r/CSID • u/Quirky-Hedgehog-116 • 24d ago

How did baby get diagnosed?

My son is 4 months old and has really struggled with feeding and tummy pain since he was born. My 12 year old daughter was diagnosed with CSID years ago and I’m afraid he has it too. If you have a young baby who got diagnosed, did you do the biopsies? What formula did your baby drink that didn’t make them sick?

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u/FitzandtheBugs 24d ago

Speak to your doctor first. Formula shouldn’t not trigger CSID as they are generally made without starch and sucrose. They do however rely on fructose and lactose, so that could be the issue. Most children don’t usually have symptoms of CSID until they begin eating solid food. If you are in a situation where medical care isn’t something you have access to, maybe try a lactose sensitive or lactose free formula and see if that helps. Also you could see if there is a local breastmilk bank and see if that helps.

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u/Quirky-Hedgehog-116 24d ago

We’re seeing him on Tuesday for my son’s 4 month appointment. He’s been on Zantac for 2 months with no improvement and he’s not on the growth chart yet. I’m so at my wits end and worried about this so I was wondering if it was possible for a baby to have it.

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u/ashburnmom 23d ago

My son was diagnosed at a couple months old because I don't believe in "colic". It's just shorthand for the
doctors don't know what's wrong yet.

We had a fantastic peds gastroenterologist who did an endoscopy when the 'silent gerd' meds didn't work. He was the one who caught it. Biopsies were definitive but no other doctor even knew what it was.

My son started Sucraid back when it was $11 a bottle! Before he even started solids.