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)

yes I agree - people not taking it seriously was the worse thing - until it got critical. Trust your instincts, see a specialist.xxx

It is infuriating how late it is diagnosed (especially by HVs and GPs) considering how common it is, and how many GPs still just prescribe food stabilisers (Gaviscon) rather than anything to help with the pain.

The best meals our son ate from 6 months onwards were sharing whatever we were eating (plus chocolate, cake etc). Unfortunately, the cost to us has been a sweet toothed child, but at least he is healthy.

Thank you. You're all so reassuring. I love her SOOOOO much and do feel like I am failing her. So hard to be optimistic.

Appointment at hospital is tomorrow (not today, they got it wrong) so let's see what they say. I suspect they are going to not do anything until the tests are done and the GI specialist sees her.

I did have the option to put her on high dose Losec which I hear is brilliant but the tongue thing really puts me off.

Will see if I can get Nutramigen here.

Did you say you'd tried Ranatidine? That helped my ds I think in combination with the Nutramigen.

It will take a couple of weeks either way to settle down whatever they proscribe I think if this is what is going on as they have the associations and, presumably, inflamed, irritated digestive system. Stay strong - you are doing the right thing, seeing a specialist (which is the first battle over here) - get the tests all done, see what they say, try some bland food. I am sure things will improve.

Adding in my twopenneth, ds1 had reflux, ds2 was much worse with reflux, we saw a consultant after Gaviscon didn't work. He was 4 months old.

He prescribed Enfamil AR (anti reflux) forumla just like SofiaAmes which IRRC thickens on contact with stomach acid rather than thickening in the bottle. You can get it from a pharmacy in the UK over the counter, we ended up with it on prescription.

Ds2 went from 2oz feeds every few hours to 6oz feeds. It was bliss. Originally the health visitors weren't bothered that I was feeding him 10 times a day but I was as I was exhausted.

Ds2 is now 6 and still has reflux luckily it is just at night within the first hour of him going to bed.

Good luck with all the tests, I hope they find something that works for you both.

Sending you a hug OP

My DD2 had similar at 3mths - dehydrated suddenly, admitted to A&E, on a drip for a week. I too was overseas, so I know how hard it can be just by being away.

I felt AWFUL I can understand how helpless you feel but you are doing the best for her, even though you can't see it.

Eventually, after many scans etc of her intestines etc they found NOTHING wrong, it was so bizarre.

Told me to to start her as soon as she was 4mths old on mashed avocado 3 times a day, a couple of teaspoons. It worked wonders for her. So bizarre.

Lots of skin on skin contact too helped her. I took everything at a much slower pace too.

She is now a thriving 3 yr old.

Hang in there. Hope tomorrow goes well for you.

Dd is my second and I find it easier. I knew what to look for so got meds straight away. Omeprazole didnt agree with her and she outgrew ranitidine so I took her off all medication and just kept BF her.

With DS it was horrible but I had to try not to focus on feeding so much and get out of the house all the time. But he's ok now!

Just back from the hospital. She has lost 150g in 7 days so we have to add rice back to the bottle for calories, add Reglan and depending on results of tests on Tuesday a NG tube overnight.

I was so hoping she had maintained her weight.

Hi Ophelia,

I am really sorry to hear that. Does your daughter show any interest in eating food at all? At 6 months, a baby is capable of eating pretty much a normal diet. If she is in a high chair at the table with you, does she look at or show interest in any food?

If it is just reflux (and that is still the most likely explanation) it does pass and, at some point in the future, you will look back at this time and wonder why you were so upset and worried. Is she developmentally normal? If so, the best advice our very nice paediatrician gave to us was to try to enjoy our (painfully thin) baby and not to be solely focused on weight and food.

She LOVES food, or did until something sort of 'snapped' and she started refusing all bottles and food a month ago. That's why she's on an elimination diet to see if something set it off. Developmentally she's fine (we went to a specialist who prodded her and pronounced her well and feisty) but I want her to stay that way.

Enjoying baby is a good idea. She's SO happy most of the time.

Im only telling you this so that you can completely rule it out when you speak to the Dr because Im sure it isn't this at all but Id kick myself if I didn't say anything and then it was!

Basically DS2 (who is now 20 months) was very very similar to your little girl. He literally wouldn't drink at all and really struggled when we started weaning him...he wanted to eat but it was like he couldn't get the food down. He had some other issues going on as well in that he made a funny noise when he breathed so ENT docs sent him for a barium swallow where they found out he has got something called An Abberant Right Subclavian Artery. One of the artery's from his heart has come off the Aortic Arch in the wrong place and is pressing on his osophagus...milk/food can get down but only small amounts at a time. I did the syringe feeding as well so can totally sympathise.

He's been examined at GOSH and at the moment they are not going to do anything as he's coping as it is...food is a very slow process!

They thought his was reflux as well and he had Ranitidine but it obviously didn't help.

Thank you ihearttc I hope yours DS is fine and happy now aside from feeding issues. I will make sure I ask the doctor about it.

Yes thank you he's absolutely fine...doesn't stop moving from the second he opens his eyes! They thought it was something called a Vascular Ring first of all which is where it makes a circle round the osophagus/trachea but his is just an artery which is pressing on the osophagus so obviously the food/milk doesn't go down as easily as it should.

Its probably not that at all but it sounded so similar...we struggled so much and every day was a battle to even get 10 oz down him and that was literally feeding him every hour. He was prem though so they blamed everything on that first of all and then it was reflux apparently but I knew there was something not right cause it shouldn't be that difficult to feed.

Hope you get some answers really soon-the ng tubes aren't pretty but they do a fantastic job(DS had one for a month in NICU) and it will help her grow and be able to cope with a lot more bless her x

Ophelia,

How are you and your daughter doing?

Hallo so we had a barium meal test and it showed that the upper sphincter in her stomach is underdeveloped so basically it is a matter of time and patience. Lots of syringe feeding but she does not seem to be in pain any more so that's good. Doctor hopes she will grow out of it by the end of the year (!!)

At least we have an answer now and tomorrow we are reviewing the drug options available to us. Basically it's the blue-tongue meds at a higher dose or continue with the Zantac.

Am relieved it's not more serious - although still looking at cmpi - but wish
they could just make it better now!

I think that is kind of the definition of reflux, although you seem to have an extreme case. I am glad you actually have evidence that it is nothing more serious. How is her weight doing since your last update? Is she eating any solids?

hey that's good news that is nothing more serious, in the long term - reflux is dreadful and so distressing but all babies i know who had it bad, my ds included, were all much better by a year. Hope things continue to imrpove xx

HI Ophelia, it sounds like you've been having an awful time. Reflux and allergies are so awful, and feeding issues are the pits. I really, really, sympathise having been there with my DS who is now 22 months and the picture of health and chubbiness.

You mentioned you have tried omperazole. There is another drug in the same family called lansoprazole which is used sometimes in the UK. It is far, far easier to administer and maybe, just maybe, it might be sufficiently different as to not cause side-effects for your little one. I think in the UK it is branded FasTabs but I believe in the states it is called Zoton.

With either Omeprazole or Lansoprazole it is really important to give it on an empty stomach and to wait at least 30 minutes after administration before commencing the feed-battle-feed thing.

If there is no improvement you could also ask them to check for gastropareisis (Or delayed gastric emptying) which is a possibility along with reflux. There is something called a gastric emptying study that can be done to check whether it's causing a problem.

YOu could check the BNF for children's information on dosages for either of the two drugs. omeprazole or lansoprazole. Often PPIs are not prescribed at a high enough dose to be effective.

Do they have speech and language therapists where you live? DS went to one for a while to help with his eating issues.

I hope you get some joy soon.

I've not read the full thread, just bits and pieces and that's what ds was like.
For us we had amassive battle on for 18ish months and then he totally refused. Prior to that he was losing weight for 8months.
Our family dr was an asshole. Did nothing, I did some research and made a few calls. I found out about a specialist who we could see on NHs, I was willing to pay private for the first appointment but we got it through in the end.

Ask for a ph probe study to be done
Barium swallow
Maybe even gastric emptying scan.
Ask of your lo can swallow and breathe at the same time too.

Ds has ftt and the best thing we have done for him is having a feeding tube put in his tummy. It's been over 4months and he's put over 2kg on! He once lost a full kg in a week sometimes more. The only thing I could do was feed him baby
Food through a syringe like medicines into his mouth to get some calories in him.

I'm here if you want a chat of come over to the special needs gastrostomy support thread
X
Hth
X

Whoops just ready your last post
Yup that's what reflux is. With age it's supposed to go, I think it was something like 95%of babies grow out of it by there 1st birthday
Ds is2 and still no luck.
X

Well we just saw another so called specialist who said it was not reflux and that it was infant anorexia. Dismissed medical history, barium meal and the evidence that she is in pain when she eats. Angry now.

FFS.

Really old school charmer type who basically patted me on head and said to get baby behavioral therapy.

and

Hi Ophelia,

It is possible that what he says has a grain of truth. If a baby has been in pain for a while with reflux, they do develop food aversion and that can persist even after the pain is well controlled. They just remember a bad association with eating. If such a thing as baby behavioral therapy exists, I would not dismiss it. Not something we were ever offered and no idea how it would work.

On the other hand intelligent adults who know their own children do not need to be patronised. We saw a paediatrician at GOSH who cost about £450 for one appointment only for our baby to be treated like a slab of meat to be poked and prodded and for us to be patronised. Needless to say, we ignored his advice and did not go back. We eventually found a far better paediatrician nearer to us at half the price who actively worked with us and our son. It is worth shopping around as, with reflux, confidence is part of the battle.

Hey I already have a behavioral therapy appointment in place for next week so when he mentioned it I just felt sort of annoyed . It was being treated like a silly little girl that really pissed me off.

...and I was sort of hoping he would say 'Aha!' and instantly make it all better...

Oh Ophelia's, so sorry for you. I so remember that feeling of placing faith in the next medical appointment only to come away feeling worse. It stinks. Is there anyone else you can see out there WRT the medication side of things?

Why no omeprazole/ lansoprazole?