My very low weight, no appetite, seemingly normal son!

[girlfromwales]

I am posting here in the hope that someone will have some advice/experience that they can give me, as I seem to have exhausted all profesional/Google avenues! My DS was born 2 weeks early at 6lbs 15oz and has never really fed well. We had to go back into hospital a week after birth as he dropped 15% of his body weight, then everything went well (I was breastfeeding) then he developed severe sebhoerric (?) dermatitis at about 2 months old when his weight basically stalled. Since then, it has been a constant struggle to get him to gain weight. He is now on Infatrini and weaning with perfect skin but is only 10lbs 6oz - completely off the centiles. We have had all the tests done - thyroid, liver, allergies - and are now waiting for a sweat test and various choromosomal tests. Things are made much worse by the fact that he seems to have no appetite. We have to really force feeds down him sometimes, with him crying and fighting it - but then other times he will take 120ml in 15 minutes. Does anyone have any experience with similar difficult children? Or advice? It's beginning to affect our family life - we have DD (perfectly healthy, BF till 1) age 3 and can't do days out etc as the feeding takes precedent above everything. HELP!!!

I am sure it is really hard at the moment; hopefully you wont have to wait too long for the testing.

Have you asked your GP/HV/consultant for advice about feeding - they may be waiting so they don't advise the 'wrong thing', which can be hard on you.

They just want us to get it down him. We spent a few days in hospital with an NG tube because he had thrush in his mouth so wouldn't feed at all. The strange thing is sometimes he's hungry, sometimes he isn't, and there's no outside sign/indicators as to why this might be. He takes solids much better than milk so we mix the milk with rusk when he won't take it, and he does like purees too, but it does seem like there's something else going on. I guess I am just looking for reassurance/guidance from people who may have experienced this before, because I am stumped! I thought I'd got this baby lark sorted, but he is a mystery.

Oh you have my sympathy gfw. My dd was tube fed for a year because of health problems. She never wanted to eat really, couldn't suck because it made her too tired and basically couldn't be be bothered with it. It does sort of take over your life.

I hope you get to the bottom of it soon (without there being anything hugely wrong) - at least we knew why she was this way - I imagine it's even more frustrating when there is no apparent reason for it.

Hi there. I so understand what you are going through. How old is your little ds?

I have/had 2 dc who are ftt. ( failure to thrive) My ds who is my 2nd child was born at 9.5lbs but stopped gaining weight at 4 months till 16 months. He refused to eat anything except breadsticks and custard. He also had severe silent reflux and then developed a real phobia of food and didnt eat. We had feeding clinics, test, assesments etc it seemed every week. he never seemed hungry and the classic "leave him, he will feed when he wants something" ended up with us in hospital with him on a drip due to dehydration and one consultant mad at another!! He has plenty of health problems (strangely nothing that is do do with eating/ digesting etc)

When he was 13 months i had dd2 and he seemed to change over a 2 month period. He started eating things and being more relaxed about food and life changed so much. I remember i bearly left the house with him before then as it was embarressing if we were out when trying to get him to eat. People used to comment etc. Then it all changed slowly, i declined going to all the clinics (as we had established him not eating was NOT a medical reason) and i became more busy with dd2 i chilled alot more. He said he didnt want to eat and i said ok. Now i have a 2.5 year old who will try anything. he still has a small appetite but meals are no big deal. He sits , eats what he wants and i clear away. hee also in the last 3-4 months has started to ask for food around our meal times, so to me showing that he now has the ability to feel hungry. He is still small for his age, in 12-18 months clothes. But is a healthy weight for his height and gaining weight steadily now.

I know exactly how you feel though as i am now going through similar with dd2. She was born at 8lbs and now at 16 months weighs 17lbs. She is just starting to go into 6-9 month clothes, she is so tiny and has no fat on her. I hold her hands as she walks and feel i could snap her little wrists.
She never took to milk, not breast or presciption formula. If she ever took 3.5 oz we phoned the grandparents to celebrate! lol.

Strangely she was a very content baby till we started weaning. I didnt start till 6.5 months, on consultants advice. She is now very fussy and clingy and tired etc all the time. She adores solids. She always wants to try stuff and eats the same as dd1 and ds. She prefers blw and i am happy to go with that. However, she doesnt have a huge size meal as expected as she has a tiny tummy, but she does not gain weight and very regularly loses it. She does suffer from digestive problems and is on medication as she gets severe constipation (bad enough to infect her) and then runny tummy! Thankfully though meal times are not an issue with her so eating out and about is fine.

We are just starting the route of investigations into her very slow weight gain as they think it is more than just her being "diddy".

Im so sorry this is so long. If you want to chat i would be happy to email etc. Would love to hear more about your ds. How old is he? what have they said so far etc.

Its hard when it isnt your first isnt it as you feel that you should know what to do and what is going wrong!

girlfromwales, I can completely sympathise. My ds2 never seems to want to eat. He is now 22 months and still only 9.5 kg (on the 0.4th centile for weight) and is quite simply not interested in eating - to the extent where I am now getting seriously concerned that he is developing a food phobia.

The dietician has been little-to-no use and all the medical professionals seem to churn out the same old crap about "if he's hungry, he will eat", but he previously went 4 days without eating a thing when I tried just sticking the food on the table and leaving him to it. In a typical day he eats half a soya yoghurt (dairy allergic), 3 teaspoons of lunch, the same of dinner and 12oz of hypoallergenic formula. If I let him feed himself, he eats nothing. He has not eaten breakfast in about 8 months. We never go out at meal times because it is too stressful and dp has had to give up work to look after him as we can't put him with a childminder/into nursery whilst he is like this.

I'm therefore hardly the best to give advice in this situation, but I can understand where you are coming from.

Thank you everyone for your time posting - I completely forgot about posting over the weekend! DS is now 22 weeks and at last weighing on Friday was 4.68kg which I reckon is 10lbs 5oz-ish. He has completely refused the bottle since having the virus which led to the NG tube, so we are currently giving him every feed by spoon of Infatrini mixed with rusks. He is therefore getting about 800/900 cal a day which means he should be massive! But the doctors keep saying give it him however he will have it, but I think just having rusks will create feeding problems later as he won't want any savoury foods. I am trying to keep giving him different tastes but this is causing arguments with DH as he is very focused on just getting the calories down him - he is obsessive about keeping feeding/pooh charts up to date and while I know he only wants the best, he is doing my head in and certainly not helping an already stressful situation! DS has never been massively hungry - when I was breastfeeding he would want a good feed sometimes, other times would arch his back, scream and fight, then go fast asleep after wearing himself out. Amyjo - I understand completely about your DD2 - Charlie can't even hold his head up completely - it's like he's on a spring. He's also still in 0-3 month clothes and I too get tired of the constant questions when I take him out and people act all shocked when I say he's 5 months and no, he wasn't prem! Amyjo - what are they testing DD for? I personally think there's something wrong with DS's digestive system that means he needs loads more calories than a normal baby to get the same benefits from. His poohs are also weird - sometimes green with white grains in, currently huge and pale yellow, yoghurt texture (sorry!) And then you look on Facebook and there are babies the same age as DS who are 21lbs which is ridiculous as my DD is only about 40lbs!
I sense I have wittered on a lot. Amyjo - would love to discuss problem sons further! Thanks MNers for sympathy xx