I feel that there is something not quite right with ds

[summersflowers]

Ds is seven months old. When I had him, I knew I wanted to breastfeed. But when I tried to feed him he struggled to latch. We had an absolutely awful night in hospital with him latching, then falling off the breast, getting frustrated …

When he was weighed at day 4 he’d lost 12% of his birth weight and he was put on a feeding plan which obviously pretty much signalled the end of breastfeeding, although I didn’t want to give up. I thought it might be a tongue tie so found someone private to snip it but it made no difference - he just couldn’t latch on.

Eventually I gave up. But for months he could only tolerate tiny amounts in bottles. At four and a half months he was still having the same size he had as a newborn and he just couldn’t manage any more. Even then he’d throw up a lot.

The HV weighed him at 5.5 months and unsurprisingly he’d dropped a centile. He still can’t have more than 5oz at a time. She recommended starting to wean him. And just as with the breastfeeding, it isn’t happening. People say cheerily things like ‘oh my baby was the same … have you tried giving him bits of toast he can hold?’ They don’t seem to understand he eats nothing. Give him a bit of toast and he holds it then drops it and shows no interest in picking it up again. If I try to spoon feed him he clamps his lips shut.

Daytime naps are fine but night time is awful. He wakes and refuses to go back to sleep. He’ll fall asleep on me and then refuse to go back in his cot. Last night he screamed hysterically even though I was with him holding his hand. Again most babies I know are doing longer stints by now.

It just doesn’t seem quite right to me. He’s a lovely baby. But something isn’t right.

food is for fun until they are one

I am not having a go at you at all @MistyFrequencies and I know that your post was supportive but I think this has become almost unhelpful. My understanding of this phrase is don’t worry if half your child’s dinner goes on the floor, most of their nutrition comes from milk. But I don’t think it applies to children who won’t eat anything.

He last had a feed at 4 am and hasn’t had anything since. This is why I worry.

Hi OP. I'm a bit confused. You say your DS has reflux, which would certainly account for the kind of symptoms you describe, so is there some reason you think the diagnosis is wrong? Reflux is usually caused by an immature esophagus and generally resolves around a year old. Weaning can be very challenging. Have you tried smooth, soft finger foods like banana or soft cheese triangles? Definitely avoid lumpy foods, for now. There's research that suggests babies with reflux should remain on smooth purees for longer so if he's not even started on purees yet it might be worth persevering with trying to introduce them a bit longer. I'd also go back to the GP who prescribed the gaviscon and explain you're still struggling with feeding.

I don’t think the diagnosis is wrong - I think there must be some confusion. It’s quite rare he has reflux now to be fair. It does still happen but not a lot and not much.

@Prestel again I’m not being rude I promise but this is exactly what I mean. People say oh weaning is difficult - try this. He won’t eat anything at all. I’ve puréed loads for him and resorted to ellas pouches. He won’t eat.

Absolutely. Food is not just for fun. The reassurance has a place but your situation is not appropriate to use it.

Sorry I don't know who you should be pushing to be seen by. I was hoping other posters could answer that one! Looks like you've got a couple of ideas at least.

It was months since the gaviscon was prescribed - January maybe. It made no difference. Then we were put on something else which he wouldn’t take. Then I gave up

My dd was like this. Hardly ate anything kept dropping centiles. She's now 11 and tiny still. She's on the 2nd centile. She was born on the 50th. It's only just getting looked into now. Keep pushing. I wouldn't be too worried about crawling yet. I know a few babies that went from sitting to walking.

@summersflowers seriously if you can scrape together the consultation fee with a private paediatrician it will help, they will listen to all of your concerns. If there is anything wrong you can go back to the NHS for treatment but often the hardest part is getting someone to initially listen.

@summersflowers I'm sorry. I really didn't mean to add to your distress and that was a bit thoughtless of me.

Hi

DS2 was like this and I know well that desperation when you try to explain that your baby east nothing. My lowest point was when a stupid health visitor put a biro dot off the centiles in the margin below because his weight had dropped below the lowest centile for his age.

Your DS's medical reasons won't necessarily have anything to do with mine, but I can help a bit. The sickness and screaming were severe reflux. he was in agony and associated eating with pain. Also the vomiting made swallowing hurt, so he didn't swallow. None of this was explained to me by medics. I worked it all out for myself. I resolved it by putting miniscule amounts of food into him pretty much all day long. No 'feeds' as such, just tiny morsels. Weaning is a good idea. In DS's time it started at 3 months! so 5.5 months is definitely OK. Once he;s weaned through the usual foods, you could try to make every spoonful as calorific as possible - pureed avocado and banana mixed with full fat yoghurt was something I managed to keep him alive on at times as even a teaspoonful had more calories than half a cup of pureed pear.

Meanwhile you could try making d=feeds shorter and more frequent. Maybe use some formula that reduces wind and reflux if that's an issue. And burp him sitting up on your knee, rubbing his back, not resting on your shoulder, as the lack of pressure on his stomach will help prevent vomiting.

FWIW DS2 also turned out to be autistic so he had enormous sensory issues with eating and the weaning was a painful very long battle but worth it as he now loves all sorts of food and is not in any way the kind of autistic adult who only eats three things. he's the most adventurous of all of us. There is a strong link between severe reflux, food refusal, long crying and autism so do check other symptoms like stiffening when you hold him, or not making eye contact. I don't mean to worry you but if it is this, the sooner you know the better as there are loads of techniques that can help both you and him get through this with minimal stress.

I hope you get good help for this. It's so tough.

It was months since the gaviscon was prescribed - January maybe. It made no difference.

If the gaviscon made no difference, that might suggest your DS never had reflux at all and another cause for all his symptoms, including the vomiting, needs to be identified. Reflux can still be present and causing pain even without vomiting, though, so pain from acid could still be causing him to refuse food, but I think that's less likely. Personally I think you need to see your GP rather than the HV. Not trying purees at all at 7 months, even in a baby with reflux, isn't normal imo and needs to be investigated. I'm sure your GP will take it seriously if you explain the problems as you have here.

I would be really concerned about this, I really think you need to get proactive and do more. Waiting for a HV, all they will do is say speak to a gp. You need to get this on the gp's radar and push for a paediatrician referral. That's why some people are suggesting A&E it can so long for doctors referral I've known parents turn up to get doctors to look at dairy intolerance quicker and things. Honestly I would be calling my gp today.

Reflux is a symptom. I'd look into CMPA. If his formula is none prescription it's dairy based.

Sorry, just caught up with the full thread. Another thing that helped DS was to not try and feed him at table. He associated his high chair with eating and got stressed. I used to just post tiny amounts of food into his mouth so he accidentally ate them while doing other things. This went on for a couple of years. It wasn't always successful. Some days he just ate nothing at all and I cried. But this method kept him alive.

Another thing that worked later on was to only serve treat foods at table, so he associated sitting up to dinner with fun. Ignore any tutters who say these are bad habits. Usual rules never apply if you have a child who genuinely refuses to eat (not the same as having a fussy eater - as you know.) At table I'd give him ice cream or a pink wafer. When he wasn't paying attention, at soft play or in the park, I'd slip tiny slivers of cheese and fruit into his mouth.

You may already do this but we added Abidec vitamin drops to his milk so at least he wasn't vitamin deficient even though he was skeletal.

It's an agonising process.

@summersflowers

food is for fun until they are one

I am not having a go at you at all @MistyFrequencies and I know that your post was supportive but I think this has become almost unhelpful. My understanding of this phrase is don’t worry if half your child’s dinner goes on the floor, most of their nutrition comes from milk. But I don’t think it applies to children who won’t eat anything.

He last had a feed at 4 am and hasn’t had anything since. This is why I worry.

This really isn't right! He's barely eating milk or anything. He must be starving, please contact your gp today.

Listen to your instinct and book him into gp and get bloods and full check up, get them to feel around his lymph nodes etc. I strongly believe in following your motherly instincts op, maybe he's lactose intolerant or has celiac. Definitely push for a proper assessment. Best of luck op

Go to your GP. With love and kindness, you need to get him seen. And seen again, and again if needs be. You have the instinct. Now you need to act on it. By taking him to the GP. It can be a long slog. Phone now and get the appointment. Tell them everything you've told us here, take his red book with the weight measurements in. Tell them about your instinct. Be firm that something isn't right and it needs investigation.

If he's not trying to grab food off your plate, I doubt he'd be interested in a finger of toast you offered him, so it definitely sounds like he's not in the solid food zone yet.

It sounds really tough for you. Do you have any IRL support at all?

@summersflowers

But it doesn’t explain why he won’t eat *@Pissinthepottyplease*,it might explain the reflux but he isn’t eating anything, dairy based or not.

I’m not saying this is definitely the case but babies with allergies are in pain when they eat so often then can refuse milk and food due to the association with pain.

Book a gp appointment. It could all be within the realms of normal but your concern is certainly not unreasonable.
Digestive issues need ruling out.
Write down your concerns so you know what you want to say.
It may be a long slog to get him seen properly. The GP may not be very helpful but you need to start getting all this logged so you are less easily fobbed off.
A baby this age may have spells they need holding but if it's constant, I personally don't agree it is normal.
Can you afford private allergy testing? If so I'd be tempted just to rule things out

Id really consider the possibility of CMPA. It can be easily misdiagnosed as reflux. You get prescribed gaviscon and/or omeperozole which do nothing. Meanwhile you feed you child continually on milk. Unbeknowingly to us they have dreadful tummy ache, can't eat because of it, loose weight and we are wondering why. The children just want to sleep on their parents.

Yes, i have been in this situation, only eventually being prescribed an amino acid formula and ensuring no dairy or soya was present in my daughter's diet made a difference. Its definitely a possibility worth investigating.
Does or did your child ever show signs of lots of if wind, especially after feeds, back arching, crying endlessly or any skin issues? Also how were poos? It all helps build a picture.

Echoing the calls to get a GP appointment asap. You need to push for more help and probably a referral.

It can take some of them a while to get going - my 8mo barely ate anything till 2 weeks ago and is still only having little amounts but it does sound like your DS is really struggling.

I’d definitely do whatever you need to to get an appointment with your GP.

In the meantime I think it would be very worthwhile trying dropping dairy from his diet for a fortnight to see if that makes a difference. A low level dairy allergy can definitely cause reflux-y symptoms and loss of appetite. You would need to replace it with a good dairy-free formula (it’s not recommended nowadays to use soya) like Nutrimagen to ensure that he gets the correct nutrients.

But his diet is only formula really. I’m calling the gp now.

This is one of the most stressful things to experience as a parent. My second baby refused her bottles and it was an absolute nightmare. I spent hours pacing up and down with her in my arms feeding as she just clamped her mouth shut and turned her head if I tried to feed her sitting down.
The absolute best and kindest doctor is Sophie Rosseneu at BUPA Cromwell (paediatric gastroenterologist).
Please try and get an appointment with her.

Have you seen the Gp? What have they said

You definitely need to keep pushing with the GP. I agree it could easily be something like CMPA and where he is in pain he doesn't want to eat anything because eating = pain

Would he eat anything at all? Scrap healthy foods but you say you resorted to Ella's pouches, will he eat those? For now, if there is anything he will eat I'd be giving him that even if its not ideal

Glad to see you are calling the GP