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?

I haven't had time to read the whole thread but just saw you are in Yorkshire.
We are under Dr Gillies at Harrogate which we have found good. we don't live in harrogate but were able to be under him through the'Choose and Book' system where you can choose which hospital you go to.

All the food challenges have been in hospital and heavily monitored.

have had to push for an epipen though and it sounds as though you need one.

Well done on all the cooking of roast dinners! I feel your pain as similar here!

Good luck with it all.

Hi stottie, I didn't realise it was you! Haven't been on the Nov thread for ages.

Our appointment did not go too well. I was exhausted - up all night with dd2.

The asthma check up was fine and then I asked him about the allergy.

To begin with there is some confusion about whether she is allergic to egg white, yolk or both. The initial tests (skin prick & blood) at 14 months showed allergy to white but the blood tests he requested show her to be allergic to egg yolk which I understand is much more unusual. DH is sure it was egg white that got on her skin and caused the huge reaction she had.

The paed said that egg rarely, almost never causes anaphylaxis - he has never seen it in his career. He said just keep her off egg and have her re-tested when she is over 5. He totally dimissed the need for an Epi-pen or referral to paediatric allergist. I was too fuzzy headed from lack of sleep to make a coherent argument about it.

We have a nice GP and I think I will just make an appointment and talk to her about it. I am sure she will give us the referral and I feel more comfortable talking to her.

I feel like such a wimp now. I was so determined last night to sort it out but the timing with dd2 being ill in the night just went against me.

I have had a bit more time to look back at the thread. You have been given some good advice about anaphylaxis and not delaying phoning 999. I have found it useful reading back just to remind myself.

You need to make it a priority to see a better consultant and get an epi-pen.

Sadly many of us on here have had a fight to get one. Personally I ended up crying on the phone to a secretary to see the consultant we are under and I had a real fight to get the consultant to give us an epipen.

I can give you more details if you are in the Harrogate area.

Evening

Aw Suildonne how frustrating! Yes definitely get a referral from your GP. I know what it's like when you're ready to go all guns blazing but end up just going along with it. It sounds like you really could do with some support and information too. You're not a wimp it's just hard when you are trying to put your point accross to an 'expert'.
Hope dd2 is ok. I think we have similar sleep issues with our November babies if I recall correctly?

Whelk We are seeing Dr Gillies too. I don't know... maybe its because I haven't known that I needed the help until now. Our apts have basically been him telling us we're doing great, come back in a few months kind of thing. I bf my ds as he hasn't taken to any of the cmp free formulas so have discussed that. Also he told us what an allergy is and that ds has rubbish genes haha!
Interesting that you have had your challenges at hospital. Actually noone in the allergy clinic has mentioned challenges. (just the dietician)

nottired Thank you for your advice about how to approach the consultant. I actually woke up this morning experiencing a moment of clarity (I tend to mull things over until I suddenly have an 'answer') I realised I needed to put those very questions to the consultant (I compiled a similar list!) and phoned his secretary. My points were:
-how do I know when to call an ambulance?
-Noone has ever described the symptoms (of an anaphylaxic reaction)to look out for - how will I know?
-What are the reasons for me not having an epipen? What are the risks of me having one compared to the risk of me not having one?
-How much more careful should I be with ds' diet following this reaction.
Noone has called back. Will phone again tomorrow with the points I missed from your post.

In fact I'm just going to go through and make a note of everyones advice and information.

I will be prepared!

Think others have said it but with CMP allergy advice is not to challenge at home at all. We have that and egg too - with egg they are a bit more relaxed about cooked egg, which we thought ds was tolerating OK. But for both of these they recommend a hospital challenge - where you go in for the day and they feed lo with tiny amounts and monitor. They told me the reason is that it is possible a bad reaction might occur, even if reactions so far have been manageable with piriton.

DS now 3, and has had a few accidental exposures which are effectively challenges (mainly grabbing wrong food at nursery), this is bad but in fact is useful information as we know he still reacts.

Poo r you with that reaction - it does sound a bit scary and I think you did the right thing with piriton. It's normal for them to fall asleep as piriton is sleepy medicine and their systems are in overload anyway and its probably best way to cope. I would go on the safe side and call 999 if I saw any swelling in the mouth / neck area at all.

Thanks Heliotrope
Have had a cc'd letter from the consultant to our dr asking for junior epipen to be prescribed and allergy tests to be carried out in hospital asap.
Things are moving in the right direction (at last!)

Hi Stottie.

I work in the ambulance service, I am ex road staff but currently taking 999 calls for them.

All I can say is don't hesitate to call 999 for an ambulance. I hate to sound scary, but reactions can and often do get worse the more often someone has a reaction to something, eg the first time it's not too bad, the second time it's worse, third time is worse again.

Your child doesn't have to be at the scary stage having difficulty in breathing stage etc for you to call an ambulance. If you see the start of a reaction, of which I think you are aware now and you don't have meds to treat it (epipen) then call us, it is better to get us** out early and be able to treat at that stage than when a reaction is severe and needs aggressive treatment. Even when you have an epipen you can/might need to still call us.

This goes for anyone you think is having an allergic reaction.

I'm not by way of posting this saying you were wrong not to call us last time. What I'm trying to say is don't ever worry about calling in the future.

**By us I mean the ambulance service by dialling 999

Feel free to message me if you want.

That's good to hear 100years. There is that fear of wasting the time of the emergency services but I certainly won't hesitate if we ever find ourselves in a similar situation.

Thanks for taking the time to post - I really appreciate it

I haven't read the entire thread, I'm afraid but want to express dismay that you're being encouraged to do food challenges a) at home and b) with so little control over the quantities of allergen. I have only done food challenges in hospital in controlled conditions.

I would go to the GP and insist on having an epipen. Really, they are not that tricky. THey're actually designed to be simple to use in life-saving situations. Yes, it's a pain to lug them around everywhere (and you can really scare the shit out of other mums when you hand them over for playdates) but what price your child's life?

Good luck!

Thanks Specialmagiclady

Yes very dodgy to be doing challenges at home I now realise. What a way to find out!

Thankfully the allergy consultant has now stepped in and we are being prescribed an epipen and have just (this evening) had a phone call asking ds to go for allergy tests on Tuesday.

I will be asking if it is normal procedure for dieticians to suggest challenges are undertaken at home

Great news! Glad this is being taken in hand!

Babybarrister - thanks for the link - really interesting reading.

Glad you have the epipen now :o Hope the tests go well.