Fobbed off with 'colic'

[StarShine23]

Hi all,we have a 14 week old DD, one of twins. Since being a couple of weeks old she's been so unhappy: screams when held or picked up or anything really. She wears herself our screaming, not just crying,screaming like she's in pain. She was the bigger twin at birth but is not putting on weight at the same rate as her sister.
Weve taken her to the gp and hv a couple of times,but keep getting fobbed off with 'colic'......but to us this doesn't mean anything, she doesn't match colic symptoms, it's not easing and it just feels like we're getting fobbed off and not being taken seriously.
Its breaking our hearts that she's so unhappy and the health professionals aren't listening to us.
Anyone else been through this?? Any suggestions
Baby is breastfed, we've tried gripe water and gaviscon but no change
Thanks

Cut dairy out of your diet. She could be CMPA.

I live abroad where they tend to investigate things like this so we were referred to the hospital paediatrician. The first step was for me to cut out all dairy but that didn't make much difference. They recommended constipation meds just in case. Melatonin was prescribed in case her lack of sleep was causing her distress.

In the end, she was diagnosed as a high needs baby. She is now 3.5 and it's very much still her personality; very sensitive, unpredictable, cries at the drop of a hat, extremely stubborn (but very affectionate and loving!)

Not sure if this is your case but just wanted to share.

Obviously I’m not by any means a medical professional but my youngest had similar symptoms (turned out to be a ‘non-ige cows milk protein allergy) so might be worth having a google and seeing if that resonates.
first step for that is removing all dairy from your diet (and also sometimes removing soy as well, which can be hidden in so much! As the protein shape is similar so can also cause a similar reaction)

Look, I know at 14 weeks it’s unlikely… but…. My son was EXACTLY like this. I spent the first year of his life permanent exasperated and exhausted and running to different doctors until I convinced myself I was crazy. When he was 2.5 he was still moody and gripey and hardly ate. He had issues around pooing and I just thought there must be something we’re missing. Round and round I went to doctors and round and round they went telling me it was normal, I was over anxious, or whatever. Eventually I begged a Dr to test him for everything - starting with his blood.
3 days later he was diagnosed with Coeliac.
I know 14 weeks is really really early. But maybe check it anyway. Don’t be fobbed off. Better to annoy a few Doctors than miss something.

We had very similar. With ours it was undiagnosed Tongue Tie. Are their symptoms like these?

A couple of PPs have mentioned Dairy. Have a read of this article from Kellymom on Dairy.

Sounds like cmpa to me. Cut dairy and soya from your diet and you should see quite rapid improvement. Join the cmpa Facebook groups for breastfeeding mums

It’s not coeliac, there’s no gluten in milk.

Trying a dairy free diet sounds like a sensible next step.

It sounds like the difference between colic and “high needs” is some invasive tests and some unnecessary meds.

There is a theory that the gluten proteins from the mother’s diet can be detected in breast milk.

Wheat proteins. The gluten is different though. You can definitely have a wheat allergy but be ok with gluten. Just like having a dairy allergy but be ok with lactose.

I have one of these, and it really is heartbreaking to hear him cry and scream 😪 in his case, he has horrible reflux and CMPA. I’ve cut out dairy from my diet and he has CMPA-friendly formula top-ups. There has been some improvement!

What are your little one’s poos like?

No, I meant gluten proteins. My child has Coeliac so I do understand the difference between gluten and wheat proteins.

I agree that ‘colic’ is a totally unhelpful ‘diagnosis’. I’m not medical but for most people I know whose baby was unsettled there did turn out to be a proper cause.

When a BF baby (well done for BFing twins up to this point btw!) is unsettled I’d always recommend speaking to a properly certified lactation consultant, just in case it is in any way linked to feeding. IME midwives, HVs and doctors (even paediatricians) can easily miss these kinds of issues.

I really hope you get to the bottom of the issue asap.

Nope, no invasive tests. Honestly, when your baby is so distressed, crying constantly at the top of their lungs and waking screaming every 30 mins every single night for months on end, you are extremely grateful that someone is taking you seriously and trying to find out what's wrong! Unfortunately, high needs is not the same as colic and my DD is still an extremely demanding and complex 3-year-old 😬 Wouldn't change her now, of course!

Thanks so much for your kind responses. Its comforting to know we're not the only ones struggling with this.
The thing is, we don't think its digestive....she has similar nappies to her twin, burps and passes wind frequently enough.
Our instincts say its something else completely that's causing her pain, and it's the discomfort that making it hard for her to feed. She sleeps really well at night and for naps, and will lie on the floor quite happily, but as soon as you pick her up she's screams. You can be holding her in your arms, move the slightest bit the wrong way and she cries out. Shea then inconsolable and cries herself to sleep without feeding.

This doesn't seem like anything to do with digestion does it??
Wht do the health professionals not listen to us?? Its like saying she has colic is just convenient so they don't have to bother investigating it

I'd go in again and ask for a check over but also note that cmpa shows up differently in different babies. My ds had blood in nappies but was a very happy baby. My dd has no nappy issues or reflux but screamed and screamed.

My daughter was like this she had moderate physical reflux, severe silent reflux and multiple food allergies. She started treatment for her physical reflux with gaviscon at 6 weeks then omperazole at 8 weeks but the GP missed the silent reflux and food allergies so these weren't picked up until 17 weeks when we had to see a paediatrician for something else. She cried for 16h a day and was in my arms 23h a day. At the point of diagnosis with silent reflux and food allergies her only symptom was the screaming although once her nappies improved I realised they had been a problem too.
Silent reflux alone is enough to trial dairy and soya free.
Also you can have happy babies with cmpa so it could be that both twins are cmpa which is why their nappies are the same but one is settled and the other isn't. I have a friend with cmpa, one screamed for the first 3 months before going on to prescription formula. The other was a happy chilled baby that just had loose nappies once they switched from breastfeeding to formula. The proteins from the dairy in your diet are partially broken down by your body before they enter your breastmilk so not all babies react in the same way.

It's probably worth trialling a dairy and soya free diet to see if that makes a difference. Half of babies are allergic to both and I would probably also talk to your GP about a trial of omperazole to see if there's some silent reflux. Silent reflux can be caused by a dairy allergy but you can have it in addition which is what my daughter has.