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22/06/2014 at 21:02
I've been lurking for a few months and finally decided to post tonight.
My little girl is six months old (she was born four weeks early). From the start she was difficult to feed. I tried to breast feed but despite getting lots of support she would not latch so was formula fed. She would only drink a small amount but this has got worse as she has got older. She is generally a very happy baby but as soon as the bottle goes near her mouth she screams. It can take over an hour to feed her.The only way I can get her to feed is to walk around with her or bounce on a gym ball. It's exhausting! She is often sick after a feed sometimes the whole bottle.
She was originally diagnosed with reflux and given gaviscon and omeperzole but this hasn't made much difference. We have also seen an ENT doctor who said their is nothing wrong with her mouth. We have recently seen a gastroenterologist who said it could be an intolerance to cows milk protein and prescribed aptimal pepti 1. Her sickness actually seems worse on this milk and has made no difference to her distress.
Has anyone got any experience or advice? It's so upsetting seeing her so distressed and I'm really worried she doesn't have enough food. Thanks for taking the time to read my epic first post!
23/06/2014 at 06:53
Hi WF, so sorry to hear you're having a hard time of it. My lg is 9 months and has reflux and cmpi as well as other food intolerances so I know what I nightmare feeding can be! Aptamil peptide actually still have cows milk in it - it's just highly broken down. If your little one is still reacting to this you may need an AA formula like nutramigen or neocate that contains no cows milk. Docs are always reluctant to prescribe this as it costs of £50 a tub! You may have to be a bit pushy to get it (I basically had to demand a paed referral) It may be your little ones reflux is a symptom of the cmpi or it may be you have to 2 consecutively (like us) but until you have controlled or ruled out cmpi you can't really tell. It may be you need different meds. Most people (us included) have found omep to be a wonder drug but I know I few where it hasn't helped and in fact made them worse. It may be you need a better anti sickness than gaviscon such as domperidone (although not sure if that's still being prescribed?!) as omperozole only neutralises the acid but doesn't stop the sickness. Hope that helps a little and good luck! If you have any more questions I will try and help if I can or I know there are other ladies on here (missdeedee and littlewelshone spring to mind straight away) who also have cmpi babies and may be able to offer more advice xx
23/06/2014 at 07:33
Also just to add, the meds are all dosed based on baby's weight and docs will always start at the lowest dose for their weight and work up so could even be that dosages need checking x
23/06/2014 at 08:09
Thank you so much for your reply. It's reassuring that we're not the only ones going through it and that there are some other options out there. My husband and I were beginning to despair. How long would you expect the new milk to work if it was going to? We tried it for five days but stopped because her sickness seemed to be getting worse but started it again this weekend after a one week break because her distress when feeding was getting really bad.
We were originally prescribed domperidone when she was diagnosed with reflux but she became really unsettled. (Apart from during feeding she is a very chilled out, happy baby). The sad thing is we were told she didn't have cmpi at eight weeks because she didn't show any other symptoms so we have battled on with everyone saying it will be much better when she is six months old and on solids. We have recently increased omperazole from 2.5mg to 5mg but I could double the dose of her gaviscon so will try doing that.
How have you found weaning your little one? We are currently waiting for a referral to a dietitian.
Thank you again MamaD.
23/06/2014 at 11:26
For us it was about 10 days, I think it's takes about 2 weeks for the old milk to work it's way out the system. Weaning for us has been a bit of a nightmare as it has highlighted other intolerances and also she had a bit of a food aversion so wouldn't eat anything more than a smooth purée until she was almost 9 months! But that's a whole other story! Lol! x
23/06/2014 at 15:13
Thanks MamaD. Sorry to hear weaning has been a nightmare. Hope your little one is starting to enjoy food more now.
I'm going to give the Aptimal Pepti 1 a couple of weeks as I haven't given it long enough. It just feels like we have taken several steps back and she is getting so upset that most feeds we both end up in tears.
23/06/2014 at 15:14
No idea why all my messages are posting twice!
23/06/2014 at 22:13
Another with a child with cmpi, who at 20 months is finally showing signs of outgrowing it! I agree with everything MammaD says. You need to get a referall as aptimal will not have been broken down enough. S has been on nutramigen since 3 months and is still drinking it now, but i think the prescription will be stopped soon. Weaning is easier rhan expected. There are now plenty of alternative available and many baby foods don't contain milk. You'll just become very good at reading labels and cooking from scratch. Eating out is more difficult, as there is milk hidden in more things than places realise and there can be a lack of understanding as a whole. We used to either take a snack box and/or a suitable pouch of Ella's kitchen. Good luck. It can be daunting to start with, but soon just becomes a way of life.
23/06/2014 at 23:22
I'm just heading to bed so will post properly in the morning but sounds like our LO are around the same age, O is 6.5months (and was 5weeks early!). He has CMPI too and we started off on nutramigen lipel (so still cows milk based) and had to move to the amino acid formula.
I'm like a leach bleeding MamaD and LWO for info so any advice I have is probably there's!
As I said I'll post O's situ tomorrow. Nice to have a new MDer :)
24/06/2014 at 10:08
Hi Little Welsh One and missdeedee
Thanks for sharing your experiences with me. It makes me feel like I'm not alone. I've just seen your footer missdeedee - my little one was born the day before yours.
What were your little one's symptoms of cmpi? Mine is the sickness and distress during feeding. On her old milk she could go days without being sick and then have a day of being sick after every bottle. Since swapping she is being sick loads.
I'm torn between phoning the gastroentrologist now and saying how bad things are or giving it a couple of weeks so I can say I've given it a fair chance. I'm just so worried about her weight as she has always been so small.
Thanks for listening ladies.
24/06/2014 at 12:39
Honestly, I knew within about 3/4 days whether milks were working or not (we had to try comfort/antireflux/lactose free) as there was just no improvement at all and at times, she was even worse. My best advice would be trust your mummy instinct! (And you can always lie and say you e tried it for longer of the gastro asks but of course I didn't say that!!!!) x
24/06/2014 at 15:37
Thanks MamaD. You are right. I've left a message for the gastro doctor. I thought that by the time they get back to me and get something sorted it would be at least a few days. Can you remember how much your little one drank at six months? Today she has had 14 ounces over three bottles which is ok for her but seems very little compared to other babies her age.
24/06/2014 at 16:37
Hi WB, we were in a similar position. I struggled to BF and O had dropped to 5lb 2oz in 2 days despite them telling me he seemed to be feeding fine I knew he wasn't. I gave him formula in hospital and we started on aptimal. He was doing fine and the first couple of weeks was very sleepy (I'm sure your little girl was the same with them being early). When he was awake he was crying but at that age I didn't think that was abnormal and he would fall back asleep feeding and I would feed him when he woke again.
As he was getting older his 'awake' time he screamed and screamed. He was also going through spells of no dirty nappies for a couple of days and then awful diahorrea. All I kept being told was that these things could be normal and we changed to aptimal comfort as the HV said he just had colic and reflux. Sickness wise on the aptimal he was sick every feed but sometimes I would have 3 feeds in a row that the sickness was manageable with a bib and muslin and then we would have feeds that he brought up most of the bottle everytime I stopped to wind him.
We got a paediatrician referral but she told us that she would expect blood in his stools and also that his weight gain was fine. The problem with O though (which I did try to tell her!) was that he absolutely comfort fed. At the time I thought perhaps the milk soothed his throat (from the reflux) but I then realised that he must have been in agony and feeding or sucking was just a comfort thing for him. He fed so much, I felt like all I did was feed him and clean up sick! We were given gaviscon which didn't help and then ranitidine which seemed to reduce his screaming during feeds slightly so we stuck with that. We were at the point that when he finished a bottle I had to give him a dummy straight away and rock him to sleep otherwise he would cry until he fell asleep, it was heartbreaking and exhausting!
After one really bad weekend my H phoned the HV on the Monday and told her we were buying milk designed for intolerance so to tell us what to buy. She told us not to do anything and arrived half an hour later with two tins of nutramigen lipel 1 (that's probably spelt wrong!) we moved him onto it on the Monday afternoon and by the tue night we had some spells of time when he was lying awake and not feeding and not crying! I meant to say as well when O was down for the night he squirmed and made the most awful noises of discomfort. I was so tired I could sleep through it to an extent and just wake when he cried but my H has to sleep in another room as he couldn't get a single minute of sleep from lying listening to him in agony. After we moved to the nutramigen he also had a good couple of hours sleep that he hardly made a peep.
We then got another referral to a different paediatrician and she said that she couldn't believe they didnt change his milk the first time as he was showing clear signs of cmpi. She prescribed domperidone as his sickness wasn't much better but we tried it for 3 days and he was getting really distressed again so we stopped it. Although he seemed much more comfortable on the nutramigen, he was still being sick and we were still having nappies that involved me cutting him out of his vest (seriously there was no way you were getting the vest up or down without you both being covered in poo). I went back to my GP and they asked for an earlier referral back to the paed (originally she was going to see us again in 3 months).
When we went back she said that he was still showing too many symptoms and that she wanted to move him onto nutramigen AA (so no cows milk) and she also changed him from ranitidine to omeprazole. Not sure if it was the milk, the meds or a combination of both but he's so so much better now. Feeds no problem, sickness is a million times better. There are days now t
25/06/2014 at 08:27
Thank you for sharing your story with me missdeedee. Your poor little one. It sounds like you have had an awful time. I'm glad you managed to sort things out for your little one and he is doing so much better.
Your health visitor sounds a bit more clued up than mine. I still get asked "have you tried a different teat"! I've tried everyone on the market! Interesting that your little one had the same reaction to domperidone as mine. She went from being really chilled out (apart from during feeding) to crying all the time.
How are you finding weaning? How much milk does your little one take each day now? My little one is small for her age but because I've spent so much time trying to get the milk in her she has followed her percentile but I'm worried after the past few weeks she will have dropped off.
I'm so pleased I decided to post and got such great advice and reassurance from you, MamaD and LWO. Thanks ladies!
25/06/2014 at 14:37
Weanings ok, I do feel a bit like all I do is give him the same foods and everytime I think of something suitable for his age it has dairy in it so that's quite a challenge! I was saying to MamaD, I'm obsessed with checking packets now (not things for O, my food) and I can't believe how many things have milk in it!
O has 4 8oz bottles a day, but normally takes 6 or 7oz (he doesn't empty them). In the morning I use whatever milk is left to make him up porridge so I know he's had a bit extra. I have no idea what I should be giving him (food wise) to give him calcium so I'm trying really hard for him still to have his milk feeds. His lunch and dinner bottles he will probably take 6 of one and 7 of the other and then he takes 7oz at 10pm before his bed so maybe 26oz that he drinks and a couple of oz in porridge (but he won't eat it all so say 1oz for that!)
What weight is your little girl? O was just above the 50th but crept up to the 75th when we moved to the nutramigen AA, he wasn't taking anymore milk but he wasn't throwing up the same so there must have been more in there! I've not had him weighed for a few weeks but at a guess I would say he's 18lb something. We've just moved him into his 6-9months clothes. He is a boy though so will be bigger than your LO x
25/06/2014 at 20:43
When I last got her weighed at the beginning of June she was just over 14lb so maybe 15lb now. She's between the 2nd and 9th percentile for her actual age and 25th corrected but she is also quite short. I'm giving her five bottles of 6oz but she only drinks 4oz or 5oz and that is with a lot of perseverance.
I hadn't even considered that she won't be getting calcium from her food. I was just hoping that she would start eating more solids so I could drop a bottle. Have you seen a dietitian for your little one? The gastro dr was going to refer us but I haven't heard anything yet.
25/06/2014 at 21:57
I know your having to do a lot for her to take the milk but sounds like she's getting a good amount.
Yeah we had a referral to the dietician but she wasn't great if I'm honest. We were supposed to see her before we started weaning (we were advised to start early to try and help O's reflux) but we only saw her after I had started.
She didn't really tell me anything, just took O's history which took up most of the appointment and then said it def sounded like CMPI. She asked if I had discussed doing a milk challenge (my HV had advised me to do it at 20 weeks which I didn't and when I went to see the paediatrician she said not to do it!) I just said I wasn't doing it, it's taken months to get him settled on milk and meds and I wasn't doing anything to mess it up. I said I would try cows milk in cooking or something when he was closer to 1.
She just said ok and gave me a leaflet that said, 'does my baby have CMPI?' and listed symptoms. She said to me about using O's milk in cooking so he's getting calcium and more milk that way but I've not done that yet. I have no idea what to do with it tbh. She said she would send me out a booklet from nutramigen that has recipes in it to use the milk but she's not done it, I've not got my follow up appointment date either as she was to send them together. I should really phone and chase it up tomorrow!
I worry about the calcium, there's a lot less calcium in the AA milk than the nutramigen 1 that O was on previously so I am trying to get him to keep taking his full feeds. I need to get better with the solids and figuring out what's calcium enriched. I don't know about you but now I'm giving him 2 feeds on top of 4 bottles I feel like all I do all day is feed O or so work in prep for feeding! (Bottle washing/cutting up fruit etc!)
26/06/2014 at 15:28
I know exactly what you mean missdeedee. With five bottles and two meals I'm not sure how to fit in naps and have some play time!
She seems slightly calmer with her bottles the past couple of days but her sickness is still awful. In hindsight apple and blueberry was not a good choice for breakfast! I've bought a probiotic today to see if that helps a bit.
Hope you get the dietician to send through the recipes soon. I'm going to do some research into calcium rich food.
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