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)

Wow, just like my dd2! Aversion to neocate an in my case a mummy who was constantly harassing her with a bottle! Good luck, I am sure you must be so relieved at the moment to have this break through. Once she gets back on track you could probably stretch the nights a bit more too and give you and yr dd some rest!

GERD is the American term for reflux. Strange that she is happy with regular Aptamil. I think dairy allergy/aversion is hugely overdiagnosed, it is actually relatively rare and has other symptoms (rashes and mucousy stool).

I am really pleased that she has found something that she is happy with and you did not need the tube.

A dairy allergy is diagnosable by a blood test (RAST) or skin prick test so that is easy to rule in or out. My dd2 had a negative blood test so not IgE mediated but her paediatrician said that reflux is often secondary to cows milk protein intolerance but of course there is no clinical test for intolerances, so any diagnosis can only be made on symptoms alone.

In my dd's case the reflux which was the initial problem must have resolved itself and then the behavioural element, and severe dislike of neocate took over it seems. Perhaps that is the case with Ophelias's LO too, it's the best outcome really.

Well I am officially confounded. She has drunk 2 x 6 oz bottles in a row which is unprecedented. Has not choked or gagged and is happy as Larry.

I am hoping that she just thought Neocate was disgusting so went on hunger strike. Makes me though that all that time she was screaming 'what is this vile potion'!

She still needs distraction to drink or maybe I think she needs it. No idea.

Am going to add oil to her bottle on ped's advice to add calories and see what happens.

Have you tried her on ice cream? Very calorie dense and very nice to eat! Much nicer than oily milk. I would not surprise her with adding something which she may find disgusting to her milk. It may put her off just when she is doing well.

I agree with Larry - you have to be very careful that you don't put her off. Could you give her milk with oil from a cup so she doesn't associate it with bottles?

Great news that she is drinking so well! You must be so relieved.

Can the dr not prescribe maxi-joule or duocal to give extra calories instead? Not sure how suitable these particular preparations are for infants but they are used with adults to add calories. One is a powder and the other a liquid. You add very little to fluid so it wouldn't alter the taste. Would certainly be nicer than oil!

Hallo I'm in Asia and none of that is available - we checked hence the oil idea.

But, I am adding an extra scoop of formula to every 5 oz on advice of the ped. The Aptamil now tastes of melted ice cream. 12 oz over 2 feeds so I can only imagine the meds sorted the reflux some time ago and she spent weeks wasting away as we were forcing Neocate on her.

Thanks for all the advice here. I never would have had the confidence to stop the Neocate were it for Mumsnet, and am dry grateful for everyone who took the time to reply.

very not dry

Oh I am so so pleased that the nexium is working. I could never get DS to drink Neocate either - it is absolutely horrible.

PPI drugs were our saviour too. It was just a question of getting them at the right dose.

I think I saw another thread you had started about sleep and how your baby was sleeping so much and not eating enough in day. This could also be a result of the nexium actually working. Reflux wreaks havoc on sleep as you've probably found. So getting it sorted with meds has probably given your babe the chance to catch up on sleep :)

When my son's regime of lansoprazole kicked in, he too started sleeping through the night. I am sure the two were connected.

OH Dear.

Back again. She has been weighed today and despite fortified formula has not put on an ounce. In fact not even a gram! Ped is mystified and weighed her on 4 different scales. I even think she looks fatter! Am devastated as was SURE she had put on weight. Now he is going to look at some genetic metabolic disorders / heart issues that might be contributing to her issues as her growth chart has stalled.

She's SO happy though... She's unhappy about solids but getting a couple of teaspoons of olive oil fortified oatmeal into her 3 times a day (can't taste the oil... I've been eating it myself to check)

Now what... :-(

How often is she being weighed?

When they are very little, their weight may go up or down by 100g or so due to when they are weighed during the day (excreta or urine inside or outside!). It is possible that she has put on some weight but she was weighed previously just before a nappy and this time just after.

Of course, do the tests but if she looks fatter and has plenty of energy, my bet is that it is measurement error.

I had something similar with mine. You need to keep going back to doctors, time and time again. Not necessarily paediatricians, but anyone just to check her health. This thread is bringing back the awful experience I had with mine. I really do feel for you, I was in and out of the doctors for the first two years and I'm a very laid back person generally, not an over-worrier at all. When the doctors don't know what's wrong you just have to keep going back until they find out what is.

In the end, two things helped - one was very obvious. The hole in the teat was too small. Sometimes babies have hypotonia, basically general weakness which makes it very hard from them to suck, and having a large hole in the teat made this easier.

The other thing is to put her on the highest strength formula you can buy - aptamil have a 'gold' one. Make sure you are measuring the formula precisely.

Thank you both. To be honest I have spent much of the day on the edge of tears.

We use Y teats and I fortify formula to 24 cals. Today she has had 18oz which is really annoying as she has been taking over 20 which equates to 24 in calories.

Also she just refused to eat anything off a spoon but I don't blame her TBH. I must look so crazy and stressed, coming at her with a spoon!

I REALLY thought she looked fatter. In fact I was staring at a chubby bit of her leg and feeling really pleased until the weigh-in today

Now am trying to find a way to keep her up to add another feed today.

How can it be this hard?

just want to add some hugs, I havnt read through the whole thread but have you had biopsies taken of her digestie tract when they do endoscopies, my daugter had Eosinophilic Eosophagitis which is often misdiagnosed as GERD ( reflux)

She has hypallergenic formula and the difference in her within 12 hours of satrtying it was amazing.

Sorry I don't understand the calorie thing - how many scoops are you putting in how much water?

florry88 we used Neocate for 6 weeks and no improvement :-( so unlikely to be EoE but it was considered. I certainly considered it! The consultant GI sent me away with a flea in my ear when I suggested it so... Good news your daughter was diagnosed. Hope she is OK.

achillea all formulas tend to be 20 cals per oz. You can (on pediatrician's advice) add 1 extra scoop of formula to every 5oz of formula to make a 24 cal formula. So, every 5 oz is now 120 calories not 100.

In 2002, the Institute of Medicine of the National Academies set a dietary reference intake (DRI) daily calorie range for infants from birth to six months of 520 to 570 calories, and 676 to 743 calories for infants between six and twelve months of age, depending on gender.

She should be getting 35oz a day. Have a look at this chart

www.aptaclub.co.uk/bottlefeeding/article/how-much-and-how-often

Hope this helps

There is no way on this earth she will ever drink 35oz a day

OWW, don't pay attention to the chart. According to that, DS should be taking 35oz and on an average day he'll take 16oz. We've given up worrying about it and fighting him. He's not dehydrated, he's gaining weight (albeit very slowly). He's just not very hungry! (or doesn't like his formula!)

I know it's different for you as she's not gaining weight, but please, don't worry about the stupid chart, it's rubbish. All babies are different.

Ophelia,

Have you tried things like ice cream and chocolate? They are not "ideal" calories but, in thin people's cases, ALL calories are good calories and those are two calorie dense foods that most people (and babies) like.

From what I have read, babies will need a total of a minimum of 85 calories/KG to thrive. You can work out the minimum she needs from that.

OWW, don't pay attention to the chart.

Have you tried things like ice cream and chocolate?

babies will need a total of a minimum of 85 calories/KG to thrive - this is a total of at least 400 per day

Go back to the doctor before you listen to advice like this Ophelia. It is dangerous to take this kind of advice.

Here is another link that says at least 650 per day. The concept of a 'thriving' baby is one that is surviving as opposed to starving.

www.livestrong.com/article/307516-calories-per-day-for-a-baby/

Achillea,

I stated 85 calories as a minimum and that is based on some research I read a while ago. Here is a more authoritative link:

www.nal.usda.gov/wicworks/Topics/FG/Chapter1_NutritionalNeeds.pdf

That estimates a 7 month old baby will weigh around 8.4kgs and need 668Kcal, around 80 calories/kg. The OP is under medical care and is not looking for advice in place of professional care, merely to get a sense of where she is between appointments.

Most regular formula will be around 70 calories per 100 ml but something like Aptamil Gold (which we found good) will be more like 100 calories (technically kilocalories for all of these). So you need to be working off a minimum (and again, I reiterate, a minimum) of 120 mls/kg of regular formula or around 85 mls/kg of fortified formula.

I still stand by ice cream and chocolate, too, just as an addition, not a substitution. Weight gain or loss is "on the margin", so an extra 50 calories/day (v small piece of chocolate) can make the difference between gaining and losing.

We had a very skinny boy and all of the above is based on paediatric advice. I have not plucked it out of thin air.

And...your link is ridiculously vague. Makes no references to exact age or dependence on actual weight and activity level etc.