Failed Peanut Challenge - what next

[Lima1]

Its terrible that the Irish healthcare system is so poor that I have to turn to an internet forum for advice, but needs must.
My DS (4 yesterday) had a peanut challenge last Friday 18th. He had SPT and RAST tests done a fair few times since he was a baby and these had always come back positive for peanut allergy. We have always avoided all nuts (he has other food allergies most of which outgrown). The hospital we have always attended did an Arah2 test and it came back negative. We were then referred to another hospital with a specialist to see about a peanut challenge. The did SPT which came back negative for all nuts and ppeanuts, they also did an Arah2 test and it came back negative - so a challenge was organised.
The challenge went like this with crunchie peanut butter
put on hand - wait 15 mins
put on left cheek - wait 15 mins
put on lip - wait 15 mins
eat 0.5grams - wait 15 mins
eat 1 gm - wait 15 mins
eat 2 gm - wait 15 mins
eat 5 gm - wait 15 mins
eat 10 gm - wait 15 mins
eat 20 gm - wait 15 mins
he passed it all with no reaction only a red hand which is ok. We waited for 2 hrs post the 20gm dose and he was discharged.
We got home at 8.30pm he ate a slice of toast and milk and went to bed.
At 7am the next morning he woke and had quite a bad rash on his left cheek, it was very red, looked slightly swollen and had raised pimple like spots. I rang the ward and the nurse said it coud be a delayed reaction and to give Zirteck. We gave Zirteck twice on Sat but the rash kept spreading. On Sunday I brought him back to the hospital. I was forced to go through A&E and was told it was a viral rash. I insisted it wasnt as he had no temp, doc checked his throat and it was fine. His temp had been checked numerous times during the challenge on Fri the day before the rash. The rash had started on his cheek exactly where the peanut butter had been. I asked that the doc who conducted the challenge come and look at the rash but she refused to come done (she was on duty on the floor above). She told the ER doc over the phone that it probably was a reaction to the peanut. He was prescribed oral steroids for 4 days. Shortly after the first dose the rash started to fade a bit. At this stage it had spread to his other cheek, under his chin and trunk.
I asked what this meant and was told to avoid all nuts and peanuts. I asked about informing the professor who he is under and I was told the ER will send a letter to my doc who must send it back to the hospital!
There will be no follow up.

So im looking for advice please, does this sound like a delayed reaction? What does that mean, can his reaction get worse if exposed again or will he always only have a delayed reaction affecting his skin?
Thanks for any info and advice.

Poor you and your DS. Sounds like you had a very unpleasant experience with some very unhelpful health professionals! What you described does sound like a delayed reaction so I personally would continue to avoid peanuts and other nuts for now. Unfortunately allergic reactions are very unpredictable and there is no guarantee that any future reactions would be the same - it is possible that future reactions could be worse but sadly no way of knowing.

Thanks for the replies. It wasnt only the aftercare that was terrible the whole challenge process was disgraceful. DS had to fast from 8am, we arrived at the hospital at 10am. The challenge wasnt started until 2.30pm - at this stage DS was fasting for 6.5 hrs. The first half of the challenge was conducted by a quite cross doctor who had no patience with DS. He was getting distressed at the fact peanut butter was near his mouth and was roaring crying. The doctor was literally trying to force the spoon into his mouth and was giving out to him. She kept telling me she was cancelling the challenge as he wasnt cooperating. The second half was conducted by a doc who kept disappearing after giving him some to eat, each stage was supposed to be done at 15 min intervals but she would be gone for 35-40 mins and I would have to ask a nurse to call her back.
In the end the whole thing wasnt finished until 7.15, over 9 hours after we arrived at the hospital, DS was fasting for nearly 11 hours.

The rash is unusual looking, I have pics on my phone in case they are needed in future. It looked like acne, red patches and pimples. On the right side of his face it was the same but with a definite hive, his back and trunk looked like a heat rash. The rash has faded somewhat but is still obvious.
I cant even be 100% sure it was an allergic reaction but my gut feeling is that it is, mainly because it originated exactly where the peanut butter was smeared on.
I am writing a letter of complaint to the HSE and going to request a meeting with the Professor (I have never even had an appt with him only his nurses).
I have asked his playschool to send out a letter asking parents of the kids in his class not to send in peanut or nut products. The staff in the room have said children are currently bringing in peanut butter and Nutella sandwiches.
Thanks again

Sounds like you had a terrible experience, your poor DS. I would definitely complain to the hospital. Is there another hospital within travelling distance you could ask to get referred to?

For now it sounds like peanuts are best avoided, but I would disagree with asking his preschool to exclude nuts. Current advice is that even in case of anaphylaxis (which this isn't), it can be counterproductive to exclude nuts as a) it doesn't teach children to take responsibility for their own allergy and b) it can lead to complacency within the setting as staff could assume there are no nuts in anything (but you will always get some parents who forget/send in nuts anyway/aren't aware something contains nuts etc).

And I can't believe they forced the spoon into his mouth DS1 (6yo) has been offered an egg challenge by his hospital but he doesn't want to and his paed made it quite clear they wouldn't force the issue.

He was at another childrens hospital in the same city but they couldnt do challenges there which was why he was referred to this hospital. As far as I know the only other one is in Cork (these are in Dublin) which is a couple of hundred miles away.
I agree with you to an extent about exclusion policies and up to this point have told the school I didnt want one. He also has an egg allergy which is quite severe and he has epipens. A child in his class who he regularly sits next to brings in egg sandwiches everyday. The staff watch for this and move him for lunch. Up to this point I have asked the staff to watch for children bringing in egg/peanut/nut products and to just move my DS to another table and wash the kids hands and face after eating them.
The class is small there are only 12 children in it. My concern is that peanut allergies can be more severe than say egg. I spoke to the staff yesterday about this and they brought it up with me that some parents forget/ignore fod bans and that a child might bring in a banned food and that they cannot guarantee it never being brought in but that they will continue checking and separating him and washing the hands and face of the child.
Its so hard to know what is the right thing to do especially when no doctor will give me proper advice. The A&E doc told me his reaction will always be a delayed one, that he didnt need a pen and just avoid them.

I meant to add that I was shocked by the doctor too. She had no understanding that a food challenge is an emotionally fraught experience for both the child and parent. My DS has been taught not to eat peanuts all his life and despite my preparing him for the challenge he was very apprehensive and very resistant. Instead of letting me gently coax him into eating it she was giving out to him, shoving the spoon at him and telling me that she was going to cancel the whole thing as it wasnt progressing as quickly as she wanted and she wasnt going to go through this at each interval. It was terrible.

Your experience is truly shocking Lima. My DS has had 2 food challenges in hospital and while they were both very stressful, the doctors and nurses were fantastic and did all they could to make the experience as untraumatic as possible. I'm glad that you are going to complain.

On the subject of blanket bans, I too do not believe that these are the best way to keep our children safe. Firstly, it is a myth and common misconception that nut allergies are somehow worse than any other food allergy. This is simply not true. It's just that nut allergies are the most common type of food allergy and therefore tend to be focussed on in the media etc. A severe allergy is the same no matter what the food that causes it. You say that your child has epi-pens for his egg allergy and the children bring in egg sandwiches but you seem more worried about the nut allergy even though he's never had an anaphylactic reaction to nuts. I think maybe you've been misled into thinking that reactions to nuts are more likely to be severe than for example egg but this is definitely not the case. My DS is far more likely to have an anaphylactic reaction to a drop of milk than a nut as his milk allergy (to date) is more severe than his nut allergy. This can change over time but please do not think that nuts are more dangerous for your son than eggs as from what you've described, eggs are far more likely to cause him serious harm than nuts at this stage.

The other point about bans is that they are virtually impossible to enforce (do we expect staff to open every child's sandwich to make sure it doesn't contain peanut butter?) plus they give a false sense of security. It is far better to manage the risk of a reaction and plan carefully for how to deal with them if they occur than to try to avoid them altogether. Your child is bound to encounter foods he's allergic to throughout his daily life, in the park, at softplay, in the street. It's better to teach him and those around him about how to stay safe than to simply ban the foods altogether, however scary that is for us poor parents! My DS is allergic to milk, wheat, eggs and nuts so I think it would be virtually impossible to expect his school to ban all these and I wouldn't want them to anyway. It does mean that he occasionally has reactions in school but the staff are very good at dealing with this and we all learn from each incident. For example, they now ensure he always has PE in the mornings as he was coming out in hives from sitting on the floor in the hall after lunch due to the floor not being completely clean.