Allergies and experiences

Silver_Lilly

We wanted to share with you some of the experiences we have had to get over since discovering our two year olds allergies.

Dr’s, Consultants and Dieticians all giving us different advice on what is safe for her to or not to do and not do eat and not eat. This Includes Members of the same team. (Following the information we researched and provided them they are now changes their guidance and food lists!)

Restaurants telling us they cannot cater for at all or we can bring her own food.

Moving several times (4) at a park where we took her to listen to a story time as people were eating and shelling nuts.

We have been not invited from many parties. (Where we would have been previously welcomed.)

And been told although one of us has 20years of professional childcare Experience and the other is a police Sergeant with over 15years experience. We could not take another child to a children’s event as we would not be able to keep someone else child safe!

But the most recent and annoying was our recent communication with NESTLE:

Dear Nestle,

We wrote to you regarding updated information as ours is now out of date and therefore has been recycled!

We were most concerned that your reply stated that you are not always able to provide people information. Although your original letter said we should contact you regularly for updates. I will be sharing your response with other people in our situation.

May be we should just stop buying your products if you can’t reassure us that they are safe!

We looked at the link you supplied and in fact it states there “that as nut allergies tend to be severe, often resulting in anaphylaxis, we keep a record of all the recipients of the nut free list to ensure that we can notify you immediately of any changes to the list. For this reason, the nut free list is not available on the website.”

There fore please reconsider your hasty reply and answer the rest of our questions or refer our letter to someone senior!

Will you consider making a combine list available to make shopping for people with multiple food allergies easier?

We would also like information on your policy that ensures that you can give correct information to people with allergies such as this.

Please also answer the questions below as added to this we are obviously concerned with cross contamination and the environment in which supposedly ‘safe’ food is manufactured.

How separate are your nut products?

How are your machines cleaned in between products?



Can you please inform us why you do not make your food products nut free as there are so many people with nut allergies and the increase on nut allergies in children is on the rise?

These children will then obviously one day become your target market and will have already learnt from an early age which companies cater for them and which don’t. This is particularly relevant when some of your products do not expressly contain nuts and are just contaminated or produced on the same lines.

Further to this you suggested that we contact the food intolerance data bank, which tried to, but no one in the medical profession had heard of them and when we finally tracked them down they said the database had been disbanded a few years ago?

Can you tell us more?

Sincerely,

Mr and Mrs ***************







WE ARE TILL AWAITING A REPLY!

However I was so annoyed I sent my very first letter attached that I sent to them when I first found out about her allergies to them again but this time via my mother and her address.



We would love to hear your comments on our experiences.

LJM

they ought to be more forthcoming with there info imo,i have 2 friends with girls one has a nut allergy shes now 18 but it was a nightmare trying to find things when she was smaller to eat and other has a dairy allergy,which doctors took forever to diagnose.ive seen both parents going through extreme suffering as they have not had help/advice they have needed and wanted from there doctors

Silver_Lilly

THank you for replying.Hoep they are doing well.

RadoJo

To be honest, although I can understand your frustration at the difficulties you have experienced, I don't really think there is much that restaurants and food manufacurers can do. In the case of nut allergies particularly, the potential effects of eating contaminated food are so severe that they simply cannot take the risk of guaranteeing that their products are completely nut free - even if they don't use any nut products.

In a restaurant that prepares dishes with nuts in them, it would be impossible to absolutely guarantee that nothing in the entire kitchen could possibly contaminate a nut free meal, or that there wouldn't be even the tiniest trace of an allergen on a utensil or plate. In order to ensure that they are not responsible (or liable, let's not pretend that there isn't the potential for a huge insurance claim if something were to happen to an allergy sufferer) for a serious health risk, they would rather not run the risk, and I can't say I blame them.

It is the same with parents at parties - there is no way that they can guarantee that there might not be a fragment of a pistachio in the carpet, or a smear of peanut butter on a door handle. People without allergies simply do not think about what they eat and where it all goes in the same way as someone with an allergy or their carers, and rather than expose your child to any danger, or themselves to the horror of something happening to your child whilst in their care, they think it is safer and easier not to invite them.

I know it must be difficult to see your little one excluded from so many of the pleasures that others take for granted, but unfortunately it is a situation I don't see changing as long as allergies remain so dangerous to so many of us.

However, the news always seems good in the field of allergy research, so let's all hope that by the time your daughter is older the scientists will have managed to eradicate the stranglehold of allergies, or at least minimise their effects.

TheWaltons_3

Silver_Lilly wrote: »

We wanted to share with you some of the experiences we have had to get over since discovering our two year olds allergies.

My Step-son has allergies and carries an Epi Pen. He has been this way since 3 and has adapted to it fine now.

Dr’s, Consultants and Dieticians all giving us different advice on what is safe for her to or not to do and not do eat and not eat. This Includes Members of the same team. (Following the information we researched and provided them they are now changes their guidance and food lists!)


Yes we have this too.

Restaurants telling us they cannot cater for at all or we can bring her own food.

The majority of people don't have allergies, the visits from people with severe allergies could be few and far between so they may see it as wasted money. I don't know?

Moving several times (4) at a park where we took her to listen to a story time as people were eating and shelling nuts.

This is not other peoples faults. It is natural to eat food in a park!

We have been not invited from many parties. (Where we would have been previously welcomed.)

A child going into anaphylactic shock would be hard to cope with, even for an experienced carer. People are worried sick this may happen. Understandable, I would be devastated if, as a result of my party, a child had to use his/her Epi-Pen and be rushed to hospital.

And been told although one of us has 20years of professional childcare Experience and the other is a police Sergeant with over 15years experience. We could not take another child to a children’s event as we would not be able to keep someone else child safe!

But the most recent and annoying was our recent communication with NESTLE:

Dear Nestle,

We wrote to you regarding updated information as ours is now out of date and therefore has been recycled!

We were most concerned that your reply stated that you are not always able to provide people information. Although your original letter said we should contact you regularly for updates. I will be sharing your response with other people in our situation.

May be we should just stop buying your products if you can’t reassure us that they are safe!

We looked at the link you supplied and in fact it states there “that as nut allergies tend to be severe, often resulting in anaphylaxis, we keep a record of all the recipients of the nut free list to ensure that we can notify you immediately of any changes to the list. For this reason, the nut free list is not available on the website.”

There fore please reconsider your hasty reply and answer the rest of our questions or refer our letter to someone senior!

Will you consider making a combine list available to make shopping for people with multiple food allergies easier?

We would also like information on your policy that ensures that you can give correct information to people with allergies such as this.

Please also answer the questions below as added to this we are obviously concerned with cross contamination and the environment in which supposedly ‘safe’ food is manufactured.

How separate are your nut products?

How are your machines cleaned in between products?



Can you please inform us why you do not make your food products nut free as there are so many people with nut allergies and the increase on nut allergies in children is on the rise?

These children will then obviously one day become your target market and will have already learnt from an early age which companies cater for them and which don’t. This is particularly relevant when some of your products do not expressly contain nuts and are just contaminated or produced on the same lines.

Further to this you suggested that we contact the food intolerance data bank, which tried to, but no one in the medical profession had heard of them and when we finally tracked them down they said the database had been disbanded a few years ago?

Can you tell us more?

Sincerely,

Mr and Mrs ***************







WE ARE TILL AWAITING A REPLY!

However I was so annoyed I sent my very first letter attached that I sent to them when I first found out about her allergies to them again but this time via my mother and her address.



We would love to hear your comments on our experiences.

Why just target Nestle? There are loads of people out there. It is unfortunate, but something that just has to be accepted and you have to be more vigiliant. It is unfair that some children are allergic to the Sun and have to stay indoors, in suits. It is unfair that some people have Diabetes and are dependent on injections.

Life is not unfair. I find that foods are getting better, we managed to get Birthday Cake suitable and we managed to get Easter Eggs suitable - from ASDA.

3plus1

I had to use an epipen earlier today, for the first time in my life. The one thing doctors don't tell you, is how much those things bloody hurt...!

I've lived with allergies all my life, and what I can tell you, is that coping with allergies does get easier as you get older. At the moment, you and your OH are taking 100% responsibility for her, to be blunt, staying alive, and it's such a huge burden. But as she gets older, she'll be able to scan the back of food packaging, look out for things she can't eat, realise straight away if she's having a reaction and seek treatment asap...

The problem with having allergies, and a lot of parents with newly diagnosed children find it hard to accept, is that it is never totally possible to avoid children coming into contact with allergens. You have to live by calculated risk. Nestle, for example, tend to be quite good with their nut free chocolates. Of course they don't guarantee that their food hasn't been contaminated with nuts, but more than 9 times out of 10 when you buy a Nestle product that doesn't ordinarily contain nuts, it will be entirely nut free. Do check the packaging carefully though - sometimes they will sell something that doesn't have "nut" in the product name, but if you read the list of ingredients, nuts are actually a main ingredient...!:eek:

Cadbury's are brilliant - I've never had a reaction from a nut free Cadbury's product. :jA few with Masterfoods and Nestle, but the percentage is so low, you have to agree it's a calculated risk to keep buying.

I would avoid M&S and John Lewis own brand chocolate like the plague, and Kinnerton too. Lindt. Lindt is absolutely TERRIBLE for selling chocolate contaminated with nuts. Never buy the stuff!!

If I eat out at a new restaurant, I will ask if the meal I am ordering contains nuts, and if it's a restaurant that has many nutty foodstuffs on the menu, I'll ask the waiter to ask the kitchen staff to be especially careful with my food. They're always very obliging, when I point out that it's an allergy, and not a preference.

People without allergies can sometimes be very insensitive and unhelpful - don't let it get to you. If you can get across some facts to help educate them about how serious it is, great. If they're not those sort of people, let it slide. Don't let them get to you.

Maybe if you hosted a nut-free party of your own, it might be a good chance to get chatting to the other parents and demonstrate how easy it is to host an event without nuts on the menu? You may find other parents simply don't know anything about allergies and are too scared to have your daughter over, not because they're being awkward, but because they just don't have the right information.

Best of luck, and loads of sympathy.

TheWaltons_3

3plus1 wrote: »

Maybe if you hosted a nut-free party of your own, it might be a good chance to get chatting to the other parents and demonstrate how easy it is to host an event without nuts on the menu? You may find other parents simply don't know anything about allergies and are too scared to have your daughter over, not because they're being awkward, but because they just don't have the right information.

Best of luck, and loads of sympathy.

I am sure parents will offer Nut Free parties, but the thing is, there are Nut Traces is loads of party foods, and this can trigger the Anaphylaxia. So people unkowingly, can cause the children/adults to need their Epi Pens.

Zziggi

My children have a dairy intollerance (intollerance - not the serious allergy). So the problems we face are ALOT less serious then the OPs. The worst we'll get is a sick child vomiting with a poorly tummy and diahorrea. Not nice but no-way serious.

Even with this less severe dietry restriction, we have found it REALLY limits your life. Eating out is very difficult (especially when you don't eat meat as well). Now DS has started school we have got the parties to condend with. Some parents know DS has a milk intollerance and simply don't invite him because they say they can't accommodate (how difficult is a jam sarnie? anyway, it's their choice), others have been REALLY good and asked me specifically what he can have and have accommodated (usually i offer to bring the food - sometimes they accept, sometimes they refuse), others are oblivious so i let DS go but must stay with him and go up with him when he chooses food or ask the party host what's in stuff.

Having an allergy with the risk of anaphylactic shock is FAR more serious and i can understand your frustrations. It will limit your DD's life and going out to parties will be difficult. Unfortunately it is something you will just have to cope with. I can understand manufacturers, restaurants etc etc not willing to say that their food is DEFINITELY nut-free, they fear being sued! It's not right, but it is reality.

Not much to say except you can buy V. nice chocolate from waitrose that is dairy free, egg free, veggie and nut-free. it doesn't taste too bad either - but you pay a premium for it.

You would think that an allergy wasn't as bad as other medical conditions that you usually associate with having an impact on your life. Strangely these "hidden" problems are often far more limiting then other obvious medical conditions.

winnie81

Zziggi wrote: »

My children have a dairy intollerance (intollerance - not the serious allergy). So the problems we face are ALOT less serious then the OPs. The worst we'll get is a sick child vomiting with a poorly tummy and diahorrea. Not nice but no-way serious.

Even with this less severe dietry restriction, we have found it REALLY limits your life. Eating out is very difficult (especially when you don't eat meat as well). Now DS has started school we have got the parties to condend with. Some parents know DS has a milk intollerance and simply don't invite him because they say they can't accommodate (how difficult is a jam sarnie? anyway, it's their choice), others have been REALLY good and asked me specifically what he can have and have accommodated (usually i offer to bring the food - sometimes they accept, sometimes they refuse), others are oblivious so i let DS go but must stay with him and go up with him when he chooses food or ask the party host what's in stuff.

Having an allergy with the risk of anaphylactic shock is FAR more serious and i can understand your frustrations. It will limit your DD's life and going out to parties will be difficult. Unfortunately it is something you will just have to cope with. I can understand manufacturers, restaurants etc etc not willing to say that their food is DEFINITELY nut-free, they fear being sued! It's not right, but it is reality.

Not much to say except you can buy V. nice chocolate from waitrose that is dairy free, egg free, veggie and nut-free. it doesn't taste too bad either - but you pay a premium for it.

You would think that an allergy wasn't as bad as other medical conditions that you usually associate with having an impact on your life. Strangely these "hidden" problems are often far more limiting then other obvious medical conditions.

Two of mine have dairy allergies and I get around the partys by telling the other parent I will make up there food in a party box so its like a packed lunch. My local party shop sells the party food boxs for 40p each and I send the kids of to partys with there own packed lunch.

It was lovely having DS birthday party this year (5) as all food was 100% dairy free so he got to choose food like everyone else which was so important to us

We still struggle day to day though as one child is dairy allergic and the other is dairy and soya allergic which makes shopping and dinners out fun :rolleyes:

It would help if ALL packaging was actually labelled clearly and you didn't have to pay such a premium to buy 2free from2 foods :mad:

Silver_Lilly

WOW THank you haven't got time to read all at mo but will do.
Have been thinking of doing a nut free party and already provide the food for every body for picnics etc.(costing a fourtune!!!)

In fact yesterday when i just took food for her and my mum search out something for her self we had to cope with amild reaction on the way home and then partly because of the piriton she fell out of bed twice!!

blue_monkey_2

I was reading this email with interest. I have lots of allergies - you have to adjust your life around it to be honest.

Can I be so rude to say that you seem to be demanding everyone adapt themselves around you and your daughters allergy and this is a little unfair in my opinion.

I am allergic to loads of different fruits, even touching them on my skin beings me out in a rash and sometimes makes me wheeze (I am asthmatic) - but I cannot and will not stop my kids from eating fruit - however, I am severly allergic to prawns so I will not eat shellfish. I go to parties and people put prawns around the salad so i can't eat the salad - I don't have a hissy fit about it, I accept that other people will eat the prawns, I can't tell them not to serve it. I go for meals out and they serve prawn cocktail - I'll go without. If you are not so demanding about it all then people who run the restaurant will be more than happy to help. I went for a this swish meal out with my company and we went to Paris, (we did not know what food we were having before it was set in front of us) and it turned out I was allergic to the starter, main and pudding. I told me friend who told someone who spoke French and I was happily given other foods - even though they arebasic, it is nice people make the effort for you and this is what you should appreciate and remember.

It is difficult but your child will adapt and you have to help her do this and if you make her damanding and selfish she is going to make very few friends along the way - sorry but it is true. You do sound very bitter and angry about everything and this is not going to help her or you.

Likewise there are loads of things I can't eat. My friends have a little girl of 2 who is also severly allergic to nuts (she nearly died after eating something). At the age of 2 she knows if she has a reaction coming on and is able to tell her parents and they have an epipen with them at all times. If she goes to a party then her parents test whether she then is allergic to the food by rubbing it on her lips - if they tingle she does not eat it and is able to tell her parents this. however, she then finds she is able to eat most of the food on the tables because labels are put on foods to a reason. To prevent liability against a company and to stop you suing them if your daughter eats something and has an allergic reaction to it. Some of the stuff might not even come anywhere near a nut but they will put it on the package just in case - it is all about liability these days and a company wants to make sure they are not liable for something happeneing. And this is why everything says that they cannot guarentee it nut free. It is sad but that is how we have made it.

if you do not like that a company has not responded go elsewhere and buy from them - buy from the company you know is safe. Your letter to Nestle was very angry and I don't think I would have replied either to be honest with you.

As with my friends little girl your daughter will learn to adapt, like with me she will learn to adapt, she will learn what her trigger foods are, sure there are some that she will not be sure of but this is what the epipen is for. Please do not look on this as a life sentence for her or for you, you learn to deal with it and get on with yourlife. You can't go through life being bitter that your daughter has allergies you have to make the most of each day as it is, as the other poster said you can't expect other children to go around wiping their hands after eating something that might have nuts in and demanding that parties are nut free - if you can't go you can't go. I can't see how anyone would not invite you to parties - unless of course you made it clear that you were not coming unless it was nut free and then not only id your daughter not making any friends, neither are you, and you will find the more people you have support you through this the better.

I hope this has not sounded too harsh but this is the way it is, it is your daughter who has the allergies and she (and you) have to adapt your lives around her condition, you should not expect everyone else to adapt their lives around her. And quit being so angry about it you'll give your daughter the same attitude and I am sure that you would hate her to sit on her own at school and not have friends because of how she is with them just because she is allergic to some foods. It is frustrating but you do and will learn to adapt - it takes time but you will if you chill out about it. And use the food companies you know are safe. Make a list of all the safe foods as you go and then in a year or so's time you'll be wondering why you ever felt this way! And as for eating out - then don't. It's not the end of the world - take you food with you and stop and have a picnic somewhere.