Is allergy care a postcode lottery? Warning: I am pissed off!

[Likeaninjanow]

I'm probably being completely irrational & childish, but it just seems as though everyone is getting better care than DS2. . He has severe allergies which are difficult to manage and stressful for all the family, yet we only see his consultant once a year.

He's 4 in a few weeks and the entire extent of his care is:-

Prescribed epipen
2x consultant appointments
2 RASTs
1 food challenge

That's it! And I can assure you it's not from lack of phone calls.

Where am I going wrong? Are you all getting more support or am I imagining it?

Sadly it is indeed a postcode lottery. DS sees consultant twice a year plus dietician but the consultant is in fact a chest specialist not an allergy specialist as we don't have any allergy specialists around here. Not even sure there are any in Wales at all. DS has had 2 lots of skin pricked tests, 1 Rast and 1 wheat challenge which went so badly he was then prescribed epi-pens.

Probably (re postcode).

DS has never seen an allergy specialist, just a cons Pead (who's lovely btw) who suggested RASTS (all negative) and now we have epi-pens based on history and blood tests (raised eosinophil count) and have been referred back to GP for yearly review unless I need to see consultant again. (ie he actually has anaphylatic shock).

I wish we could have had the airbourne allergen skin tests .

Then again DS doesn't have food allergies and not as severe as many here, his reaction was severe but seems at less risk of a repeat.

We did see the consultant twice this year, she offered it to me and I said yes. (because epi-pens were prescribed at the first) No idea how often we would get if actual allergy consult though.

What more would you expect? I'm not asking in a nasty way, the care you've described seems pretty standard (although if there are a lot of allergies then I would have expected you to have seen a dietician). We now see the consultant every 18 months (was once a year for the first two years), they redo skin pricks at those and that's it for another 18 months - I'm not sure how much more we would need, although I appreciate that we're only dealing with nut allergy. The GP represcribes epi-pens when we need them and gets an update letter whenever we see the consultant but given not much seems to change with DS (although he has had positive skin prick for hazelnuts now not just peanuts) I don't think we'd need any more than we get.

We see a paed allergy specialist and I just assumed what we got in terms of tests/appointment timings was standard...

Oops - should clarify, I know most people struggle to have access to a pead allergy specialist (that bit does seem to be dependent on where you live), what I'd assumed would be standard across the country and all docs (irrespective of if they are paeds/allergists/both) was the frequency of appointments etc.

I probably should have mentioned that I had to really push for the consultant appointments, the food challenge and the 2xRASTs. I took multiple phone calls and GP appointments to chase them up and stress that I wanted them.

The 1st consultant I saw said that, as he was gaining weight and healthy, we were managing fine so didn't need anything more. He had been anaplylactic twice before they agreed to offer the epipens, and again I had to really push for those.

I guess I would expect a RAST or skin prick test once every year, rather than twice in 4 years. I'd also like to have had more than 1 food challenge. His diet is so limited by his allergies, and he hasn't even been exposed to some of the foods they say he's allergic to, and others he was exposed to along with other known allergens at the same time. For example, I gave him bread which contained egg and soya. He's definitely allergic to egg, but he's never had soya other than that one bite of toast. Maybe it was the egg that caused the big reaction. We were told to avoid all peas & pulses, but he used to eat peas with no issue.

If he only had one allergy, I really wouldn't mind. The fact he has so many, means I'm keen to keep a track on where everything is and do challenges to see if he is outgrowing any. Even one being outgrown would be a huge improvement in our situation.

We are getting better care than that but we couldn't get into to see anyone on the NHS (GP refused to take us seriously) and so we now see a great NHS bloke privately. He's one of the leading experts in this field. We get skin prick tests (and depending on the results, challenges) once a year. He's also always on the end of the phone if we need advice.

I know others on here see him through the NHS and I have the impression that we all get the same service. (Certainly at food challenge time, the process is exactly the same.)

The problem is we're in Scotland, and I'm not aware of any studies here. We are lucky that it's an actual allergy consultant we see now, previously it was a general paediatric consultant.

I think I'll phone again today and push for another round of RASTs and a food challenge for soya. This will be my 4th phone call to request a soya challenge. The last time I rang they said the bit of paper with his details had been lost. WTF?

It is a lottery for sure. I think there were NICE guidelines introduced recently as a result, to try to ensure that the care was there for all. Obviously it takes time to feed through though.

Normally I would think that there is no need to see consultant that regularly - they don't tend to grow out of these things at lightening speed and there is no widespread treatment at present unfortunately. E.g. we were discharged from the allergy consultant clinic at DD age 2, with a 'come back at age 5 for more tests' comment - which I was happy with. As it happens, I've pushed for more tests now (at age 4) as the contact allergies have lessened, and we're having a food challenge next week (gulp, bricking myself big time).

But... in your case, as the number of potential allergies is so limiting to his diet (and a right pita to live with for you), and as you're not even sure that some of them are allergies anyway, then yes, absolutely, I would be p*ssed off too.

Not sure RAST are the most reliable? My consultant said skin prick was more so? But its all a bit of a stab (no pun intended) in the dark really. Good luck, keep pushing. Just imagine if this was 20 years ago when allergies didn't even 'exist'.

I've posted on your other thread about your food challenge lukewarmmama.

Interesting that your consultant said skin prick tests were more reliable. They don't offer those here, basically they only do RASTs and food challenges.

Still awaiting a call back about the soya challenge...ho hum...

Aha - didn't realise we'd cross posted! I don't tend to actually look at the names of posters I just like the sound of my own voice .

What he said was something along the lines of RAST tests were good for extreme reactions - ie v big number was v likely to be allergic. If there was a middling result then it didn't really tell you anything conclusively (obviously). But then skin pricks don't either (eg DD1 never reacted to her cheese skin prick, even though that's been her biggest actual allergic reaction to date). So she'd already had skin pricks, and he discounted using RASTs as well as a way of telling if she'd grown out of the allergies, as they might not help at all. It's all just a way of trying to tell probabilities I suppose, so as long as you're having one or the other then I don't think it matters hugely. And then come the food challenges....

Good luck. Soya would be a massive one to be able to have, hope you get an answer soon.

I know in our pct it is common policy that if a child is perceived as thriving - not extremely underweight for height - there is no dietician's help at all. even the head honcho of paediatric gastroenterology can't bypass the system!
It will be a year and a half between appointments for DS1 and 2 - but DS3 was classed as failure to thrive and he gets seen more often. Then GOSH got involved, now everyone at the local hospital want to get involved.
i sometimes think that it either has to get soooo bad that there is a failure to thrive, or as a parent you just can't cope with it all and there's a failure to thrive/repeated incidents until the 'system' kicks into gear and they realise that they have a responsibility to help.

It is really tough not having more contact but I think what you are getting sounds normal I'm afraid. We were told dd would be seen after her first anaphylactic reaction, then telephone calls for further reactions, and then next seen aged 3 (first reaction was at 8mo.) seen by dietician at first appointment to explain about what foods to avoid. I entered dd in for a study at st Thomas' so we were then seen more often for skin prick and food challenges to fit in with the study design.

Even when we suspected more allergies after further anaphylactic reactions, dd losing weight and then regressing in her milestones, the allergy consultant didn't feel it was necessary to see dd again till she was 3. It was only because our GP took sympathy on dd who was looking really unwell by this point, and other specialists we had been referred to were also not being much help, that we eventually got referred to a different allergy specialist. And we are currently being seen every 3-4 months with regular telephone dietician contact because dd is very underweight. If she hadn't become so unwell then I doubt we would be seen anymore either. It's a real shame because me and DH felt the extent of her weight gain could have been prevented if we'd been seen by allergy specialists earlier, but untill she had become very underweight nobody paid much attention. I know we would definitely have gone down the private route if the second allergy specialists hadn't taken us seriously.

I'm afraid I have no idea about studies in scotland too. Good luck. I hope you're feeling a little bit better.

ChocaMum - that describes our overall experience of the NHS exactly. Fantastic at swinging into gear and saving the day when things get dire. Less great at preventing the dire emergencies happening in the first place (or in a couple of instances - causing them in the first place).

Our experience with the NHS has been up and down. Took ages to be taken seriously because DS was born at the 99.9th centile, and so even though his weight gain decreased a lot, he was still too big for his own good, in a funny way. So we had to go private, when he was 4 months. It was when he had a violent reaction to wheat at 8 months (so making his allergies multiple) that our wonderful HV put pressure on our GP to get a referral. Our GP already knew he was allergic to egg, milk and wheat but just said 'what a nightmare', and let us get on with it. Since then, however, he has been very sympathetic and got us referred to a clinic with a shorter waiting list. So DS had more skin prick tests at 12 months (plus RAST tests) and he'll be seen again at 18 months this December. After that they say he will be seen once a year (but that was before he had reactions to sesame and lentils as well, so not sure what they will suggest now). As for dietician advice, we were promised an appointment with a specialist dietician but that never happened -- instead we have seen a community dietician twice, and although she's lovely she really didn't have anything useful to say.

So I was stamping my foot too, but after reading this thread have realised that actually we have been quite lucky.

Choca, have you had your latest appointment yet? What is the news?

Same here garliclover DS was nearly 10 lb born so above 95th centile and stupid HV still didn't think there was anything wrong when he dropped below 50th because he 'looked healthy enough'. If he'd been 6lb at birth I think we might've been referred sooner. I have also found Nhs good at dealing with emergency situations but not so good with everything else sadly.

Oh gosh I have been told millions of times 'well she looks healthy enough' by doctors and RL people, I've just got fed up of it. 'maybe it's just normal for her to lose weight' would be the next comment which made me feel like strangling the person after hearing it time and time again! It's like people don't understand that an allergic reaction is a reaction to something, not happening 24 7! and because both DH and I are petite, DD dropping from around 50th centile to below 0.4th centile didn't seem to make anyone think something could be wrong.

It's such a shame that everyone else has had similar experiences. All the arguing and fighting with doctors is so exhausting, that when you were finally taken seriously I just felt like crying and falling at their feet!

garlic yes we were back at Paddington on Thursday for another 4 hours, it is never a quick vist! But Helen Cox was on annual leave so we saw her colleague who said she'd contact Helen before giving us a proper plan. DD had more blood tests to make sure she's not deficient in anything because her weight isn't improving, and they're suspecting maybe seed/oat allergy because that is obviously her main dairy alternative intake now. Really hoping she's not, not quite sure where to go with dairy, soya, seed and oat allergy for 'milk'.
How has the soya reintroduction gone? Fingers crossed for your DS too.

Oh Choca, an oat or seed allergy, what an enormous bore! I really hope that isn't the case -- fingers and all other limbs crossed for your DD. We haven't reintroduced soya or anything else I'm worried about (peas, chickpeas etc) because he's had croup followed by an ear infection. Now on antibios, so any adverse reaction could be confused with side-effects. And of course, now I'm super paranoid about the antibios making the allergies worse, though I don't say that to the doc because it probably makes me sound utterly ridiculous and pfb!

Thanks BB, I haven't used kara much but that's a good idea. I'm sure dd would love it. Yes it's funny the number of people who think coconut is a nut, does it look anything like a nut?! And then there's nutmeg too!

Garlic - oh no, croup, how miserable. DD had that around this time last year and the nights were just miserable, the croup cough is just so scary and she was really wheezy with it too. I hope he gets better really soon. Is he needing his brown inhaler again with the croup or is he managing with montelukast?
And I think it's just sensible to only reintroduce foods when your ds is back to his normal self, and hopefully that's very soon. The bodies response to allergens is much worse when you're unwell, but I'm not sure if antibiotics have any effect. I'm hoping he manages ok with soya when you do try.

Sadly it sounds normal, although do look up the NICE guidelines to see what care your son should be getting. The explosion in allergies over the past 30 years has not been matched by changes in medical training or specialisation so there are very few specialists in allergies - mostly they are chest physicians or dermatologists who just got interested in asthma or eczema and developed that interest further.

I would have said your care is pretty standard too, but we're also in Scotoand so likely to be under the care of the same person!

Thanks all for your replies . Sounds like we're pretty getting the normal standard of care then. Although I was previously told there should be a RAST done every year. The last food challenge was 2 years ago, same as the last RAST. Sigh...still waiting on a call about the soya challenge.

Oh well, at least I know I'm not failing DS2 , if he's getting the same as everyone else.

Of course those should have been [hsmile]s.