Baby acting oddly

[Kitty39]

I've had issues with my DS for awhile and have posted previously, in the past he's cried 8 hours a day, none stop.

after his vaccines he calmed down for several days. Stopped crying and would whine if he wanted something, but now he's back to crying.

He hardly eats or sleeps. 7pm till 4am he wakes every hour, then at 4am is awake for two hours and settles again at 6 but then wakes for the day at 7-8. He doesn't nap for more than 20 minutes.
He hardly eats, it's a struggle getting him to eat, he screams if I try to fed him. I can leave him for 2/3 hours or more and he still won't eat, after awhile I sit down with him wiggling about and get him to eat.

He has 'episodes'. He'll cry if moved, if talked to, if anything at all changes he cries. If he settles on my shoulder and I take his hand off my hair, he will cry, touch his hand, cries, talk to him, cries.
I can put him in his cot to settle but again he cries if moved from his cot to pram.
I put a blanket on him when he sleeps and even this upsets him!

I can't go out at all as he screams none stop.

He's been to the doctors and a&e several times, I've been told I'm 'feeding him wrong', 'it's a cold', 'reflux issues', 'colic' and 'he's fine!' I've tried everything they've said and the medicine they said to give him but still nothing.

Everything makes him cry, nothing makes him happy.

Reading about cmpa:
"Cow’s milk sensitivity or allergy can cause colic-like symptoms, eczema, wheezing, vomiting, diarrhea (including bloody diarrhea), constipation, hives, and/or a stuffy, itchy nose."

He doesn't have a lot of that, I don't think he'd have an allergy but I could be wrong

This sounds exhausting.

Yes, as a pp said, babies cry, but not to this extent. It really does sound as if something must be wrong.
Can you go back to the doctor /health visitor and tell them again what you've said here? That you've tried what they suggested, that he's had the medicine and nothing is working?

In fact before you go, could you maybe 'record' a period of 24 hours? So film him at his worst and maybe note down when he feeds, how long for, when he starts crying, when he stops, when he sleeps etc.

Will probably be extremely tedious, but just wondering if it might help give a fuller picture?
I'm sure they get lots of parents worried about their children, and probably in some cases it is as simple as 'well yes, babies do cry, but nothing to worry about.'

Yours sounds completely different. FWIW I had a baby who was a bad sleeper. He woke up (for feeds) every two hours every night without fail for nearly 2 years. And I was tired and it was tough. BUT he was as happy and easy as could be all day. So nothing like your situation and I honestly don't know how you're coping

I'm so sorry you are going through this - it sounds heartbreakingly hard

I've no advice I'm sorry but wanted to post to offer a handhold and to bump for other posters

Sontagsleere, thank you so much, joining just for me, I feel honoured haha.

I have health issues so the pregnancy was closely monitored, I had scans every two weeks and he was small all through pregnancy, right up until two weeks before delivery when he gained a lot of weight.

Birth was rather 'quick'. Contractions for 7+ hours then had a quick 'stage two'. He had pooped during birth and was nearly born still in the sack, my waters broke last minute.

He was fine in the hospital, check over and was fine. They kept him in for two days as he had pooped.

After his 2nd week of life he started getting sick, he threw up lots, was taken to hospital and given oxygen for two days, I was told it was a cold and sent home.
After this he started crying, he wasn't a crier before this, he only whined. He also slept well before this, he would wake 3 times a night for feeds.

Also querying CMPA. They don't need to have the typical "allergy" symptoms to have it (hives/eczema/rash etc), it can be a gastro allergy that presents as colic/reflux/silent reflux. And there is no test for this, it's diagnosed on signs and symptoms. OP have you happened to ever notice if his poo looks a bit shiny or mucousy? Has the situation gotten progressively worse or has he been like this since birth?

Just saw your latest update. Does he still vomit?

Also about his feeds. His formula says his age should have 5 feeds of 6oz in a day. He will eat 3oz at a time, no more, he leaves 2oz all together in most feeds, sometimes in the mornings he has 6oz in parts.

Getting him to feed at all is difficult, he screams and shoves it away and turns his head, but then he's hungry as he does take it but then turns away again. I feel like I'm force feeding him but it's the only way to get him to eat

Buy some nutramigen and see if he lol tolerate the taste. It was a game changer when we swritched to it for ds. No need for a prescription but it's expensive so in the long run you ll want a paediatrician on board to prescribe it. Push for a referral to a paediatrician. In my experience gps not good necessarily good with babies - dd also had cmpi but I was told by go she didn't. Paediatrician totally disagreed!

I had a quick birth (50 minutes from start to finish). DD cried for about seven weeks non stop. Improved vastly with cranial osteopathy, she explained that when babies come in a hurry they can get a kind of pressure headache because of the head coming down at such a fast pace. DD also diagnosed with reflux and prescribed ranitidine which her almost overnight.

You mentioned quite a list of meds, you might not see an noticeable difference straight away and might need to give them time to work?

Bue He no longer vomits but we give him gaviscon most feeds or he can't keep it down.

Of that's interesting re df formula, I wonder if it's changed since I needed it for ds.
I delayed trying dairy free for weeks after reading a similar list of symptoms online - my ds often had 'normal' nappies and grew well, no excema/wheezing/stuffy nose. But he screamed all.the.time. He couldn't settle to a feed but would cry as soon as he came off the boob to go back on, he wanted to be upright all the time but often didn't seem like he wanted to be touched. Basically he was just impossible to live with for months. Not all babies have all of the symptoms.
Also worth being aware that a huge % of CMPI babies also can't tolerate soya.
My ds was prescribed Nutramigen first but the protein in that still caused a reaction, Neocate was great.

this really isn't normal.

One friend of mine ended up going to her gp and sitting down and sayign I am not leaving here until you refer me to a paediatrician, as somehting isn't right and I can't go on like this.

She was refered and baby diagnosed with severe milk allergy (gp hadn't a clue)

Please insist on a referal. Try writing down total amount drunk and total amount slept in 24 hours, and also amount of crying. Film him crying , ad write down no. of hours. List all the things you have been recommended and have tried.

That's quite a list of meds to have tried in 10 weeks. How long did you try ranitidine for? It took a little while to kick in for ds (who was a chaotic non sleeper).
I know this against all advice but what happens if you put him down on his front to sleep? It was the only way ds slept for more than 20 minutes. With the agreement of HV & GP we bought a breathing monitor and finally I got a couple of hours sleep.
Might be worth trying it for a nap while you watch him.

We tried the ranitidine for a week but was told to stop the gaviscon, he was then unable to keep any food down. Plus he wasn't eating all his food (was told to put it in his food) so I didn't think he was getting the full dose or getting it in bits.
The anti reflux formula I think he found diificult to drink but then he's being the same with his normal formula now (moving away, screaming, only having 3oz at a time and leaving lots.) he was only his for 2 weeks.
Infacol and gripe water made him sick.

Could this be teething?

Just a thought, but has he been checked for tongue and lip ties (by a specialist, not just a midwife, they often miss them). They can make feeding hard, make them not feed enough as they get worn out as it's harder to latch/feed. Both my kids had awful wind from swallowing air with their milk due to a bad latch too (due to the ties) which caused a lot of pain/crying. Getting them lasered made an enormous difference. We saw Dr Levinkind in North London. He has lots of info on his website about ties and symptoms of them.

Good luck getting to the bottom of what's going on. I second whoever said insist on a referral to a pediatrician, this doesn't sound like normal behaviour.

Please go back to the GP. This isn't normal, ask to be referred to a paediatrician. You need some answers before you get totally mentally and physically exhausted. Although I'm not a fan of them, ask you Health Visitor for advice / help with a referral.
In the meantime try cranial but make sure you go to someone decent.
Please keep us updated
Good luck x

As far as I know he does not have a lip or tonge tie. I had the doctor look in his mouth as I thought he could be teething, they said he is but I doubt all these issues are normal with teething?

The ranitidine doesn't stop the vomiting but it stops the pain. I was breastfeeding so we syringed it in separately to feeds. It made him much happier. Gaviscon constipated him horribly.
I genuinely thought ds was so unhappy until the ranitidine kicked in. Then he started smiling and was a happy vomiter. I could deal with that!

Screaming when he feeds strongly suggests cmpa/cmpi. Please please push for a paed referral or first just buy some Nutramigen/Neocate yourself if you can (online?) to see if it makes a difference. Neocate is the gold standard but it is more expensive. You've tried everything, I think you really need to consider a specialist formula now.

I also wanted to mention a strategy for getting a paed referral/prescription. My friend's DS was exactly the same as yours. She kept being fobbed off by the GP until, at her wit's end, she took him to be seen again and fed him at the surgery. When the doctor finally saw the screaming and distress and abnormal feeding, she got some action. That's an embarrassing and distressing approach I realise - you could also take a video to show?

Video the baby and go back to doctor.

Whe reflux 'improves' the crying doesn't stop overnight, it takes time for the irritation to heal up.
Could you try the Zantac again and make sure the baby is on the right dose for his weight. This is very important.

OP it sounds like you are very stressed and can't see the woods for the trees right now.

However you need to steel yourself and get to the GP and/or HV. It's very important that you find out what your baby weighs and secondly you need to monitor his nappies to check if he is dehydrated. Change him every two hours and check his nappy then.

This could be a few things (or nothing) but you need to know is he is producing urine and putting on weight. Failure to thrive is a real danger for small babies with feeding problems and a HV will take it seriously.

Incidentally, tongue tie can be tricky to spot and many doctors wouldn't know what to look for, so don't rule that out.

The ranitidine dosage needs to be worked out according to your baby's weight, and changed regularly, so it's important to get him weighed.

This does sound like classic reflux/silent reflux, caused possibly by CMPA. My first had silent reflux and the screaming was horrific, so I really feel for you! My second didn't scream but just vomited all.the.time. and was much happier. Both have CMPA plus soya and other allergies.

I agree with videoing and keeping a daily diary of times he is screaming. FWIW I have a disabled child and I always video if I need the medics to understand what I am saying - it is far more effective than an explanation.

I'd also suggest cranio alongside insisting on a dr listening to you -just in the 'it won't do any harm' camp and because although it isn't meant to work I have seen it be miraculous on one screaming baby. Was like a completely different child after one session. He was a fast birth as well.

Neither ds2 or ds3 could lie on their back (prob reflux) we had an amby hammock for ds3 which was brilliant. But it sounds as if your baby is crying in any/all positions not just when lying down.

Do collect evidence and insist on being seen. This is not right.