So I'm not alone!

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Permalink Reply by Donna Lucas on May 30, 2008 at 12:53

Thank you for your message. I have been using Cow & Gate Instant Carobel now for 3 weeks and it is like having a different baby. Maddie is thriving now, is lasting four hours between feeds and has put on 17oz in 2 weeks which is unbelievable. She is so much happier as well and sleeps for longer during the day. This is a thickener and unlike Gaviscon it doesn't make her constipated. I am so glad I kept researching until I found a solution. Maddie is still sick but it is only little bits and because it is so thick it is easier to manage. I now only go through 1 muslin a day!!!!!!!!!!!!!!!!!! I have to use 6 month teat as it is so thick but now it is just part of our routine. You can get your phamacist to order it in for you as you cannot buy it in the shops. Anyway, good luck with it all and perhaps you should give it a try.

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Permalink Reply by Ginny S on May 28, 2008 at 22:06

Hi Donna,

I feel very up and down with it all too, it's bloomin hard work with reflux and yes, no one seems to understand. I went to see a private paed in London for a second opinion today. What a waste of time! He just started going on about how stressed I seemed and that was probably affecting Stella's feeding. Hmmmm - has he ever tried to feed a baby who won't take a bottle? He gave me a sedative to help her sleep (will not be using!). Anyway, Stella is nearly 7 months, it's been a dreadful struggle and still is. Stella has tried the hospital milks like Pepti Junior, but for some reason they made her vomit all the time. She is now back on Aptamil and is on the top dose of Losec (omprezole) 20mg, this is presently helping her pain and she is accepting more feeds. I do think Domperidone helps, but I keep it to a minimum. I give it three times a day, 1.5 mg each time. She used to possett excessively and now she doesn't at all. She also used to cry all the time, but now only cries in her sleep and during feeds. Goodness knows what makes her cry in her sleep.

Reading this site and talking to someone else I know with a reflux baby - Endamil (is that how you spell it?) is meant to be a good stay down milk. I am going to try that. I have given up Gaviscon at the moment as Stella was such a poor sucker that she would barely take an ounce if I used that as well. I have found it is easier to feed stella with her lying on her change mat with a pillow propping her up a bit, sort of 45 degrees, from her torso upwards. This means you can sort of sit above them and distract them with a dummy or rattle or something with your other hand (stella likes it if I tap the bottle with something). I can't hold her when I feed her as she wriggles and arches her back. I found too upright wasn't a good feeding position weirdly enough, although I do hold her very upright for a good half an hour after each feed. I also go 2 ounces or less at a time and then do a good burp. If she throws up she will often take the feed again straight away.

By the way apparently some reflux babies do want to feed all the time as it soothes them, but it then creates more pain as it generates more acid. If you are feeding her that much every three hours you are doing brilliantly!

I have felt very isolated too and don't take Stella out as it is too much hard work and also it unsettles her even more, quite apart from all the extra clothes and bottles you have to lug around, just in case she is sick.

I am in the country so cannot meet up - I hope some of my info is helpful. I have a toddler and keep feeling very guilty that I'm wishing Stella would be one and walking so this bit was over. You are not alone!

Good luck
Ginnyx

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Permalink Reply by Jessica Cestaro on May 30, 2008 at 21:18

I know exactly how you feel. I have a 4 week old baby who has been on Infant Gaviscon for the past two weeks. This has worked really well for him until this week, where his symptoms have come back and has started being sick more often after feeds. I hate seeing him in so much pain and am not sure what to do now, apart for ask for a referral to a paed. I too live in the Bromley area and would like to meet up too as I know nobody with a reflux baby.

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Permalink Reply by Kate on June 2, 2008 at 13:56

I am so glad i found this site! my daughter Rhoslyn (Rhosie) is 8 weeks old and has been continually sick from the moment she was born by emergency caesarean, the midwives told me that the constant crying was normal and she was probably being sick due to the amount of meconium she had swallowed due to the distress.. but after being exhausted due to no sleep (and to the amount of blood i'd lost) constant feeding (she is bottle fed due to my ME and my medication) and having to struggle myself to change her and the cot bedding 6 times in one night i thought there was something drastically wrong, i came home and my husband finally realised what id complained about as she had been quite content whenever he visited but she omitted a high pitched scream that continued for some hours and was ear piercing in volume .. so we took her to the gp out of hours service who said she had severe colic and was lactose intolerant (she was 2 weeks old by this point) so we spoke to the hv on the monday who agreed with the lactose intolerance diagnosis and the colic and changed her milk from SMA Gold to SMA Lactose Free which funnily enough helped for a while, we perservered with infacol but she spat it out and screamed even louder, she chewed everything wanted to be fed all the time, which meant she was sick even more,
she arched her back and rolled up into tight little balls fists clenched when screaming and a shade of
scarlet i'd never seen! thrasing her fists around, its horrible to watch!
but by the time she was 4 weeks old the vomiting was back worse than before and thev screaming just wouldnt stop we tried everything to help her but she wouldnt sleep and therefore i statred to get more ill with my ME, eventually we couldnt take it anymore so back to the out of hours we went, who sent us to the royal united hospital in Bath, they kept her in overnight for observation and told us she had reflux and gave us a prescription for Gaviscon, which at first helped but we are now back in the same boat as before..but this time she is not putting on weight properly since she was 2 weeks old (and regained her birth weight of 7lb 13 oz) she has put on 1lband dropped off the 25th centile line in her red book. I keep asking the hv to do something and the gp but they keep saying she looks\ perfectly healthy, the annoying thing is she does look healthy when we get her there no crying or anything, they dont see her red in the face with tears streaming coughing and vomiting so hard it flies 3ft. Im at the end of my tether, im worrying myself sick because they keep saying feed her little and often and we'll monitor her weight and see how it goes.. i cant put up with it any longer does anyone have some advice\ on how to get through to the gp/hv? my health is starting to suffer and if im ill i wont be able to look after her ( my Me means i have to use a wheelchair or not get out of bed because i cant use my arms or legs properly when really bad attack happens) but the gp/hv doesnt seem to care that if im ill theres no-one to help my hubbie with baby and then he has to look after
me!!! We are currently feeding her every two hours (and throught the night) so no-one get any rest! sorry to rant but its driving me nuts, people look at me when im out feeding her and people in my family dont want to pick her up in case she pukes on them its really hard and heartbreaking that nobody wants to cuddle her because when shes calm and serene ( which is rare) she is a very cuddley little baby girl! She is still doing all of this plus her breathing has got very heavy and she makes awfully deep swallow noises when feeding.. i just dont know what to do my hv just says im worrying for no reason and my friends with babies think im exaggerating

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Permalink Reply by rachael on June 2, 2008 at 18:14

Poor you. We've all been there, but without the added strain of ME. I'm sure your condition would not have been a problem if you'd had a 'normal' baby. It's hard to think straight when you're soooo tired, but please go the GP and insist upon an urgent referral to a paediatrician, or even better, take her straight to A&E, who'll probably send you straight up to the children's ward. Don't feel bad about doing that- loads of mums on here have done that, been prescribed medication and started to have a slightly easier life.
Nobody really wants to cuddle my baby much either. My mum was going to have him when I go back to work, but of course, a baby like Aidan is too much to expect a relative to look after, so I've had to book him into a nursery. I just make sure I give him lots of cuddles to make up for everyone else- I no longer have any decent clothes though!
It definately does get easier -try to keep positive.
Rachael

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Permalink Reply by Donna Lucas on June 3, 2008 at 13:09

Oh, you poor thing. Thankfully since Maddie has been on Cow & Gate Instant Carobel the reflux seems to have calmed down. It also makes her pass wind quite a lot so it doesn't get trapped in her tummy. I am surprised that your HV/GP won't do anything to help you. My HV was really concerned when Maddie only put on 1oz in a week. We tried Gaviscon but it just made Maddie constipated and she was still quite sick. I am weaning Maddie extra early (at 3 months) mainly because I really just want her off of milk as soon as possible and because Maddie is really greedy and loves her food. I think you are going to have to go to your GP and insist that he refers you to a paed. Don't take no for an answer. If he doesn't then perhaps it may be worthwhile finding out who the paed is and writing to them directly and see if you get a response. They might say to go and see them and you can at least send it to your doctor. I have stopped seeing the HV's now as I don't think they are very helpful. Maddie put on 4oz in one week once which was good for her and the HV just said it was bad and made me feel really worried. Since Maddie has been on the Cow & Gate Instant Carobel she has gained nearly 20oz and sleeps through the night from her 10:30 feed. Maddie is 12 weeks old though and she only started doing this a couple of weeks ago. I am really surprised that your GP will not refer you if she isn't putting on weight. Maybe you should get a second opinion. I really feel for you and I hope that you find a solution. I used to get really frustrated when people wouldn't take me seriously and in the end I found my own solution. Good luck with it all and although it doesn't feel like it now it will get better.

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Permalink Reply by Kate on July 5, 2008 at 22:22

Hi all I thought id better give an update on Rosie and her reflux.... well she is getting better!! she has now turned 3 months and has started moving around more and now that she can support her head we have bought her a bumbo seat! and put her in this after she has been fed and this is helping weve seen the paed and he gave us some other meds which have worked wonderfully and she is so much happier and now sleeps 12 hours at night which again is wonderful!!!!

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Permalink Reply by Rebecca on July 6, 2008 at 7:28

Hi Kate, so pleased your little girl is doing better - that's wonderful news!

Rebecca

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