LittleRefluxers

My daughter of 12 weeks has been unsettled, irritable and crying since the day she was born. Our health visitor says she is one of the most difficult babies she has seen. She is my first child, so I have little to compare her to but she wont sit in a bouncy chair, under her mobile or on a play mat for more then 10 minutes without screaming, squirming and kicking. She is very different to the other babies I have seen from my anti natal group who seem so contented. I have to carry her around to stop her screaming and basically provide constant distractions. This happens all the time not just after feeds although she is at her best when she has just woken up. Silent reflux was suspected when I took her to see a paed the first time (at 3 weeks old) and we were given ranitidine and gaviscon. It made little or no difference to begin with. We put her on SMA LF, which made some difference as she was suffering with explosive poo on normal milk but didn’t really help the crying. By Christmas I could see some improvement but we still had mostly awful days. We then took her to a private paed who upped her doses and then (at 10 weeks old) put her on omeprozole and Neocate milk. If anything I think she is worse now. We are due to go back to him next Saturday. She has now started vomiting, which she wasn’t doing before and she seems even more unsettled. She hiccupped a few times a day in utero and still does that now. It’s the crying that disturbs me though and I wonder if it could be anything other than Reflux? Does anyone else have experience if such constant irritability in a reflux baby – Is this normal? Im wondering if she should have a scan to see what is going on in there... Does anyone have experience of other things I should do or try that may help? Im considering taking her off all drugs to see how she is. People keep telling me that she will grow out of it, but reading threads on this site it seems this could take years! Im concerned that screaming for years will effect her long term both physically and mentally (and me too!!). Can anyone tell me how I can magic this away……..

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Hi there Lauren

Sorry to hear that you and your baby are suffering. It does take wee while to find the right medicine combination and milk combination that suits your wee one. Until then maybe you could try cranial osteopathy with someone who specialises in babies. It is not a cure for the reflux, but I found that it helped Anna to be a lot calmer and more settled and to sleep better in the early days, and the effect of it lasted about a month in Anna, there was a definite improvement. Perhaps someone in your area could reccommend one. My Anna screamed for 6 months and is now the happiest funniest wee soul at 18 months, so hang in there.

Gillian
Hi Lauren,

Your story sounds just like mine! My Charlie is now 17 weeks and he is still screaming most of the time. He needs constant attention and distraction which as your'll probably agree is totally exhausting. Charlie is under the consultant paed at the hosp and has been admitted a couple of times to try and get to the bottom of things. He apparently has reflux for which he takes gaviscon, ranitidine and donperidone, has a milk allergy for which he is also on Neocate and now has oral aversion which is a behaviour problem which he has developed due to him associating feeding with pain so every time Charlie wants feeding its a big battle to get him to have it! He is putting on weight because I do get the milk down him but i have to do all sorts to get it in him.

I stopped the ranitidine and tried the omeprazole but he kept being sick so i stopped it. You could maybe see if the ranitidine might be a better combination with the neocate. I have to admit though that im wondering whether there is anything else wrong with Charlie too, were going to see a speech and language therapist who looks and feeding and swallowing to see if there is anything else going on.

Hope this helps, its helped me just to know that its not just me with an unsettled baby! Everybody I know has content babies!
Im sorry to hear that your going through this too. Yes its completely exhausing and soul destroying. I just keep wishing for a magic solution, but i just dont think there is one. I have given up meeting up with other mums and babies as it highlights how different Bella is! We are seeing the paed again on Saturday so i think i will suggest that we go back onto Ranitidene. Does Charlie settle when the hairdryer is on? When Bella didnt want to feed we found that having the hairdryer on helped - Mad isnt it! I live in the Surrey area are you anywhere closeby?
Hi
I know this is a wee bit late but have just read your thread. When Anna was in the thro's of reflux and was very irritable and screaming all day, I made a point of going out to see people and to join in groups as a distraction and for a bit of sanity. I found the mother and toddler group I went to particularly useful actually a life saver if I am honest as other Mums would take Anna for a bit to give me a break and it was also distraction for her. Find a group where there are mothers with new and older kids who understand a bit more about motherhood and how hard it is, never mind having a reflux baby. You need as much support as possible, and all babies are different, and it would allow you to see how much Bella can do over and above others, which gives you a little boost. Please don't isolate yourself.

Gillian
Hi Lauren,

I was just reading your thread and thinking how much it sounds like my little girl! She is on gavisgon, domperidon, omperazole and calpole for the pain. She is also on the neocate milk. The pead says she has reflux, and yes she is constantly irritable and crying! I just wondered if you have had any luck in settling your girl since you posted the first message, am hoping you might give me the magic cure!
lisa
Hi there,

Its really interesting. After I wrote this we did take her back to the paed and he agreed that we should take her off all the drugs. We did and we have never turned back. She is still on Neocate milk and I know that helps because 2 weeks ago i tried to wean her off it but she went straight back to the screaming. The omeprazole really did not agree with her so i knew that we had to get her off that but seriously the moment we stopped all the drugs she seemed to chill out. She still vomits a bit - but it does not upset her. How old is your little girl. Would you consider stopping everything to see if it helped?
Hi

She is 10 weeks, we did try stopping everything! when we got told she had reflux at 4 weeks and given the medicine we didn't notice any imrovement after a week so we stopped it after going back to hospital and they said oh perhaps it's colic. She got worse and worse so we went private at 8 weeks and the pead said def silent reflux and to go back on the meds but we'd need to give it at least 2 weeks to work, their has been little improvement thats why we are trying the neocate, only been on that 2 days though. Next thing are the medical tests but don't really want to start that. Not really sure what to do now, prob going to have to accept it's gonna be a waiting game.
I know how you feel - Its just horendous. The neocate made a big difference for us, it took about a week to really kick in. That was the only thing that worked. I couldnt ever put her down because she just screamed and screamed and kind of twitched in pain. I still have nightmares about it - I really dont think anyone can ever understand the hell it really is. Noone believed that she really did cry all the time! I know this wont help because everyone did say this to me but it will get better. My paed at the Portland Dr Eltumi said worst case it will really improve by 6 months. Probably not what you want to hear but I bet you in another 6 weeks you will be in a different place with her.
I thought domperidon was used to stop vomiting? If its silent reflux maybe that isnt necessary. I know i sound like an anti drugs hippy type - and i couldnt be less like that but if the neocate does make a difference try weaning her off the drugs - especially if they arent making a difference there is no point. I had a really traumatic birth with Bella and im sure she was traumatised too. She was in intensive care for the first 10 days with a suspected infection but it turned out to be a 'slow' gut. Was your birth bad? I think that made a difference to her mood. I wish i had some magic cures as i was also looking for that. Just try and be strong and get through it somehow. I wouldnt accept any help from my family which was a bit silly really. I tried cranial osteopathy which did help a little bit and i found that she would stop crying in the bath - so she had lots of them a day! The hairdryer would stop her crying too??!! I also found that a strict routine helped her be a bit more settled and feeding her in a few 'courses' over the hour. Its shit. I feel for you. But you will get there.
Thanks for your reply and thoughts,

Will definately think about reducing the medication as soon as possible, just scared to stop at the moment because it got really bad last time, I know what you mean about putting her down thats the same here, it is an absolute nightmare, I do have help from my family otherwise i think i might have gone mad!

I have also tried cranial osteopathy it helped for about two hours and at £36 was an expensive option!

My birth was ok although she was in the back to back position and came down facing the wrong way but it was quite quick and normal.

I'm hoping the milk will work otherwise it will be time.

thanks for the friendly words
lisa
Bella was back to back also. I know what you mean about being scared, we were the same. In the end it was so bad we just thought sod it it cant get any worse. Best of luck with it.
Ladies

I just had to reply to your threads just to let you know things do get better. My middle daughter, Ava, who is 3 (in 2 wks) was exactly as you describe and would not let me put her down for longer than 5 mins at a time. I actually remember being in hospital and the midwife giving me her to feed in bed and saying she would put her back in her crib when she was finished and I woke up the next morning with her still attached to me. I had a very traumatic birth which ended in an emergency section and I do think that this can effect baby. I tried absoultely everything including cranial osteopathy. letting her cry down, co sleeping you name it we tried it. As it turns out I've had Poppy and she's been diagnosed with reflux and they think that was what Ava had. Ava can still be difficult but on the most is a lovely little girl. My advice would be to accept help from family and friends because it's very important that you get time for yourself even if it's having a relaxing bath. Have you tried the swingy chair with the different tunes Ava liked that and I think if it had not been for that I would have went silently (well maybe not too silently) mad. It can be really disheartening to have a baby who cries constantly I remember being at my lowest and thinking 'why me and when will the crying stop'. I think knowing what I know now I look back and think my poor beautiful girl more than likely had silent reflux and was never treated for it and suffered in silence (well suffered very loudly). Keep your chins up ladies take loads of pictures (to prove that yes they really did cry that much) and talk about how you feel and remember it's not your fault. Hope this has helped even a little. Karen x

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