Silent Reflux Disease & Severe Cow’s Milk Allergy

[Louise035]

Hi all,
My daughter is 11 weeks old. Since around 1.5 weeks, we have had a very difficult journey with her. We finally say a paediatric gastroenterologist 1.5 weeks ago who upped her dose of Lansoprazole to 3.75mg twice a day. This was after a month of 2.1mg once a day. He told us that he would expect us to see a 70-80% improvement in 7-10 days. We are day 8 today and things seem just as bad as ever. He has advised that she may need to start on another medication alongside the Lansoprazole - namely Cimetidine since Ranitidine has supply issues.

Has anybody found that combining the two medicines has had an improvement? I always thought Lansoprazole was the next step up so would have been more likely to work than the Rinitidine/Cimetidine?

I feel like I’ve lost all hope of ever making her comfortable enough to lie down and to be able to go through a day without screaming in pain 🙁

Hi I can't comment on the dosage amounts or names of the meds as it is 8 yrs since I went through this but I wanted to post in solidarity in that I went through this and survived. I know the hard time you are going through right now.

Good news is, my daughter is now 8 and can eat dairy without any symptoms really. Drs did tell us initially she would prob grow out of it by age 3 but it was actually 7. She get a bit of itchy skin and it affects her mood if she has lots but can eat a normal daily amount in her diet with no complaints.

In the mean time. I would forget putting her on her back as it just makes the acid come up for them. Bath time, we used a tummy tub. It is like a sitting up bucket they hang their arms over.

I mainly carried her in a sling out the house, I found a mai tai type the most comfy. She just couldn't lay in a pram or she would scream.

In terms of sleep (what is that) I laid her on her front to sleep as it was a toss up between going against SIDS guidelines and baby being awake 24/7. It really did work. Mine had SUCH a strong neck due to all the writhing in pain so I was happy in my decision as she could move her head from side to side. I did this from about 2 weeks old so with yours being loads older this is something you could try out.

Sorry you are going through this. It is so hard, my baby didn't stop crying at all. I didn't have any more children as it was all too traumatising.

Oh and dd's reflux wasn't silent. She would projectile vomit pure acid sick more than 50 times a day, it was hell.

Things hugely improved when I started her on solids at 16 weeks under the Drs advice. Once heavier food was able to stay down it brought some relief

Are you bf or ff?
If bf have you cut out soya too?
If ff which formula are you using?

Thank you @Juanmorebeer - I’ve definitely thought about laying her on her side/tummy and using the movement monitor which we got with our monitor. You’re right - it’s so hard! I’m glad your daughter manages with dairy in moderation now. The paeditirican diagnoses silent reflux as a lot of the time she does gulp and then scream but the rest of the time, she is throwing up clear acid. It actually smells like proper sick rather than the typical baby sick smell. I’m really interested in weaning at 4 months - I know that was the advice back in the day and that my mum weaned us all then!

@selfsettling3 I tried to breastfeed but it didn’t work out due to a number of reasons. We’ve been on every formula under the sun but we’re on Alfamino now. Thankfully, that’s relieved her horrific constipation at least!

I weighed it up and researched it and by that point I was willing to try anything. Happy to say for us, the early weaning was definitely the way to go and it was acrually EASY, not like feeding her for the first 4 months of her life.

I know the acid smell you mean. Her nappies were also the same, slimy hair gel like vinegar, disgusting.

If you do an advanced search there are quite a few threads on here from over the years for CMPA/CMPI I found lots of support.

I believe Alfamino is generally considered to be the best. There is a great CMPA Facebook page.