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Nutramigen, reflux and an unhappy baby...

(22 Posts)
Shazpscott Thu 07-Apr-16 07:46:33

Hi there,

Hoping someone out there will have a little reassurance or some suggestions for me!

My little girl is 3 months old, attempted BF for the first few days but it just wasn't working for us so has been on HIPP organic since. Anyway, she was diagnosed with silent reflux at 4 weeks - hardly sleeping during the day, arching/writhing when feeding, getting upset at feeds. She was prescribed Carobel which was a godsend, she became a happy, content, smiley little baby who loved her bottle!

She's always been sneezy and snuffly with quite dry skin and cradle cap which is my ongoing nemesis. 2 weeks ago she developed dry, red, scaly patches of skin at her elbows, shoulders and knees. Assuming it was a touch of baby eczema (my husband's family have eczema, hay fever, hives) I bought some Aveeno which seemed to help. At this time she had begun to fuss again when feeding and wasn't as interested in her bottle as she had been.

A few days later she came out in a hot red rash all over her torso, arms and legs. The Dr diagnosed eczema and told me to continue using the Aveeno - it has cleared it up pretty well. At the same time her reflux flared up and we've gone back to her screaming for half and hour at the start of a bottle. Due to the eczema my health visitor suggested we try a hypoallergenic milk. The Dr prescribed Nutramigen and she's been on it for a day and a half. She doesn't seem to have any problems with the taste as once she takes it she'll drink 7oz but the screaming still happens and yesterday morning she refused her bottle until 11am, screaming if the teat came near her. I made her a bottle of HIPP to see if that made a difference but it didn't! She was so unsettled and unhappy yesterday, lots of wriggling and general upset.

The health visitor advised a bit of vanilla essence around the teat, but because this was happening before the milk change my instinct is that it's the reflux bothering her.

Anyway, now that I've bored you with my daughter's medical history (!!!!) I suppose I just want to know if anyone has had a similar experience - how quickly did the Nutramigen kick in? Was there anything else that worked? The Dr wouldn't give me anything else for reflux as she said we needed to try the milk first to see if it made a difference. I do understand her thinking but it's horrible watching my baby so upset and stressed when feeding. I'm pretty good at dealing with stressy things normally but I'm starting to find this really tough...dreading what today is going to bring!

Thanks in advance :-)

daisydalrymple Thu 07-Apr-16 08:21:13

Hi, has the nutramigen been given for suspected dairy / cows milk protein intolerance? If so it can take up to two weeks for the dairy to get out of the system.

I hope it soon works for your baby, it's horrible seeing them so unsettled isn't it. Dc3 had a dairy intolerance diagnosis finally at 9mo, nobody would take me seriously because he's bf, so we were dismissed with colic / wind. He's been so much more settled since we've both been dairy free, although the odd blip everytime we unsuccessfully try the milk ladder.

daisydalrymple Thu 07-Apr-16 08:33:56

In the meantime have you tried any of the gentle massage and movements to help with the discomfort?

Some things that might help are -

gently cycling her legs when lying flat
Gently holding both legs together and pushing up to tummy for a short hold
Massage of tummy in a circular clockwise motion
Holding her in the tiger hold, so lay tummy down along your arm

There are others that hopefully people will suggest too, the above really helped for us.

I used to find with dc3, the baby carrier really helped kick some wind out, think possibly the jigging, being upright and straight, support and slight pressure against his tummy, always resulted in lots of trumps.

If you do a search on here you'll find lots of tips on the intolerance and / or reflux. If it's an intolerance, it's great you're getting the help so soon, but youll also find great advice on reflux if that continues.

Cornwall73 Thu 07-Apr-16 08:56:43

A very very big hug. My twins had this and it was pretty upsetting. Like others have said Nutramigen takes a little while to take effect so give it time. In our case the screaming, writhing and pain eventually wore off but they carried on throwing up milk right until they were 1+. The discomfort disappeared though. I second the sling and holding baby upright and close.

Shazpscott Thu 07-Apr-16 09:56:50

Thank you both so much for replying. I've tried all the usual reflux advice eg propping up crib, keeping upright and I do try and get in a bit of massage after her bath when she lets me!! Haven't got a carrier though so will investigate that.

The Health Visitor/Dr thought it could be an intolerance so that's why she's on the Nutramigen, I think I'd just hoped for a miracle as soon as she started taking it - as you say it's heartbreaking watching a tiny baby in such discomfort. Will persevere with the Nutramigen and hopefully as her system clears things will improve.

I am really lucky though and have a health visitor who really knows her stuff and listens to me, where I live there don't seem to be as many hoops to jump through as in other places. I've read so many awful stories on these forums about mums having to push and push to get any help so I do appreciate it. I just wish it would work a little quicker!!!

Thanks again :-)

Cornwall73 Thu 07-Apr-16 10:02:18

Our health visitor specialised in allergies and picked up it was a milk intolerance from 9wks, she made our GP gives us Nutramigen. It's horrible to see her in pain but it does take a while to improve so don't give up. A carrier will help (and an excuse to give lots of kisses to that lovely head!).

daisydalrymple Thu 07-Apr-16 19:21:39

How has today been shazpscott?

Shazpscott Thu 07-Apr-16 19:58:32

Same story, really. Takes about half an hour of screaming before she'll take her bottle and she's generally pretty unsettled. Gave her a bath and a little massage which she was really enjoying, then all of a sudden stretched bolt straight and screamed. I'm thinking of phoning the Dr tomorrow and asking for something for reflux to calm it down and then we can wean her off it in a few weeks to see if the new milk is making a difference? Wish she had an instruction manual!! Tried the tiger hold and that settled her eventually so thank you for that - a baby carrier is on my shopping list for tomorrow! I'm sorry you guys had to go through a tough time but it's good to hear there's light at the end of the tunnel!

daisydalrymple Thu 07-Apr-16 20:10:46

Oh bless you both, that sounds hard. This is a good time to bump this thread, as hopefully others will come along who can advise on the reflux alongside the dairy intolerance. I only had the dairy intolerance with dc3. I really hope you get it sorted.

TrainBridge Thu 07-Apr-16 20:15:36

My refluxy baby loved the sling, only place she was always happy (as long as I kept walking). I'd get something like a Moby wrap or (even better) see if you've got a local sling library and see what they can lend you. If she needs to spend hours in it then it has to be comfy for you as well as her!

Shazpscott Fri 08-Apr-16 07:58:43

I've missed our sling library for this month but a friend is giving me her sling to try today so will give that a go! Thank you :-)

wonderwoo Sat 09-Apr-16 09:42:47

Oh I feel for you. I had two babies with allergies and reflux and it was such a hard time. Try and keep in mind it will get better and you can just keep trying one thing at a time, and see what works.

Give the nutramigen a bit longer. We found it helped a bit, but not a lot. Please go back to the GP if you find it is not a cure. Eventually we were given Neocate LCP, which is a completely synthetic milk (no milk protein at all) and he was much happier on that. He was also on another medication for reflux, but I cannot remember what it is right now.

I agree with the sling. My second baby practically lived in his all the time. If you try one and don't get on with it, keep trying because there are so many different ones and its a personal thing. Mine was a Kari Me wrap and I loved it.

Good luck. Its not easy having a baby with these problems and you are doing fab.

wonderwoo Sat 09-Apr-16 09:48:09

Oh, and I also put my second baby to sleep on his tummy, because it was the only way he would ever settle. I am sure plenty of people would say you must never do that, but I felt I had no choice. That way, we both got a bit of sleep.

With medication (I have remembered it was Omeprazole) the reflux dud improve, but continued until he was about one year old. But once he had the right milk, the reflux became less uncomfortable and so was not such an issue. Our paediatrician said that reflux is sometimes a symptom of milk allergy. HTH

Shazpscott Sun 10-Apr-16 21:56:08

Thanks wonderwoo. Definitely a bit of an improvement over the weekend, she's started on ranitidine and we've had a few non-screaming bottles which has just been amazing. I have noticed a difference on the Nutramigen, her little tummy is much less distended and her windy bottom seems to have regulated - she gave my husband a run for his money in that department previously!! Will persevere and hopefully she'll continue to improve. We both love the sling, can't believe I didn't try one before! She was asleep within minutes of going in and she's a notorious non-sleeper during the day. Health visitor out tomorrow so will see what she thinks!

sharonthewaspandthewineywall Sun 10-Apr-16 22:02:35

My boy has cmpa and is on aptamil pepti and ranitidine. He was awful with the reflux he has sandifer syndrome- dystonic movements as they try to posture themselves to relieve the discomfort. He is a different child now but it did take a week or so. Ask for some ranitidine it made so much difference to my little man, he was 11 weeks before he started smiling as that's when we got his milk sorted. Have you been referred to the paediatrician?

wonderwoo Tue 12-Apr-16 11:00:04

Glad the sling is working. My little boy loved his, and it was a life-saver for me. How is she getting on with the new milk now?

trixymalixy Tue 12-Apr-16 11:40:48

Nutramigen still contains cmp. My DS was allergic to it. He was prescribed Neocate instead.

Shazpscott Sat 16-Apr-16 22:26:55

Going to go back to the baby clinic this week to see Dr/health visitor. She will only take her bottle happily if she's sleeping, otherwise it's a battle and she gets really upset. She doesn't seem to be in pain as she was before but will go from smiling to screaming at the drop of a hat and takes a long time to settle so there must still be something not quite right.

sleepymom Fri 20-May-16 21:08:40

I have seen this thread and wondered how your baby was doing as it sounds like my current experience

Shazpscott Fri 20-May-16 21:52:47

We're definitely through the woods. The ranitidine (once we found the correct dose) seemed to settle the pain from the reflux and the screaming settled. She still fussed over her bottles though but I found distraction/sleep helped with this. Mam teats also helped a bit. I became the mother I swore I'd never be, holding up my phone with In the Night Garden YouTube clips while she drank! We've weaned her, still dairy free, early at 18 weeks (I know all the advice is against this but HV suggested it) and we haven't looked back. She is so much more settled and I've got my happy baby back. She's still not a fan of her bottle but we think it's more of an association thing now - I should have pushed for reflux medication much earlier than I did but lesson learned I suppose! Next step is seeing if a sippy cup makes a difference. Think my advice would be trust your instincts and keep bothering health care professionals until you've got a result. It took tears for the Dr to prescribe ranitidine but it was definitely the first step to improvement. Look after yourself too - I started avoiding going out because I couldn't face feeding her in public which wasn't great for my mental wellbeing!

sleepymom Fri 20-May-16 22:10:55

Thank you so much for replying. I am actually in tears because now I feel there is SOME hope for my son. He's 10 weeks and for 5 weeks has been unsettled/had rash/mucus nappies etc. Have been on Nutramigan for 2 weeks and gaviscon for 1 week. Have seen a slight improvement but he still won't sleep in the day unless cuddled which is exhausting. Even my family and husband now say he's just "like this" and will be a "clingy" baby but I'm sure he can be helped further. I also don't go out much and aren't enjoying him like I should. I started to think I would have months of no sleep. Thanks again

Shazpscott Sat 21-May-16 14:48:25

My little girl never slept during the day, it's definitely worth investigating a sling as the fab ladies who gave me advice suggested. If nothing else you have 2 hands free to make a cup of tea! I found my little one's symtoms flared up after each set of injections. Rash responded really well to aveeno products (you can get them on prescription). Definitely go back to gp/health visitor and ask for other options. As far as I know the gaviscon just thickens the milk like the Carobel I use does - helps it stay down but doesn't actually counteract the acid that's produced. A few weeks on rinitidine made such a difference for us. Every baby's different though so it could be a different combination that works for you - don't give up! At your stage I was ready for the hills, 10 weeks later I'm loving being a mum. Sometimes I think it's just about survival, don't give yourself a hard time. If you need a laugh download the Unmumsy Mum's book, it honestly saved my sanity and made me realise there wasn't actually something wrong with me grin

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