CMPA and potential all grain intolerance (oats, wheat, corn!) ?!

[Emma154]

Hi everyone!

Looking for help as I am currently desperate.

DS is 7.5months old. Since 3 weeks old has been constipated (can only pass clay balls, is constantly on lactulose), silent reflux symptoms started at 3months (hiccuping everyday, wet burps, rattly breathing, funny taste in mouth, gulping, sneezing/coughing but no cold, only can sleep 30mins at a time in the day, but luckily
showing no pain). Due to constipation, light day sleep and reflux we suspected CMPA so moved to nutramigen...

Reflux became non-silent on nutramigen and sick throughout day and all other symptoms remained. Then had final jabs and a spotty rash all over body appeared...

Started alfamino next (amino acid milk) and this is when eczema patches started on a completely non dairy milk! Constipation, catnapping and reflux Symptoms all the same but rattly breathing congestion gone... also started nexium (PPI) but not real difference that we could tell. Then went to Neocate - all symptoms same and eczema just got worse and worse - covers entire torso and patches all over arms and legs!!

Started weaning.. ate carrot puree very happily one day.. and then since then continuously refuses 90% of food. Gags and coughs at all spoon fed food apart from prune puree. Had a very big rash reaction to oats, touching (not even eating!) cooked spaghetti at a baby class, and smaller rashes to quinoa, butterbeans and banana but these were accompanied by itchy eyes, sneezing, coughing and tummy tensing... but not vomit or swollen mouth etc.

More confusing - overall he is happy (though noticing some personality changes, like a whiney closed mouth cry) and sleeps ok at night and weirdly (but thankfully at the moment) doesnt scratch eczema..

Is this familiar to anyone else?!? Could it a dairy, wheat and grain intolerance?! (oats corn - HUGE corn syrup % in prescription milks), or am I just being over the top?!

His eczema literally breaks my heart it is everywhere and I can’t take not knowing what is going on anymore. I am mentally struggling at figuring this out and peds & derms are not helping - keep saying he is fine overall and will grow out of it... with no weaning advice.

Anyone with a similar experience I would be very grateful to hear from you!!!

Oh and! Had a blood allergy test - all came back negative for everything.

I want to push for a skin prick test instead but would like to hear your experiences on these - I keep hearing that all these tests can be useless but I am desperate to work this all out.

Dermatologist says a mix of mainly subhorreic eczema both on the scalp and body (I cant find anywhere people saying subhorreic eczema being widespread on body) and atopic in creases. They just keep saying steroid creams, to be used for 4-6weeks(!!!) and as soon as we stop it comes back the next day.

Start a really detailed food diary now and keep it going as long as you can. Non IgE reactions will not show up on a skin prick test but food testing (diarying) is the gold standard. Consider looking into baby led weaning as baby will know if something makes their mouth itch etc and will avoid foods that have a reaction that you can't see. First time on new foods doesn't usually cause a reaction because the body doesn't recognise it to react to.

Thanks so much for your reply - sorry to sound stupid but how do you know if their mouth is itching? He seems to refuse alot of food after the first spoonful, or gag and cough, is that a sign? I feel like I can’t tell what is him being a baby and going through weaning stages and what is a reaction without their being like a contact rash. Should a baby sneeze every day like mine does?! Its all so confusing

You can't really tell ... I did BLW for my allergy child and as he got older tried to feed him a greater variety. Turned out he was allergic to most of the foods he refused. Now he's old enough to tell me his mouth itches when he has a mild reaction. When he has a slightly stronger reaction, his mouth itches before he projectile vomits.

Hi @Emma154, I’ve just seen your posts and wondered how you’re getting on? Having some similar issues with my 8 month old daughter and really struggling to figure it all out! Am now vegan, soy, gluten and oat free (not totally sure about soy but not risking it) and have cut out loads of other random things that I think she struggles with in my milk. As of now I’m thinking maybe rice is also a problem! I’ve effectively swapped oats (oat milk, oat cakes etc) for rice alternatives, and after a rice based dinner tonight she is horribly restless and uncomfortable, the worst in a few weeks. Her issues mainly present themselves at night when she’s really windy and unable to sleep because she’s writhing around so much. Currently waking every hour or so unless I have her on me and I keep her constantly moving so she can get some rest. She had a similar thing with gagging on purées (not prunes!) and vomiting badly after oats. Only since last week have I actually cut out oats from my diet, after finally trusting myself that they were causing problems for her (then the sleep got instantly better, slept 3.5 hours which is the longest ever between wakes). Have just emailed the HV to beg for a referral to an allergist, the dietician hasn’t managed to help so far. We also saw a paediatric consultant as she had silent reflux quite badly until 4 months that meant she was slow to gain weight. She also had horrific nappy rash from 2-12 weeks of age that only cleared with steroid cream. I’ve used it plenty of times for myself (eczema), but like you I would certainly not want to use this on her for long periods or over large areas, as it’s so strong and not the right treatment for chronic eczema! I’m not really offering any help for you I’m afraid but just wanted to say hello and I feel you. Happy to swap emails and stay in touch if it would be useful x

Hello
Just wondering how you all are getting on. I have a 7mo who suffers from reflux and silent reflux, cramping, green pasty poo, mucusy, noisy breathing, coughing and sneezing at night. I bf for 5 months and was dairy free, still same symptoms. weaning, for first couple of weeks it seemed to get better but has now got worse. I am now just giving the same thing for three days, and at the min he is just having gluten free porridge 3 times a day and is still the same!! Which makes me think there is no allergy.
He had a blood test on Friday so waiting for results of that!
Anyone else had similar experience? Xx

My child now 6 has nearly always refused to eat food he is allergic to seems to be able to sense he doesn’t like it and spit it out even when very young. Maybe that’s why your child is also reusing food as I found when I had encouraged my son to eat something he was reluctant to he was then regularly vomiting and covered in excema rash. This has led to a very limited diet he is allergic wheat gluten tree nuts and intolerant to milk but hospital dietitian told us to use child friendly vitamins to ensure adequate nutrition.He also used to cough every time he was eating its so hard I hope you get some answers soon .