Stories of reflux or unsettled babies please. She's 7 months now and we're still having really hard time!!

[pevie]

My 7 month old has been unsettled since 3 weeks old - screaming at feeds, vomiting, arching back, not sleeping, etc. Were told on numerous occasions was reflux which it did sound like. So over time have been given various medications - gaviscon (no use), ranitidine (didnt notice much difference) and omeprazole (has been some improvement but still problems). Because the medication didnt make everything 100% better, consultant now says it probably isnt that. So we were sent for various tests including pH test which was a disaster cos she pulled the tube out her nose then went back few days later and same thing happened. So were no further forward. However, my question is, isnt it possible to have reflux which is not just acid in stomach, hence medication may not completely clear it. Mentioned to consultant that she seemed to also have major problems digesting food and passing poos, but he didnt really link this with reflux, although I have heard its often linked. She has improved in some respects, ie. not vomiting, not screaming after feeds, but still cries for a while during day and night until she does poo, orbrings up wind. Could this be a different indicator of reflux? _Please let me know your stories of woe or hope as we feel so baffled by it all and are totally exhausted by unsettled nights. Now has cold so even worse.

think reflux babies can often have allergies as well

My DS had silent reflux but responded well to ranitadine and domperidone and was over the worst by 7 months or so - he is still prone to severe and frequent bouts of hiccups (ie if he has them once, he will get at least 2 - 4 more epsidoes that day)

lots of reflux babies take up to one year to grow out of it, some even longer

are you weaning? I would keep a food diary and see if you can identify any triggers

Weaning did seem to make her more unsettled although we had been told that it might help. 4 to 5 months was our worst period but it still seems to go up and down. Did you have the reflux confirmed by a test Rubyslippers or did dr just work on medical history. What does domperidone do, is it to help the digestion bit?

my dd projectile vomited every day nearly for a year with reflux but is now fine. has she been tested for gluten/cow's milk allergy?

Not tested for allergy, dr. says no real test. I stayed off cows milk for while cos I bf but made no difference.

I don;t know if this will help or make youwant to lock yourself away forever but this is my daughter's story:
dd1 was a windy wingy colicky baby, when she fed (breast) she would sound like a drain as tho' the milk was just pouring down a plughole. She continued like this for what felt like forever, then she developed severe constipation - suppositories, enemas and finally picolax which is the stuff they give you to clear out your bowel prior to bowel surgery. This had no effect whatsoever, by the time she could poo without me literally squeezing it out (and sometimes making her physically sick) she was taking so much picolax it was scary. She also had terrible chest problems and would go down like a sack of spuds if she so much as thought about a cold. her excema was also fairly awful. At 17 months she finally had a referral to a paediatrician and was diagnosed with a dairy allergy. so we switched her totally to soya with limited effect, her bowels seemed to straighten out but her chest was awful. At the age of three she was referred back to paeds having had an acute and bloody scary episode whilst we were on holiday in the Isle of Wight. Her chest Xray was so awful that they double checked we were looking at the right film, she had right middle lobe pneumonia and was given adult doses of antibiotics for two weeks - no fear of constipation then I can tell you! A trip to the Brompton ph test and bronchial washings revealed she had a ph level off the scale and was put on a course of omperazole,low dose erythromycin to encourage stomach emptying and motillium to speed up the passage from stomach to rectum! She is now nearly 6 and is off all her reflux meds but has been started on a drug called montelukast which is used to combat asthma finally she seems to be settled and we only half heartedly due the non dairy thing - ie. no dairy yoghurts and no milk, we are currently using the milk treated with lactase which seems to be working well - costs a bomb tho.
The moral if there is one is to stick to your guns, if you feel there is something wrong with your child scream and shout and jump and down to be heard. We have are own seats at the GPs and I don't care that they don't have to ask my name when I ring up because they recognise my voice! My dd is far more important.
Sorry to rant, I'm a nurse and it has still taken an age to get things sorted, you'd think I would know better but I didn't.
Good luck and keep going til you are satisfied you have got to the bottom of your dd's problems

my son is 3 1/2 and has silent reflux, he had reflux as a baby (very projectile vomtiing) then at 14 months was diagnosed with silent reflux after a ph study was done, he was put on gaviscon, domperidone and ranatdine, then ranatdine was taken away and lansprzaole was added, now hes on domperidone, lansprazole and erthmyrcin.

hes also on a dairy and soya free diet. they can do a skin allergy test or a blood test but the best thing withdrawing it from the diet to get a better view, u say u cut out milk, did u cut out cheese, choclate, butter etc my son is on a strict no dairy and soya diet so has nothing which contain these.

i would try the milk free diet but it can take 6-8 weeks for it to be completly out eh body so u may have to wait 6-8 to see a result if any.

hth abit

Stories are scary but helpful. I think cos we shouted so much we got through to consultant quite quickly and tried meds but have no idea why consultant so reluctant to give something for stomach emptying which i feel is more of a problem now. When I mentioned this to him, he said that he works on facts not theories. He is such an arse that it really frustrates me. My daughter quite often only poos when I massage her with oil and she finally gets something out. If I dont do this and she hasnt pooed by herself our night is hell so I know that this is still a significant problem A book called 'Colic Solved' which discusses reflux has helped give lots of info.on this but it seems that the more I ask, the more the consultant gets pissed off. Now we have had set back with pH test but not sure if its worth putting her through it again.

i would ask to be referred to a gastroentrlogist my son is under one at GOSH for his reflux and they r alot better than a normal paed.

domperidone emptys the stomach and also erthmyrcin which is an anti biotic but my son is on a low dose 0.25ml 3 times a day.

pevie, i am so sorry you are going through this. i know from firsthand experience the toll it can take...
i am in no way medically qualified to advise but your dd's symptoms do sound very similar to what we went through with my ds (diagnosed with silent reflux at about 4 months)
my ds (now 21 months) was a similarly extremely unsettled baby; he would literally scream his little head off whenever he wasn't attached to my breast from about 2 weeks old. everything was about wind/digestion/doing a poo. he never slept (only for very brief spells while completely upright on dh or myself, angling the cot was never enough). to cut a very long story short (and one so sleep deprived and stress ridden it nearly cost us a marriage) we did the rounds of gp's, paediatricians, paediatric gastroenterologists and dieticians who had him on all sorts of meds/hypo milks (having forced me to stop bf at 9months, fully against my wishes/instincts which led to him being briefly hospitalised due to weight loss etc) and i truly believe that, certainy in our case, none of it particularly helped. the only thing that really worked was time. thankfully my ds grew out of it literally over a period of a few weeks, just before his first birthday and around the time he started walking. i had kept food diaries, none of which ever seemed to make any sense and kept him off cows milk, soya and wheat (apparently the biggest culprits) but he is now thriving and very happy and able to eat everything...when his toddler self so wishes.

he is, however, still firmly of the view that sleep is for wimps...

May i hi-jack slightly a minute?

Thanks

Do alot of babies with silent reflux have poor sleep patterns then? And in what way?

DD3 seems to only nap for an hour or less at a time in the day, has difficulty sleeping in pushchair, wakes early in the morning , but doesn't demand food or attention (we only know she's awake cos we can hear her moving around or talking to herself!). She (according to lots of people on a thread quite a while back) is likely to have silent reflux.

Your dr is wrong about the allergy testing. My DS was exactly the same as your LO screaming and arching back at feeds.

I had tried cutting out dairy but nothing improved. We had hi tested and he was allergic to eggs as well and once i cut both out things improved.

Hi,

My DS has reflux and some of your LO's reflux symptoms sound very like his. It's been very difficult a lot of the time. He is 6 months old and just started on solids. He seems to have difficulty pooing now not sure whether this is because things are more solid on the way out!

Anyway Zantac has helped but only when I got his dose increased- the paed consultant had prescribed the dose for a 1kg infant not a 6.5 kg one. Initially I was going to try something else but stuck with a reasonable dose of the Zantac with good results.

Not that I am suggesting this might be the case with your LO but worth checking esp as as they gain weight dose needs changing.

Many babies with reflux dont get 100% better with meds but suppose at least they are perhaps looking into other things incase?.

It seems like you are losing faith with the consultant and dont blame you. Did they try Domperidone for gastric emptying?
It may be worth asking to see a specialist paediatric gastroenterologist.

I am trying dairy free as also BF although there has been some improvement not sure whether meds/diet! May try a cheese fest at Christmas and guage results!

Try for supportthis link

and to check med doses this link have to register but most hospitals use this to work out doses

My dd had exactly same symptoms as yours. It was diagnosed (in the usa) as silent reflux at 5 months. I had been exclusively bfing her, but paed in usa recommended supplementing with a bottle a day of special stay down formula. It has rice starch instead of corn starch and is available in the uk (if you ask your gp for prescription you can get it for free). It's called Enfamil AR. It made a HUGE difference, but did not completely solve everything. Solids definitely helped, and she did get better as she got older. We also put her to sleep on her tummy and that helped a lot too. She had terrible eczema which she eventually outgrew (around 3 or 4). She is now 5 and doesn't seem to have any allergies or any digestive problems, but still has poor sleep habits (night terrors and very very restless sleep). Dd was my second and ds had absolutely none of the problems that dd had, so I at least wasn't blaming myself for having done something wrong.
It does get better.
Other things that worked for us included putting dd on her back when she clearly needed to poo and pushing her knees up to her stomach. Putting her to sleep on her tummy and not getting too upset over poor sleep habits. She truly cannot help it. Also when she does get potty trained...don't make a big deal over painstakingly long pooing sessions...it goes with the territory and you don't want to make them agitated about it.

You say that massaging her tummy helps her to poo. Have you tried doing this every day more than once? My ds2 had reflux but he grew out of it by 8 months. I never put him on any meds, I just kept a routine of massaging him as often as I could. You can't massage after shes just eaten obviously but after an hour you could and then this will help her digest and get things moving iykwim? I believe it worked - so much so that I now teach baby massage!

Sorry I didnt get back on to reply more quickly but DD has terrible cold and so evenings and days have been hell as well as nights!!! Thanks so much for support though as means a lot!!! It is really interesting the link between allergies and reflux. I did try cutting out most dairy products and not just milk for about 3 weeks I think, although I maybe wasnt as strict about reading labels as I could have been. We havent tried any drug for gastric emptying, paediatrician looked at me like I was some kind of munchausen by proxy mum when I asked if it was appropriate to give any medicine for stomach emptying as she was already on omeprazole. Zonedout, I've heard your story before and sometimes wonder if only time will do it. I think I have kind of written off the first year a bit. However, before cold we had got a bit better and she was only waking twice, although from around 4 to 5 o'clock sometimes not settling unless we kept her on us. I can just about cope with that, what destroys me is when this starts the minute we go to bed. I think she must be improving, she is nearly 8 months, but we're still not out of the woods. Obviously things like colds destroy what tiny sleep pattern they have. It does destroy family life though as I have older daughter and really feel for her as I'm sure she feels our stress!!!!

I know what its like, my DS is 7 months and has many of the same problems as you, and the worst thing has to be the sleepless nights! I am so glad I am not the only one with a baby this ago who still doesn't sleep through! My DS has just been referred to the paediatrician for reflux so we have no treatment other than gaviscon at the moment.
Hang in there.xxx

must be doubly tough with another dd too...
grrr, it makes me so angry when paeds have too much arrogance to listen to mums. in my epxperience, my instinct was pretty much always right. and pretty much never what the paeds advised. but they were seldom if ever open to my thoughts. our first year with ds would have been a lot smoother if they had. in my experience our main (private)gastro paed, as charming as he was, was so busy seeing case after case of reflux etc he had blinkers on... and yes, reflux is always made so much worse by other bugs. and yes, i know too well the torture of months on end of being woken just on dropping of to an exhausted sleep...as for exclusion diets, our dietician always said that even the tiniest amount of cows milk protein (or whatever the offending food is) can get through and cause problems in a sensitive individual. and cows milk can be hidden in all sorts of food and in all sorts of guises (my memory is severely hazy but i remember whey being one of them) could possibly be worh a trip to a dietician if you feel there may be some intolerances? i wish her cold better. so miserable.

zonedout, what was your instinct about your LO? Was it reflux in end or did he have allergies too? I gave her some dairy in her food yesterday, ie. a little cheese and milk in a recipe, and we had the most severe stomach pain she'd had in a while. However, we have had nights with her when she has seemed fine, even though I'm still on dairy now, so dont think she could be that sensitive.

pevie, yes was definitely reflux but still not completely convinced about allergies as the food diary i kept never seemed to make much sense. having said that he always semed particularly bad after i had eaten fish (when bf) and possibly he was intolerant/allergic to cows milk but he certainly isn't now. the dietician (who worked alongside the gatsro paed) had ds on the most restrictive exclusion diet which i felt all along was barking up the wrong tree. and led to ds suffering nutritionally. my main instinct was that bf was in no way harming him and that he would never take a bottle/cup. my paed was adamant that my breast milk was effectively poisoning him and loved to tell me that after 6 months there is no benefit to bf a baby . he also said ds would take a bottle once i dried up my bm. dh supported me for a while then caved and went with the 'specialist' so i was under so much pressure to stop (all this whilst surviving on a couple of hours of broken sleep a night). so i did, very abruptly and against evry bit of instinct i had (and with much distress to ds and myself) and things just got worse. not least because, as i suspected, ds then did not touch a drop of milk from then (9 months)until about 15 months when he started having the odd sip of cows milk. and he wasn't a great eater either. stopping bf was certainly not the cure the paed had claimed it would be. ds had quite a traumatic birth and tbh, deep down i think it was related to our very tough first year too. i also wonder whether some babies' guts/digestive systems just take a little longer to mature. not sure if i have made much sense/explained myself terribly well and seem to have waffled all over the place...
are you keeping a food diary at all? could it be something other than dairy, even something quite obscure? it is so frustrating, feeling so in the dark as to what the problem is.

Thanks zonedout. TBH, its just good to hear from someone who has been through it as we dont know a soul who has experienced this and feel very alone!!!! Thankfully, noone has suggested i stop bf, although occasionally I feel like i'd like to, from what i can gather it is best thing for a reflux baby. I was lucky to have read that book about reflux quite early on, so I kind of know what tips can help, but still hasn't sorted it, so wonder if theres bits we're missing. Eg. the stomach emptying bit seems to be a major issue. Today, she cried all day, until she pooed and then cheered up. Later was still upset, so I massaged her and she did two more quite painful poos, again seemed much happier. So maybe its mostly constipation now, not sure. We were given lactulose to help this, but this resulted in several hellish nights due to wind, which is her other main problem. Other drawback this week is that shes started screaming when I put her into pram to sleep, which is one place she was most likely to sleep. I feel totally gutted about this, as she is now beside herself with tiredness. Called cry-sis last night as felt so desperate but just had a wifie tell me I had to go 'checking' technique to get her to sleep. We did do a bit of that before but because we're never sure of her discomfort, always picked her up first to check before putting her down. Wifie on phone says it will never work that way. But not sure I can go on holding her on my chest for best part of the night. Also confusing cos had got so much better and now rubbish again. Think maybe cos of giving her medicine for cold!!!!

Hi Pevie,

Did you try that support site link I sent previously. There are lots of people on it who all have babies/children with reflux.

My LO has had fairly unsettled nights recently and I find it difficult to deal with getting up 10-20 times a night then eventually give in and take him into bed with us propped up (v safely must add). however am lucky he is not as severe as some have heard of the support site who cry uncomtrolably all the time. Unfortunately he also wont sleep in the daytime except in carseat/upright in buggy or in our arms which is restricting.

I think he is getting constipated due to starting weaning so have given him 2-3, 3-4oz bottles of apple juice/ water which has helped. I intend diluting down the apple juice eventually but he wont take water. Things are much softer on the way out now!

Have found gently putting his knees up onto his chest seems to help poo out.

Seems a shame that your paed wont tey domperidone- mine gave me that and told me it works well with the omeprazole! Havent tried it yet- long story but was not on adequate dose of Zantac.

Sounds like you are having a tough time of it I do hope it improves soon.

that sort of extended sleep deprivation/unsettled baby thing is a very lonely place to be... in fact, i really do think that the only thing that helped me to get through those awful times with sanity intact (well, semi intact) was my one friend who had an equally diabolical sleeper...i contacted cry-sis a couple of times too but imo there really is no better help than another mother going through/who has gone through similar... my ds never slept in his pram, i am not exaggerating when i say he only ever slept upright on me or dh (daytime naps included)... i think what really helped me was changing my attitude and expectations (very very difficult and took time...in fact an ongoing battle)... as soon as i stopped fighting the seemingly loosing battle for sleep and just began to accept that, at that moment, this is how it was and that i knew in my heart i was absolutely not prepared to do any kind of cc/sleep training with a baby who seemed to often have pain (and tbh it was just not for me), things looked a little less bleak. god i am off on one again... i just so feel for you...it WILL get better... we still have terrible nights (you may not want to hear this but ds still ends up in bed wih us a lot) but things will get better, you WILL start to get sleep again, your dd will get better and you will also get used to surviving/being ok on less sleep... oh and by the way, my ds can't tolrate any medised/calpol type medications... i am guessing it is the additives but they make him completely hyper... i swear by paracetamol suppositories (many english people feel queesy at the thought but they are the norm on the continent) please keep me posted x