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)

I haven't read all the thread, just bits & pieces. What is your child's stools like, are they normal colour & constituency? My son has food allergies & refused to eat, as he had inflammation in his gut. His stools had mucous & streaks of blood along with vomiting.
He was unable to tolerate Neocate & was put on a special feed.

Could you ask your GP to do a Gastroenterology referral?

Good luck, sending my wishes your way. Hope you get it sorted.

Stools vary from green to normal...

Right then. She has stopped eating again after I started to add small amounts of food to her diet - a chew of celery or a little banana. Her eczema has also flared up.

I don't want to create links where there are none but seems suspicious to me...

Syringe feeding is horrible. I can't do this forever.

Back to the hospital again this morning...

Oh and the Dr prescribed Nexium yesterday which I picked up. No change yet but at least no blue tongue!

Is Nexium the new version of omeprazole? Think it is.

Any road, I hope it works for you :( as things sound so difficult. The syringe feeding must be absolutely torturous.

At the risk of saying 'have you tried.....' (because I know how irritating this can be), have you tried feeding her while she is asleep? This is something that sometimes works with babies that have reflux and are FTT. Some of them aren't fooled tho (DS wasn't).

What did the hospital say today? Hope it was something helpful. Are they going to do a gastric emptying scan? What you say about the solid foods could make sense if it's a gastric emptying issue as anything harder to digest than milk will make delayed emptying worse.

Is your DD still on the Neocate BTW? It does taste absolutely awful. Did the bottle refusal start after the switch to Neocate or did the refusal come first?

Yes! It is the new one but somehow we have regressed totally now. We used to be able to feed her asleep but now she rejects that too . Am honestly at my wits end. Have spent the afternoon syringing Dioralyte into her as when I syringe Neocate she vomits it up again.

In fact - we have a new symptom - copious vomiting. It's SO dispiriting to get 2 oz into her over 2 hours only for it to come right back up again.

Taking her to a chiropractor tomorrow (even though I am very unconvinced) but not sure what the hell to do next.

She doesn't like the Neocate at all but it's the only elemental formula available here. Ped says not to change. I lace it liberally with Golden Syrup and thank the Lord she has no teeth yet.

She takes Reglan to aid gastric emptying. You should see how little she is. Just can't get my act together today and be positive about it all.

Have you seen a dietician? DS has just been diagnosed with anaemia so bad they were talking about blood transfusions. We had repeatedly gone to various drs concerned about his pallor and poor solid intake only to be told he's fine (no tests were done). The HV ended up getting involved and insisted in the blood tests which led to diagnosis. DS was born small, but had lost weight and ended up below the bottom centile, the hospital had him down as failure to thrive and said due to the anaemia he simply didn't have the energy to eat. As he lost weight he got weaker and more anaemic.

We saw a dietician who advised us on the sort of foods to help him gain weight, and his appetite is better now he is on iron medication. She told us to start putting cream in his porridge just to get extra calories in him. I know your situation is different but I wonder if a dietician can advise you on the sorts of things to feed her with the condition she has, and hopefully get her weight up. I really feel for you OP, it's awful

Yes, saw a nutritionist who recommended a higher calorie formula so we mix the Neocate to 24 cals. Doesn't help if she won't drink if though.

Argh. Thanks for suggesting though.

I feel like we have gone through formula changes, half the medicines in the universe and all the types of bottles to start back at square one again.

Oh my goodness, I don't know what to suggest.... :(

Do you have confidence in your medics where you are living? If not then I wonder whether you could contact one back here in the UK? E.g., a paedeatric gastroenterologist at somewhere like Great Ormond Street?

Things sound dire indeed if you are having to syringe diarolyte into her. Is she dehydrated?

I don't think you can offer her the same sort of foods you would a regular weaning baby, everything you offer will have to be ultra nutrient dense. Can you get anything like coconut butter where you are? Cooked egg yolk (avoid egg white), boiled chicken so it's nice and soft. I'd go for high fat and high protein, for example if you can syringe feed 2tsp of coconut oil, that's approx 80/90cal which beats banana or celery hands down. I'd stick to a mixture of a hard saturated fat such as an animal fat or coconut butter and say a tsp of olive oil for monounsaturated fat, perhaps a little cod liver oil for omega 3. Give her these in addition to whatever milk she'll have. Don't bother with fruit, veg or cereals as it'll just constipate her and it's not high calorie enough. Has she been prescribed extra vitamins + extra iron? Most over the counter baby supplements are ok from 3-6 months and are just like a few drops to give per day.

I think you have to look at food as medicine for your baby right now, ie whatever you give her should be for maximum weight gain and nutritional benefit, rather than with normal weaning it's to introduce them to new tastes and family food.

A long shot, but my nephew had massive feeding problems and lots of vomiting which was caused by a valve of his stomach being wrong. It took the doctors quite a long time to find out, by which time he was very weakened. He then had an operation to correct the valve and gradually got his strength back.

Has your dd been checked for any physiological problem?

I know it is a long shot, but just wanted to mention it just in case.

Hope you can find a doctor who can finally help your dd. Would it be possible for you to take her to the UK?

All the best to both of you.

Hi Ophelias, I had huge problems with severe reflux and milk refusal with my dd2, it went on for months, she lost weight, was admitted to hospital, was on Zantac and neocate and literally drinking nothing. On the bad days, of which there were many she would take 10-11 oz, it got to the point she would only feed if sleeping so I really sympathise with you both, it's awful. I finally saw a gastro prof when she was 6 months. He said he believed that it was at that stage behavioural, a feeding aversion, as he felt he meds should be doing something to help if it was physiological. He said that dd associated feeding with pain and distress from her previous reflux and my constant attempts to feed her were making her more stressed and thus exacerbating the problem. He said to try his advice and we would observe for any improvement. I was very sceptical and asked for losec prescription anyway as plan b. We were to stop all meds and neocate (RAST test was clear) only to feed every four hrs and stop after 20 mins - regardless of amount taken, no distractions in a low stimulus environment. Stop charting volumes taken, not to worry if she fell down the growth chart as these children do but then stabilise. He asked was she very aware from a very young age, curious and observant, these children with a heightened awareness tend to be more likely to develop an aversion. My dh thought it was great that we had an explanation of what was going on, I thought I had created this aversion, if that's what it was. He said that there was little point in putting her through an endoscopy as generally with these kids there is nothing found. Anyway, despite my disbelief in what he said we tried it and it worked. I am not suggesting this is what is happening with your dd but it's a different angle anyway. I hope you both get some relief in the near future.

Thank you everyone for your replies. Am on my phone so difficult to scroll back and address specific posters (why is the app so crap BTW?)

I can't feed her solids or much else apart from via syringe and if I feed too much by syringe she vomits so I need to stick to milk or rehydration water. Will consider attending tips for the future though!

The ped thinks there is a behavioural component too but the feeding specialist thinks she is still in pain

I am trying to extend time between feeds but it's so hard when she takes so little.

She is going to be admitted this week for observation and tube feeding. Guess that will take the pressure off the bottle for a while but I am scared she will lose her oral skills.

Anyway, today just little sips from the bottle although she does seem hungry. Mysterious baby. Hoping the tube is not too traumatic for her. Just waiting to see if the insurance will pay as if not we will return to Europe to go private (bit late in the game to get her in the NHS system I think)

Anyway - I really appreciate all your suggestions and tips. Keeping me going!

Tracey that's really interesting. How did YOU manage to stay sane as you spaced the feeds and prayed she would eat? How long did it take? I have a feeling that it's the approach I should be taking as my DD is hyper-aware of everything and very very active BUT I am also a bag of neuroses by this point... I think 24 hours of DD not drinking anything might just finish me off!

Ophelias, my dd was seen in by a prof in a childrens hospital 3 hrs drive from our home. From the point of our consultation we discontinued the neocate so had to stop to buy some ready made formula and feed her on the way home. She must have liked the taste, as compared to neocate because from that feed onwards there was an immediate improvement. He observed us feeding her at the appt, my husband jiggling her up and down on his knee as he tried to put the bottle in her mouth and her struggling to avoid it. He told my dh that even that was a method of trying to distract her and we must stop doing it. My dh is very level headed where as I would be more anxious so he kept me in line, there were some days where she didn't feed so well but overall the improvement was very rapid I have to say. With my dd3 who is 15 wks, also has reflux and is being treated with zantac and enfamil ar I have not fallen into my previous pattern of behaviour. I have not charted amounts or tried to make her feed more often if she is having a bad day as I want to avoid that spiral of anxiety I got myself into the last time. I am letting my dd look for feeds herself although I wouldn't go much past four hours but wouldn't offer a feed before then unless she wants one. She is a lot bigger than my other dd so I think that helps too though.

The other point in our favour this time is that our new gp has been wonderful. I started gaviscon myself and when it started to become ineffective (and constipating) I went to my gp and he suggested enfamil AR and immediately started Zantac. He then increased it twice and consulted a lead by phone who is known for his treatment of reflux in infants. The plan if the increase didn't work was to start losec as per the leads advice. With my dd2 we first had to get referred to a lead for the Zantac and they wouldn't prescribe losec so referred onto a gastroenterologist. All of this took weeks to happen, she got worse and my anxiety spiralled out of control. This time is has been dealt with at two gp appts and a couple of phone calls to the gp for a dose increase and I can tell you the difference in the way I have handled it and dd3s symptoms, as they have been managed well is incredible.

Paed not lead!

Thanks Tracey will reply properly when on computer.

At hospital now for 5 days and this is the first day of observation. Nurses are supposed to be feeding her but no chance. My DH tried but nope, just screams. Now they have agreed to let me try in a few minutes.

No idea how she will not pull out an NG tube, or how the hell they will get it in her without sedation. Tiny ball of fury...

Poor, poor you. I hope you find some answers. Your poor baby, she must be in so much pain. Have they analysed her stools to check the level of enzymes and bacteria in her gut. After all she has been through, I imagine they are completely out of balance.

Ophelias I really hope that this admission helps your baby. At least you will have a bit of support there and they will be able to see for themselves what is happening. I am thinking of you both. X

FFS

They put the tube in. DD had hysterics. Tube came out. Tube put back in. More hysterics. Tube put back in. DD fell asleep. They put 4oz in via syringe. DD threw up. Tube came out. Hysterics.

and

No more tube today. This is not fun.

What about a g-tube? direct line to stomach. So sorry ng tube not gone well... was dd offered sedition before or is she too little? xxx

Am not considering a G tube until she is actually 'sick' as it were.

Can't understand why no sedation. She is 6 months

I don't either. My dd had a catheter put in at 11 months and was given midazolam so she wouldn't freak out. I'm sorry for you both.

Well the hospital is discharging us. We gave her aptamil and she has drained every 4oz bottle so new diagnosis - GERD and Neocate is vile.

Pleased and exhausted. We are to offer bottle every 3 hours (not sooner) day and night and come back in 2 weeks...