Reflux in infants - advice Please

[Fuschia]

Just read back and seen the history of consultant visits

Hope the new meds do the trick, and fast ...seems likely exploration of need for hypoallergenic formula would be the next step

http://www.ncbi.nlm.nih.gov/m/pubmed/12415039/

Does seem that cows milk protein allergy is often implicated, hence why standard formulas may not be appropriate

Hope you can get some sleep. Are you well supported? Can we help at all?

Xx

[little h]

hello

My youngest son is 11 months and had reflux from about 6 weeks. He was 6 weeks prem and quite a tiny baby. we're at the gardens surgery and the drs there, dr tran in particular, have been brilliant. I too was at my wits end, and its so exhausting. If my eldest son, then 2, hadn't been in nursery 2 days a week I don't know what I'd have done! we friend gaviscon infant and rinitidine at first but switched to omeprazole soon after instead of the rinitidine. After a few days ethan was like a different baby. He went from a miserable and upset baby to a smiley and sleeping one! Couldn't believe it. ethan was formula fed from about 4 weeks... me and my boys just never got on with breast feeding. We did also switch our formula, at the dr's advice, to the hungry baby kind. I'm not sure this made a big difference or if it was that and the drugs together, but the Thinking was it would be heavier in his tummy and therefore help. He had a relapse around 5 months as he'd got much bigger, but once the dr had increased the dosage then we were back on track again. We're now considering weaning him off the drugs but wanted him to be more mobile and upright. Our dr said some babies get worse as they crawl around as they are horizontal again more...but improve again as cruising/walking becomes the norm.

It does get better, and as you'll see diff things work for diff babies. We never went down the cranial or non dairy route as ethan had been fine on normal formula at first. Feel fee to PM me if you'd like any more info.

Oh and we did also prop up the cot which helped too.

Its so awful seeing your baby in this distress isn't it.... Stick with it.

Hx

[susyp]

it does get better. I remember when my daughter was on nutramigen (not as hypoallergenic as neocate) and still waking all the time at night and screaming so much that all I could do was to lie next to her with my arm around her, stroking her tummy until she could sleep . I used to go and meet my NCT group and ask them if this happened to them , I just couldn't work out what was wrong. Nutramigen does have some cows milk in it so that was the problem. She was so much better on neocate it was untrue. She was no longer in lots of pain although still woke a lot at night, due to other intolerances including wheat, soya, who knows what else. The wheat one went eventually. I feel your pain though. But at least you are seeking help. I am no expert but if nothing else is working it may be worth asking for neocate? Intolerances don';t happen immediately - they build up - i only found out about the soya intolerance after i had given my daughter soya yoghurts for 3 weeks - the last week she wriggled and cried in her sleep all night and it took me ages to click it was the soya. She is ok if she has the odd soya thing though. Allergies you can test for, intolerances not.

It's a long hard road, but you will get through it.

susypx

[midivydale]

Ladies- 5 1/2 hrs!! 5 hrs!!! And when he woke it was with a gurgling, heartwarming gummy smile rather than his normal whaling. He went down at 6.30 and i got his bottle ready for 8. Me and hubby were waiting and waiting, 9,9.30,10... Just before midnight he woke up!! I have had dinner! I have watched east enders! Now let me not get carried away but i good heavens. 5 hrs!! Shame i didnt sleep hey:)Just thought id share the happy news after last nights misery.

[Yellow Sardine]

That's more than our nine month old sleeps in one stretch, ha!

Hope you got some sleep too. x

[Belle]

glad to hear it, midivydale, hope you get some more decent stretches as they help both physically and psychologically (i.e. there is hope!)

am away so haven't been able to post but just wanted to say am sorry you had some less than helpful PMs, I had wondered/feared that some might take that approach, but it's so nice that on the whole the posts here have been v supportive and I hope they've been helpful in some way.

Omeprazole: we got DMC to prescribe the suspension for quite a while but as someone has said, it's such a hassle with the timings etc that we've recently switched basck to the losec mups. Babu told us most parents find the syrup easier to administer but I must say we actually find the mups easier! and you can mix with a bit of orange juice to help. It is a bit of a hassle dispersing the tablets etc but it means when e.g you travel it's a lot more convenient, and there's not the use by issue. Anyway whichever you choose/try out, you should be able to get either prescribed by your doctor and sourced through a good chemist (we use Lloyds).

They def do get better - basically the medicine will ease it but mainly it is time and growth which will help. My son is still quite sick but it doesn't bother him, he's very sunny - no screaming anymore - and though not a great sleeper still, he is def doing longer and longer stretches. hang in there...and as Fuschia says , use any support you can get, and use us if we can help! I'm back next week so do PM if you'd like to meet up. Hey Strawbs and us should form a 2012 reflux support group!

[Strawbs]

We absolutely should!! What a great idea.. Maybe we should invite all mums on the forum with reflux babies to meet up.. At least then i won't feel so hagged and covered in vomit!! Hahaha I still get puked on probably 20 times a day so nothing I wear is ever clean!

[hellosailor]

I remember the days strawbs! It used to make me chuckle when well meaning people used to tap me on the shoulder in a cafe or Sainsbury's and say 'ooh, um, your baby's been sick on you i'm afraid...' and I'd look to what they were pointing at and think 'you call THAT having been sick?! I wouldn't even bother changing my top for THAT!' hoho!

There were plenty of other occasions when after cleaning her up and changing her clothes, I would have to have a full clothes change myself, including bra and knickers!

x

[midivydale]

I think a support group is a great idea! Meeting strawbs and getting loads of reassurance made the world of difference to me. Not least as i got to see proof in her gorgous, thriving, non crying baby that it does get better and there is light at the end of the tunnel...

I am so grateful for all the lovely replies and pm's i have recived.

We had another bad night but fingers crossed we will get there.

Caroline x

[spanners45]

Hi ladies,

This is a very basic question but I hope one of you can share their knowledge. My little 3wk old boy has been 'diagnosed' with reflux just today - a lot of screaming, generally looking uncomfortable, kicking of feet after feeds and possetting. I was given gaviscon in sachets and I'm finding it hard to get him to take it and not dribble it all out. Any pointers there? I've tried feeding it to him very slowly with syringe, a little spoon and a cup but I'm almost sure most of it is dribbled onto the muslin square. Also, it is quite lumpy and not as smooth as the prep instructions seem to suggest.

In short, any tips on administration of gaviscon to a little one much appreciated! I've got a long road ahead I've realised reading your comments but I can already tell your posts are going to be a source of encouragement and knowledge in the next few weeks/months.

Thanks

S

[hellosailor]

Yes it is much lumpier than the packet suggests! Try mixing a little more water in (I checked and it's fine to do that) and the syringe is the easiest way, angling the syringe into the corner of the mouth by the side of the tongue means less come back out! also, sounds obvious but use syringe when the baby is lying totally flat, if he is in someone's arms or semi upright, it will definitely dribble back out, but Im sure you're doing that already!

[midivydale]

I am so sorry your little one is suffering! Its awful! I cant offer advice on the gaviscone as i mix it in the bottle for my lil one.

We have had a good week or so but now feel back to square one again. He is on neocate and omeprazole and i thought it helped but feel so downhearted now. There has been a week of non stop crying, arching back, fighting bottle etc.

It is so damn hard and at times it feels like it is never going to get better.

Locked myself in shower with earplugs yday (hubby looked after ds) just to get a break from the crying- it breaks my heart. Why does he not seem to get better? Or why doesnt the imrovements last? After Every consultant app it appears to be getting better but the improvements only lasts a week or so.

I just dont know how to help him

[Saffron]

Hi Midivydale -- How old is your baby now? Could your LO be reaching a developmental leap? Babies are often fussier before a developmental leap. Your LO might be making progress on a medical level, but then feeling fussy because a developmental leap is on the way. Could this make your LO more sensitive to small irritations in digestion even if the reflux is slowly getting better? Just a thought. Sorry to hear you're still having a tough time. xx

[Lhell]

Hi all,

Read your comments with interest.

My recent history - my daughter is 6 weeks old, breastfed (although 1 bottle of 100mls of formula in a bottle at 1030pm-ish), both her and me have thrush that is being treated and she just had her tongue tie cut 1 week ago (after brilliant consultations with Katie Fisher - lactation consultant who I would really recommend, details at bottom, she has been mentioned on the forum before).

The latest issue in a long line of issues for both her and me post birth is that I think she has reflux. We are off to the doc tomorrow (dmc).

Am presuming they will prescribe gaviscon and I have a few questions:

do you have to boil the water you mix it with? Can you just squeeze out a bit of breastmilk instead and put in a tiny syringe?

Can you use the gaviscon as and when you feel it might be helpful or do you need to be militant?

Reading the thread my situation is not half as bad as many of you poor ladies, she is sleeping fairly well at night and the reflux is only in the day and not every feed but most of them but is making the days extremely upsetting and stressful and I feel I cannot do anything (apart from school pick up of my older daughter). I am feeling hopeless as cannot seem to help her and each feed is a nightmare. The best feeds are quietly at home and therefore I just don't feel I can do anything ever again!

I am going to do the following having read up:

propping her up after feeds and during sleep, go to the OCC in Wandsworth (I went here after my first daughter and it was brilliant), try a dummy (although she is a finger sucker and in a way having used the dummy first time round I would love to avoid it), try to get gaviscon from the doc but I wonder if you have any other advice?

I am trying to avoid the sling, which I love because I now have a prolapse which is another total nightmare I am trying to deal with separately.

Thanks so much

L x

ps. Lactation consultant recommendation for anyone that might need help with breastfeeding:

Katie Fisher 07949 176 776, [email protected] - she runs the tongue tie clinic at Kings and you can either get her to come to you for any breastfeeding issues (best money I ever spent) or you can go and see her at her home or in the tongue tie clinic in Croydon. Mr Patel does the tongue tie procedure (consultant pediatric surgeon), we were going to go on the NHS but the doctor (dmc) was very unhelpful and unsympathetic and we decided to pay 120quid to get the tongue tie snipped the very next day after diagnosis (again money very well spent). Katie helped me first time round with lots of issues and has been unbelievably lovely and helpful this time also - I had no idea our daughter was tongue tied or that we both had thrush and the feeding has really improved.

[midivydale]

Hi lhell,

I am so sorry you and your little one is going through this hell! I can relate so well to everything that you are writing. It is a lonley road and i know what you mean when you say that it is so hard to get out or anything done.

For me this forum has been a great source of comfort and meeting up with some ladies on here has helped me more than any doctors appointment!

Def keep lil one upright and elevate any positions where she is lying down even when u change her!

My lil one is bottle fed so not sure how else to administer gaviscone but yes water would need to be boiled i presume.

I am eith dmc and as i am sure you know the helpfulness of doctors varies... I would be very very persistant with wgat you need and push for a ref. do you have any chance of seeing a consultant privately?

As other ladies said earlier in this thread there is a sliding scale of meds, gaviscone usually being the starting point. I am by no means an expert but there seem to be common that refluxers have issues with dairy, may be worth trying to cut it out if bf?

Ladies like saffron, hello sailor, belle, stawbs and yellow sardine are all great at this stuff so read their posts as well!

C x

[Saffron]

Lhell, re mixing gaviscon... Do the directions say to administer it on an empty stomach then wait X amount of time before a feed? Otherwise, if you're going to administer it immediately before/after a feed, it's going to mix with your breastmilk in Baby's stomach anyway. Try mixing some with breastmilk and check its consistency. If it seems to dissolve fine, then it's probably ok.

[Yellow Sardine]

Getting gaviscon into a breastfed baby is a pain in the a*se. I really really struggled to get it into baby sardine and the small amount that wasn't immediately spat out seemed to make him projectile vomit. I went back to the doctors after a week of gaviscon and asked for ranitidine which is much easier to administer as you only give a tiny amount.

[tomo]

Hello,

I'v been reluctant to post on this thread because my situation does not sound as bad as many of yours and but I'm after some advise.

My baby's 13 weeks today my doctor diagnosed him as having reflux at our 6 week check based on the fact that he vomits a lot and how unsettled he is in the night. Reading your descriptions I'm not so sure...

He can be a very fussy feeder. He pulls off, but then immediately fights to go back again, shaking his head from side to side to try and get latched. He often cries when he comes off. I try winding him if he does fuss, often he has a burp, and most of the time he brings back some milk. His arms flail about and sometimes he arches his back. He always brings back milk at the end of a feed and sometimes cries on doing so. It's getting increasingly more difficult to feed him in public. He feeds best in the night, when he's sleepy, he winds more easily and mostly goes back to sleep no problem. As the night goes on his sleep and feeding get worse, sleeps for a shorter amount of time and is more unsettled.

We've tried gaviscon which made little difference and was such a pain to administer (He's exlusively breastfeed) We've since been on ranititidine which has helped a bit I think. He still vomits a lot after feeding but cries less on doing so. He's never had the awful screaming that some of your describe on here, bar a couple of episodes. His sleeping at night has got worse though. He is waking every 1-2 hours and has become more difficult to settle back again. He thrashes about in his sleep, kicking his legs up trying to pass wind. I'm wondering if this could be related to the reflux or medication or if this is a separate issue? I've always wondered if he does have 'true' reflux or if I just have a pukey baby who's a poor sleeper and has some digestive issues?

Lhell- I mixed gaviscon with some expressed breastmilk and gave it to him from a syringe or spoon. He often just used to spit it back out or it would be vomited immediately back! We also had a tongue tie and thrush and had procedure done by Mr Patel and Katie Fisher at their Croydon practice.

[Strawbs]

Tomo - the ranitidine will only help with the acid production rather than the vomiting unfortunately. My son has had it quite badly and was diagnosed at 6 weeks and it was only suggested at a recent allergist appt he go on to domperidone (he is now 6.5 months) and it has reduced his vomiting 10 fold! He used to projectile so much I couldn't dress until he was in the pram ready to go out.. I detest how medicated Toby has to be but have accepted its the only way to make him comfortable. He is on 3 tablets of omeprazol a day and now domperidone 3 times daily plus gaviscon in al of his feeds (dairy free)..

Anyone fancy a reflux mums and babies meet up? X

[midivydale]

Strawbs, i am in!!

Also to anyone reading please dont feel or question if your situation is bad enough to post. It is not a competition :) but hopefully all our experiences put together can be useful and a source of comfort regardless of severity! That is what i hope anyway.

I have one recommendation that truly has made a difference to me, a babybjorn bouncer. It means that i can eat, shower and very occasionally do some house work. Before i got it i could do nothing at all as i was rocking baby all day. I still spend most of my days carrying him but i can get to eat etc now whch has made a huge difference to my well being.

Strawbs also gave me the best advice when meeting me at my lowest point a few weeks ago. 'just do what you can to get through this hard time'. It is so true, in my case it meant a cleaner, ready made meals and earplugs.

[Belle]

Tomo - your baby sounds like my first son was - he had reflux but wasn't bad at nights, just clearly was upset when he was sick, which was pretty often. in our case, we were v fortunate that time as gaviscon did the trick (and he was bottle fed so it was easy to administer) and really seemed to stop the pain. he was still sick right up until he was about a year old, though less as his milk intake dropped down, but it just didn't bother him once we got the gaviscon going. Second son a different story as is well recorded on this forum!

Completely agree with Midivydale about not worrying whether it sounds 'bad' enough, all these things are tough regardless. And yes totally up for a reflux parents meet! Maybe we should start a separate thread? Would be great to share tips/sympathy and hopefully success stories - at 7 months my baby is such a happy guy, still regularly sick but it totally doesn't bother him and weaning has been relatively straightforward. I'd never have believed it when he was 8 weeks or so, it was very tough back then.

[Lhell]

Thanks so much everyone, not checked this in a few days but was delighted to see a few tips and suggestions for me so thank you!

Things have progressed on in hopefully a good way since I last posted, I read up a lot on reflux in infants and have tried (succeeded sometimes..) giving gaviscon for 48 hours or so. It seems to calm down the vomiting but the pain still seems to be very much present.

However we (myself and my husband) are managing the situation better, I am keeping the feeding very calm, warm (wrapping in a blanket) and quiet. I am trying to feed on waking up so it is often a sleepy feed (which is working really well sometimes), we have elevated everything and are trying to keep her upright for quite a while after feeds. The only position she is really comfortable when just moving round the house is the tiger in the tree position which is quite good for any vomiting as it just splashes on the floor rather than on me!

Re the gaviscon I think she does not trust us so much now and it is getting harder and harder to administer so I might ask for the rantidine from dmc soon (was seen by a helpful doc) and see how we get on with that.

I am also now telling anyone who holds her/burps her etc not to do any jigging or patting on the back which has helped things post feeds. Just basically trying to not jolt her around and keep her calm has helped a lot. Also when a feed is not going well (pulling off/screaming/writhing etc) I am just taking her off, changing the scene etc and trying again when she is happier. That seems to help too.

So we are all a bit happier at home and I am truly grateful for the advice!

[Lisleen]

Our baby had reflux till about 5 months old though maybe not as severe as your baby as Gaviscon seemed, eventually, to work for us. I would definitely recommend trying medication. In addition though we spent the first four months letting baby suck the end of our little fingers (nail side down on her tongue) almost constantly as the sucking and swallowing seemed to help her keep the stomach acid down - it seemed to be the only way she could relax/get to sleep. We also kept her in babygros day and night until she was nearly 5 months as anything with a waistband seemed to aggravate the reflux and the usual thing of elevating her mattress in her Moses basket. Good luck, whatever you try and if breast feeding was making anything harder when you clearly need some rest don't think twice about having given it up.

[midivydale]

Bumping this thread for a friend who needs reflux advice

[astrid83]

Thank you midivydale!

My son has been diagnosed with silent reflux. The weird thing is that he was absolutely fine for the first four weeks. I breastfed him with no issues at all. Then he started getting very upset about 20-30 seconds in to each feed. He would splutter, cough and get very very upset I went to a breastfeeding cafe and they only told me that he wasn't latching on properly and asked me to come back the following week. Things did not improve, I thought that the milk was coming too fast and moved on to express milk and give him in bottles. This was fine for a few weeks, until he started having the same reaction to the bottle. He would start sucking, and after 20 seconds cry and scream and be inconsolable. I was told that it was colic.

Well, last week my friend midivydale saw him feed and instantly recognized the 'gulping' sound when he was feeding and gave me some of her infant gaviscon to try. It worked, so we went to the doctor and got it on prescription and it was amazing for a few days until things started to get difficult again.

He is very difficult to feed, some times I only manage to do it when he is asleep and now he has even started to cry as soon as he see the bottle. I have to rock him to sleep and then feed him which is just exhausting. Night feeds are never a problem though, I guess because he is sleepy and more more relaxed?

We have an appoinment with a consultant at King's next week, but until then is there anything I can do about this bottle aversion that seems to be caused by the reflux?