SILENT REFLUX HELP!

[leahmaysimmonds]

My daughter is 8 months and there’s been a constant battle for her reflux since birth. I have tried everything for her reflux and nothing is working!

She has cmpa so we change to neocate lcp, I thought it would sort it from then as i thought her reflux was because of her allergy. I was told neocate is thinner than other formulas so the doctor recommended gaviscon. I tried gaviscon which didn’t work and seemed to give her a bad tummy. I then tried carobel but she had an allergic reaction to the soy. Thick and easy was next which was actually for 3+ years but doctor’s recommended it. That made her scream! So then I tried rice to thicken to milk and it made her cry and reflux flare up I had enough so i put her on lansoprazole for a month which did absolutely nothing. She is now on omeprazole which is doing nothing but making her worse and not sleep!!
I burp her every 2 ounces and after, sit her upright 30 mins after feeding, give her reflux safe weaning foods and she sleeps upright with a wedge. All she does it wriggle in her sleep and hunch her back. It just seems to get worse and she gets older and I’ve had enough. What else can I do!!!?

I’ve thought about it but now they’ve changed her to neocate syneo with probiotics but they haven’t received the email yet from paediatrician. The baby rice I gave to thicken her milk gave her a bad tummy and diarrhoea so she may have a starch allergy, I’m sure alfamino contains starch so I can’t try it x

Have you tried baby osteopath? I found that helpful with mine.

Not sure how well you have been advised on the tongue tie - if in London try Malcolm Levinkind, who is also great on reflux.

She has a tongue tie, posterior one but they wouldn’t do anything. I was asking since 14 weeks old because she was breastfeeding and under 12 weeks. I haven’t tried osteopath but I don’t have that kind of money. I don’t think it’ll help either x

My son also has reflux - sleeps in the sling in the daytime. Then we only have to do nights, when he sleeps on a proper incline.

Ok, baby osteo rarely is a "cure", but I found it really relaxed my son and helped him cope better with feeding, which made his sleep better too. I did 2 sessions only, but appreciate that at £55 each they are not cheap.

You have my every sympathy. It is so shitty.

The black specs in the nappy should be followed up though - can you show the doctor? Could be digested blood, so maybe another allergy?

I have extensive knowledge of reflux and CMPA (I foster babies) Firstly, what symptoms does she have to diagnose the CMPA? How long have you been on the prescription milk? It takes a good 3-4 weeks being on prescription formula with nothing else at all before you will see results.

Silent reflux is hard, there is no cure (sorry!) just management. It sounds like you are doing a lot already. I would suggest you get the prescription for Omeprazole again and stick with it for 4-6 weeks and make sure the dosage is adjusted regularly for her weight. It also takes a while to work. this is the best thing as it will not stop the reflux itself but heal the pain she is feeling so she will be more comfortable.

Just stick with these two things and nothing else.

The good news is reflux does resolve itself in time and you are already 8 months in.. By 18 months old you usually see a big improvement, in the meantime its hard going, just hang in there. I know how you feel. x

We’ve been where you are now and you have my sympathy. I’ve sat and cried on the kitchen floor feeling helpless.

We tried so many combinations and ended up with CMPA induced anaphylactic shock, growth issues and recurring infections from aspiration.

Neocate did nothing for our DD and in fact seemed to make her more uncomfortable, it’s a very thin consistency so caused reflux to worsen.

It took a completely CM and soy free diet. We couldn’t even use “may contain”. She had nutramigen milk (it’s thicker) and a combination of lansoprozole and domperidone.
This changed our life and made for such a happier baby.
We were then able to introduce soy after she was 12 months.
It took until age 10 to get rid of the epi pen for CMPA. She can now tolerate CMP.
She is 11 and has never been able to come off the Lansoprozole. We have a few flare ups, but it tends to be triggered by something.

Have you tried not burping her so often? Burping can make reflux worse. My 3 mother old is really struggling with reflux. She's on omeprazole, but I don't really see it helping, and she absolutely hates taking it. Chokes, screams and spits ot out now, so it's useless.
Also I wouldn't do any bicycles moves or tummy runs as this will push the liquid back up her tubes.

I agree re burping making reflux worse. Can you settle her on her side or stomach until she brings it up herself?

I'm sure you've tried but just in case:

Cot wedge
Dosing the omeprazole around 45 minutes before a feed
Getting the meds adjusted with weight gain
Early warning - only on laws advice - we weaned Dts at 11 months actual / 9 months gestational. It really helped although we couldn't do BlW as they actually couldn't sit properly
Don't shake the formula, swirl to mix, gets less air in it

Oh I thought it would be hundreds! X

Done literally all of that. Her omeprazole is max for her weight. I use a wedge for her cot. I mix formula with spoon and take out bubbles with it, there’s literally no bubbles. I weaned at 15 weeks x

There’s nothing else I can do more! I’m wondering if it’s a gastro distress problem as she has some black spots in her poo they’re very small, can only see it with a flash or a lot of light.

@Hellohello00

I have extensive knowledge of reflux and CMPA (I foster babies) Firstly, what symptoms does she have to diagnose the CMPA? How long have you been on the prescription milk? It takes a good 3-4 weeks being on prescription formula with nothing else at all before you will see results.

Silent reflux is hard, there is no cure (sorry!) just management. It sounds like you are doing a lot already. I would suggest you get the prescription for Omeprazole again and stick with it for 4-6 weeks and make sure the dosage is adjusted regularly for her weight. It also takes a while to work. this is the best thing as it will not stop the reflux itself but heal the pain she is feeling so she will be more comfortable.

Just stick with these two things and nothing else.

The good news is reflux does resolve itself in time and you are already 8 months in.. By 18 months old you usually see a big improvement, in the meantime its hard going, just hang in there. I know how you feel. x

Her symptoms before starting neocate:

• Feeding issues:

Arching back, gulping, choking, clicking sounds.

Throws head back.

Spits up milk frequently.

Sometimes will refuse then food, take it then turn head away and arch back and put legs up to chest and spit it out her mouth

Unsettled and irritable after eating

Possible posterior tongue tie

• Digestive issues:

Has had diarrhoea consistently. Green bubbly runny foul smelly poo. Before this she had constipation for many weeks.

Gas also smells very bad and she sometimes cries when passing it.

She is very gassy in general.

Continuously putting knees up to chest and turning red holding breath.

When I touch her tummy sometimes she’ll cry and tense up.

Always wriggling sometimes will turn red hold breath and cry

Cries on her back sometimes will scream

• Sleeping issues:

Has trouble sleeping, sleeps from 3-8 hours. 8 hours is very rare, only if I’m lucky

Wriggles in sleep putting knees up to chest

Will not sleep on her back so I HAVE to make her sleep on her side otherwise neither of us will get sleep

I hold her up for hours and burp her and when I put her down she’s still very gassy

Sleeps with mouth open

• Rash:

She constantly attracts thrush on her genitals and nappy rash.

Sometimes will have rashes around eyebrows after feeding

• Breathing issues:

Sounds very nasally congested all the time

Breathing loud

Sneezing and coughing a lot. Multiple times a day

Makes grunting noises sleeping especially

Will scrunch up her face in pain while doing it

Only symptoms she still has is reflux and weird noises In sleep x

@tink09

We’ve been where you are now and you have my sympathy. I’ve sat and cried on the kitchen floor feeling helpless.

We tried so many combinations and ended up with CMPA induced anaphylactic shock, growth issues and recurring infections from aspiration.

Neocate did nothing for our DD and in fact seemed to make her more uncomfortable, it’s a very thin consistency so caused reflux to worsen.

It took a completely CM and soy free diet. We couldn’t even use “may contain”. She had nutramigen milk (it’s thicker) and a combination of lansoprozole and domperidone.
This changed our life and made for such a happier baby.
We were then able to introduce soy after she was 12 months.
It took until age 10 to get rid of the epi pen for CMPA. She can now tolerate CMP.
She is 11 and has never been able to come off the Lansoprozole. We have a few flare ups, but it tends to be triggered by something.

I’m too scared to keep changing her milk especially if it’s not extensively hydrolysed. I’m lactose intolerant myself x

@Iminaglasscaseofemotion

Have you tried not burping her so often? Burping can make reflux worse. My 3 mother old is really struggling with reflux. She's on omeprazole, but I don't really see it helping, and she absolutely hates taking it. Chokes, screams and spits ot out now, so it's useless. Also I wouldn't do any bicycles moves or tummy runs as this will push the liquid back up her tubes.

Yep! Made her worse x

Interestingly Nutramigen at the time was the most hydrolysed formula available at the time. This was one of the reasons she was prescribed it. The other reason being is that neocate can be known to make reflux in under 12months worse.

At your next appt ask about a PH Impedance study. This was probably the best thing we ever did for DD, it showed how severe her reflux was and meant paeds got a hold on it a lot quicker.

I could have written this about my little one, it is truly soul destroying! He is also on lansoprazole which only seemed to have an effect after a good 6 weeks, however the main thing we found made the difference was a thickener called Thixo-D, it is not usually used for babies but was on the advice of hos dietician as he also had a reaction to carobel and could not tolerate gaviscon or thick n easy. It seemed like the thickener have the formula a chance to stay in his stomach long enough for him to settle to sleep without refluxing as bad. It may be worth a shot?

@tink09

Interestingly Nutramigen at the time was the most hydrolysed formula available at the time. This was one of the reasons she was prescribed it. The other reason being is that neocate can be known to make reflux in under 12months worse.

At your next appt ask about a PH Impedance study. This was probably the best thing we ever did for DD, it showed how severe her reflux was and meant paeds got a hold on it a lot quicker.

I think it has soya? She’s allergic to soya x

@Dugi3

I could have written this about my little one, it is truly soul destroying! He is also on lansoprazole which only seemed to have an effect after a good 6 weeks, however the main thing we found made the difference was a thickener called Thixo-D, it is not usually used for babies but was on the advice of hos dietician as he also had a reaction to carobel and could not tolerate gaviscon or thick n easy. It seemed like the thickener have the formula a chance to stay in his stomach long enough for him to settle to sleep without refluxing as bad. It may be worth a shot?

She’ll sleep for about 15 mins max on her tummy then will keep wriggling lifting her bum and will eventually wake up x

I don’t know if it’ll make a difference as she doesn’t throw up, she has silent reflux x

@Dugi3

I could have written this about my little one, it is truly soul destroying! He is also on lansoprazole which only seemed to have an effect after a good 6 weeks, however the main thing we found made the difference was a thickener called Thixo-D, it is not usually used for babies but was on the advice of hos dietician as he also had a reaction to carobel and could not tolerate gaviscon or thick n easy. It seemed like the thickener have the formula a chance to stay in his stomach long enough for him to settle to sleep without refluxing as bad. It may be worth a shot?

Just checked it, it’s basically the same as thick and easy. A thickener I used which made her scream x

It doesn’t contain soya. My DD had soy and CMP allergy. It’s a prescribed hypoallergenic formula. It’s thicker than neocate so can be better if it’s for a baby who suffers with GERD.
I think you need to start pushing for investigations incase they’re missing something.
Allergy screening
Bloods
Xray
PH study.
These are all good places to start. Be firm and push at your next appt for something to be done.

A baby swing?

Swinging motion helps free trapped wind.