Baby drink and eat extremely less

[Mumlilly]

Hello lovely parents
PLEASE HELP 🙏
hope I can find some help here, Our story is long and journey was not pleasant so far

baby girl was born on term, diagnosed with Laryongomalacia at around 5 weeks old which resolved by 4 months of age but then Acid reflux, allergies(many unknown) and bad eczema hit around 6 weeks old

she never been good eater and terrible sleeper.
she used to drink only 60-70mls per feed until age 11 months and now at almost 13 months just drinks about 100mls formula, does not eat solids, only bits and pieces here n there, she can not digest more than this. Her stomach often make noises, discomfort when passing gas or poo
does not drink water at all, trying hard everyday and everything( cups etc), not ideal amount of heavy wet nappies

weight is Ok

if I start talking about our sleep then this gonna be very long
but In short, extremely poor, disturbing sleep only in our laps or on chest until month 7 and from there little bit on bed, Cot is not for us, sleep in car or pram is not our option, she never falls asleep own her own, I have to walk and rock her till today. Sleep is still very disturbed
its been more than a year that I had a decent sleep

we are struggling hard financially but seen specialists in private

ENT,
reads Gastro
Many general peads
and so many different Doctors Gps

and paid them huge amount but No help at all

now because she is toddler and need to eat food and drink water, we are worried about her overall health
she need to know how to self soothe but no training is working

even her teeth are gowing very slowly, they just half way out in 3 months( 2 bottom)
Please Help

Hi @Mumlilly sorry you're going through a tough time. Have you spoken to your health visitor (assuming you are in the UK)? Have you requested or got a referral to Paediatrics to get your little one reviewed for ASD? The sensitivities to food and sleeplessness could be linked to ASD and that would possibly explain why any kind of 'sleep training' isn't helping xxx

It’s such a hard time! First, if her weight is ok, she is getting enough calories. Does she go to nursery? (Reason I ask is that kids can do totally different things and it’s be worthwhile checking to see what she’s eating there). Are you giving formula first? If so, offer food first, formula after. Try putting down a selection of foods and then walk away (do keep an eye on her from a distance).
unfortunately, some kids do sleep as your little one is doing. It’s brutal. She may not ‘self soothe’ for a while yet. One of mine was about 2.5. Mind you, I couldn’t do the hard core sleep training, it was too distressing - for me! Now shes a good sleeper - at 4.
(I presume peads has said nothing to find.)

@Frozensun
thank you for replying
we Saw peads paid for private one, saw few other specialists
I offer food first and few things at a time to try and looks like she gets confused with textures and eat nothing for example she like a piece of cheese all alone but if offer with meal then she doesn’t even eat cheese
feels like something is not right with her tummy
we both (parents) not big eater anyway
but 100mls feels way too less

@Mumlilly - all of my kids (all three of them) have been like yours with food in that I need to separate things out and do one at a time. If I mix them together, I can get a very different reaction. I think that's an age thing. Just persevere with offering different little tastes of everything and then also try a bit of your meal too xx

How many bottles per day?

Are you in the UK?
Use the NHS rather than private individual doctors. No-one joining the dots, and that’s what you need.

Good luck! x

@Frozensun
it depends, but 5-6 in 24 hrs( 70-100mls per bottle) no food
no water

Can you ask your GP for a referral to a paediatric dietician? They could look at ways to help her eating and drinking but also could contact GP with any concerns about conditions that could need investigating etc.
It sounds to me that she needs investigations to rule out any physical conditions that could be contributing to her not eating/only being able to take 100mls at a time.

Hope things improve for you soon, must be totally exhausting for you all.

@Nursemumma92
I raised this concern many times, Asked and requested every GP, Peads But No one helps
they simply said oh she os gaining weight, She is on 90th centile
but I just don’t feel right

I had a poor eater and water refuser who was on the 25th centile
We did get an nhs referral but the advice was just to get the calories in. So he drank squash, ate whatever he would eat and now age 8 he eats a wide variety of foods. Still doesn’t sleep though, some nights I only get a few hours but hopefully it will improve

For sleep, it is really really hard when you have a bad sleeper, I had this with my first and didn’t start to even occasionally sleep properly myself until they were 1.5 or a bit older. I found a fb group called ‘the beyond sleep training project’ which taught me a lot about what normal babies sleep is and that most adults expect children and babies to have settled sleep way before they are ready to. They provide free advice and if nothing else can provide consolation and other members can commiserate with you too.

sleep depends hugely on the individual, some can sleep terribly and take years and years to sleep better and longer stretches, some sleep easily from birth. with my first sleep was very difficult and I got very little, then I had my second who slept 6-8 hour stretches from birth, they slept so long I thought there was something wrong as I was expecting them to sleep badly like my first. Children that find sleep difficult I’ve read can be described as ‘orchid’ children, they need a lot of focus, care, effort and tending to sleep, it is challenging to care for them just like an orchid flower. This definitely resonated with my first! Unfortunately there isn’t a lot you can do, but providing comfort and support for them to get to sleep will be the best you can do to allow them to grow and they will eventually sleep better - it can just sometimes take a while for some children to get there, as frustrating and challenging as it is at the time.

a colleague of mine is very slight, doesn’t much care for food and could happily eat a small sandwich for every meal and not care what was in them as they have more interesting things to be doing. When they had their child the child was extremely fussy with food and eating, hardly ate and was on the low end of percentiles. My colleague was perpetually worried about their food intake and saw lots of doctors and specialists who couldn’t give answers. She eventually came to the conclusion that it is her job to offer food, try to have at least one or two things the child ate and some new things. It was her child’s responsibility to choose what to eat and how much. If they ate little, they ate little. She tried not to worry about it too much and though they still don’t eat loads they are now approaching teenager age and a healthy weight and development.

my first had silent reflux, still has CMPA and had eczema at several stages of development. I tried to keep everything used on skin such as any nappy cream & bath lotion as less reactive as possible, I found Weleda though expensive helped a lot they do bath oil and nappy cream.

13 months is still very little, keep trying different things food wise, you will work out what works and helps digestion etc, I’d try to include things like bits of sourdough bread if possible as it’s a probiotic food, yoghurt with fruit similarly, vegetable soup blended up with lots of veggies, everything that will help the gut improve gut flora balance

@Autumn1990
Thanks for your time, So did things improved with time, what age your lo started eating or drinking water ?

@FamilyStrifeIsHard2Bear thank you for putting my mind on ease

yes she had terrible silent reflux and some allergies

it wasn’t until preschool he started drinking water and then only whilst at preschool. At home it was still squash.
Started eating more from around 12 months but it was mainly what he liked so baby crisps, the two flavours of baby food, toast, homemade but not baby recipe cake. Jelly, dairy and soya free ice cream, carrots, broccoli Had to avoid dairy, eggs and soya so not easy. Progress was very slow but the range of foods did gradually increase. He did have school dinners once starting preschool which helped again much was left and often filled up on toast or bread until the end of year one.
I had to massively adjust my expectations with food otherwise it all got too stressful

My little Darling had No interest in food until I went to my Mum’s for a week and my Mum started offering her bits of food every two hours- a spoon or two of something/anything and after a day or two her willingness to try increased- I hadn’t been feeding as often at all and she needed to practice.
Mine hated drinking from a sippy cup, had much better success with a straw cup, more again with a small glass and the most successful was a stainless steel bottle!

You say she has allergies…..what is she allergic to and is she on a prescription formula or just a regular one?

I ask because I am a veteran allergy mum. My DC2 has multiple food allergies, one of them anaphylactic. The anaphylactic allergy was diagnosed when he was a newborn and he was given a prescription formula suitable for him, but the other allergies didn’t become apparent until after we’d started weaning onto solids. He was born slightly prematurely and was barely clinging to the bottom of his charts.
Under the guidance of a paediatric dietician (she was amazing!) we began the process of reintroduction of some of his allergens and initially it didn’t go well. He reacted to every single one over the course of a few months. It reached the point where he was then refusing most food entirely other than a couple of things he knew were safe - banana, cheerios, breadsticks and his prescription formula. It was as if in his little head food = pain 😔
Our dietician supported us through all of it and I will sing her praises all day. We worked with her until DS was around 6 years old and we had success with the reintroduction of most of his allergens. He’s 8 now and we only have to avoid his one anaphylactic allergen.

I would go back to your GP and insist on a referral to paediatric dietetics.