Silent Reflux - Where to go from here?

[Abigail234]

My LO is only 6.5weeks old
The first 2 weeks she was perfect and very rarely had an issue. I was unable to breastfeed as she wouldnt latch on and had much support from the group's so I expressed as much as I could to feed her this with formula

At 2 weeks, she began showing signs of reflux - pulling legs up, in pain etc
We bought Aptimel reflux milk which then made her constipated.
Our HV suggested using Aptimel Comfort to help with reflux and also buy Infacol which we did and have been using it since.

She was still struggling - always in pain and always crying despite reading and following every bit of advice on how handle reflux.
I couldnt keep with with expressing and a constantly crying child so gave up expressing which I'm sad about.

Eventually, a few weeks ago, we saw the doctor and was given Gaviscon and told to use 1 sachet.
No change
She then reached 10lb Wright and moved her to 2 sachets - no change and severely constipated

HV then suggested she could possibly have Cow Milk Protein Allergy which we saw the doctor and was out on Nutramigen on the Saturday morning - she stopped being constipated and began producing clear water for poos and in a lot of pain again
We kept her on this till Monday when we saw the doctor who said take her off this as it's not working and out her back on Aptimel Comfort and 2x Gaviscon
She went back to pain and bad constipation

yesterday I had to go to the doctor's as she is in a lot more pain and was given Lasoc Omeprazole.
I was told by the doctor (who I've recently found out appears to have misinformed me how to give LO this) to dissolve the tablet in 1oz of water and feed her 3/4 if the bottle as she only requires 7.5mg of 10mg tablet
I did this and soon after she unloaded her entire contents of stomach all over herself and myself

I spoke to another mum who advised he told me to give too much water and also looks like dose is too high for her weight so today I have given her half a capsule.

She took the medicine slowly - gagging every so often and bringing up some milk but she took it.
2 minutes later - she projectile vomited all over the place

I fed her a while after and again she vomitrd the whole feed again

I tried to feed her again just there and also give her a drop of cooled boiled water and she's again brought up her full feed

I'm at my wit's end, I broke down and can't stop crying - nothing were trying is working, she cries most of the day, she rarely smiled anymore and I'm locked in the house as she can just handle a 15m walk before she kicks off again.

I don't know where to go or what to do, the doctors are getting sick of me now
I'm tempted to go back to the beginning and take her off all reflux medicine - only making bottles with Comfort formula and try to get her bowel movement back to normal again and put up with crying.

I'm trying to get s moment when she's napping to try relactating again incase this could help her in some way - I feel like I'm grasping at straws and my poor husband is feeling like a spare peg and unable to do much to help.

HV said I passed the PND questionnaire but since then Everything's got worse and I am slowly getting so low that this morning hate hated myself for at one point thinking I didn't want to do this anymore - but she flashes a side smile and I feel better but i don't feel strong.

Has anyone been in this situation where nothings working and you feel like you have nowhere to go.

Firstly, a massive hug for you, it sounds horrible and I can't even begin to imagine what you are going through. We had a nightmare with gaviscon so only stuck with it for a short time. We were put on ranitidine which helped hugely. It was after a lot of appointments when we were finally sent to an allergy clinic and diagnosed with cmpa. Although he was ebf, we were prescribed a dairy free formula as i was thinking of stopping bf as we were having a nightmare with biting.

Can you push for allergy clinic referral? Or a dietician? They would be well suited to help

Thanks so much for your reply,
After speaking to my HV after she was taken off Nutramigen, she told me to keep the formula for now as she still suspects CMPA even though the spotty rash has cleared which she developed a few weeks ago.

Today I stopped all medicines as she had projectile vomited 3 times after feeds. I am only feeding her Comfort formula and amazingly she's gone to the toilet 4 times now so hopefully the constipation has passed quicker than expected.
She's still had moments of pain, but I've spent the whole day with her and keeping her busy so she can forget about the pain and she's coping well but very hard to keep doing it 10h a day until husband comes back

I am still thinking there is a possibility of CMPA but the health visitor has expressed concern s few times now as she believes I am being "fobbed off" so I am thinking about speaking to her about maybe looking outside of the surgery for a consultation since my practice don't seem too fussed.

I'm still quite surprised as I have now spoken to a few parents of Omeprazole children who are heavier and on a much lower dosage do believe he's totally inexperienced in prescribing baby medicines or had an off day.

Thanks for letting me know your experience, I'm going to contact my HV and hopefully start to get this sorted.

Don't have time for a long reply but had exactly the same issue with my DD who is now 18 months - only thing that worked for us was enfamil ar. Stop all infacol etc too as this makes them sickier!

I would go back to your gp and ask for a referral to a dietitian and paediatrician as they'll be able to advise and guide you with CMPA and prescribe the correct quantities of reflux medication. I have two DC's both with CMPA and both with reflux and I know how you're feeling, I've been there. I would put your baby back on nutramigen dairy builds up in our bodies and it can take up to two weeks to get rid of it all and feel better, you will start to notice a differenceit can just take some time. Gaviscon causes terrible constipation in babies. You could ask about using carobel to thicken her feeds and make it easier to keep down. It doesn't have any side affects. Please feel free to send me a message if you have any questions or worries and I'll try and help. I've been through a lot with my DCs and I'm a bit of an old hand at it all now!

The dose of omeprazole can vary, but can be up to 3mg/kg so 7.5mg isn't too much for her. How much water are you dissolving it in? I'd say dissolve in a maximum of 4mls of water and give 3 mls. If she doesn't like the taste and you think this is making her sick you could mix it with a bit of milk.

If it is a dairy allergy then that amount of time wasn't long enough on it to see if it was going to help for sure her not. With with reflux as the only symptom it's prob less likely to be cmpa. How much milk does she drink? With babies with reflux it's better to give smaller feeds regularly if possible and make sure they're not over feeding so their tummys aren't getting too full. In a day she should be drinking about a maximum of 180mls per kg.

Reflux is really hard and exhausting. It's ok to ask for help and keep asking, including for someone to help look after her if anyone's free to give you a break. Remember though that no matter what most babies grow out of it as they get bigger and start to wean and spend more time sitting up so it won't be forever.