Advice needed - Twin boy crying all the time.

[XOXO13]

Hello everyone,

This may be a long one so please bear with me.

I have gorgeous boy/girl twins who are now 14 weeks old. I’ve written a previous post about my baby boy suffering with symptoms which were diagnosed as GERD and a cows milk and soy protein allergy.

My current problem is that he just won’t ever settle, and he cries for about 90% of the day. It seems to be getting worse too, with his cries becoming hysterical and inconsolable (which completely breaks my heart).

I have pushed for doctors to look at him because I genuinely believe something isn’t quite right. For instance, he hasn’t settled at all today and when I’d finished changing him he was still crying. He then let out a huge screamy cry followed by a trump - he does this a lot. I cuddled him tightly and he nodded off in my arms on his side which seems to be the only way he can settle. He then suddenly woke up with another big screamy cry followed by a couple more trumps.

He does this often, and seems constipated a lot more often than what is considered normal. When he does poop, it’s an explosion, thick and slimey green (which may be the formula and/or the omeprazole he’s on). It’s like a huge relief for him, but then we feed him and the same situation repeats itself. He’s started to fight with some of his feeds to, refusing it and therefore not managing to drink enough of it. This is only really in the last week.

I am barely sleeping because he just doesn’t settle in his crib (day or night) and will only now sleep on me but again, it takes me a while to settle him because he’s kicking his legs really hard and clawing at me before he gets comfortable.

He’s also struggling to gain weight at the pace his sister is, despite usually taking the same volume of feed.

He’s on prescribed milk, SMA Althera and takes (when not refusing) 5oz every 3-4 hours 5/6x a day. He now weighs 8lbs 6oz compared to his sister who now weighs 11lbs 2oz. She’s always been a pound heavier than he has, but that gap is widening massively, and Mason has now dropped below the 0.4 percentile.

My baby girl is, luckily, a very easy baby. She eats well, sleeps and poops. She’s started to smile and engage with us and seems content and happy. She rarely cries unless she’s tired or hungry (she loves her milk!)

In addition to wanting to help Mason but being at a loss as to what to do, I’m also feeling massive guilt that because my boy needs much more attention, cradling and comforting, I can’t give as much time to my baby girl. I cuddle her as often as I can, but when I’ve got a screaming crying baby that won’t settle, it’s really hard to attend to the other even if it’s just to play with them.

I try my very hardest, and when my little boy isn’t crying, I may get that 10 minutes of fun playfulness with them both which I make the most of and I love it. He does smile in those moments to, which is amazing to see.

I just wish I could make sure he’s as content as his twin sister.

Has anyone got any advice on what May be unsettling him and how I can manage it?

I’ve tried soothing, rocking, using a pacifier, pram, sling, carrier etc.,

Thanks so much if you’ve read this far xx

[NicoJono]

Hello!

Wow seems like your doing a fantastic job! I would definitely continue to push doctors. If you get that worried, cut out the middle man, call your local paediatric unit. Talk to them. Ask for him to be assessed.

Random I know, but did you use a yoga ball in pregnancy? If you did, sit on it, cradle your son and bounce!

It was the only thing that would settle my DD. I assumed it’s because I bounced on it from 36 weeks pregnant that she associated it with being in the womb?!

Good luck. Your doing great x

[Hidden]

Just a quick one but just to say I deeply sympathise . We had a lot of gastro distress , reflux allergies etc it’s so so upsetting and stressful.

My girl was combi fed I was already off dairy myself, and the only formula she could manage was an amino acid based formula Neocate , I think (I could be wrong) the one you are on has milk proteins in it still…you have to fight for it as it’s much more expensive …but have a read around the different levels of formula for allergies . I also had to fight hard for lanzoprozol over omeprazole as the later caused constipation, again the first one is more expensive . The consultant initially put her on lanzoprozol and then gp said they needed to give omeprazole as it was standard so it tried it and it made her really constipated so I fought for the first one.

Good luck!!

[XOXO13 in reply to Hidden]

Thank you! I’ve heard of that alt., milk and do believe my little boy needs a new one so I’ll ask about that. And the same for the alt., to Omeprazole. We stopped giving him it for two days to see if it made any difference but I’m not sure it did. But he was already backed up by then! Thank you for responding xx

[Bigblueskies]

Oh wow, this sounds extremely similar to my baby boy. We are just on the other side of the same situation and he is now finally growing well and he is happy and sleeping. We went through what you are going through, big hug! I know how hard it is.

Please take him to A&E and ask to be seen by a paediatrician and specialist dietitian. Your baby needs to be monitored properly. Don’t let them fob you off with generic advice. Your baby should be gaining weight properly and he should not be in so much agony! I was told he was fine until I went to A&E and was seen by a really good dietitian and paediatrician who realised how serious the situation was. They helped us through it and it took a specialist milk with higher calories, like Infatrini Peptisorb, and two hospital stays to monitor his weight gain and do a series of blood tests to check it wasn’t something more complicated. My baby boy was diangosed with reflux and cows milk allergy (we are also on omeprazole and it is now working) and also laryngomalacia which made feeding harder for him and he was swallowing too much air because of it. The midwives and GP kept saying it’s colic but it’s only colic when they gain weight as they should, not when they struggle to grow.

We are now on Althera and my baby likes it enough but I was told there are other options if he doesn’t. Sometimes it takes a bit of trial and error.

Your Health Visitor should also be monitoring him regularly too. They can refer sometimes if you are having trouble with your GP.

I hope you both get the help you need soon! He will get better with the right support so hang in there. I know it’s really tough!

🤗

[XOXO13 in reply to Bigblueskies]

Ow wow, thank you for letting me know. I have wondered if I should go straight to A&E but also don’t want to look like I’m over reacting. It’s good to know that you got the right help though, and it gives me comfort to know that something can be done and I’m not over reacting!

My son is on Althera but I still think it’s no good for him. His paediatrician did say that he’d change his milk if no improvement, and that he may not be able to have anything that is remotely cows milk even if the protein has been removed, so it’s likely he is allergic too.

I’ve not seen my HV since the babies turned 6 weeks, but I popped into have the babies weighed somewhere local and the midwife there was concerned and referred him to the NHS paediatrician but these things take forever.

Pretty sure he also has laryngomalacia, my mum is a nurse and said that too as you can hear his feed go down and it sounds painful. Can you do anything for that?

Thank you for your response xxx

[Bigblueskies in reply to XOXO13]

I went to A&E at least 3 times before a proper plan was put in place. The last time I thought I was overreacting too but when I called 111 to report his inconsolable crying, breathing trouble (from laryngomalacia and crying) and not feeding properly, they sent me an ambulance.

Laryngomalacia is not very well understood in the UK. All the info I found was from the US unfortunately. The ENT eventually diagnosed him and told us that it can make feeding very hard and it also means babies use more calories to breathe. Your baby most likely needs a high calorie formula until his weight is back on track. We were prescribed Infatrini Peptisorb and it completely changed things but it took a long time.

Your baby might be crying because he is hungry and in discomfort. He might have a severe allergy to cow milk protein but it is very hard to know this until he is able to at least have the amount of milk he needs and if his weight is not tracking properly then he is definitely hungry. I only realised all this after he started taking in enough milk and he was the happiest baby ever, even with reflux and terrible gas. He ended up drinking twice the recommended amount of formula for a long time and he is still taking a lot more than the formal guidelines. I was told to ignore this and feed on demand. Some babies just need significantly more energy.

The paediatrician should refer you to an ENT to assess him for laryngomalacia. They very rarely do anything to fix it but it’s good to check it’s not anything else and to monitor it. Having that diagnosis will also help you get a better plan in place for his feeding.

My son is almost 6 months now and his breathing is already better. He is also much better at latching on the bottle which means less gas and trapped wind in his tummy. They grow out of it most of the time.

Depending where I you are in the UK, it is worth asking your HVs if they have feeding specialists as part of their team. I was referred to a HV feeding specialist and she was amazing at pushing for referrals and support, as well as giving me advice and info on laryngomalacia and feeding.

Unfortunately I found that I had to make a big fuss to get the care we needed. Once it was in place it was great but I had to be very very assertive and dramatic to get there. I usually try and consider the pressure the NHS is under and try to be less demanding but on this I had to go against all my instincts and be a pain in their back side to get anywhere.

I know how very hard it is and it must be so much harder for you with another newborn baby who needs you. You really need the support so please ask for all you can get!

[Cornish131]

Hey 😊

This sounds exactly like my daughter used to be (she’s now 18 months old). I had to fight and fight, was made to feel I was imagining things. I was adamant something was wrong as she constantly cried and never settled etc. i just kept getting fobbed off or told it was reflux and she also went onto omeprazole.

It came to the point I ended up taking her to A&E because I couldn’t listen to her screaming anymore. She was admitted because she was refusing to feed. I think she was about 4 months old at this point. They still told me it was reflux and I told them it wasn’t. At this point she had been on hydrolysed formulas for possible milk allergy. When she was discharged they upped the omeprazole dosage and prescribed a different hydrolysed formula. I still wasn’t happy with it.

A week later she was still exactly the same. I contacted her HV and she referred my daughter to a dietician. I called my daughters GP and pretty much demanded an amino acid formula. I think by now the drs were fed up of me calling as I called about once a week for my daughter. And they finally prescribed it!! She got loadssssss better and I took her off of the omeprazole as well.

Dietician also advised early weaning, which we done. She then started thriving. No dairy passed her lips and she was a different baby.

When she was a year old she went onto Alpro Growing Up Oat Milk. I slowly reintroduced some dairy. She can tolerate some dairy now such as yogurts or cheese but she still can’t tolerate large amounts of dairy, such as in a bottle.

So my mum instinct was correct since she was born! You know your own baby and unfortunately it may be a bit of a fight. But I can 100% say the fight was worth it. 💜

[XOXO13 in reply to Cornish131]

Ow wow, that sounds so stressful but good on you for demanding answers. I have pretty much done the same since he was 3 weeks old, as it’s very easy for me to tell something isn’t right when his twin sister is absolutely fine.

We saw the paediatrician yesterday who has put him on an amino acid formula (an SMA one) and he’s seeing the gastroenterologist this morning as well. He’s also been referred for what they suspect is laryngomalacia, so I’m happy they are looking at all possible reasons for his symptoms. I went in with a long list of his symptoms and behaviours too, and will do the same today.

Thank you for sharing your story and advice with me! Xx