Baby is not getting better.

[ChirpyQuail]

Hi all looking for advice because i feel the medical world is failing my daughter miserably. She is 6 months old as since her birth has been seriously unhappy. We were told early on she had a cows milk intolerance so we were prescribed Neocate which has helped with feeding. The issue we have is she is unhappy screaming in pain all day she arches her back and lifts her back up using her head. It isn’t wind and we have been told by a paediatrician it is likely silent reflux. We have given her carobel, gaviscon, omeprazol, lansoprazol and every single one has caused her horrific side effects and has not helped but made it worse. We have asked for tests to be done as at this stage we are scared something is seriously wrong with her but the GP have said there is nothing more they can do and the hospital take a lifetime to get hold of us. My family feels as though it is falling apart. I have a 3 year old who is my world but I feel like I am neglecting her and I feel like giving up on my daughter as I miss how I felt when it was the 3 of us.

My now elderly brother was like that and the doctor prescribed buttermilk. It worked

Our son had reflux and we were told by the Paediatrician to wean early, at four months. You could try that.

If its an intolerance, rather than an allergy, they presumably can't test for it so are assuming its CMPA (at least that is how it was 12 years ago with my son). We were told soya, eggs and dairy were the most likely culprits.

Keep chasing the hospital. Daily if you need to.

Keep chasing. It's exhausting. But be "that parent". Have them know your name when you say who's on the phone. Keep pestering with reminders set in your phone to chase again .

As a positive, you can now start weaning. Hopefully you won't have too much more hell to endure x

If you haven’t already tried it, give Lactase a go. Changed my LO overnight.

If it’s the NHS you’ve dealt with so far? If so, are you able to afford a private assessment?

Hi thank you for the messages my daughter is 6 months and has started weaning but this hasn’t helped. I will get back on to the hospital and try them we did pay to see a private paediatrician but got no where with them

Use your instincts obviously if you think it is more than reflux, but I just wanted to say that one of my dc had severe reflux. She was actually hospitalised with it pretty much her whole first year. That did help because it meant she was given meds in hospital and monitored to see if it was working.
Anyway, if that is what your baby has, sadly it’s just a waiting game and managing the symptoms the best you can. Such as sitting baby up for 45 mins after liquids, including milk feeds. Feeding her milk while she is sat up rather than lying in your arms. More solid weaning instead of purées. Keeping a food log with symptoms so you can avoid trigger foods. Checking labels of all food to avoid cows milk if it is that.
My dc ended up on domperidone, ranitidine, lansoprasol and pain relief daily, multiple times a day, until she was over two. And yes unfortunately she was in pain everyday for the first two years. She still has reflux now and she’s a teenager. She still has pain and medication but it’s not as often luckily.
I understand your worry and it was a hard slog when she was a baby. Especially as she was violently sick multiple times a day until she was over one year old. But also dealing with her pain and crying was hard. It did improve when she was walking and spending more time upright. People used to tell me it would get better when she stood up and at the time I used to find that irritating but it is true.

Sorry just wanted to add that if any of the meds are prescribed by your babies weight you need to take her to be weighed weekly at least. Even an extra few pounds can mean they need to be on more medication and even a few ml can make a difference in my experience.

It's so awful isn't it, I remember the cycle of fighting for the next medicine and then the crushing reality when it simply made little to no difference. I had one child who was helped by medication and one who was not. . However that DC did improve a lot when they were mostly sitting up and crawling, then a hundred times better when they were walking. So you might only have a couple of months of it being this bad.

Rather than focusing on the 'cure' it might be helpful to focus on getting yourself through the next couple of months. Is there any more help you can get from friends/family? I highly recommend getting out as much as possible regardless of screaming - sling headphones and a brisk walk even if you feel knackered initially. It's sad because you can't sit in a cafe with you friends and babies like everyone else but I promise your tolerance of toddler behaviour will be amazing and you will be the most patient chilled mum.

My daughter was like this is was a combination of multiple food allergies, severe silent reflux and moderate reflux.

We got her more settled by removing her allergens from my diet (although didn't manage to identify them all!) and later moving to alfamino and high dose reflux treatment. She couldn't have neocate as it has coconut in and she's allergic to coconut.

Her reflux treatment comprised of omperazole, but it's only effective at doses above 2.5 mg/kg, gaviscon, lactulose for the constipation the gaviscon caused and domperidone which speeds up the emptying of the stomach. She's still on this combination, minus the lactulose aged nearly 5 and are just starting to try to wean her off the domperidone slowly as her reflux has been relatively stable for the last year. She's also allergic to carob so couldn't use carobel. For her weaning did very little, possibly made it slightly worse. Standing helped but only during the day time. She's still had bad reflux at night and when it goes wildly out of control it does still return in the day time too.

What were the side effects from the omperazole/lansoprazole? They are known to make things worse in the short term as the body tries to override the demand to make less acid by making more. My daughter also had barely any improvement at all until she was put on the highest possible dose and in combination with as much gaviscon as I could get in her. It was once we were on the maximum dose for under 2s around 8m that we had to add in the domperidone as the omperazole couldn't be increased any further.