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.

Poor baby.

How would you get him weighed? Is there a clinic you can walk to?

If he is weighed you'll be able to see if he is getting enough food, and you will see someone about his feeding and crying. Poor little chap.

Hi OP. I've been thinking about you a lot since yesterday- how are you doing?

Are you in the UK? I had similar, though not quite as bad, with my third all the way up to 5 months. Have all said normal etc, breastfeeding was a nightmare. One weekend he was screaming more than normal and we took him to A and E. Junior doctor who'd just finished a paed rotation took literally one look at him screaming and arching his back and said reflux and milk allergy. Turned out to be correct, I stopped bf and used neocate. He was like a different baby within a week. He was dairy intolerant to about 5/6. If he occasionally had some ice cream, cream or yogurt say at a kids party, he'd have severe stomach cramps and cry and tell me his tummy hurt and he had a headache, so that was obviously what was going on as a baby. He's more or less grown out of it now.

Not necessarily the same thing going on with your baby but clearly something is upsetting him, you don't need to suffer through like i did because everyone says it's normal, please take him to see a paedritician if you haven't already.

Hi everyone. Op here, had issues getting into my other account so made a new one.

LO is loads better today and did well yesterday to.

I was fobbed off by the GP and health visitor again, my health visitor told me he was 'scared of being lay down'.
My GP refused to give me a phone appointment on the matter, also said it's his reflux bugging him, he doesn't have an allergy and they won't check for it.

So after being dismissed by everyone yet again, I bought him soy formula, which he wolfed down. He ate loads yesterday and slept after each feed! Today he's been cooing and wiggling about happily and had plenty to eat again.

He's also off the gaviscon with no signs of reflux! No vomiting or spitting up. I'm amazed he's doing so much better

Also regarding where we live. We live in the U.K. But live in a bit of an odd place.
We live out in the country, kinda in the middle of nowhere. Lucky we have a shop and pharmacy half an hour away but the doctors is a lot further.
It's easier and cheaper to get my partner to watch LO whilst I walk to the shop.

Oh kitty I'm so pleased. If you have the strength I would make a formal complaint about GP and health visitor

That's great news :)
Are you OK doing the soy thing by yourself? I have no experience of it so don't know if there are any cons to leaving the medics out of the loop. Although they haven't been any use so far!

ExplodedCloud

My LO seems to be doing well like this so we'll probably keep it up. No point giving him meds if he doesn't actually need them.

I think my next move is to move GP once I can get the forms to do so, we'll move to a closer one and talk to them about the issue and what happened. See what they have to say about it all.

If he's happy on soy then he's staying on it and I'm just going to ignore the GP/health visitor for now.

Bottom line is he's happy and eating again and that's what matters!

It's great he's happy and obviously more comfortable.

Dieticians generally do not recommend soya milk for babies, especially under 6 months. So, while it's great you and your baby have some relief using the soya formula, please do get a referral for a paediatrician asap, so they can prescribe the right formula for him.

Keep us posted, won't you?

Kitty please don't think I was criticising you! I think you're absolutely right to have done this.
My thoughts were more about the things Icky mentions and hopefully a new GP can support you properly: )

That's great news kitty, I remember the absolute relief as soon as we switched to nutamigen as well (i said neocate earlier, but it was nutamigen) - once he was older i switched to soy milk instead of cows milk as well. If you get a new go involved you'd get the formula on prescription i think which might work out more economical if he's going to be on it for the next year or so?

GP not go!

So happy he's doing better

He'll be ok on soy formula for a while, I'm so glad it's helping him. You do need to get the HCPs in the loop as soon as you can, not least because you can get it on prescription. Is it as expensive as it used to be?

There you go Kitty, you've done your own exclusion test. If he vomits on cows milk but not on soy then that is fairly disgnostic of CMPI.

There are other formulas that are better long term for your boy and you will also get them on free scripts so worth pursuing now you can (hopefully) leave the house again :)

Hi everyone.
LO is still doing so much better, he's spent all day cooing and smiling at me.

I've called my usual gp to complain and request a formula on prescription. They didn't seem to mind about the complaint, they told me it's all trial and error. They've again refused to give him formula on prescription and said to just keep him on soy.

That's good news Op, well done for trusting your judgement and trying the other milk, looks like you've found your answer!

One thing I'd say is you are going to need to get the GP or health visitor on side. The soy formula may have worked but as others have said it may not be the best one for under 6 months. Also sometimes babies do well on a formula like that for a couple of weeks and then start showing symptoms again, and need an even more specialist formula. So it really is worth persisting with getting some external help with this either by your new GP or from another health visitor. Not least because specialist formulas can be ££££

Is your husband on side now? Maybe now he can see the difference he could come with you to the GP and support you?

In my experience GPs sometimes want to see that you've done the exclusion diet for a few weeks before referring you. Can't remember how many it is but it's definitely more than 2 I think. Sometimes they ask you to reintroduce the normal formula again to test out what happens. You may not need to see a paediatrician, they might just be able to refer you to a dietician who can see you first and then refer you on if needed. I'd push to get a dieticians appointment after you've tried the new formula for a couple of weeks as you'll need support with weaning etc.

But just so happy you've made a breakthrough at last and really hope things are on the up for you and your boy now. Such good news.

Just wanted to pass on a really handy info sheet about milk allergy in children from The British Dietetic Association.

The passage below is quoted from it:

^Soya based Formulas
Infant formulas based on soya milk are not suitable as
a first line alternative for infants under 6 months of age.
After 6 months they should only be used if recommended
by a healthcare professional if the child does NOT also
have a soya protein allergy (ie. has tested negative

for soya allergy) or if other alternatives have proved

unsuccessful or if the family want a formula suitable for
vegans after discussion with a Dietitian.^

www.nhs.uk/ipgmedia/National/British%20Dietetic%20Association/assets/MilksforChildrenwithaCowsMilkAllergy.pdf

I don't want to offend you OP, or for you to think I'm banging on about it; I just wanted to share the information I found useful with my DS's CMPA.

All the best to you and your DS.

Doesn't really sound like teething . I would insist the dr tries nutramigen or neocate, they will be reluctant as its expensive. The baby is obviously uncomfortable or in pain somewhere

Yay! So happy we were all able to help, although it has been mama doing all the hard work! I know the relief of finding a formula that they settle on and seem to be content drinking. Having said that, and I think someone else mentioned it, be watchful that perhaps in a week or so baba becomes unsettled again. More than likely there will be an allergy to soy protein so gear yourself up for it. My second guy probably was but I didn't know what I was looking for (he was wheezy / chest rattled but I just thought another cold etc) and as he was relatively content compared to before I didn't make the connection. It was only when I transitioned him to oat milk did this stop. He was nearly two by then. It is so important that baba is on the right formula for the first year of life as it is where he will get most of his nutrition especially before six months. Definitely engage with a sympathetic healthcare professional and read up as much as you can now. Weaning can be a bit of a pain (no cheese, yoghurts etc) but you will find your way eventually. And most grow out of this by two years of age. Best of luck OP!

I took a diary and videoed my baby screaming. I took it to the doctor and she added up that she screamed for 13 hours in 24. She was prescribed a special formula but it didn't work. Suddenly at 13 weeks it just stopped. No gradual change. Just like a switch.

She's now 2.5 and barely ever cries or whines.

Op here again sadly.

LO is unhappy again, he was cooing away happily until last night, we even got a giggle out of him.

He's now back to crying but not as bad as before . No cooing again and only settling on my shoulder. He's also having odd poops, pale in colour and small amounts.
He's lifting himself up with his back legs too, when he does this he lifts his bottom and back up, it's very odd, never seen him do it before

Any ideas?

Any change in diet can take a little while to settle. He could be a bit constipated now, so working that through. You really need to insist on seeing a paediatrician or dietician, because the formula you are using is not generally recommended for such a little one. You need help with this. At least you know that a change of milk can help, you just need to find out which one is best.

Kitty399 please read my previous posts inc the link to the British Dietetic Association's information sheet.

Soya formula is not suitable for babies , especially those under 6 months.

Additionally, if your DS has got milk allergy there is a often an issue with soya too.

Please print the info sheet I linked to and take it to your GP and insist on a referral to a paediatrician/dietitian. GPs are not experts in infant allergies. You need that referral.

Take care and keep us posted.

I'm not going to post again as I feel that you are trying to treat something yourself which actually needs to be treated by a HCP.

Soya milk is unsuitable for babies with cmpa as a lot of people who have a reaction to dairy also react to soya, similar thing with goats milk/cheese when you get to weaning as well.
Good luck OP I really hope your baby gets settled!