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allergy but no referral for 4 months and we're going travelling.........

(25 Posts)
2toddlersandme Thu 28-Aug-08 19:17:59

My 2 year old son has a pretty obvious prawn allergy (latest incident he came up in an angry rash after I touched his face when I had prawns on my hands). He's had 3 previous reactions (rash round mouth, sick, swelling on face). No breathing problems or asthma. Phoned today for an outpatient appointment and there's not one anywhere in the country (let alone near us) in the next 3 months. Problem is we're going to New Zealand for 3 1/2 months in Oct (working holiday) and I'm really worried the allergy may escalate and I won't have the necessary information / tools. And I know New Zealand has great healthcare etc. - it's just being somewhere different and worrying that his reactions may escalate.

Any advise from people with experience of the system? Should I try to go privately? (There's no options near us apparently, but we will travel if necessary - any idea how much it will cost?). Or am I just panicking unecessarily and we can sort it when we get back and just be vigilent with his diet?

Help!! Thank you.

misi Thu 28-Aug-08 21:03:00

being vigulent is a must as this is an allergy, not an intolerance. not got anything to say about the system , sorry, when my mushroom allergy was diagnosed, I was in hospital and they sorted it there. nothing to follow up really, an allergy is that and rarely ever goes away, whereas intolerances can be improved. as it is an allergy, the problem is as bad as it can get.

foodallergies.about.com/od/seafoodallergies/p/shellfish.htm

anything with shellfish are to be avoided, I carry a card with me when abroad in the language of the country and maybe another common one (so in tunisia, I had the card in english, french and tunisian arabic) that said, 'I am highly allergic to mushroom, I must not have any food with mushroom in it or been prepared near mushrooms' or similar. MY allergy is not the worst it could be, I have only had anaphylactic shock once, when I found out about the allergy for the first time, had a couple of 'episodes' since but the less you ingest or contact sometime the lesser reaction. touching/external exposure is often less violent than actual ingestion. for instance, I can prepare and cook mushrooms for others with no effect, but put a bit of mushrrom juice on my lips and wow!!

if he has not been actually diagnosed yet and the system cannot get you to see a specialist before you go, I would suggest going opverboard and make sure no shellfish of any kind is had by your son, if in doubt go over the top!!

2toddlersandme Fri 29-Aug-08 07:58:44

Thanks Misi. That information is really useful. Sorry to hear about your allergy. I will make sure we all avoid anything listed.

My concern is that we don't have an epipen and I'd feel much happier being prepared for the worst. Do you think I should pay to go private to try and get more info before we go? Can GP's provide epipens without specialist assessment?

Anyone else got experience of this? Any recommendations for clinics?

Thank you.....

misi Fri 29-Aug-08 12:18:13

my docs said I didn't need one but then I'm a big boy and know what I am eating!! well I would if a certain restuarant chain I never go into anymore knew what was actually in their food, but thats another story!!

its a difficult one. unless you have a concrete diagnosis, I would not get an epipen as you need to be trained in its use and need to know when not to give as well as when to give if that makes sense.
epipens need to be prescribed by a doc anyway but as a preliminary exercise, why not contact epipen and ask their opinion?

www.epipen.com/prospect.aspx

might be worth an e mail or call to explain and see what they say?

other than that, go back to you GP and explain your worries and fears, ask if he would suggest a private doc as he can often recommend a specialist and refer you as again, often, a private GP will see you but a private consultant won't without a referral and as an NHS GP is cheaper than a private one..............

by the way, I hate mushrooms anyway so it is 'no biggie' as my 3 year old neice has started saying in not voluntarily eating them wink

savoycabbage Fri 29-Aug-08 21:02:32

I would absolutely go back to your GP and try and push for an appointment. It's ridiculous that there are no appointments in the whole country in the next three months! I think I would get a private appointment if I was in your position as you need more information before you go. I don't really know how you go about it though. I have found that the problem with food allergies is that some people seem to think that you are a bit of a loony and that it is not quite a real thing.

This is quite a useful article about flying

2toddlersandme Sun 31-Aug-08 20:06:40

Thank you both. I agree the appointment thing is ridiculous. My GP is actually great and spent half an hour on the phone trying to get an NHS appointment, but (surprise, surprise) the service is underfunded.

Thanks savoy for the flying article. As if travelling for 24 hours with 2 toddlers (he's a twin) isn't enough of a challenge!

I've decided to go private and I'm going to ring around tomorrow. My next problem is organising travel insurance. Anyone any experience of this for people with allergies?

Feeling very stressed about it - it's hard as he's only just 2 and can't really describe his symptoms. But thank you both for your support.

tatt Mon 01-Sep-08 20:25:38

first private allergy clinics that are any good are few and far between - but expect to pay maybe 200 for a consultant and more for tests. There is a go clinic in surrey seems to know what it's about, may be cheaper.

Your gp can take a blood sample and have it tested in an NHS laboratory - if he doesn't know where contact the anaphylaxis campaign for advice. May take 4 weeks. It will only say if it a prawn allergy, a referral would get you tests for other things. (my kid has nut allergy but you pick things up from your friends). Ask if he'll give you an epipen "for the plane" if that shows positive.

Best to avoid all shellfish. Carry piriton and dose immediately at any sign of a reaction.

If you weren't flying I'd say prawns/shellfish are easily avoided and not to panic. The airline you fly with may carry epipens in which case you could wait and arrange testing in New Zealand.

desperatehousewifetoo Mon 01-Sep-08 20:48:40

I would advise taking your own food on the plane. My ds has nut and egg allergy. When we flew BA, the meal thing was a nightmare. They say they have 'nut free' food (but of course, others can bring food on board- luckily that's not a problem with my ds) but couldn't provide specific meals unless they fitted into one of their meal categories.

I think in the end we ordered a child's meal and a vegan meal and I ate whatever he couldn't. Of course, there were no ingredients listed on the main meals.

I'm sure airlines would carry epipens. My GP prescribed my ds' epipens so yours might too if you cannot get tested before you go. The GP or practice nurse could train you - it's not hard!

Take piriton wherever you go. I transfer it into a smaller glass bottle from our pharmacist to carry around everyday but I would suggest having the actual bottle on the plane.

Have a fantastic trip. You'll soon get used to asking about ingredients wherever you go and fingers crossed he will grow out of itsmile

ps; wherever you go for testing, ask for skin prick tests and blood tests. My ds was in 'normal' range when he was last blood tested for egg but then had a massive reaction to the skin prick test (which was a big surprise to the consultant who had been talking about having him into hosp to chaallenge it).

Sorry for long post!

Turniphead1 Mon 01-Sep-08 21:13:13

Hi 2toddlers - just to add a recommendation for a private allergy consultant, Gideon Lack at the Portland hospital in London is basically one of the top guys. His blood tests are very expensive (can't remember how much, because our private health care paid) but I would recommend him wholeheartedly. He does skin prick testing and his nurse will give you Epipen training if it is needed.

If I were in your shoes, if I couldn't get to see a consultant before going, I would insist your GP prescribe you an epipen Jr and get the GP nurse to show you how to use. (It's not difficult). I would disagree that airlines carry them - (note the recent Ryanair flight that got diverted because someone had a reaction to mushroom juice!!). Also an adult epipen is much stronger than a child's one. Carrying the piriton (as your first option) and the epipen (only to be used if child collapses, has severe swelling, can't breathe etc) would make me feel happy about the seafood and any potentially undiscovered allergies.

Have a fab time!

2toddlersandme Mon 01-Sep-08 21:32:04

Many thanks Turniphead. I have actually just booked an appointment at the Portland today, but it's with George du Toit, not the guy you recommended. Hopefully he'll be good (and yes - it's v expensive!). I think I just need the peace of mind before going away. Presumably all the tests are quite straightforward? Anything I need to be aware of?

Don't suppose you have any experience of getting travel insurance for children with food allergies?

Sorry for all the questions. I'm feeling a bit upset and stressed about it - sure I'll feel better after the appointment.

Thanks again.

desperatehousewifetoo Mon 01-Sep-08 21:48:14

We have travel insurance and, thinking back, they were going to exclude ds' allergy but they made a mistake and included it. We just renew each year now and they honour it.

We went through a broker who did all the donkey work. Could you get it now, before he is diagnosed? or would that be unethical/illegal?

Have just texted a friend who is a pilot for BA to ask about epipens on planes(wel BA flights anyway!).

Glad you have an appointment, hope you get answers.

2toddlersandme Mon 01-Sep-08 22:02:14

Thanks v much desperatehousewifetoo. He's already had a RAS (sp?) test from our GP. But actually that was negative (although there is definitely an allergy going on) so maybe I could get away with it?? I had to actually request the referral. Will trying ringing round tomorrow.

Many thanks for asking your friend about the epipen.

What allergy does your ds have? How have you found managing it?

Thanks again.

1dilemma Mon 01-Sep-08 22:05:02

2toddlers sorry to butt in whereabouts are you? where did you try for an appt? we had an NHS appointment in weeks (and we weren't even expecting an allergy one IYSWIM)

desperatehousewifetoo Mon 01-Sep-08 22:24:47

2toddlers: ds is allergic to peanuts, hazelnuts, eggs (white and yolk), house dust, horses, cats, dogs.....

He is now 6 years (nearly 7) and we knew he had an allergy to 'something' when weaning and eventually worked out it was egg. He was not allergy tested until he was about 3 1/2 after having an immediate reaction to peanut butter (after having only a miniscule amount).

Coping with it has now become a way of life and we are used to taking his bag with medication in wherever he goes (playdates, parties, family trips).

Since he has been old enough to understand what happens if he eats anything he is allergic to, he is very good at asking if he can have something. He never eats anything given to him by someone else without checking it is safe. Nvertheless, I still remind him whenever he goes to a party or out for tea.

It's not a big problem but I did notice how much easier it was going out for lunch yesterday with only my dd (who has no allergies) and not hving to get the waiter to check with the chef about the menu! Some waiters need persuading that it is serious!

This is a good plce to get answers and support thoughsmile

No answer from my text yet but will post when I get one.

1dilemma Mon 01-Sep-08 22:28:18

dhw2 that's quite a list what a pain for ds (and you obv.)

desperatehousewifetoo Mon 01-Sep-08 22:38:48

We are used to it now but would love him to outgrow the egg allergy as that has the most affect on his everyday life.

He'd love to be able to choose a birthday cake in a shop or bakery one day smile

tatt Tue 02-Sep-08 07:52:32

try Swinton for the travel insurance. Very very places will cover you if you are waiting for test results. Once you have them some insurers can still be funny about allergies, Swinton are sensible.

Allergy free meals on airlines are, in our experience, stuff that kids won't eat. Most airlines can offer cheese and biscuits and fruit. Take food yourself.

Any hospital can do tests - the expertise is in knowing what to test for and in advising you once tested.

brimfull Tue 02-Sep-08 08:01:33

I would recommend greenbee travel insurance.
We have travelled loads with ds who's allergic to eggs and nuts with no problem.

Good luck and have a great trip.

2toddlersandme Tue 02-Sep-08 10:56:56

Many thanks everyone for all your advise. It's great to hear from people in a similar situation as people don't seem to take it very seriously.

1dilemma - thanks for butting in smile. I'm in Sheffield, but my GP checked for appointments everywhere. I'm not entirely convinced the NHS choose and book system works all that well (having some experience via work) and the fact you've got an appointment seems to confirm it! Having said that they did say to keep ringing for cancellations, but it just seemed too much of a risk.

desperatehousewifetoo - egg must be really hard. Saw on some website a link to eggfree cupcakes (but was probably American! I'll check).

And good advise re. taking food on the plane and seeing if we can get cheese/fruit etc. Have to do some shopping in Singapore for the next leg - I'll have to pack them both lunch boxes otherwise there will be arguments (it's a twins thing!!).

Thanks everyone and will let you know how we get on at the allergy clinic. Starting to feel excited again about going away instead of just horribly panicked.

desperatehousewifetoo Tue 02-Sep-08 11:45:15

ggirl - do Greenbee cover you for allergy or exclude it?

1dilemma Tue 02-Sep-08 18:16:32

I don't think we chose and booked!!

We are in London though so not much help/where are you going in NZ? Could you see an allergist there? would it be cheaper? I can't remember whether we can access their NHS for things like this sorry. Childrens hospital in Auckland is called starship might be worth a google.

(FWIW we went to Tommies they did skinprick tests same day)

brimfull Tue 02-Sep-08 19:32:59

greenbee covered ds' allergies

easiest thing to do is call them up and discuss allergies,it didn't cost much more to cover ds

desperatehousewifetoo Tue 02-Sep-08 19:41:50

Thanks ggirl. We are still covered due to their error but they may change their minds again!

2toddlers - my pilot friend says BA do carry epipens but not all airlines do. hth

2toddlersandme Wed 03-Sep-08 08:35:20

Thanks all

Good point 1dilemma re. trying to get tested in NZ. Fortunately my lovely parents have offered to pay for our appointment so am less panicked about being bankrupt before we even arrive!

Will try greenbee and swinton

And thanks for the info on epipens on planes. Will check what singapore's policy is.

I've really appreciated you all taking the time to share info. Mumsnet is great!

Think I'll go and buy some suntan cream and try and get excited again about going away smile

desperatehousewifetoo Wed 03-Sep-08 09:08:53

Let us know how you get on.

Have a fab trip if you don't get the chance to update us before you gosmile

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