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)

How was she before?

Has she been ill?

Can you dream feed her? When ds went on nursing strike, that's how I got food in him. I'd rock to sleep then feed. Never fed awake for months.

She's been steadily declining in her ability to take a bottle since I stopped BF at 8 weeks. About a month ago we had to start dream feeding only but that only lasted a week. Now go near her with a bottle when she's asleep and all hell breaks loose.

Dream feeding was great while it lasted. Just tried to feed her whilst asleep and all I got was a lot of shrieks and spluttering.

The only thing that works is someone holding both her hands (lovingly / playfully not in restraint) whilst singing or narrating a cartoon and another person holding a bottle. This way I can probably get 2-3 oz into her but mostly just 1oz at a time.

Have you tried pepti? Also what happens when she tries solids? TBH I'd be pushing for more help from the docs :(

Yes yes... My ds was exactly like this, I fed him every few hours day and night till he was 15 months because he would never take more than 1-3 ounces a time... The paeds were never overly concerned because he never lost weight just was very slow to gain.. Started on 75th centile and went down to 9th. He had severe silent reflux it was truly awful, we tried every drug and found omeprazole to help the best. My only advice is to keep on at the doctors do not be fobbed off and meanwhile keep up the feeding as best you can, even if it means feeding little and often day and night every hour to get some in.. It's better than being tube fed. If solids make her worse stop... They did my ds.. we found out he had a hiatus hernia which explained why he seemed to be suffering so badly we waited and he started to tolerate them at around 8 months...
My ds is now 3 and so much better, still a skinny little thing who hardly eats but he's healthy. Xx

My DS was a very fussy feeder, and would only BF for 1-2 mins at a time if I rocked him standing up. He was misdiagnosed with colic, and at 24 weeks doc referred to paed with silent reflux. Omeprazole worked for him, as did weaning him straight away, he was literally starving, got great advice here on increasing calorific value of his solids. I tiered cream into his porridge and fruit, and added cheese and butter to his veg. It all helped. Paed told me that adult omeprazole, dissolve in fruit juice and then give 10 mls.

Other poster is right keep feeding and give some solids too.

Go back to doc and insist on review of meds, and referral if not already.
I know just how desperate you feel, but they do improve. I have a normal sized little boy now. Good luck.

Thanks everyone. I have another appointment in the morning and seeing a specialist who is flying in from Hong Kong next week (I'm in China)

I worry about the losec as if it made her tongue blue what else was it doing to her insides?

So difficult. She refused all her dream feeds last night...

Will update... Poor baby

My DS had bad silent reflux and was failure to thrive too. It's so hard. I don't have any advice as I didn't handle things well (first child, didn't realize the extent of the problem, GPs and family no help etc). We were looking at tube feeding but managed to avoid it. I just wanted to give you a virtual hug and let you know that things will slowly improve. Five or six months old is the hardest time but take one day at a time and things will work out x

My dd had silent reflux. Pediatrician in USA prescribed Enfamil AR (special staydown formula with rice starch) to supplement bfing. It helped a lot. I did not find that anything else (like zantac) was at all helpful. Also, we ended up putting her to sleep on her belly. There were no other cot death risks in the family and it was the only way she could sleep comfortably. Also, dh would carry her around in "tiger" position (he would hold his palm face up and cradle dd's belly in it - she'd be facing down) after a feed. Somehow this seemed to ease digestion issues for her. She did get much better once she started solids and was sitting up on her own.

I know how you feel, DS had to be tubefed for his first 3 weeks because he wouldn't eat, and he's been a bad feeder since. Now, at 6 months, he's getting worse again. He gets so angry when I try to feed him, it's horrible.

He's on SMA High Energy formula, so he doesn't have to take as much to get the same nutrition. Could you ask about that?

There are other options for treating reflux. I've heard people swear by Zoton, though we haven't tried that yet ourselves.

Has was she diagnosed? Did they do any tests?

She has been diagnosed clinically but not via testing yet. I'm chasing the hospital but am terrified there is a congenital abnormality behind all this.

She has been accepting bottles today but only 2oz at a time with a lot of squirming and glugging. Is horrible to watch. I just want her to be able to drink a 'normal' size bottle calmly and without pain.

I would have thought that if it was caused by a milk protein allergy it would have improved after 3 weeks on Neocate?

Quick update - she is having a Series of upper GI tests on Tuesday at the local hospital. After that they may schedule an endoscopy on the 18th.

Am seeing the pediatrician tomorrow anyway as she cannot continue like this.

Last week they prescribed Reglan but then decided it wasn't a good idea given the FDA have given it a black box warning

So, Reglan, Losec Mups and Ranitidine are either dangerous, have weird side effects (blue tongue) or ineffective at highest dose.

And elemental formula doesn't seem to help either.

I can't imagine what is next.

PS I have already tried solids but they made the situation a thousand times worse. Allergies??

Yes it could be - what sort of foods have you tried?

Tried rice, apple, yam, chicken, pear, potato. Rice the the main constant and I honestly think she might be allergic to it. We were adding it to her bottles until four days ago but stopped as she was shrieking at night and writhing all the time. Now we have lost those additional calories. Argh.

Now we are just using Neocate.

You can get powder additives to add extra calories, though I'm not sure if they're dairy free. Infatrini and Duocal are the two I heard of in our month in the NICU.

My guy took a grand total of 330ml today - his worst day yet. They want him taking a minimum of 720ml of the high calorie formula a day! Thankfully we're back at the hospital tomorrow. I'm going to ask to try Neocate.

It's draining, isn't it? You feel so powerless, and so, so sorry for them.

Yes I've read somewhere that rice can make reflux worse. My two have silent reflux and I started with chicken and very well cooked potato. I didn spoon feed them, I let them DIY. Pears are ok and apple less so.

In fact mine only ate potato, chicken and bland stuff for ages!! I'm starting DD on other foods soon (she's 8 months) but not yet.

You should try introducing one food every three days and only very small amounts to guage reactions. Keep a food diary and speak to a paediatric dietician.

All solids made my ds worse too.. I seriously thought at time he was going to be alergic to everything. He had the barium swallow done and this found the hiatus hernia, which is why he was not tolerating solids. He later went on to have an endoscopy and 24 hour ph study all which showed reflux was occurring. Wait till you have had some tests and go from there cause at the moment it's all a bit of a guessing game.
Xx

All - it's so good to know I am not alone. Keep on crying as I feel soooo helpless in the face of her hunger / pain

Extra calories would be a godsend. She has had so little in the last 24 hours and now screams when I go near her with the rehydration syringe.

I wonder if I can get the high cal supplements in China?

She is soooo skinny and miserable today.

Ophelia,

What happens if you don't rehydrate her? Does she become dehydrated or does she get thirsty eventually? Milk has calories along with water and rehydration salts don't have many calories at all. I am just wondering if you are discouraging her taking more milk by using the oral rehydration salts.

It is dreadful when babies don't feed. How small is she, actually? On approximately what centile?

Hallo larrygrylls

She does get thirsty but when really thirsty takes an ounce and cried in pain over and over and over. It's grim to watch. When she dehydrates she gets drowsy and her urine smells terrible. She actually spends some days really eager for the bottle but just can't seem to get the milk down.

The pediatrician didn't want her to start associating the syringe with milk but I've just cracked and given her 5oz (!) via the syringe with the help of some very loud and distracting iPhone apps and the nanny making faces like a loon. Took half an hour of tiny squirts with a 20ml drying but at least I know she has some calories in her.

She's on the 98th centile for height and dropping under 10th for weight. She was on the 50th 2 months ago.

Some0ne twilight81 Iggly how do you personally cope with the stress?

Also sounds very familiar. My ds3 was like this and it peaked in awfulness at around 6m. I was still trying to breastfeed but he was not taking much, pulling away, screaming and also shooting off the bottom of the centiles and had no fat on him at all - when I look back at picture he looks really ill.

It all peaked for us - despite many pointless visits to useless baby clinincs, health visitors etc - one weekend when he screamed for hours and hadn't had any fluids for 48 hours and, as out of hour GP was at the hospital, I took him there and then got sent to childrens A&E as he was so distressed and skinny. They were going to admit him for failure to thrive as they weighed him as being a 3 month old not a 6m old.

Thankfully, the doctor in A&E had just finished a paeds rotation and instantly said - this is Silent Reflux (first person who had EVER mentioned this to me - hadn't even occurred to me on third child, all bf etc and ). Anyway they let me take him home as I managed to make an appt with the paedritrician for the Monday (privately). He immediately agreed with the diagnosis and put him on Ranatidine and infant gaviscon and I stopped bf and gave him Nutramigen formula as he hated bf so much. I also stepped weaning at this point, mostly toast, pasta etc - lot of carbs.. He literally climbed back up the centiles and is a chubby 22 month old now.

He is also, it turns out, lactose intolerant which I think had a lot to do with it - I am veggie so eat a lot of diary which was coming through in my breast milk and we see now that when he has dairy he gets bad stomach cramps. He is now on a dairy free diet and seems fine - we are waiting for an appt with a dietician to see how to manage it going forward.

I know how distressing this is for you, seeing a tiny baby not thriving and in discomfort - I remember crying my eyes out at the hospital and feeling like such a failure for not realising he had silent reflux. I do remember 6 months being the absolute peak of awfulness and it did get steadily better from there when he got diagnosed, put on the correct medication and, in our case, the solid food seemed to help, especially as he started to sit much straighter etc.

I really hope it is something as "simple" as silent reflux / food intolerance for your lo (they seem to go together imo) - it certainly sounds like it. Just move heaven and earth to get her to a decent peadritican, as you are doing. Good luck, let us know what they say xxxx

Hi Ophelia,

She is clearly uncomfortable but, as yet, not in a terrible position weight wise. Our little boy dropped to the 0.4th centile before gradually returning to a normal(ish) weight over several months. He was on about the 40-50th for height. It is a horrible feeling when they won't eat or when it just comes straight back up again. Personally I would follow your instincts and, if she is comfortable taking milk from the syringe, go for it.

Ranitidine worked well for our son but there are other drugs they use more now. If it is just reflux, it tends to clear up as they become more upright (cruising and walking) and the common sense approach is to keep them as upright as possible during and directly after feeds. I would try other foods in small quantities now, especially if she seems interested. Let her share a drop of your meal (assuming it is nothing ridiculous). A paediatrician told us that, with reflux, babies start associating eating with pain, rather than pleasure, and that leads to food aversion, even once the pain has been dealt with. That needs to be counteracted by trying to make eating as pleasurable, interesting and stress free as possible. Easy advice to give but very hard to do oneself when worried!

re: the weight, my ds went off the bottom of the centiles i.e dropped off from 2 under the curve and that is when they wanted to admit him, and it still turned out ok - last time I had him weighed he was a chubby 50th centile! Really feel for you. Sounds like you have a bit of breathing room before that point to get it sorted. Have tears in my eyes remembering how stressful all this was - I really think things should improve once you've seen the paed and dietician and got a plan together - as the other poster said - we gave loads of bland stuff like mashed potato, pasta, brocolli etc, no butter or sauce and it seemed to help him put on weight. toast/bread/weetabix was good for him too but they seemed surprised that he wasn't intolerant to wheat as well so may be best to wait with that. Have you tried Nutramigen formula? That really worked for my ds.

and yes completely agree about the associations - mine was refusing to go anywhere near the breast by the time we switched to formula and would scream if I even took my top off - if you find one thing she likes and enjoys that doesn't casue her discomfort just give her loads of that I would say. (For us was toast and Nutramigen from bottle)

Hmm good question... At its worst My auntie came down to stay with us for a few weeks at a time just so I had someone to pass him to as he literally cried all day, and then I would be up half night trying to feed. So any help you can get take it.
I think the most stressful thing for me was the doctors not taking us seriously, as a mum I just knew something was wrong I'dhad a colicky baby before and this was just so different... The key for us was getting a good gastro paed who really knows and understands the problem.. In fact the one we got was actually a professor so amazing.
Good luck xx