Cow’s Milk Colitis – does this sound right to you? (Sorry, v. long post)

[MakeMeSausages]

This is my first post, and I?d really like some advice from anyone who has any experience of cow?s milk colitis. Here?s our story so far...

My DD began having green diarrhoea when she was 3 weeks old. She was breastfed (but had been given a small cup feed of formula when we were in hospital). HV said it was most likely a bug and would run its course. A week or so later there was no improvement so we went to the GP. GP also felt it was most likely a tummy bug.

DD was generally doing well but began to struggle to gain weight, despite feeding every couple of hours during the day, and almost continuously from about 7pm to 3am each evening. At 6 weeks I introduced a supplement of formula at night. At 7 weeks she began to have mucous in her poos, and then some streaks of red blood.

At this point the GP agreed to test a stool sample for the ?big nasty? bacterial infections, and rotavirus etc, and fortunately these were not present. However, the diarrhoea, mucous and blood got worse. DD still struggled with her weight gain and we began supplementing with formula during the day as well, so she was now having about 50/50 breastmilk and formula. Her poos were much less runny but still had blood in them.

When DD was about 10 weeks old, the GP ordered a test for faecal reducing substances. The results were unclear but showed something was amiss. DD also developed a pin-prick red rash on her torso around this time. GP then said DD was most likely lactose intolerant, and told me to exclude all lactose from my diet, and replaced DD?s formula with Nutramigen 1 (an extensively hydrolysed milk). I really wasn?t convinced that she was lactose intolerant, but we were also referred to a paediatrician and dietician. At this point I tried to go back to just giving her breast milk alone but this was quickly followed by very loose frequent poos again.

I began to notice that DD was better on the Nutramigen 1 but her symptoms would get worse after a breastfeed, despite replacing all dairy with either soy or ?Lacto-Free? products. When we saw the paediatrician he felt DD had an allergy to CMP, which had led to Cow?s Milk Colitis. He still felt the Nutamigen 1 was appropriate but said that I needed to remove all milk (including Lacto-Free) from my diet if I wanted to continue breastfeeding. I did this, and began ?pumping and dumping? to keep up my milk supply but only actually breastfeeding DD once every couple of days, to see if the cow?s milk previously in my diet had worked its way out of my system. However every time I breastfed DD she took a turn for the worse. Perhaps inevitably after a while she began to refuse the breast and I made the very difficult decision to stop breastfeeding.

For a couple of weeks things seemed much brighter, we still had the occasional mucousy poo, but the rash cleared and DD seemed to be thriving. She did possit a bit more on the Nutramigen 1. However, a call from the dietician led to her prescription being changed to Nutramigen AA (an amino acid based formula). The dietician felt that the mucousy poos every now and then and bringing more back up than before could be signed that DD was beginning to react to the broken down proteins in Nutramigen 1.

Within a week of DD being on Nutramigen AA she started to sound congested, the rash was back, and the mucousy poos more frequent. I phoned the dietitican who wanted to give it another week before changing DD to Neocate formula. However, during that week the blood reappeared in her poo and I took her to the GP who prescribed Neocate straight away. However, she also said that if this didn?t work further tests would need to be done as there was nothing in Neocate for DD to be allergic to (as its totally man-made amino acids, produced in a dairy-free factory etc). She gave me the strong impression that the move to Neocate should improve things pretty much straight away.
DD started on Neocate just over a week ago. She hasn?t had any more blood in her poos as yet, but she is passing more mucous than ever. She is also still rashy and congested, and seems to be a bit ?refluxy? ? sometimes when she brings some milk back she cries a bit, and sometimes objects to being laid down. She is seeing the paediatrician again in about a month.

So my questions are;
Has anyone else had an experience of Cow?s Milk Colitis? Does this sound like it to you?
Has anyone had a child react to Nutramigen 1 and Nutramigen AA, and did it happen so quickly?
Has anyone used Neocate for Cow?s Milk Colitis and did it take a while for the symptoms to resolve themselves? Did things get worse before they got better?

So sorry for the long-winded essay ? I?m absolutely at my wits end with worry about this. DD is now 19 weeks old and I feel like her babyhood is slipping away very quickly and all I?ve done is worry and fret over her weird symptoms. Every step forward seems to mean two steps back again. I?m desperate to know what?s wrong and how we can help her.

sorry I have no advice for you, but wanted to post and say hello and welcome to MN and that I'm sorry you and DD are going through this at the minute and that your concern and worry comes over very strongly in your post.

Someone who can help you out will hopefully be along in a minute and this is certainly the place for advice and support

ps, your talkname made me laugh

My DS2 ended up with colitis caused by Cow's Milk Protein intolerance. I was (and still am) breastfeeding him so I cut all dairy out of my diet and we were prescribed Neocate which I used in his food. Have you been using the Neocate for a week? It took three weeks from me cutting out dairy and us using Neocate for DS's nappies to improve - bfore that they were frequent, green, mucousy and streaked with blood. So maybe you need to give it a little more time? And I imagine the change from being breastfed to Neocate would also take a little time for your DD to get used to as well.

There is a Neocate website that might help Neocate

I know how horrible it is seeing your child struggling so much, especcially when you're not sure you've found a solution yet. Could you keep a diary of how often your DD's nappies are bad, and even take photos (boak I know!). I found that helped the paed to assess just how bad it was.

It sounds like you are doing everything possible for your DD, and it will get better. DS had a really rough few months but he's doing really well now.

Crispy - thank you for your kind message - much appreciated.

Cakeforbrains - I'm really encouraged by your post - thank you. I suppose it does make sense that as DD has had colitis for a while it may well take a while for her bowels to heal. We've had another bad day of muscousy poos, but I'm trying to keep the faith that we might see an improvement soon. I've been keeping a 'diary of events' but its a good idea about the photos - and not too boak given I obsessively examine every nappy in great detail at the moment!

I still obsessively examine nappies, and DS2 is nearly 2 now!!

I hope you see some improvement soon. You'll also need to get some advice about introducing solids when you get to that point - I was told that children with milk intolerence are likely to also be soya intolerant. It takes some label checking but I've got used to it.

Hi, im new to this so please bare wiv me. My daughter is cows milk intolerant an has been on aptamil - pepti since she was about 7mths old, she is now nearlly 2 i breastfed until 5mths with no problems until i tried to change from bf to formular, she experience bad rashs, bad stomach pains and very bad nappies. Since using aptamil pepti ive had no problems at all, im being advised by the hv and dieticion to try her with foods containing cows milk to 'see how it goes' i hate trying an testin because when she does have a reaction its horrible i hate seeing her in pain an feelin miserable so i think its not worth trying it! They have said its most probable that my daughter will never be able to tolorate cows milk itself but hopefully in time she will be able to tolarate things with it in like cheese etc. I hope you find the right formular for your baby

my son ended up on neocate at about 15 weeks after breast feeding and what seemed like trial and error from different formulas made some or little difference to his pain , very loose explosive green mucous stools. he is now 2years and is ok having cows milk in a meal but not so great if it is giving alone ie. regular custard, or yogurts

when my son was started on neocate the change was noted within 24 hours his skin and his stools were better --not cleared. so if you are worried go baack to your doctor, i hope you get the help you need soon best wishes

my dd is 4 in june and she as cows milk colitis:( she is on neocate too as been for such a long time but last year they wanted to start her on some milk products again, she only had was-its and quavers( she can not eat solids yet) and the blood poured out of her they took her to theatre and looked her bowels was full of lesions caused by the milk products:( so had to stop them all again, just been to gastric doc today and says he wants her trying again, i am so scared it will happen again. but he said the muscas we carried on getting for months after was her bowels shredding for new! and it did take months.

MakeMe - I could have written this post. I am in the exact same boat. My 4 month old DD has mucousy stools daily and i still see traces of blood. Also, 2 weeks ago she had multiple blood streaked stools on one day. She is on nutramigen AA. GI says Nutrmigen AA is broken down so much that nothing in it should not irritate her gut. We are doing a scope on her next week to see what is going on. Good luck and keep us posted please. I am waiting until after the scope to see if we should switch her to neocate.

Sorry - I can't really give much advice.
However, I really sympathise and just wanted to let you know you're not alone. DD (who's now 7) had milk protein intolerance and some symptoms you're describing - rash, constipation, colic, reflux. All I can remember of her first 3 months was the constant crying day and night. She only slept occasionally and that was after crying for hours so the poor dear was exhausted (as was I).
DD was prescribed nutramigen (stinks, doesn't it?) but, from what I remember, she also had several other medications - one for reflux and one for constipation. Has the paediatrician not prescribed anything else? I just remember a whole ensemble of medications when it was feeding time.
I was advised to discontinue breastfeeding even though I'd given up dairy products. Sometimes, babies are so intolerant they can't bear any (even a tiny, minute) amount of dairy - and there can be some dairy in the most unexpected places. I cried about this as I'd had terrible problems breastfeeding first born and yet DD had latched on really easily. However, she was obviously in so much pain after sucking for a really short while, it was distressful.
DD was given the all clear when she was between 2 and 3 years. The consultant suggested not trying any dairy products until she was 2 and then we tried just small amounts to she how she would react. She is absolutely fine now and has dairy products with no problem at all.

It's hard, it's a terrible time, you're both exhausted and you can't see the light at the end of the tunnel. It will get better.
In the meantime, try to keep a feeding diary and list symptoms as and when they happen. That'll help you and reassure you you're not mad and it'll help the consultant.

I have a hazy memory of some kind of society that could give support. I'll have a think and, if I remember, I'll get back to you. Bear in mind it was a few years ago and I was in a haze of exhaustion and suffering from PND.

Good luck. Big hugs x

Yes, this sounds very familiar. The stomach issues, the nappies, the two steps forward, then one step back, the rash, the congestion. I could go into all the ins and outs of DD's diagnosis, symptoms, treatment etc. But that would make for a long post that isn't actually going to help you. You need to get a referral to a specialist neuro-gastric paediatrician. A bog-standard run of the mill paediatricisn may not be enough. Where in the country are you? Can you get to Great Ormand Street? If so, ask for a referral to Dr Keith Lindley. He is the guru on this type of thing and is fab. I think you also need a referral to a paediatric dermatologist to get your DC's rash treated - if they are faffing about with 0.5% HC and bath oils, that's not going to get it sorted. And a referral to a paediatric allergist to rule out anything else that may be rumbling away might not be a bad idea too - waiting lists are long, unless you have private health insurance, so better to get the ball rolling sooner rather than later. I really wish you luck. It's horrid. XX

Thanks to everyone who has posted with their experiences and for the encouragement.

DD has still not passed any blood since being on Neocate, although there is still lots of mucous in her nappies. Her skin is looking a bit better, and although she's still possiting regularly I think its gradually decreasing. We've been here before and then things have got worse again so I'm trying not to get my hopes up too much, but I'm tentatively feeling more positive about it all at the moment.

I'm so sorry to hear that your little ones have had such a rough time.

cakeforbrains - we have an appointment with a dietician in the next few weeks and one of the main things I want to cover is how to introduce solids and make sure she's getting everything she needs, but I might be asking for more tips and advice after that!

KKRaman - I'm really sorry to hear your DD is struggling with this as well. Please let me know how the scope goes - I really hope it helps you and your DD's doctors to understand more and get her sorted x

trace2 - that sounds awful! Its interesting that your paediatrician said her bowels had to shed and renew - this would suggest it might take a while.

alegre - I was also gutted when breastfeeding didn't work out. We'd overcome thrush, cracked nipples, etc but I eventually got to the point when I just couldn't bear to see her upset by it anymore, and wanted to feed her something that wasn't going to make her bleed. I still feel a bit down about it though. Thank you for your encouragement.

cardamomginger - I'm going to give it until her next paediatrician appointment, as she will then have been on Neocate for over a month (a fair trial?), but if things haven't improved more by then I'll be pushing to see a specialist, and I'll bear your advice in mind - thank you.