One-year-old with food reactions, pain and poor sleep, any similar experiences?

[febel]

I'm asking on behalf of my sister..who is at her wits end and I'm really worried about her and the baby. He isn't their first child.

Her baby son is one year old now and always been a bit "screamy" and unsettled. The first time he slept though was the other night. Otherwise they are up a lot to him..some nights more than others , as he cries and screams

He has had a problem gaining weight as is allergic to dairy and egg. Had bad reflux when younger also and also gets eczema . Addition reacted massively to potato, rice and gluten..not immediately but a few hours later, he will be screaming, seemingly in pain ,arching back and eventually projectile vomiting.

He will eat food with texture with no problem so it's not a mental sensory issue, but if he has a lot of texture over a few meals he starts to react..to itch his neck , and be very unsettled. It will get to a point when he will then be awake , high pitched screaming in pain until he's sick.

She is at her wits end, and I'm worried about her MH. She was diagnosed with ONS a few months ago and it's mainly due to the baby and how he is and the fact nobody seems to be listening to her or trying to help in the health profession. The specialist consultant the baby was referred to and who has seen them twice, has basically said he doesn't know what it is, nor what to do. It isn't allergic reactions as he..the baby...doesn't react until hours later. He's had a swallow test ..which is liquid which he's ok with , and physically everything looks fine.

It's almost as if his oesophagus can't cope with too much texture.

Has anyone else had this experience or can recommend anyone to see? It is really impacting on them as a family and he isn't their only child. Nobody seems to want to help them😧

Not exactly the same but having had a child with swallowing issues and a(n other) child with allergies I would say: for sure keep pushing, back to the gp, ask for second opinions etc.

Food intolerances are commonly not seen for several hours, not sure what’s going on with that specialist - maybe a miscommunication?

The ‘swallow test’ (videfloroscopy) can be performed with food of varying textures, indeed it’s common to do this with children who are above wearing age - was this suggested for your nephew?

How have things been left/what’s next @febel?

No..this wasn't suggested re the swallow test. He had one at 110 months old , the month before he had dropped to the 20th centile or lower (started on 98th) and we'd been on and out of A&E trying to get help. I say we as I went too as they have another child so it's difficult re child care.
The one he had on January/Feb time was liquid only. If he is on liquid food he's not too bad. .as in so liquid it's like a drink. As I say will eat textured so not an issue..but then after a few days seems to react and is poorly.
Thank you..I will tell them

It can’t hurt to ask for a follow up with solids, but it’s unlikely to show anything tbh. If it’s a few days before a reaction then it seems unlikely it’s an oesophagus issue. The specialist SALT who administers the test can also assess in other ways - such as watching the child eat, they might be reluctant to do another scan so soon due to radiation.

It really does sound like an intolerance issue, possibly multiple intolerances or possibly the previous reflux causes some damage (burns) that hasn’t fully healed yet. Gastroenterology could be the next step for ‘unexplained’ vomiting. Do keep supporting your sister and don’t give up.

I really feel for your sister. Thank you for being there to support her. I had a similarly difficult baby with dairy and egg allergy.

have they retested the allergy? Quite often they outgrow those (think dd outgrew the milk one just after 1 and the egg one when she was 5). Up till then she was super screamy and difficult till we figured all of them out!

I also think they can have sensitivities that aren’t real allergies when they are like this. Dd is now 25 and off fish as it was making her mouth and throat feel funny!

Thank you...he reacts within a few hours usually. When he's been poorly , screaming, arching his back and eventually vomiting, he generally doesn't eat much the next day. Or drink much. As if he's sore inside..could be from the screaming/vomiting. He's struggled with his weight for a long time ..gaining it.

SALT was suggested but then the consultant changed his mind and didn't refer him as he didn't actually have a problem swallowing textures..he will, and wants to eat them . He seems to react to food like rice, potato,.pasta soon afterwards (blood tests show high allergy to egg and milk..he's been dairy free almost since birth ). The consultant perhaps needs to refer him after all. The normal dietician actually said it was beyond her 😮

Has he been tested for Coeliac Disease? My child has it and had very similar symptoms to what you describe. If food has made him poorly then he could very well struggle with textures. If you decide to have him tested, whatever you do don’t cut out gluten until you’ve had the test or it won’t work.

No, coeliac disease hasn't been mentioned at all..thank you will mention it to her to investigate.. Altho he doesn't get foul stools really..tbh he has suffered from constipation from birth a Nd has to have many laxido once a day..which can't be normal I think .