Failing to Thrive - Silent Reflux? Help... Desperate

[OpheliasWeepingWillow]

My 6 month old DD has been refusing bottles over the last month and has never taken more than 3oz at a feed. She's been on Neocate for the last 3 weeks. For two of those weeks we added rice on the pediatrician's advice but it seemed to make her worse.

No improvement yet.

She is on 30mg Zantac 3 x a day and I'm having to string feed her rehydration salts all day between feeds (if you can call them feeds).

Now she is only drinking around 15oz a day over 11+ feeds and I am exhausted and so worried. She's shooting down the centiles and looks skinner every day.

They are not tube feeding as she is hydrated.

There are some tests coming up to look for congenital abnormalities...

Every day is a battle and with each bottle refused I honestly want to cry as I can't help her. Seeing friend's babies drink 8oz at a time is heartbreaking.

We tried Losec but it made her tongue blue and did not help symptoms.

Does any of this sound familiar to any of you? (If you have managed to read this far...)

So worried and just want to be able to get her happy and fed. Once more she has gone to bed on an empty stomach (she's refusing solids as well)

OP, Y teats are not suitable until 9 months. I can only assume that they require a stronger suck because they are designed for thickened formula. A large hole teat will be better for milk.

Y teats don't require a stronger suck. They're suitable for older babies because the flow is so fast from them - most tiny babies can't handle it. DS used them for a while at about 3 weeks in the NICU, because he wouldn't suck.

larrygrylls, the paediatric advice we've received tallies with yours exactly. However, DS is taking probably 24% less than the recommended quantity of high energy formula and is perfectly healthy. He's checked at the hospital regularly, including bloods to check his hydration levels and organ function, and he's thriving.

achillea, not only was your link vague, but it stated, 'Some babies may consume more or less, however, because mothers should allow their babies to feed as often and for as long as they want', which is exactly the point we're trying to get across to the OP. Not all babies are the same!

Hi again, Ophelia's. Sorry the weigh in didn't go as you hoped. But it could, just could, be that next week will be better. Maybe your baby was so busy catching up and growing in length this week that there was nothing left over for putting on additional chub. You mentioned she was sleeping more. Maybe she really was busy growing.

Tis also possible that the last-but-one weigh in for some reason overestimated her weight. E.g., she could have been weighed just before a poo and a really big wee. Or, she could have been weighed inaccurately on malfunctioning scales that time. See how it goes next week, don't lose heart.

I am sure that your doctor will be thorough but please don't imagine the worst. I have a good friend whose daughter has been FTT since around 6 weeks of age, and has just been discharged from consultant care at 2 years and a few months. She is just very very small but there is nothing actually wrong with her.

achillea sorry, you're not being very helpful...

larrygrylls narmada Some0ne as if on cue dd has decided not to drink again this morning. I am going to go to the dr. Not for DD but for me. Am already on ADs but starting to get panicky. No solids today either.

Am going to get the nanny to start feeding her soon.

Positives:

She takes bottle awake
She is actually taking more than previously
She has accepted some solids this week
She is very happy, alert and developmentally on track.

Ophelia,

How thin is she now? What centile is she on? To be honest, she sounds OK. It is a vicious circle and she may be picking up on your anxiety. It may not be the worst thing in the World to let the nanny feed her. Then you can focus on enjoying her the rest of the time.

You seem to be ignoring me re ice cream and chocolate. Have you been told that they are the devil's spawn. At 7 months, she should be able to digest them unless she really has a problem with milk protein, and white choc does not have caffeine in it.

Hallo larrygrylls not ignoring you. :-) I just bought a chocolate cake and a carrot cake and a cheesecake to try on her! Who knows if she will take it but I'll have fun eating the remnants.

She is on the 15th centile or just below but 99th for height.

I think the doctor is scaring me a little with talk of genetic disorders.

The 15th centile is just not that thin, even considering her height. Our son at his thinnest (at about 7/8 months) was on the 0.4th centile (about 50th for height), so even on a "baby BMI" basis, he was a lot thinner. You could see all his ribs and spine poking out. Nonetheless, he was a cheeky little baby with lots of energy.

I really struggle to reconcile what you say she consumes with where she is in the centiles. She must be getting nutrition from somewhere. Are you sure she is not sneaking into the larder when you are not looking (not 100% serious) or maybe the nanny is feeding her tidbits? Are you in a hot climate? Babies will need less calories in hot climates as they need to do less work to keep warm.

There is no harm in having tests done as long as they are not too invasive or painful (or too financially ruinous). However, there just does not seem too much to indicate any serious or long term problem from what you have said. Stubborn, clever babies are more than capable of using food to manipulate adults, especially when they see how much weight you place on her eating or not eating. The more I think about it, the more I think that you should leave the feeding to the nanny for a bit and see what happens.

She started on the 50th and has slid quite rapidly hence the concern I think, plus the refusal behaviours. Her intake goes up and down but last week was good. We are in a very hot climate.

I agree with leaving feeding to the nanny. I'm going out tomorrow for work so we'll see what happens. I was feeling really confident until the ped me freaked out a little yesterday at her lack of weight gain.

You speak sense :-)

Her weight is 6.5kg at 7 months btw.

larrygrylls so sorry re spine and ribs... Must have been horrible.

6.5 kg at 7 months looks just under the 9th centile on the WHO growth charts. Our son weighed 6.5 kgs at just under 8 months and boys weigh more than girls.

I would also try "baby led" weaning. Let her sit at the table with you when you eat and see if she is interested in trying anything. Our son liked surprisingly "interesting" foods with lots of herbs and spices, even when he was turning his nose up at normal kinds of weaning foods.

Ophelia, it sounds like you're doing great. Carry on as you are. As Larry says, she is not right at the bottom of the charts. She is taking milk and some food so she's not refusing everything, maybe the am

Sorry, posted too soon, maybe she doesnt have the appetite for anymore. My DD was premature, she put on lots of weight until 6 months but then settled in the 9th percentile for weight. She's still there at 4 yrs. Shes very slender, small waist but strong and muscular IYSWIM. My DD has always been very healthy too, never a sickly child, and bright. My son who was born heavy and is much chubbier is the sickly baby - asthma, eczema and allergies.

Is your DD healthy, does she get sick often?
Is she on course in her development?
Does she look alert, bright?
These are what makes a healthy child, not whether they have rolls of fat on their thighs!

Thank you. She has never been ill, is the most active baby at baby group and swimming, is almost crawling, climbs over everything and laughs like a maniac.

I just wonder where she is going to land on the centiles as if she continues like this she will be skin and bone!

It seems to be a volume problem (20oz seems to be her comfort zone) and a gagging issue with solids right now.

I did put some cream cheese cake topping on my finger yesterday and she happily licked it off. Piece of cake was not so successful...

Sorry Weeping and Larry, this is a medical issue and regards the health of a 6 month old baby. Please don't think that giving cake will make your baby better, you really need to take her to the doctor.

Achillea,

I don't really understand your issue here. You seem a little confused. The OP IS UNDER PAEDIATRIC SUPERVISION ALREADY. This is the "children's health" section, which is really about lay people giving their best health advice. If you believe that there should not be a children's health section, maybe you should suggest that to MN.

Nutrition, ex other factors, is not actually rocket science for those reasonably well educated. My wife happens to have a degree in nutrition and the best part of a masters in dietetics. My advice is also based on many visits to a paediatrician specialising in neonates with a very similar problem to the OP. Not everything is best solved by complex procedures. Sometimes sound nutritional advice (e.g chocolate and ice cream) can be enough to get over what is normally a short term issue (reflux). If you can get through the first 12 months or so, as soon as a baby becomes more upright, gravity tends to sort out the problem.

Again, I would never suggest not being under medical care. Additional pragmatic advice can also be useful, though.

If I take this baby to another doctor I might just faint

The dietician suggested butter, cream, avocado, oils... Didn't suggest cake but I am all for it. Baby was too but gagged a little and almost threw up

Personally I do think this baby needs ice cream and cake. Just need to find a way to get it past the gag reflex.

Managed to get rid of the bottle gag reflex in a week but NO idea what to do for the solids one. Am so sick of Google

Spent the day away from home which did me THE WORLD of good. Popped home, dd had 5oz (yay!) and now off out again for dinner.

Appreciate all your advice, even if some of it is a little off target

Stick to the dietician's advice, it includes foods that are the right textures for a small baby who's only learning to handle solids. Cake is way too advanced for a 7 month old with eating issues. Melted icecream, maybe, but it's very sugary; the fatty things suggested by the dietician are much better.

Don't worry about the gag reflex, that's perfectly normal. They're all trying to overcome that at this stage. Most 7 month olds would gag on cake.

Well done on getting some time to yourself, there's nothing like it to recharge you in a situation like this! Keep doing that as often as you can.

20oz of fortified formula is fine for a 6.5kg baby! I wouldn't worry about that at all, just give her high calorie, fatty solids as per the dietician's instructions.

Seriously, something the texture of cake is not the right way to go.

I was being a bit tongue in cheek about cake but did give her some to nibble

Larrygrills there's no need to shout at me! OWW, when did your baby see a doctor?

Hi Orphelia.

My dd was FFT due to some major health issues; 98th to off the bottom of the chart by 12 weeks with true weight loss not just slow gain. Once the underlying problems were at least partially resolved she was left with a shockingly sensitive gag reflex and oral aversion. She was also ng fed which resolved the calorie intake issue but not the oral issues.

As far as dd was concerned the only way forward was if she was in control. She would not be orally fed by anyone, so we basically started with cream cheese or chocolate spread on toast, chocolate buttons and quavers and just let her suck and swallow. Anything that she could pick up and eat herself was encouraged; basically baby led weaning before the term existed. It wasn't so much about what she was eating but more that she was encouraged to put food into her own mouth in her own time.

Good luck and try to stay sane!

achillea my dd has a pediatrician we see weekly, a dietician, consultant care etc etc etc

DameSaggar larrygrylls Some0ne she actually cried when I simply put her in the high chair this morning. Would not take spoon, hold spoon or even accept existence of spoon. Put a dab of porridge on my finger. Approached... hysterics.

She did hold and nibble a cucumber stick this morning but would not suck anything smeared on it. I tried a baby fruit puff (actually poured half a pack over her and let her pick one up and put it in her mouth). She gummed it for a while and was sick all over me.

Bleurgh.

Anyway... I am going to delay any more solids until the weekend but if only she would not gag / cry / vomit as I would love to get some nice fatty food into her.

Milk intake with nanny yesterday no better than with me feeding (although I was much happier without the feeding anxiety!)

It's so stressful isn't it? I feel for both of you. Do you have access to a speech therapist - sorry I know it's just someone else to add to the list - they may be able to give you some advice on oral aversion/defensiveness.

You probably do need to step back from the solids for a while bit I realise it's difficult when you have to get some calories in.

seeing a paediatrician every week is a luxury - she should be in the very best care then. Is he/she weighing her weekly as well?

I agree with DameSaggar that you should stay off the solids for now. Get a proper teat on the bottle (with a large hole) and feed her a high calorie formula. Try not to keep changing and trying new things.

You really don't want to weigh weekly, except for neonates. It creates unnecessary anxiety and picks up too many diurnal variations (e.g whether a baby has just pooed or not or whether it has just had a drink). Our paediatrician saw us two weekly at first and extended to monthly as soon as possible and, as I said above, our son was on the 0.4th centile.

Why stay off solids? That is definitely not normal advice for reflux. Reflux is normally caused by a weak sphicter and denser foods (i.e solids) tends to stay down better. I remember our refluxy 6 month old gnawing on a chicken leg when he was refusing all milk. Baby led weaning really is the best thing for reflux.

Achillea, I am curious as to where your knowledge comes from? Are you medically trained or have you experience of reflux in your children?