Poor Feeding - Reflux, Slow Motility, ...

Hi Everyone, Just wondering if anyone else has similar experience or any advice for me.

My son is nearly 7 months old. He has had quite bad Silent Reflux since around 5 weeks old, and has now been diagnosed with Cows Milk & Soy Protein Intolerance (CMSPI) as well as Slow Motility.

We are finally getting on top of things (after a run of BAD doctors)... We are using Losec & Zantac for his reflux, Neocate formula for the CMSPI and laxitives to help move things along a little. He hasn't been able to tolerate solids yet so just on the Neocate.

As you can imagine feeding has always been a STRUGGLE. We have been through periods of complete bottle aversion but are slowly getting over that and he is happy enough with the bottle. However even with his improving health his feeding is still quite poor. We still have the following problems :

• He won't feed in my arms (except when asleep, i.e. overnight). I have to feed him propped on a pillow on the floor.
• He will only ever take a maximum of 150 mls, generally only 100mls per feed. His daily total is around 600 - 700 mls at the moment (his weight gain has been very poor).
• He won't feed when tired or cranky. He generally will only feed after a nap (which is diffult because he doesn't nap well).
• He has no feeding schedule. I try and feed him every 3 hours (because he has small feeds) but sometimes he'll be hungry in 2 hours, and sometimes will refuse until 5 hours.
• Because we can't get enough in him during the day he is still feeding at least once, usually twice overnight.

We seem to have most of his discomfort and pain under control with the Neocate and reflux meds and I really thought (hoped) the crazy feeding would settle down - but it seems to be continuing. I'm wondering if there is something ELSE going on which we haven't treated yet? Could it be the slow motility, the stomach and bowel not emptying quickly so there is not room for a full feed?

I'm really just wanting to chat with people who are going through the same thing, or have any advice.

Thanks, Kim.

Hi Kim
My little one is nearly 8 months and also has reflux. Im actually in the process of taking him off the losec - its been 3 days and so far so good!
I would have assumed being on the Neocate should has somewhat resolved the feeding issues. Have you recently adjusted his meds as they work according to weight??? I noticed when Joshua put on weight we'd have to increase his Losec dosage (we are on the suspension version) and he'd go back to normal. Just an idea.
Joshua was a little like that, sometimes hungry sooner and sometimes not at all. There have been a few times Ive sent him to bed with out his bottle as he's refused to feed - cant really force it down his throat if they dont want it.

Have you ever considered joining RISA??? They have lots of parents who deal with reflux babies and kids - and I know that Ive had loads of help from them for lots of different things - might be able to get some ideas that you may not have thought of especially if you are getting no support elsewhere.

Hope things get better for you

Natasha ;)

Hi Natasha,

Oooh, good luck with weaning off the Losec, fingers crossed that goes well!! Imagine not having to medicate your little one every day! Fingers crossed for you.

We're still struggling. The Neocate certainly helped with the intense irritability, and the laxatives have helped alleviate some of the night wriggles / rages we were getting. However feeding hasn't really improved. We're still on a pillow on the floor, coaxing him to drink enough. Won't feed well when tired or cranky, won't feed in my arms, won't take more than small amounts.

We've recently started him on solids as he's 8 months and we can't really put it off any longer. This has made the reflux worse, nights are back to being up every hour, his feeding is fussier and he's taking even less formula... all because of a tsp of pear a day!!

He's on quite high dosages of Losec and Zantac for his weight too.

Now we've treated the intolerances I really think that it must be the slow motility (or some other underlying issue with his lower digestive system) thats the problem and that the reflux has just been a nasty symptom.

Everyone kept telling me that he'd be better once he could sit up, he'd be better once he was on solids, he'd grow out of it by now. It just seems to be getting worse and we're still getting less sleep than parents of your average newborn!! I'm starting to doubt if it will ever get any better :-(

I will join RISA I think, we need all the help we can get! :-)

Thanks!
Kim.

Hi Kim

I would highly recommend RISA, there are some who are unfortunatly worse off than others but it brings home the fact that it all eventually will get better.
Joshua is like that with the feeding still - I am pretty much the only one to feed him and sometimes its even a struggle for me so I understand how you are going with that.
Apparently limit apples,potatoes and bananas as they move slowly through the gut and cause pain and constipation esp for babies with slow motility.
Pears are like a laxative and help to poo.
What else have you been feeding him???
Have you ever tried Zoton, there are some that have found that is better?

It will end, its a matter of finding what works and what doesnt. Thats why RISA is so good, I know for me family and friends dont really understand it and think Im overreacting. No question was stupid or dumb even if you want to vent your frustrations its a great group.

Hope things get better soon
Natasha

Hi Natasha,

We pretty much only lasted four days on solids... the first two days I gave him 1 tsp of swede. He'd started to deteriorate so I switched to 1 tsp of pear the next two days. He continued to deteriorate to the point where we felt we couldn't continue. I just don't understand how ONE teaspoon of food a day can cause so much grief.

He did poo every day, and a lot of it was actually really runny, but he seemed like he was constipated ... the reflux got worse, he wouldn't drink and he just seemed as though he was full to the brim even though he was taking hardly any Neocate. I'm worried that its actually overflow diarreoh and he actually has some sort of blockage or twist in something which is ok when he's on liquids but the solids clog it up??... I dunno, I'm completely guessing. Its been another three days with no solids and he hasn't really recovered but he is slightly better.

As soon as the long weekend is over I'll be on the phone to the gastroenterologists office... we haven't had any real tests done and after 8 months I think its time to stop guessing and actually get to the bottom of the problem. I know a lot of the tests are invasive but this is really starting to kill us... I'm so tired of seeing my son suffer because I feed him.... we're all tired, getting next to no sleep, getting close to burn out.

I know what you mean about friends and family not understanding. If James smiles when family are here they just say there is nothing wrong with him. If he cries (which is most of the time) they just hand him back to me. I've barely seen my friends since he was born. There is just no reprieve.

I'm just feeling depressed because the solids thing was one of our last hopes and now I know we are in this for the very long haul. I know we'll survive I just have to get my head around it and get in the right frame of mind. Right now I'm feeling sorry for myself ;)

Cheers,
Kim.

Hey Kim,

I just noticed now that we are the same age and our little ones are 3 days apart!!

Might want to try a dietician or something in your area that knows about reflux. Some mums have had success - albeit slowly but at least there is another support network there.

I think probably now is the time to do tests - yes from what others have said they are evasive but sometimes its better that way so you know what you are dealing with.

Is there someone who can give you a break even its for an hour so you can go have a coffee and relax - sometimes its all you need. I think many of us have gone through that and no doubt we still do to some extent. Thats why its nice to have people that understand what you are going through.

Where abouts are you located - RISA hold get togethers sometimes so that might help too.

Anyway, better go and change your highnesses nappy!!

Hope you had a nice Easter anyway and a chance to have some time out. If there is anything I can help with dont hesitate to ask.

Take Care

Natasha

Ahh another little August baby... James was premmie, he was supposed to be September but there was no stopping him when he decided August was to be it :)

We're from Canberra.

I have seen a couple of dieticians already, and have an appointment with a new one on Monday. The first one I saw at the hospital, when James was around 4 months, and I suspected Cows Milk Intolerance. I saw another through the community clinic around the 6 months mark and she gave me a list of the most tolerated foods etc. which is why I started with Swede and Pear... but that was before the slow motility diagnosis. I've gone private this time, with someone in Canberra who sounds like she has a lot more experience in this area. Fingers crossed.

Good news, I got a cancellation appointment (Thank goodness for Easter holidays) with the gastroenterologist this Thursday! Hope we can get to the bottom of things soon.

The last few days James has been almost retching for 20 mins at a time.... kind of like when you know you need to vomit but can't quite do it, or don't have anything in your stomach. Its heartbreaking, it looks so painful. Sometimes its wet if its after a feed, but sometimes its hours and hours since he had anything.

Thanks Natasha, it has been good to have a chat! Hows your LO going with the Losec weaning? I'll let you know how we go later in the week.

Cheers,
Kim.

There are a couple of people on RISA from Canberra also so thats good for you to know...

Thats great, hopefully the dietician can help you out a little better now, and thats not far off. As for the gastro, thats even better - its so hard to get in early isnt it.

Well let us know how you go - hopefully you get the answers that you need to get him better. There is nothing worse than seeing bubba in pain and nothing we can do to make it go away.

Tash

Hi Kim

Just thought Id check in and see how you appointments with dietician and gastro went. I hope they went well and you are on the track to find out whats going on with bubs.

Natasha

Hi Natasha,

Thanks for thinking of me! I've met two new Natasha's lately and they have both been very lovely, there must be something in the name :-)

We went ok with the Gastro. He felt his tummy and thought that he might have a loop in his colon which is causing him to get backed up and have overflow diarrhea. He has changed our meds a bit, upped his Losec and Zantac dosages in accordance with his weight gain (whoop, weight gain!!) and also added Erythromycin as a prokinetic (?). We've also stopped the Lactulose and started on Movicol instead which is supposed to help push things along a bit better with less aggravation.

We are almost back to stable again now I think, although the first few days on this new regime were a bit horrendous. I think the Erythromycin has stopped his retching and the Movicol has finally kicked in and seems to be settling the pain in his tummy (guessing). Last night he was only up 3 times (although once was for an hour) and he has started drinking his bottle again (as good as he ever did anyway).

We have the dietitian appointment this arvo (it got rescheduled), and we are supposed to be starting solids again as soon as possible (sigh, just when I was starting to get some sleep). Fingers crossed we can get him on the solids, because if it doesn't go well this time we're back to Sydney for all the tests (scopes, contrast xray's etc).

In some VERY GOOD NEWS my husband has decided that the money we got from the govt this week is going to be put to good use and is putting me up in a motel for TWO WHOLE NIGHTS this long weekend. He is such an angel, he knows I'm on the edge at the moment and need a decent break or I'm going to crack.

My sister is going to try and have James one of those nights so my husband can join me and we can go out to dinner! I feel kind of bad because I know it will be a stressful night for James even though he knows my sister well and if he's well he should feed for her (enough to get him through the night). I keep telling myself I will be a much better mum the following weeks and months after a break and its in his best interests in the long run :-)

Aye aye aye, I've babbled!!

How are you going with weaning your LO off the meds??

Hi Kim

I am not in your situation but was reading your story and thought I would post to send you a big hug and best of luck for things improving.

One thing I will add, stick to your guns and keep seeking answers for the best way to treat your little one. I was diagnosed at 20 months with ceoliac disease in the 1970s and the only reason I was (it was an unusual thing to be diagnosed with in those days) was because my mother refused to listen to Drs telling her she was wrong...I was very underweight and malnourished, was oly just walking etc etc and once I was on the diet I flourished....and it was her toughness that got me there

A doctor said to me once, sometimes when you hear hooves, you have to look for zebras - not horses..

good luck

Hi Kim
Well thats great you are finally getting somewhere. And the lopped colon can actually be making his reflux worse anyway. Is surgery involved for it or is it a matter of it healing itself??
I have heard quite a number of people that Lactolose doesnt work or makes the situation worse and can cause constipation and loads of vomiting.. As for the movical, I have read that it works but look at when you are giving it (maybe in morning is better) and get them to drink as much fluids as possible. Most have said its great. How is his bowel movements going now though??? Better???

Seems there is an improvement and now at least you can start again with the solids. Now that his bowels are getting cleared a little more he may be able to keep the solids down and maybe wont be feeling so full...you never know.

Do you want me to ask on Risa about the Erythromycin. Ive never heard of it and be interesting to see what others say if they have ever been put on it. Or is it more for the lopped colon???

Oh thats great of your husband (not many that would do that!) - you just need to leave your worries at home and RELAX and RECHARGE. You'll be all the better for it. Hopefully your husband can join you. Just you both cant be stressed at leaving him with your sister and hoping she is coping. Maybe get her to call IF she hasnt got a handle on things otherwise have a good night. Maybe start the solids after the weekend than???? That way you know James isnt giving his aunty a hard time. But its great. I remember when Joshua was about 6 weeks old and my husband took him to his mums cause we were both at breaking point - no sleep and certainly not happy. I remember being worried and probably called at about 11pm to see how things were going and all I remember is hitting that pillow and waking at about 9am. Now I know what they meant when they said to catch up on all your sleep before the baby comes!!

We went back on meds cause he's teething (well hopefully he is) and I couldnt work out what he was being upset about so thought it best to keep going until he gets some teeth and settles back again. He's been a nightmare last few nights, screaming and carrying on. So im hoping the teeth come out soon!!!!

Good luck with dietician. I suspect she will push to start solids so good luck with that also.

If you dont post before than, have a great weekend (lucky you having a long weekend there, we dont!) and relax and recharge. James will not hate you for it and he'll always know that mummy loves him!!

Natasha

Hi, I'm back.... relaxed and recharged. Was an awesome weekend, hubby joined me the first night and James had a pretty good night with his aunty. The second night my husband was home with James and he slept through the night for the first time EVER!! I'm so happy but at the same time kind of sad I missed it, I can't believe the improvement.

The movicol is working absolute magic I think! We actually stopped the Erythromycin because weren't too sure about it. Its actually an antibiotic at high dosages but at low dosages its used as a pro-kinetic which is basically to help the stomach empty faster.

I'm so nervous about how he will sleep tonight now I'm home.... its too much to hope he will sleep through two nights in a row. I'm just having a party that he did it once, he must not be suffering too much at all!!!!!:dance: :dance: :dance:

Will start solids again this week and see what happens... it seems such a shame to mess with such perfection at the moment but, hey, a baby has to eat!!

The dietician was pretty useless, she didn't tell me anything I didn't already know (I guess thats a result of so much research). She didn't know anything about the slow motility side of things (even though I specifically asked about that when I made the booking) and just kept talking about food intolerances... oh well.

Too bad about your little one have a bad stretch, its just not FAIR that they start to teeth once you start getting the reflux sorted out! Its worse because even if you think they are teething, your not SURE and you are always second guessing if its reflux or not. I'm sending you sleep vibes, hopefully they are catching :-)

Cheers

Thanks for the encouragement Maybe Baby!!

Sometimes you lose confindence in yourself when everyone keeps fobbing you off. Its good to be reminded to stick to my guns and get to the bottom of it for my little one!

I'll definitely be keeping my eyes and ears open for zebras (I love that analagy!!)

Hi Kim

Oh thats great to hear. You are sounding very positive and obviously you needed the break. Its quite possible that the movical alone is doing what its supposed to be doing. Ive heard great things about it and majority of people have had better success than with Lactalose.

That is really good news about James. He is obviously feeling better now that his meds are working so thats a really good sign. No offence - but he probably felt your unease too as I know Joshua was like that and if I was upset or frustrated he would pick up on it instantly. So James had a chance to relax too. I wouldnt get too concerned about it, now he knows what its like to sleep with no pain and discomfort he may well continue on with it (or if you are like me, he'll start teething and it all starts again - the waking that is!!! haha)

Ive posted a message on RISA bout the antibiotic and if anyone can recommend a dietician in Canberra that knows about slow motility and food intolerances. Im guessing there might not be too many in Canberra but if someone has anyone to recommend Ill pass it on.

ANyway, better go and feed brekkie to the little one.
Congrats again, and wonderful having that break.

Natasha

Hey Kim,
Ive got a bit of info I can pass to you that may be helpful, but dont want to bore this post, not sure how to send to you though through email or if you like I can try to post it on here for you...
Hope all is well (or as well as can be)
Natasha

Hi Kim
Was wondering if you had ever thought about taking your little one to an oestopath. My little one suffered pretty baby reflux from the age of 3 weeks old and had many many sleepless nights. Once she got to 3 months I thought enough was enough and I took her to a recommended oestopath. I had to spend 30-40 minutes everyday doing massage on certain pressure points but got results within a few weeks. Now she is 6 months and sleeping 9 hours everynight. She is now teething which is a whole new story but at least she hasn't got both. I'm a firm believer in fixing the problem not treating the symptoms. Kelkel

Hi Tashe,
You can email me at kimberley.ford@gmail.com if you like, that would be great. Thanks so much.

Hi Kelkel,
I hear you, I hate pumping my son full of drugs just to control the pain when I know we haven't got the underlying cause under control. We did see an osteopath and a chiropractor also (at different times). It didn't help us unfortunately. I didn't go long term, basically because I couldn't afford it, already spending hundreds (if not thousands) of dollars a week on medical expenses. I wish I could have followed through with the oestopath for a few months.

Its funny how the "enough is enough" stage is around 3 months isn't it?! I think we're designed to cope with anything for the first three months (hormones and the like) and then 2 hours sleep a night is just not enough any more. Its funny how the older your baby is the less and less you can cope on 2 hours of sleep... don't know if its pshycological, chemicals/hormones or just physical accumulation!!

Hi Kim Bear,

I can suggest if you don't want to use the erythromycin, then you could ask for domperidone works just as well on most kids. I am wondering why they think he has poor motility if he hasn't been tested yet?

I don't think you would be out of your element to ask for testing. In my expierience, cases like your sons, don't go away at the magic age of 1. If you do think he has motility problems, then ask for a DGE test, or delayed gastric emptying test. That can tell you how much his motility is a problem, then you can try the domperidone. If he has severe gastric emptying, then you would want to know now, rather than later as this will be a reason for low weight gain.

What dose of losec is he on? Is he a happy bub? If you use the compound do you get it changed every 10-14 days? This may help as it is proven that the compound can go unstable at this time. We get our script split and I can tell when it is going bad now.

My son is now 4 and is still on meds for reflux, but overall life is good. It DOES get better eventually, so hang in there. Please ask any questions you have.

Hi scarlet121,

I guess the doctor thinks he has slow motility based on his symptoms. The next step is the tests, we are just trying the obvious treatments first to see if we can spare him the trauma of them. I fluctuate between wanting to go in and demand the tests so I know exactly what I am dealing with and thinking I should be more patient with the treatments and I might be able to spare them for him. You never know the right thing to do and you always feel guilty for it either way - who'd be a mum?! ;-)

He's on 20mg of Losec a day (10mg morning and night) as well as 2ml of Zantac morning and night (apparently it protects the Losec from wearing off). We were on the Losec suspension in the early days but I think I had a crap chemist because it rarely worked, I would get whole batches that didn't seem to work. We now disolve the tablets and that works really well. We are also on Movicol (in hindsight Lactulose was bad for him), and we are back on the Erythromycin since we started solids. His formula is Neocate LCP.

When we start solids he deteriorates quite badly. Obviously constipated, but we've gotten that under control with the Movicol. But he also starts refusing his bottles, sometimes reducing his total intake by half!! The erythromycin has really helped that this time and we have got him on a little bit of vege mush (a couple of ice cube portions) without too much drop in his Neocate intake. I will definitely ask about domperidone though!

I can honestly say that the last couple of weeks are the first that my DS has been *consistently* what you'd call happy. He's sleeping in the day (mostly) and taking bottles and not screaming. I've even given him the very occasional bottle in my arms. He still has his whingey periods and obvious reflux episodes but relatively happy!! I'm actually enjoying him!! It was only a month ago that I was sitting outside bawling while my husband was inside feeding him because it sounded like he was being murdered.

He's still not sitting up on his own (9 months old on Monday) and I think this is because he's never liked to bend in the tummy area. He is much happier rolling, and if I put him down in the sitting position (which I do every time as encouragement) he mostly straightens out the tummy and falls over straight away. Do you think this could be a side affect of all the tummy problems?? Reflux kids are supposed to be better when they sit up. Incidently he is quite fond of his high chair.

I'm not too worried though, he was premmie and most of his other skills are quite ok. His fine motor skills are awesome (IMHO!)

Thanks for the suggestions, I know we're in it for the long haul now and its good to hear from others in the same boat... even better to know they've come out the other side intact!

Cheers, Kim.

Hi Kim,

Glad to hear things have been better for you. Its great to hear some positives and at least you know that once all the meds are working they are like "normal" babies and they are much happier not being in pain.

On the bit about sitting up, Joshua probably only started about a month ago with a little persistance. Although I know with him, he tends to vomit a little more depending on how long he is sitting up. I think its more about the pressure being put on his tummy when he is sitting unaided (on the floor). But he loves rolling around - he'll get from one side of the room, dodge toys and rockers, and get to the other side. I cant see him wanting to crawl at all but it does not worry me. So I would not be to worried about that. Some kids dont even crawl and just walk so I wouldnt be too worried and is not neccesarily to do with reflux.

Natasha

hey kim, i was just wondering how things turned out for your son? i have an 8 month old with bottle aversion and it has been very hard to find anyone who understands.