Hello from Wales UK

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Have been "lurking" here for many a month and finally plucked up the courage to post! My son Thomas is nearly five and was diagnosed with peanut allergy last year. We had been on holidays to France (myself,husband,Tom and his sisters (non PA as far as we know) aged at the time 6 weeks and 2 and 1/2. Tom was sitting in the back of the car between his sisters when we stopped at a garage to by some snacks. I bought what I thought were cheesy crisps ( my French isn't very good!)Opened the packet and offered them around,noticing the smell of peanut-butter immediately.Neither my husband or I ate them but Tom had about five before he decided he didn't like them. He started to complain of a bad tummy but without looking at him we ignored it and thought in was just a bored four year old who'd had enough of being in the car. When I did glance back at him I was horrified! His face had completely changed - swollen and red. Tom describes this incident as "when I had blind eyes" as he was unable to see as his eyes were swollen shut.No-one in my family has any allergies and I had absolutely no experience of peanut allergy or even heard of anaphylactic shock. To cut a long story short, we managed to find a doctor who gave him some steriods and an antihistamine.He slowly improved over the next couple of days and we were able to continue our holiday. On return to the UK I made an appontment for Tom to see the GP and he had blood tests done immediately.They found him to be allergic to peanut(4++?)slightly allergic to egg white and highly allergic to house dust mite! Life from then on has been a steep learning curve! It took me weeks to fully realise the true impact that have a peanut allergic child has on our lives.I have found explaining to my parents and other family members the seriousness of Tom's allergy very difficult.In Wales children start school in the september after their third birthday, so Tom had already been in school for nearly a year.His school is a small local primary school (180 children ages 3-11) There had already been a child with peanut allergy at the school but he had left the year that Tom started. The school has been very helpfull and most of the reactions I have had from other parents has been positive. I find that one of the greatest difficulties I have is explaining how vigilant you have to be in monitoring what a peanut-allergic person eats.Tom has been to a few parties where as we have arrived (complete with our own party food)the mum has said" don't worry,Tom can eat all the food, I've checked". I feel very awkward and ungratful then when I ask them if I could see packets etc. I know the answer is to just eat the food we have already prepared at home but these Mums are really trying to help! School has sent a letter out to all parents asking for them to refrain from sending peanuts and peanut products into school and I am happy with this. Tom has had a few more reactions - one from picking up a peanut on the floor at my parents house(that showed 'em how serious it is)and another last year (on his sister's birthday)where to this day I don't know what he ate.He ended up in hospital for a few nights, cover in hives which lasted for about 4 days. Tom's class are going on a school trip next month and parents from the reception class (ages 4-5 years) are not allowed to go with them. I feel very strange as this would be the first time Tom has been away from me or his father or my parents.Whilst the school are aware of his allergy (he has two epi-pens kept at school in the office as well as the ones I have at home)letting him go into an unknown enviroment without me is very frightening.I want to let him go - he will have far more out of the trip if I'm not there as he tends to be very clingy and plays up to me if I'm around! but feel apprehensive about it. Is it just my baby going on a trip for the first time or is it his allergy? Gosh I have waffled on! thank you for the information I have had from this site - your experiences have been of great interest and use to me. The letter to Tom school was taken from this site (with a bit of editing to make it more suitable for use in the UK!) Very best wishes to you all Sarah

On May 15, 2003

Hi Sarah.

You asked, [b]Is it just my baby going on a trip for the first time or is it his allergy?[/b]

It's probably a bit of both. I'm facing a very similar situation right now, too. My five year old is allergic to insect bites/stings and his entire school is going on a trip next month to an environmental park. I would be a little bit leary of letting him go (also his first trip without me) but worrying about the insects has me up nights.

Keep us posted on what happens with your son.

On May 15, 2003

I had a chat with Tom's teacher today and she said that if I wanted to I would be able to go on the trip. She also said that there is no cafe or shop at the park (a Thomas the Tank Engine theme place)so all the children will bring their own food.Not quite sure if that is good or bad? i think I might request that there be some guidelines on what food to take. Tom has packed lunch at school whilst the majority of children eat school dinners.I'm a bit concerned about the potential for sharing snacks, especially on the bus Anyhow, I told his teacher that I would think long and hard about it all and let her know. I'm very aware of not wanting to make a big fuss over things regarding Tom's PA but then get so very frustrated when i don't get the message across to people as to how potentially serious it can be. AnnaMarie thanks for replying- when we go camping I'm absolutely hysterical when an stinging insect goes anywhere near Tom - even though he isn't allergic to them (as far as we know).We spent our honeymoon in Toronto and surrounding area (Algonquin(sp?))and the plan is to return when the children are a bit older and able to apprciate it. Must stop having babies first!

On May 15, 2003

Hello Toms mum,

welcome to this web site. I have a 7 yr old son with peanut allergy( also egg, beans, kiwi , dog , cat , dustmite, tree pollen). I have let my son go on school trips. The first one is the worst! I could not go on first trip with my son as had younger child at home and had no one to look after her. I am in the uk, feel free to e-mail me anytime with any concerns you may have over the school situation. Have you been reffered to see a specialist allergy consultant? if yes , who are you seeing? William is at St Marys hospital paddington , under Dr gideon Lack.

We have been to france about 3 times and have been lucky, the biggest problem we had was on the ferry back with the unhelpful british staff in the restaurants!!!! Would love to go on hols to Canada or America, but slightly nervous about flying!!! This web site has been fantasitc for support and information , look forward to your posts , sarah .

On May 15, 2003

Quote:

Originally posted by williamsmummy: [b]William is at St Marys hospital paddington , under Dr gideon Lack.

Would love to go on hols to Canada or America, but slightly nervous about flying!!!

[/b]

You mean Paddington Bear is named after a place? Guess I should have known that!!

And Sarah, if you ever come to Canada you [b]have[/b] to let us know. There will be banners at the airport. Speaking of which, I'm headed there tomorrow to pick up a visitor from Ireland [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Tom's Mom, I'm glad you now have the choice to go on the trip. Even if you choose not to go, it's still nice to be the one who gets to make the choice. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

So far how has his school been about preventing food from being shared?

On May 16, 2003

Sarah, did William get referred automatically to an allergy specialist or was it something you requested? Tom sees a paediatrician every few months as since he was 5 months old he has been on daily antibiotics following a urinary tact infection. These will stop when he is five and then I guess so will his appointments. The allergy issue has sort of been "tagged on" to these appointments. We had one meeting with a dietitian who basically said that in a few months I would know more than her about PA (she is right but at the time I felt a bit more help would have helped!)That is when I started looking on the internet and found this wonderful place! Until 4 years ago we lived in Surrey and I wonder if being nearer the London hospitals is an advantage? (I'm born and breed in Wales but spent my late teens and twenties living in London and still miss it a lot!) I have all sort of questions that I feel my GP and the local hospital can't answer. The feeling I am left with is that their attitude is " go away and get on with it - let Tom live his life, if there is a reaction we'll treat it" I guess the mother instinct in me wants to make that life as safe and happy as possible and for that I need more help in dealing with his allergy. AnnaMarie - the "no food sharing" rule in the school seems to work ok in theory! The children in Tom's class room (ages 3-5)are all pretty aware that Tom can't eat somethings, can't have the cakes they bring in for birthdays etc and as Tom gets older and moves through the school hopefully these children will continue to look out for him. My worry has been that sometimes they feel too confident and a few times someone has told him that something is ok to eat and he has believed them without checking with an adult.His sister is starting school in September and I'll be glad that she is there to also keep an eye (oh responsiblities at 3 years old!)

On May 16, 2003

Toms mum, IMO you need to get your GP to refer you to a NHS allergy consultant. The NHS is on your side ( and the law) anyone showing the signs of severe allergy esp peanut has this right to see a consultant. ( GP's sometimes balk at the cost of refering, or simply lack knowledge about allergies, a good GP will help you) Tom needs to see an allergist so that he can be monitered as he grows older, to check that he is not developing other allergies to other 'linked ' foods, also for decent advice re all other allergic diseases , eg asthma , as asthma management is very, very important to a person with the potential to have a anaphylatic episode. There is also the possiblity that your son may grow out of peanut allergy. Check out some of the research threads. You can not test for this at home , eg give him a home challenge, as this needs to be done in a safe environment . This also applies to the egg allergy, that too needs to be monitered. Another factor to be aware of, my son has been offered a place on the first trial of the peanut allergy 'cure' in the UK( again check the research threads). If this goes ok, it may be offered in the future , if you have been refered you have more chance of getting this on the NHS. When william was refered to DR G Lack , when he was 2yrs , the waiting list for first appointment was 8 months - two years, he has got this down to 8 months -year. However more and more people are being refered. Your nearest Allergy consultant, I think , is in southampton hospital. If you have any trouble getting referred by your GP, contact AllergyUK, try asking for Maureen Jenkins, she can give you details of the nearest allergy clinic to you , and help to get you refered. I do know that people with severe allergy in scotland have a great deal of trouble getting to see a consultant as they are all based in london. I hope that this is not the case for you in Wales. !! Its worth joining AllergyUK , as they do a brill job. tel 02083038525 The Anaphylaxis campaign are also a wonderful support and are doing all they can to help parents get correct advice and encouragement to get children refered as soon as possible. Try their web site [url="http://www.anaphylaxis.org.uk"]www.anaphylaxis.org.uk[/url] tel 01252 542029 Feel free to e-mail me for any other contacts/ advice that you may need. I am on the allergyUK support contact list, and a local co-ordinator of the anaphylaxis campaign. good luck,

sarah

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