fobbed off by paed re allergies - help!

[parentsvsPIL]

Ds is 5 mo and has had bloody diarrhoea since he was 4 weeks. It is probably allergic proctocolitis (FPIES in research literature) and it has got worse over the last few weeks.

GP agreed blood in poo isn't good, checked for rotavirus, Giardia etc, and referred him to the pard allergy clinic at the hospital.

Paed has just written back to say "thanks for referring this boy & mother who has concerns about weaning. Sometimes if mother is allergic we might suggest delaying introduction of nuts. Blood in stool is called cow's milk colitis. We have not made an appointment for [DS] as we have no concerns about his growth"

Grrrr! That's the wonderful standard of intelligent care available in a certain hospital in NZ.

What do I do now? No allergists within 500km and seemingly no guarantee that they will be any use anyway.

I am currently excluding: dairy, soy, egg, wheat, corn, nightshades, peanuts. Am myself allergic to shellfish, stone fruit, apples/pears, some nuts, avocadoes. Living on rice/ oats/ barley, meat, fish, fruit vegies, almond milk, coconut — very healthy diet but I am very hungry and importantly after 4 weeks of excluding most, 2.5 weeks off dairy, 2 wks off soy, the blood is getting worse, not better.

sorry not FPIES, it's FPIAP.

I'd go back and insist on referral to a different paed. Maybe try the cows milk allergy Facebook groups to see if anyone can recommend a consultant near you?

Have you done a TED diet? I think that's what is generally recommended - but really they should also do physical tests I'd have thought - I know someone who had intersuception (sp?) and you'd want to rule out intestinal issues like that I'd have thought.

Anyway, is push for an alternative referral.

My experience of the NZ system was the opposite in relation to allergies - very speedy referral to a paed (dairy & egg allergies suddenly presenting in 6 month old on weaning).

Do you mind saying what hospital you were referred to? I know the referral we got to starship was rejected (no anaphylaxis), but we saw the general paed at North Shore instead.

DD was referred by the GP for skin prick tests (and later bloods) first, and the results of those were included in the referral letter. Would your GP be able to do that? It was labtests I think that we were referred to.

dinobum - am in NZ so no choice, there is only one hospital I can be referred to, and it doesn't actually have any immunologists/allergists.

Thankfully this is very vanishingly unlikely to be intussusception, which is an acute thing (presents a bit likeappendicitis and the blood there is much worse than this).

vvviola - other end of the country. So no Starship or North Shore or Middlemore for us... our local is the one that gets in the news for being broke and having an operation-haltingly leaky roof and asbestos in the operating theatres...

Skin prick tests are irrelevant for non-IgE-mediated conditions like allergic proctocolitis - they rely on IgE being present (as you'd see in sudden allergic reactions like hives or anaphylaxis). So allergic proctocolitis, is in normal practice, a clinical diagnosis (it has a histological definition but it is so commonly seen that noone bothers looking for eosinophilic infiltration in the sigmoid colon).

I will go back to the GP and ask for full blood count & inflammatory markers to rule out anything like infantile IBD, then I guess not much we can do...

Damn. Hoped I was going to be able to point towards some helpful people/options.

Is your Plunkett nurse any use? (One of mine was brilliant, going to bat with the GP for me. The other, not so much.)

Thanks though. Plunket nurse not much use but i'll ask next week...

Plunket no use but went back to GP (poor DS now has eczema as well as >50% of poo area being blood) and they re-sent the referral as urgent. Thankfully DS is otherwise well & happy.

Really hope you get it sorted

I'm sorry to hear about these incompetent dr's! As a nutritionist, what would normally be recommended would be to take a food diary, and record what your child is eating. You can also track the time-lag between meals and symptoms. This may help the dietitian decide what exactly is going on. At least then you can be sure of what is definitely exacerbating symptoms. A good app that is built for just this is www.alliapp.com and is recommended by the NHS in the UK. Hope it helps!