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... to think there's more to this than colic?

(33 Posts)
soontobeamum1982 Mon 23-Oct-17 16:41:26

My baby is 11 weeks old. She was born at 40+1 but had a tough start with sepsis and was on SBCU for first seven days and then readmitted with unmbilical infection at 3.5 weeks.

Since 2 weeks she's been very difficult. Initially screaming lasted 8-12 hours a day. She was diagnosed with reflux at about 6 weeks and is on ranitidine (now 0.8ml x 3/day). That has helped, but shes still very, very high needs. She's seriously hard work and I'm exhausted.

I keep wondering if this is CMPA/I, even though docs and paeds say no and keep telling me how rare it is in a breastfed baby.

She sleeps well at night and is very happy and jolly in the morning, but come 2pm she's on meltdown again and nothing consoles her. She does look like she's in pain, and the screaming goes on all the time unless she's napping until she goes to sleep for the night (now about 9pm).

Her nappies are normal if very explosive. Sometimes i think they're a bit gooey but they never have visible mucus or blood and it's maximum one big nappy a day, no more than that, so doctor says that's no indication of a problem. She has a very mild posterior tongue tie that we haven't had snipped because she feeds fine and is gaining weight well. She does have mild ezcema on her cheeks but that's not unexpected as everyone in the family has dry skin and it's very easily under control with just good quality emoliants (no steroids). She sounds mucousy in her nose after a long sleep but that's a known reflux symptom and it always goes away when she's been up for a few minutes.

People keep telling me that she will settle in the next four weeks but I don't believe it. She just seems so uncomfortable. I feel like there is another problem. Could this be CMPA? The fact that it isn't 24/7 suggests not, but i'm worried i'm missing something and leaving my LG in pain.

At three weeks I did start giving up dairy, but my doctor told me to stop immediately for my own health (I lost weight dangerously quickly after birth and went down to almost 7 stone, and I was warned that I should not do it as it would be bad for me and for my ability to produce milk as we were establishing BF). I could try that again now, but also I can't help hearing my late grandma's voice in my head telling me i'm being absolutely ridiculous and that if the docs aren't worried she's just a normal baby... if very high needs.

Could this just be colic? Has anyone else been through the same deliberations and then found that it did just suddenly resolve between 12 and 16 weeks??

thesleepsheep Mon 23-Oct-17 16:51:57

She will settle. My dd is 14 weeks, and when she hit 12 weeks it was like we turned a corner. Although I tried a lot before then. Gripe water. Infacol. Dummy. Ewan the sleep sheep. Swaddling. White noise. Out of all these things white noise was our saviour. It took a minute or two but white noise and a dummy was like a miracle! Hope your babe settles soon. It’s so so hard, people don’t understand flowers

thesleepsheep Mon 23-Oct-17 16:53:44

I will also say. You know your baby best. And the doctors are not always right, if you think giving up dairy would help there are ways of doing it and maintaining a healthy diet, and if you still think she’s not right. Go back to the doctors. Mum knows best!

soontobeamum1982 Mon 23-Oct-17 16:56:38

Thanks @sleepsheep - I'm going to give it another three weeks or so but if nothing's different i'm definitely going back for more advice and will try a dairy elimination diet.

soontobeamum1982 Mon 23-Oct-17 16:57:07

But I really hope she settles like yours! That would be amazing. Fingers crossed

2kidsandoneintheoven Mon 23-Oct-17 17:04:04

I would say follow your instincts. My friend (who is a GP!) only learnt about her baby’s dairy allergy at 6 months. He too was breastfed, with very few obvious symptoms but she had 6 months of misery trying to get to the bottom of it and no weight gain in 3 months (this was finally the fact that helped her to prove something was amiss, which no one had really picked up on).
The difficulty is that everyone projects their own experiences. Very often the baby will turn a corner at 12 or 16 weeks but not all will as some do have a genuine problem.
Good luck and very best wishes!

SpinnerDryer Mon 23-Oct-17 17:10:41

Personally I would go for dairy free if I were you.

(I went through the same with DD)

I wouldnt have Soya if I were you, in case DD is allergic to that. Quite a few are.

Tesco do free from cheese etc.

Coconut milk or Almond should be o.k?

My DD still cant tolerate milk to drink, she is CMPA. We finally got a referral.
The change in her after 7-10 days was astonishing.
I BF for 24 months.

Her nose was running constantly with bright green snot, she was coughing, congested, screaming, vomiting, runny nappies, & an awful red sore rash.

I was told it was viral (in winter)
& heat rash (in summer)

The constant screaming was awful.

I hope everything improves a.s.a.p flowers

Dairyleedunker Mon 23-Oct-17 17:15:53

This sounds very like my ds who does have cmpa. He was ebf and like your dc was very unsettled from the start but nothing specific that I could put my finger on, I thought maybe colic or reflux but he was fine at night. Nappies were as you described, one big explosion every day, vests were destroyed! I thought it was a boy thing as my other dc are girls. At around 14 weeks his skin got bad with ezcema and the gp told me to bathe him daily and apply emulsifying ointment and steroid creams for flare ups. When I started to wean him into solids with a teaspoon of formula mixed with baby rice he immediately reacted to the milk. Tests have confirmed it. I have since cut out all dairy and his skin cleared up completely and he is overall a much happier baby. I am still bf him now (he has just turned 1) and once I got used to being dairy free it is not too bad. We will be starting milk ladder shortly so hopefully he will grow out of it.

Prusik Mon 23-Oct-17 17:20:26

Follow your instincts op. You know your baby. I had such a fight for Ds to be diagnosed cmpa, it was awful.

Your story is very similar to mine, we also had lots of time in hospital, reflux, colic, etc.

Tell the doctor you will trial it for two weeks and see if it helps

soontobeamum1982 Mon 23-Oct-17 17:20:43

Thanks @dairylee - what was the reaction you saw once weaning?

Fannyfannakerpants Mon 23-Oct-17 17:21:17

My baby had these symptoms and it turned out to be CMPA. Everyone told me it wasn't and I felt like I was slowly going mad. Follow your gut. If you're cutting out dairy, you also need to cut out soy.
There are some amazing and very supportive CMPA Facebook groups who are there at any time of the day.
You can also ask for a referral to a dietician at any time. This can not be refused but may take a while. Make sure you are eating lots of fats.
Keep going. It may not feel like it at times but you're doing a great job.

Binglesplodge Mon 23-Oct-17 17:25:48

Sad to say just as a balancing opinion that it sounds just like my DS who doesn't have cmpa but like you I lost a lot of weight cutting out dairy and soy for 8 weeks to see if it helped. He also had reflux and would scream round the clock. This post isn't meant to alarm you but just to warn you: I had pinned my hopes on it being fixable or resolving at 12/16 arbitrary number of weeks. In fact he was well over 6 months before he settled a bit and no cause beyond reflux and colic was ever found.

Please don't hold your breath for it all to improve by a certain time in case it doesn't.. mine is now 3 and a total joy and we've almost forgotten the hell. So I'm expecting number 2!

You can do this. But I'm sorry it's shit just now.

Nan0second Mon 23-Oct-17 17:26:17

Yep my exclusively breast fed baby was a screamer. Would only sleep upright, very unsettled.
In spite of being a two hospital consultant, we didn't realise until she first had dairy when weaning at 6months and came out in a head to toe rash. Cutting out dairy and soy in both me and her and she was like a new baby! Gained 2 kg in 2 months jumping from 9th to 75th centiles...
Give it a try for 3 weeks but make sure you get plenty of protein and fat in your diet to maintain your weight.
Good luck

Raindancer411 Mon 23-Oct-17 17:34:57

I haven’t read all replies but my son was exclusively breast fed and he has a milk allergy and it was only pick up when he was weaned at 6 months. They just kept saying try in 6 months and he wasn’t officially diagnosed until 2.5years old!!!

soontobeamum1982 Mon 23-Oct-17 17:40:10

Good advice @binglesplodge... but bloody hell, six months? She's adorable when she's happy (for about one hour in the morning) but I'm not really enjoying my mat leave and find myself longing to go back to work sometimes. And I get angrily jealous when I go to baby groups and everybody else's are quietly cooing and being lovely and mine is manic and insane.

I had sort of been pinning my hopes on having a nice Christmas as she would have either calmed down or I'd have given up dairy by then etc. But I guess I'd better strap in and just get through each day. It's so depressing wishing the hours away but I can't help it!

FarFrom Mon 23-Oct-17 17:41:12

It’s impossible to know whether or not there is anything else going on but think you are right to keep an eye on her. Also she (and you) has had a very difficult start and what sounds like a stressful and painful one. She is likely to be rather traumatised (I know med professionals rarely talk about this) but it’s not surprising if ittakes her a bit longer than others who haven’t been through what she has to settle.

dangermouseisace Mon 23-Oct-17 17:53:32

aww OP you and your DD have had a rough ride flowers

If your DD is gaining weight etc it is likely the screaming will stop. I remember with my 1st them saying, "oh the 1st 6 weeks are the worst, then it will settle down" but no. 3 months. I looked like a drug addict by the end of it- skinny from feeding and having to march about for hours each day to try and prevent the screaming. My 3rd was very similar- 4pm til around midnight every bloody night for 3 months.

However, if you think that cows milk is an issue there is no reason why you can't cut it out. I'm vegan and breastfed 3 babies fine. Get calcium-fortified soya milk etc and eat plenty of dried fruit/carbs/pulses and you shouldn't lose weight.

Dairyleedunker Mon 23-Oct-17 18:54:23

The reaction I saw on weaning was an immediate facial rash (which spread to his tummy, and afterwards ezcema flared). He also had stomach issues and was awful at night when we started weaning, screaming etc. He also became very constipated. I was lucky his reaction was so immediate the gp couldn't argue at all with my suspicions, I had photos with his red face and I tried one other brand of formula just in case. I think with some babies they have a delayed reaction which is harder to pinpoint. The Dietician told me to initially cut out diary for 4 weeks and when I did I saw a big improvement. She said not to cut out soya or anything else at the same time otherwise you are guessing what made the difference, although like I said in my case it was fairly obviously milk. Even now at 1 yr if I have milk on my finger and touch his skin he will get a hive.

PeteMe Mon 23-Oct-17 18:56:38

Sounds very much like CMPA and if I were you I would remove dairy and soya out of your diet. Take calcium tablets and have other high calorie foods to compensate for your weight loss.

You probably will also find after you are completely dairy free the baby could probably come off the reflux medication too.

PeteMe Mon 23-Oct-17 18:58:13

My belief is the reflux medication suppresses the delayed allergic reaction to dairy (through BF), which makes it even more difficult to diagnose.

PragmaticWench Mon 23-Oct-17 19:03:13

The 'rare in a breastfed baby' line is such crap, it's just harder to clearly diagnose when you're breastfeeding! It took 7.5 months of me begging and crying to GPs and consultants about how DD screamed day and night and she was raw with head to toe eczema. I was told I was a neurotic first-time mother who was upsetting my baby and I ended up with PTSD from the screaming. Within a week of me being dairy and soya free, DD was a changed baby.

Bue Mon 23-Oct-17 19:04:37

CMPA is not very rare in the BF baby, as this thread attests! It's just that doctors still think it is. This story is all very similar to my first cmpa baby- the only thing that makes me wonder is that baby is fine until a certain time of day. However it does not hurt to go dairy and soy free as long as you make sure you're maintaining good nutrition for yourself! With my DD the change was apparent within days.

corrianderisthedevil Mon 23-Oct-17 19:09:54

Haven't read all the replies but didn't want to read and run. You have my thoughts OP. My DS 2 had terrible reflux and my ds3 gets incredibly overtired and screams the house down if he hasn't had enough sleep. Ranitidine helped mildly with ds2 (but it took me breaking down in tears on the phone to the GP to get it) and following a strict routine helps with the overtiredness. Does your little one get enough sleep during the day? I had no idea until I had my first just how much sleep they need. Best of luck. It does get better, I promise.

MeatAndPotato Mon 23-Oct-17 19:18:49

Get her an allergy test, she could have a cows milk protein allergy and/or lactose intolerance, among other things. I would also recommend begging for ranitidine from your gp.

My thoughts are with you, you sound just like I did before my DS had been diagnosed woth GORD and CMPA, soy and lactose intolerance. He is now on Neocate LCP and has ranitidine 3x a day, but weaning is a nightmare currently as anything non-alkaline or a non root vegetable makes his GORD flare up terribly.

Don’t let yoir gp fob you off OP, I had to fight so hard for my sons current happiness.

Bambamber Mon 23-Oct-17 19:36:32

My daughter's only CMPA symptoms were eczema and congestion. Kept getting told it was totally normal, started weaning her and an immediate reaction. People always comment on how content she has always been, yet she still had the allergy.

I would personally go diary and soy free, give it 6 weeks and see if things get better. Ensure you get plenty of calories, I have found oatley to he a very good alternative to cows milk. They even do a chocolate one which I may be slightly addicted to. Just be careful, milk products aren't always labelled clearly as milk, sometimes could be labelled something like whey. So good idea to find out all the ways milk products can be labelled. Its amazing how much stuff does have dairy, even some wine! I find having oatley with my breakfast, a glass of choc oatley with my lunch, and supplements at night, I'm still getting my recommended calcium intake.i have noticed weight loss with it, but if you're worried about weight loss but like cake, betty crocker does a delicious dairy and soy free cake mix.

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