Advice needed - expected levels of care for a 2YO with multiple food allergies?

[SuburbanMomma]

Sorry for just swooping in here with a post. I had no idea this area of the board existed. But I need some people to share their experiences.

In short I am currently living overseas. I have a 2YO with multiple food allergies (I'll summarise these below) and my employer is questioning what they are prepared to cover in terms of allergy reviews/access to a paediatric allergy specialist overseas as they want to ensure we are getting no more than we'd be entitled to under the NHS. I know care varies across the UK and can vary between GPs/hospitals and even individual allergists depending on the child's history. Our experience in the NHS was only when my 2YO was diagnosed with milk allergy when he was an infant and we did not know at that time that he had further allergies. Oh to be back in those easy days when we (mistakenly) assumed he'd be free of his milk allergy by 18 months!

The allergies we are dealing with are:

1. Milk - diagnosed in the UK at 4 months old. He was reacting to milk in my diet. I totally eliminated dairy and symptoms disappeared.

1. Egg - diagnosed overseas. We had suspected it as he'd reacted the first time we'd introduced egg to him at 14 months.

1. Peanuts - diagnosed overseas. Added to RAST and skin tests as part of initial consultation and both were strong positives.

1. Mustard - diagnosed overseas following severe (though thankfully not anaphylactic) reaction to ingesting tiny amount

1. Sesame - suspected though not formally diagnosed. Recent severe skin reaction to touching small amount of hummus (never eaten before)

My son is under the care of a paediatric allergy doctor where we are living. He had an initial consultation last summer when the doctor did RAST tests followed by skin tests. We were advised to come back in a year. That is all. We have Epi-Pens on prescription.

Now we are being told by those who deal with our healthcare overseas that even an annual appointment or care from a paediatric allergist is possibly more than we'd get under the NHS (this without actually having my son's medical records). I'm not sure how they can make that judgement but anyway.

So what I'm interested in is what level of care/guidance etc those of you with toddlers/younger children who have multiple food allergies have. I don't need to know exactly where you are but it would be helpful to know which general area of the country you are in. Also if you have Epi-Pens and whether your child has ever needed treatment with one?

Not sure how much help this will be, but your post reminded me of this thread. It seems that there is a wide variation in the care you might receive depending on your location within the UK.

From our point of view, ds is only 1 so I don't have a lot of experience of hospital visits, but we have been seen once - last November - and will be seen again in December this year. However, ds has relatively few allergies ('only' egg and cashews) so it may be that he would be seen more often if there were more, I don't know.

Might be worth googling NICE guidelines to see if there is any official stance on a minimum expectation for allergy care?

HTH

Hello SuburbanMomma and welcome to the MN allergies board! My DS is nearly 5 and allergic to milk, wheat, eggs and nuts. He also has severe eczema (now under control generally) and mild asthma. He's under the care of a consultant paediatrician who's in fact a chest specialist but as there aren't any 'true' allergy specialist in my area (South Wales), he deals with all the children with allergies referred to the hospital. We used to see him every 6 months but this has recently dropped to every 12 months because his asthma is well controlled and his allergies don't show any sign of changing at the moment. His consultant told us that if when his RAST and skin prick test results show significant improvement then they will think about doing another food challenge (he had a wheat challenge just over a year ago and it didn't go well). We carry antihistamine medicine, asthma inhalers and 2 epi-pens wherever we go. Thankfully so far we've never had to administer the epi-pens but we regularly have to give antihistamine due to contact allergies (he's never accidentally ingested something he's allergic too, not yet anyway!). With regards to medication, he also still has Neocate on prescription (dietician wants him on it until he's 5 when he will switch to soya or oat milk) plus we're very lucky to get 1 loaf of wheat free bread and 1 pack of wheat free pasta per month but I know that this is only because our dietician fought for this (only coeliacs are technically entitled to foods on prescription in the UK and even this is under threat due to the cuts).

So, as far as I can tell, you're definitely not receiving more medical care than you would in the UK. In fact, given your son's age I think you should be seeing the specialist every 6 months but that's just based on my experience. I have to say that getting the referral to a consultant and getting the initial diagnosis was a real battle and I know from other mums that this is often the case but once we did, the care my son has received has been pretty good.

Our DDs care has been great. Took a while for first appointment after she had her first reaction to milk at 6m, but since then has been wonderful.

We see the specialist every six months, and had a skin prick test at first appt, and have had another one a year on. In between we have had an appointment with the dietician every six months. These have been staggered, so in the children's clinic every three months.

At 2.5 she is doing well, so dietician is down to yearly review now (but can make appt. if any concerns). She is due to have a challenge next month. Before beginning pre school.

She has dairy, egg and dustmite allergy, with borderline result for peanuts. None of her reactions are anaphylactic (thankfully).

I think your care has been well under what we have received on the NHS.

Great thanks for all the responses. I will come on here more often not least because I really do need to understand what support there is in the UK since we will be moving back eventually and most likely just before my son starts full time education (a headache I'm not looking forward to).

I know that in the UK we'd be seeing a dietician and we are missing that here. I could probably push for it but my son is in really good health despite his limited diet. He's consistently from birth been between the 80th and 90th centile for weight and is on the 99th or above for height. I belong to a very good local support group here for families of children with allergies and we are somewhere where food labelling is mandatory and specialist help is easily accessed and available. His doctor is well read on the latest research. You can probably guess which area of the world we are in :-)

We've so far avoided a reaction requiring use of an Epi Pen or a visit to A&E. Some of that is down the the fact that his first allergy was diagnosed pre-weaning and therefore before direct exposure to milk and his peanut allergy was also diagnosed before he had ever eaten one (his RAST scores and skin prick reactions suggest high allergen levels although I know this doesn't necessarily correlate with scale of reaction). The other potent allergen, sesame, has not been officially diagnosed but the fact that his face was covered in hives after a miniscule amount of hummus just under his lip suggests that too is likely to result in a severe reaction. We have always erred on the side of caution and so are generally on top of what he's eating and he isn't in childcare at the moment either.

Anyway thanks again for all the experiences. If anyone else can share then please do. It's all useful background.

Hi, we live some distance from london, but are with the st marys pad allergy clinic.
we have routine 9 month appointments, with extra days for food challenges if required. We also can ring for advice and speak to a allergy nurse, or leave a message for the consultant.

so far we have had about 4 or 5 food challenges over the years, and had lots of medical support for unexpected reactions and skin prick tests etc etc.
we have also had lung function tests, although he is not asthmatic and they wanted to check after having an asthmatic response to one of his many triggers.

because of distance we did see a dietian locally when he was younger, if we were able to see one with the clinic they would have had some training and understanding of allergies. our local dietian was as helpful as she could be, but clearly didnt have a clue about allergies.

I read that u suspect the sesame, but equally chick peas are a huge suspect, as you are dealing with peanut as well. 5% of those allergic to peanut are also allergic to other legumes. I do think this should be ruled out as sesame does restrict your choice on foods, label wise, so i would get that sorted out. due to your childs long food allergy list, enviromental allergy testing would be routinely done at a pead allergy clinic. This is also worth investigating. As well as the possible problem of asthma /control.

good luck.

My dd only has a peanut allergy, but we initially suspected tomato and cashew nut allergies as well. She was seen at Addenbrooke's allergy clinic as we live in Cambridge.

She had skin prick tests to each suspected allergens and also other common allergens (e.g. dust, eggs, milk, other nuts etc). She was tested for cashews twice, a couple of months apart, as she came up negative in her first skin prick test despite having an allergic reaction at home while eating cashews. (This second testing was very reassuring as I'm now totally convinced that the reaction to cashews was actually because the bowl she was eating the from had traces of peanuts in them.) Following each skin prick test we had a consultation lasting about an hour with the head of the allergy clinic. We were given handouts about avoiding nuts, a personalised treatment plan and told to get anti-histamine and epipens from our GP. We have also been told to come back if she has reactions to anything else. She will be reviewed in the clinic in one years time.

My understanding is that the hospital is very proactive in the community in providing epipen / allergy training for local nurseries and schools.

Eragon - thanks. It's almost certainly the sesame. Previously he's had a hummus we can get here that doesn't have tahini in it and he's been fine. I tried a little bit of it on his lip today and after nothing happened he had some with his lunch. He was fine. He's also had lamb and chick pea curries before with no reaction. Peanut is the only legume he's allergic to as far as we know and even then he's never actually had peanuts in any form so we only make that assumption from a high RAST score and a significant reaction from the skin prick test.

This has all been really useful. If we were still in the UK we'd probably be seen at Guys/St Thomas' or possibly St George's. It sounds like the people advising my employer are talking nonsense. They are suggesting that we'd be unlikely to see a consultant even once a year (even given the fact we are dealing with multiple allergies and his age) and that it would only be RAST tests even then with skin pricks and food challenges only done if it was felt absolutely necessary. I know that's simply not true and this thread highlights that.

Hi SuburbanMomma,

Just to echo what people have already said really. DS is now 5.5 and was diagnosed at 6 months with the same allergens as your DS (apart from mustard). DS went to a combined eczema/allergy clinic and was seen every 6 months for the allergy side of things up until he was 4. We're now seen annually with skin prick and RAST when appropriate. There is a specialist nurse we can call on for advice whenever we need it (she came to school to advice as well). We see the dietician annually to monitor weight/height etc and had food challenges when appropriate.

DS is pretty well monitored and we've been lucky and only ever had one slip up when he was 18 months old that ended up in A&E. It wasn't anaphlactic but his breathing was affected so was put on oxygen for a time. Our consultant prescribed epi pens when he started pre-school as a safety precaution so I felt a little safer about the process.

HTH