Experiences with underweight babies?

[Bootiesandsocks]

My son is 8mo and weighs 6.5kg, under 1st centile. He was born 20th centile and dropped around 6wo.

We’ve tried everything. He refuses a bottle so I breastfeed. He started solids well but now refuses. I’ve cut out every single allergen. He’s on very high dose reflux meds. We’ve seen three different pediatricians (one NHS, beyond useless, two private), three dieticians, an IBCLC, a speech and language therapist, a tongue tie specialist. We’ve been to A&E when he stopped eating completely. They said he was hydrated so wouldn’t do anything.

This week I had noravirus so couldn’t BF. My husband had to give him a bottle, which he accepted eventually. Now he refuses again, cries like he’s in pain after one suck. We use the bottle aversion method (not pressuring him to drink, as we gave him an aversion previously).

We’ve seen so many health professionals and they all claim they have the answer and can fix it. It’s been 7 months and we’ve gotten nowhere.

Not sure what I’m looking for. Please no advice about tongue ties or different teat sizes. We’ve had all the assessments and tried all the things. I guess I just want to know if anyone dealt with this and was taken seriously? In other countries they tube feed underweight babies. I’m losing my mind.

It might be that an NG tube could be passed to take the pressure off as you continue with weaning. I expect this might be a consideration if he still doesn’t gain weight soon.
How did you approach solids?

Where do you live? Many areas have a complex feeding clinic for these sorts of problems.

Thank you. I’ve asked for him to be put on a feeding tube but apparently this has to be done through A&E and they refuse because he’s not dehydrated and not lethargic. He’s just very underweight.

We introduced solids under the supervision of the dietician and feeding specialist/speech and language therapist (messy play etc).

We’re in Surrey. The NHS took 6 months to refer him to a dietician and by that time we’d gone private, despite several phone calls explaining how urgent it was. We have a feeding clinic through our private dietician and feeding specialist.

www.feedingtubeawareness.org/does-my-child-need-a-feeding-tube/

I would have another conversation with your paediatrician. Then I’d considers PALS .

This sounds so difficult, I'm sorry you're not getting the support you need.

My premmie baby was underweight at around that age, the consultant paediatrician prescribed some high calorie milk, can’t remember what it was called tho sorry. Might be worth a try? We just fed him anything high calorie that he’d eat as well.

When your husband bottle fed, did you feed with a non dairy hypoallergenic formula?

I had one like this - would refuse to feed if uncomfortable and only take the bare minimum when bf. It was absolutely awful and destroyed me with the anxiety.

I cut out allergens - gluten, dairy, soya, egg-without any real luck. Once we started non dairy milk (would slip the bottle in after bf) he gained up to the centile line he has tracked since. I was able to reduce the reflux meds to zero very quickly (side effects can include appetite and digestive issues).

I'm not saying it is this, btw. Just giving my personal experience. Sending you a big hug and much luck.

My son has always been under 0.4th and his weight stalled when weaning. He was put on something called Infatrini which is high calorie milk. We were referred by the health visitor to a dietician who prescribed this.

Just to add, it turns out my son has a growth hormone disorder. He's 3 and wears 9-12 month clothing and weighs 9KG. He doesn't gain weight currently and maybe a cm or two a year if we're lucky.

has he been tracking the 1st centiles since 6 weeks, or has he continued to drop over time?

mine dropped at about 10 weeks to 0.4 th, and stayed there. She was just small.

how’s his health otherwise? Normal milestones? Are you worried about anything else or is it purely the number on the scale?

hv referred us to paeds just to make sure, bloods were taken, but as everything was normal, in proportion and developing well, the weight itself wasn’t as big an issue. 50th centiles is average, some babies will be smaller, some larger.

I think what you need to look at is is he actually underweight, or just a smaller baby on the lower centiles? If he’s tracking that should be less of a worry than if he continues to drop.

I agree with this. Weight charts are a tool but they don't tell the whole story. Milestones, general happiness, gut feeling are all important too. If you didn't know he was under the 1st centile would you be worried?

Thank you, I’ll have a look at that link. We’ve got an urgent appointment with the gastroenterologist on Tuesday after many phone calls yesterday and he’s going to run some additional tests and discuss a tube then.

Thank you for the support! When I was sick my husband fed him breast milk from a bottle, which after a lot of crying initially he seemed ok on. We then ran out of freezer milk and I can’t get enough from pumping anymore. We’re trying to get him to take the amino acid formula but it’s so foul. We mix it with nesquik and vanilla essence (approved by pediatrician and dietician) to get him to accept it but it’s very hit and miss still. He won’t be tricked with a boob swap unfortunately- he needs to hold the bottle and drink himself otherwise he screams.

He seems to have multiple allergens although there is no test for non-IgE allergies. I cut everything out and once I cut out the last one (wheat and similar molecular grains) his symptoms stopped (eczema and mucus in poop). But no weight gain sadly and this was months ago now.

@Trinxsy gosh this sounds difficult I’m so sorry. How was the hormonal issue identified?

We have been around 0.4 centile but it has gone up and down (max 2nd). He puts on 50g a week on a good week.

@Notanotherusername4321 thank you, this is really reassuring. How did you know your daughter was just small and not underweight though? What’s the difference?

According to the NHS, anything under 2nd centile (or crossing more than two centile lines) is faltering growth (failure to thrive). It is associated with “reduced adult height, delayed development and increased incidence of behavioural and psychological disturbance.”

I guess that’s what I’m worried about- long term consequences. Our pediatrician was also concerned about brain development. He doesn’t have any subcutaneous fat, so any illness or temporary drop in weight could be really damaging.

@BertieBotts see my reply to @Notanotherusername4321 . He does seem happy and developing well, but his intake is clearly very low and he often will just refuse food or breastfeeds. I understand the argument that it’s just averages, but I’m concerned there is something medically wrong that hasn’t been identified.

@Bootiesandsocks Hi, we were referred to Endocrine who did basic bloods which showed how much growth hormone he has in his body (in his case he has 0!) and they then follow up with an invasive blood test. We're just waiting on a second set of bloods and then we can hopefully start treatment before school next year.

It's worth asking for a referral and if bloods come back normal, great!

@teezletangler thank you x

@Trinxsy I will ask about that, thank you so much. Good luck, I hope the treatment works for your son.

Have you been referred for basic bloods?
he’s 8m, is he rolling, sitting, crawling, playing as expected? Weight bearing if you try and stand him up?

with dd the GP did have her as “failure to thrive” once she hit 0.4th centile. It was still more of a “we can see she looks fine, but we need to make sure” exercise.

when we got to paeds they weighed, measured everything, assessed her milestones, and most importantly IMO asked me whether I had any concerns, or whether it was purely a centile number that brought us there.

they found nothing wrong, she was already pulling to stand, so physically strong as well. Bloods were normal.

because everything came back normal they concluded it was just her. Possibly because she was very active for her age. They reviewed every three months for a while but it was clear everything was growing proportionally and she was hosting milestones fine.

she was a small child and hit puberty late- she’s now late teens, taller than me, an elite athlete and A/B student.

My son (now 5) was diagnosed as failure to thrive, was under the 0.4th centile. We were referred to the paediatric team who conducted tests on him which all returned normal (coeliacs, growth hormone amping others) he then had a test to check for a genetic abnormality, as he had a large head compared to height/weight. These all came back normal.

Since then we were referred to endocrinology, his weight and height are monitored, for the past 2 years he has grown 10cm each year, and is now in 2-3 clothes and about to go up to 3-4 clothes. He is the smallest in his class, but he has hit all his milestones, is an active and lovely boy. I was worried about him starting school as he is noticeably smaller than his peers, but he is a popular member of the cohort and is never without a friend to play with.

I honestly still worry about him being so small, but he’s fine and they think he’s probably just small as I am also short.

Definitely get him referred get the tests, keep his calories up, see if you can get referred to a dietician. But if he is well, meeting milestones and happy you could just have a small child.

@Notanotherusername4321 he doesn’t roll or weight bear through his arms when on his tummy (pushing up). He is slightly ahead in fine motor skills. The physio thinks the gross motor skill delay is just lack of tummy time because it’s really upsetting for him. He’s clearly in discomfort when feeding/eating sometimes, but we don’t know why. So I do think something is wrong. We’ve had basic bloods done but will have additional tests next week. There’s a rare kind of reflux that doesn’t respond to proton pump inhibitors, so they will test for that too.

It sounds like what your daughter had was constitutional delay? When they’re healthy but growth is delayed until puberty, when they catch up? They can test for that through a quick bone scan I think, as their bone age would be younger than their actual age.

@Palendrominca thank you for your reply. That’s also what I’m worried about- as much as I wish it weren’t the case, I think it’s harder to be a very small boy than a very small girl. I don’t want him to be bullied or feel different. You just don’t want your child to suffer, but it sounds like your guy is thriving.

Did your son ever have trouble eating or refuse food/milk?