale, faint , floppy and shocked looking.

i think, its also worth keeping a close eye on your child as some reactions can come back, some hours later.

the severe skin reaction does happen.
the red skin flushing is another symptoms and is quite common, and the hives once they die down, result in ezcema.

be extra , extra careful with food for some time now, as body after a big reaction is pretty hyper sensitive.

now, i have to confess that did the same thing as you and didnt call for an ambulance, as i only thought that the peanut allergy could kill him....and hadnt had any medical support at that time.

dont beat yourself up about it , your kids alive, and next time you will know what to do.

Get epi pens, i suspect that you have been put off because your child is under a a year, or under 25 lbs in weight.

you still have a young child who may outgrow by 5 yrs or so. so dont give up hope on that score!

It's all been said already - just want to say I'm so glad your DS is okay. Sounds like you have been having a scary time.

I called an ambulance about 10 days ago for my DS when his face started to swell. I wasn't sure whether or not I should be dialling 999 but the ambulance staff were very clear that I had done the right thing. One said, "I would have called 999 if he was mine!"

Best not to take any chances with allergic reactions. Again, really glad your DS is okay and hope you manage to get some better medical support soon.

My God I am completely shocked.

Thank you so much for your responses - I feel so much more informed but also quite sickened.

I did phone the GP this morning (couldn't get an apt) but again not much joy. No epipen - he suggested I speak to the consultant in January. How do I grow a spine without sounding hysterical?

Eragon - your post re:reactions. Just shocking - ds still has red marks like patches of corned beef on his leg - perhaps small blood vessel leakage?

Thank you all for being so helpful and supportive without calling me a silly moo. So glad I started this thread. X

Thanks for link to clinics Nottired. We are being seen at the Harrogate clinic but am wondering if I can be referred somewhere else.

Hi stottiecake (I know you dont I??) just wanted to show my support, you have done a fab job with all the allergies throughout weaning and BF your lovely DS, you have had great advice on here also.
Any chance you could phone dietitcian (sp?) and/or consultants secretary and say things have changed and you are very concerend and dont want to wait until January can you be seen sooner?

stottiecake if all is well then january sounds ok, no more challenges at home though, if you are worried about anything go to gp and request your apt be brought forward if no joy call the consultant direct to get apt moved forward. if anything you are worried about or panicked about call 999. sounds like you just need some support and have certanly got that here, i didnt have too much advice but so reasured there are so many with very sound knowledge here.

another thought - if you get another reaction do call 999 - the hospital will notify your GP which should result in something sooner. good luck1

Hi Ellie Thanks for your loverly post! Have tried phoning dietician but she has not called back yet

Indeed Allhallows - wonderful support and advice here. Will not be messing about wondering whether to phone ambulance if there is a next time, believe me. Too scary!

Ds has been fine today - actually on top form. Am so grateful all is well.

Just want to say thanks to stottiecake for starting this thread as it has given me the back up I need when seeing dd1's paediatrician tomorrow.

She reacted to egg at 12 months old - we had it confirmed by skin prick and IGe testing a couple of months later.

Then she developed asthma (also has eczema).
Because of our circumstances we are no longer able to take her privately and have been seeing a paed at the hospital where she is treated for the asthma.

The paed re-did her blood tests last year when she was 3 but no facilities for skin prick and told us she was no longer allergic to egg and to start introducing small amounts.

She tolerated some things with egg (biscuits, bread) for a while but then she got some raw egg on her skin one night when I was out and had a massive reaction. DH wasn't sure what to do and gave her anti-histamine.

I was shocked at her condition when I saw her a few hours later and rang OOH's doctor who told me to give her steroids (Prednisone) which we had in the house and she was OK after 2 hours.

She is now unable to tolerate any egg.

I feel the paed really let us down and what other people have said here has given me the knowledge and determination to push for a proper allergy referral for her when we see the paed tomorrow.

I am terrifed by nottirednow 's post at 9.23. DD has had the facial swelling and is asthmatic. The paed knows this and sent us home with no Epipen or any advice other than to give her biscuits.

Sorry for the long post.

Hope your ds is well again stottie

Hi Suiledonne - I name changed a while ago but was on the Nov 08 threads.(Barb )

So sorry that you have been so badly let down - it really is shocking when you think of what is at stake.

I was also terrified by Nottireds post - but so glad she posted it - it really puts things in sharp focus doesn't it?

Hope your apt tomorrow goes well and you get your referral x

Well Stottie, I can't add much to the discussion that hasn't already been said. I am totally shocked at the advice you've had and would consider reporting the dietician or at least mentioning the advice and incident next time you see your consultant.

It sounds like you're up in my neck of the woods, we go to a clinic at the LGI in Leeds and have always found it really good. Mr Chetcuti is the paediatrican (not an allergist but there is one that comes down to the clinic from Newcastle once a month to assist). His team is great and there is a specialist nurse that you can contact any time with queries. She's been a great back up for us recently with ds starting school (he has multiple allergies) and has liaised with teachers on our behalf. Try and get a referral if you can. The second in command is called Dr Hodges I think and his daughter has multiple allergies as well so although he's not an allergist his own personal experience really helps.

Let me know if you want further info and I'll try help.