Anyone had any experience of severe reflux in a young baby - help needed please

[lisalisa]

My baby aged 4.5 months has been diagnosed wiht refulx and is on medication ( ranitidrine and dom peridone). However the meds doen't seem to have helped at all ( he is on max dose for his age and weight) and the screaming episodes are getting worse and more prolonged.

I am going to get a consultant referral to an expert in this area and in the meantime wondered if any other mums had experience of this and could share advice, tips etc. I am thinking of changing his formula milk and wonder if anyone has done this succesfully for reflux?

Thganks for all replies

lisalisa dd had really bad reflux and i know it is frowned on but i put her to sleep on her stomach and it really helped she actually started sleeping before i did this she would only sleep sitting up in car seat or lying face down on my chest whilst i slept propped up with loads of pillows and terrified she would suffocate as i had v large boobs! cant help on formula thing as she only went onto it properly at 6 months only had one top feed of formula at 10pm i used the stay down one. on advice of hospital i weaned her at 15 weeks. i remember thinking she was never going to stop screaming i think the record was 19 hours on and of! she is nearly 2 and a half now and seems to be growing out of it she wont drink milk at all and occasionally has sicky episodes if runs around to much to soon after eating

best advice is to get referred to a specialist sorry if this wasnt loads of help and hope you can get it sorted soon

Have you seen the amby hammock- it was designed for a baby with reflux. Both ds2 and ds3 had reflux. I struggled with ds2, but from the day I bought the amby for ds3 he slept well. Wish I had had it for all 3!

\link{http://www.naturesnest.co.uk/mbh.htm\here}

Does he have vomitting or hidden reflux? Has something like Pyloric stenosis been ruled out if the former ? Not sure what those medications do specifically but we had Thick and Easy thickener to help ebm or formula stay down longer. It could be the formula but best change under guidance of a specialist in case there is an intolerance involved too.

LIZS - what's thick and easy thickener and where can I get hold of it. getbakainyourjimjams - I saw the amby tonight whilst searching on relux but tbh he doen's like his baby swing which I bought in the hope that it would soothe him to sleep so I'm not hopful about the amby. His problmes are also atm in the day rather than night although last night was v unsettled.

nulnulcat - was the stay down forumula on prescription only?

What worries me is the possible diagnosis of eusphogitis - swelling of the eusphagos as ds drools consistently to the extent that his tops are always wet and is always stuffing his fist in his mouth - apparantly it can have quite serious effects. I'm going after that consultant referral monday morning.

Probably haven't read all the answers through,but both my dd(2 1/2) and ds(6mts) have been on Infant Gaviscon from birth almost.dd had the most awful projectile vomiting and child minder actually refused to keep her after a few weeks of her not keeping ANY food down,she is a very tall child now,and well above all centiles.

Hi, ds2 now aged 20 months still has reflux, was on Gaviscon at first which didn't help noticeably, then on domperidone and ranitidine and now on domperidone and omeprazole, which has helped a lot. There's loads of info on the web about reflux, try looking at pollywogbaby.com for a start, plus \link{http://www.infantrefluxdisease.com/\infantrefluxdisease.com} for lots of info including how to get the doctors to take you seriously, and the \link{http://www.infantreflux.org/forum/default.asp\infantreflux.org forums} are really good.

The medications take a while to take effect, allow it about 2 weeks before you say they aren't working. However, I'm really glad you're going to push to see a specialist. Our GPs kept telling me they thought ds2 was doing okay, and really didn't understand how much he was in pain and how completely desperate I was getting. Once we saw a specialist paed and ds2 was on the right dose of medication it made a huge difference. Talk to the paed about formula, about 60% of babies with reflux have either a milk or soya intolerance so it could be worth trying him on Nutramigen or Neocate (although they are said to smell and taste horrible).

However, even with the specialists you have to be very pro-active. They aren't going to automatically increase doses unless you tell them that your child is getting worse, or has put on loads of weight (and for us this was a bit of a catch22 but that's another story). I found that calling the doctor's office with ds2 screaming in the background got me the swiftest response! You also have to watch out with ranitidine because after a while the body just builds more proton pumps (which create the acid in the stomach) and ranitidine stops being effective. Lots of people have found better results with proton pump inhibitors (PPIs) like omeprazole. After ds2 went on omeprazole our neighbour commented that he was really showing his true self, and that it had seemed like he wasn't all there when on ranitidine. Again, it's up to you to tell them when you think he's getting worse because if you don't tell them anything they will assume it's all working fine.

If you've looked into the amby hammock you've probably already found out loads of stuff about managing the reflux, but here are a few thoughts about trying to make it a little better for you, your ds and anyone else in the house:

Try to avoid positions where his stomach is compressed, e.g. in car seat, buggy or 'Bumbo'. I started carrying ds2 round in a baby carrier loads and it really helped. When changing nappies, do it on an incline (head higher than legs) rather than lying him flat and roll him from side to side to wipe instead of lifting up his legs

Try giving more frequent, smaller feeds so there's less in the stomach to come back up.

Try to keep him upright after feeds. The advice tends to say 20-30 mins although I personally found this very difficult to keep to.

Get as much help for yourself as you can - around the house, helping to look after your son or babysitting so you can have a break from time to time. It's really important even if you feel you don't want to burden other people because your child is ill. The whole experience is so draining, you will need rest so that you can deal with it better.

I really wouldn't wish this experience on anyone, so I feel for you and hope you find a good doctor to help you and your son get through this.

hth

My ds had this until he was around 18m. It improved a little after he was on solids though. He was prescribed infant gaviscon which helped a bit but didn't stop it. I was offered something else (cisapride?) from the paed (he ended seeing a specialist after he ended up in hospital over it) but I declined as it wasn't licensed for use on children so I just used the sachets of the gaviscon.

The advice you've been given already is great. The main advice I was given (but please do check with a doctor) was to sleep him on his side, regular small feeds and no fluids without solids unless it's sips. Hth!

Hi there, my now 18mth old suffers from reflux. As an infant it was at its worse until he was about 10mths old and spending more time sitting than in other positions. I found that the zantac and gaviscon didnt work well with him at all. My boy was reacting to dairy products through my milk and removing these made a huge difference to him though he still suffered with pain and discomfort, the projectile vomitting stopped and he was able to gain weight. I found the best advice was to do what ever it took to calm him and worry about bad habits later, we used a sling, a bouncer and a swing, we let him fall asleep on us, we let him feed every two hours day and nite (this was exhausting but he needed little and often otherwise he had a lot of pain) until he was 10mths old and then stretched it out to three hours, we used the stroller, basically whatever it took. Keeping him upright definately helped and constant movement, being rocked and walked definately helped. His cot is still elevated and he still has some discomfort at times but it is so much better than it was and we have no bad habits now, he falls asleep well and stays that way. All the best as it is incredibly draining and as a mum you feel so helpless, all you can do is love them through it and keep trying ways of soothing them and easing their discomfort, it does get better with time.

My little boy had Enfamil AF (anti-reflux). This seemed to get his reflux down to about 10 incidents a day from about 40!!! It is available over the counter at Boots and they used to order it in for me. I know 10 incidents still sounds a lot but it felt much more copable with. The thing that worked best was combining this with cranial osteopathy. At around 18 months it went away completely. His paedeatrician (sp!!!) was very keen to do a barium test - I am so glad I didn't go ahead with this and persevered with more natural alternatives first. Once you start weaning you may find that certain foods make it worse - we found yoghurt caused terrible problems (which is why I started investigating dairy allergy, but in retrospect I think it was more of a consistency issue!). Can't recommend cranial osteopathy enough - every session he would get much better straight after, but would regress with each growth spurt and so then need more treatment, but it did always help, even though his sessions were quite regular at first.

However, before trying this we also tried Nanny's Goats Milk (incase it was caused by a dairy allergy - it wasn't).

Huge sympathy though as I know that the smell of the sick, the clothes that are never clean and the worry can make things really stressful.

Remember seeing an episode of the babay whisperer that almost sorted a babies reflux - they used a cushion thing to prop him up and that really helped!!

Hi lisalisa.
DD[3mths] has just been put onto enfamil AR as she was on infant gaviscon which workeds for 2 days and then she was back to her norm. I get it on prescription from the gp. It was prescribed by the pediatrician at the hospital and we have a follow up appointment in a few weeks. Since she has been on the enfamil[a week now] she has gone from a screaming baby who would only take 1-2ozs before throwing up and being really upset to a more content little baby who takes around 4ozs a feed. Ideally she should be on 5x6oz feeds but I am just glad she is taking about 20ozs a day as she was only taking 12ozs before we started on this milk. The other major bonus is that when she is sick it isnt accompanied by that horrendous screaming they do when you cant console them. She also isnt sick half as much as the enfamil when it mixes with stomach acid goes solid so is less likely to come back up.
Am sure you probably know but we also raised her matress etc in her cot. We did this by shoving a packet of nappies under her matress which has put the matress at a 45 degree angle. [sort of like the baby whisperer cushion but without paying out]

Thanks everyone - a bit tearful this morning due to exceptionally bad night. Will read through and print out ( I think) all the wonderful replies here to digest fully. Could really weep sometimes a tthe wondeful support of MN.

Sorry to hear you've had a bad night Lisalisa. Thick and Easy is used in SCBU's and should be available via HV, GP or chemist. It acts similar to cornflour in a sauce but works in hot or cold liquid. hth

I'm sorry you've had a bad night too. I hope you get some help (and proper sleep!) soon.

lisa, glad you will be getting to see a consultant and asking for some help. Dd's horrendous untreated reflux when she was a baby was one of the main factors that led to me giving up work as no-one seemed able to handle the constant vomiting (nursery practically begged us to leave!).

Just a few tips - we always kept dd upright for an hour after each feed (at the age your little one is). If she was due a sleep, we lay her down on her side. I know this is against advice but we thought it was better than having her lie on her back and choke on the vomit coming back up.

She was also diagnosed with a milk allergy (when I tried to put her on formula after breastfeeding when I was due to go back to work) and she was put on nutramigen - she still had reflux but the screaming pain seemed to get a little better with this formula. It might be worth ruling out a dairy problem.

I'm sure the consultant will do this but ask him/her for a thorough check up of your baby (sometimes I felt we had to ask for this). We only discovered that dd had a hernia and large tonsils (both of which could have contributed to the problem) when she was thoroughly checked out by a paed for an unrelated problem.

lisa i have answered your post on the wrong thread i think sorry - its on the sleeping on front thread hope you have a better night tonight x

Hi Girls,

My little one is 9 months and is my third child. She has been sick four or five times a day since birth. She couldnt tolerate baby formula or breast milk at all. It has been a nightmare truely. But to give you some hope she was put on Nutramigen 1 and this helped a bit. When I moved her at 6 months to Nutramigen 2 she was as bad as ever again. I also on the recommendation of my brother who is a physiotherapist I bought her a little chair, its like a potty for the world and she sits up on it very upright. Its like moulded plastic and I feed her in it. She has no choice to sit upright when feeding. You know sometimes with high chairs they are moving around and not siting fully up. Anyway that has helped. I really sympathise with you all. Its awful to have a baby who is sick and also what people forget is that the baby associates bottle and food then with stress and with my one even though the reflux isn't as bad, she is a devil to feed. She fights the bottle, the food all the time. Also it does wear you out, because when your in the thick of it, your struggling to feed them, burp them (Take burping gently!!!) and then the whole thing is up again all over your clothes, the floor (My little one even manage to fly the vomit into the blinds on the window......). Then you have to clean baby, yourself and the house up. Never mind if you have other kids who get distressed when baby is sick. I have two other kids, 6 and 4.
As for getting sleep then you are so stressed from the day your mind and head is racing. The only thing is everyone and doctors too tell me that they grow out of it.

Good luck............. xxx

Hi again,

Foxinsocks, I was just reading threads again and we also have had awful problems with creche. (They cannot feed her and I seem to be the only one that has the patience to keep with it. She is only in there for four hours four mornings a week while I work.)

Its awful then as she won;t sleep without having a bottle first and they struggle to give it to her and then she doesn;t have her nap and I collect her at lunchtime she is exhausted and cranky so you can picture the scene........

My mother in law now tell me me she is now spoiled and only wants me feeding her. Ok at 9 months she is still a baby, she knows Mum is going to look after her and when I was awake last night thinking about the whole thing. I was wondering where all these people with opinions were when I was in the thick of it. I also have her on solids now and I have to say anything with cows milk in it really makes her sick, so the poor thing is still on a very plain diet. I do feel so guilty about the start in life she has had compared to my other two and I feel also that 9 months have gone by and it was spent giving out, exhaustion, cleaning up and generally hating feeding time. Gosh what must it be like to have a seriously ill child. My heart goes out to those Mums. Our little ones will grow out of it!!!!!!!!!

Think you mean a bumbo - helped my ds with his reflux as well as gaviscon

Bumbo baby seat thats the one. It can help!!!!!

Sorry to hear you are having such a rough time Lisalisa. I really feel for you. DS1 had severe hidden reflux and it was living hell. That was 9 years ago and reflux didnt seem to be as well recognised as it is today (either that or I was surrounded by complete hopeless medics!!) I would echo the dairy intolerance thing. DS had a dairy intolerance on top of his reflux but that wasnt diagnosed until he was nearly 2. Apparently quite common for dairy intolerance and reflux to go hand in hand. I would get that checked out.

Hi there,

U also mentioned the constant drooling and fist in mouth. Well you are probably so taken with the vomiting like I was that you forget that little one may also be teething. My second little angel got his first tooth at 8 weeks and this little terror in between the constant reflux had her bottom two at 10 weeks, so your little one could also be struggling with teeth.

Take heart your not alone and its great for me at this stage also to have found this site this morning, I was and still am slightly stressed with the whole reflux and feeding scenario!!!!

Not read the whole thread but would like to add my tuppenceworth! Two weeks ago I was on this website at my wits end due to my ds reflux and comments from not so well meaning friends and family! My advice is ignore them all! (Easier said than done!) No one knows what you are going thro' and no one is there when the crying is constant and heart breaking! It really is soul destroying. My little one was either labelled as spoilt or as having some temper and when you pointed out he was in pain you got have sympathetic looks and told he'll grow out of it!! My lo (nearly 5 months)is now on carobel and gaviscon and I have increased his solids dramactically (although still taking about 25 oz milk) and I have seen him smile every day since last Wed! Which is a result! Although I am touching wood when I say this - I'm hoping I have seen the worst of his reflux and he will continue to improve. So for all those with lo's that are suffering - keep going and keep bugging hv and the like and keep trying something new - there is something that will work! Got to go now as lo is chewing fist and dribbling - think he's teething!!!

Thank you all for your wonderful comments. Nemo1977 I can echo your sentiments on Engfamil. After being at my wit's end I decided to try this and have had 2 better days - althoguh ds still screams inconsolably its only 2 or 3 times a day for about an hour rather than all day and the night last night was a lot better. So Enfamil and Dr Brown's bottles seem to have tipped the balance in our fabour a bit more when combined with rinitadrine and dom peridon.

some other observations - those of you with reflux babies who seem to "dribble" a lot please be careful - it could be esophagitis - where the esophagus is so irritated and sore ffom the vomiting and reflux that it is inflamed - can lead to baby refusing to open mouth at all due to pain and even in some adult cases, cancer. This is not an unserious disease so please mention the dribbling and fisting symptoms to your peads to get checked out.

A friend whose baby suffered severe reflux and failure to thrive has recommended haberman bottles which are specifically desinged fo rthis probme. Off to check them out now.

Hi girls,

I had to bring my little one to the doctor yesterday as she spent the whole day vomiting. She has a gastric bug now on top of everything. But while I was there we met her paeditrian who has known our reflux story. He looked at her again and he told us that her throat was so raw it was nearly burned from the reflux. He also mentioned this would be the reason also that she battles so much with her bottle as any liquid is hurting her. Its all so awful for the little ones isn't it? Thankfully she seems to have settled a bit on the nutramigen 1 as for some reason the nutramigen 2 doesn't agree with her.

Lisalisa hope your going to get some success with your feeds. Oh I had also mentioned about the constant drooling also to my doctor and he said that Acid reflux might also induce drooling, as stimulation of salivation is one part of the normal mechanism for clearance of refluxed material from the esophagus. So that it can be a good sign. But I think like you its important to mention it as it also can indicated other problems.

Have a good day everyone..........