Reflux and medication drama

Apparently, reflux is very common in PRS babies and we have struggled with it very much with Rosie. She has had a lot of vomiting and a lot of classic reflux discomfort movements (throwing head back and arching her body back into a banana shape). When she first came home it was awful trying to manage it and seeing her in so much discomfort every time we fed her .

We have finally got it under control with taking omeprazole 2.5ml twice a day and having Gaviscon infant 2 sachets with every feed (she is fed 6 times a day)

Unfortunately, that made her very constipated and she now needs lactulose 2.5ml twice a day too... 

It is a lot to manage and keep up with but she if finally a lot more comfortable and keeping her food down. 

There have been a lot of difficulty with managing her prescriptions with the pharmacy - they initially wouldn't make the omeprazole up despite that being advised to do in the prescription. Her dr also didn't want to give her that much Gaviscon without speaking with her dietician, but instead of calling us to discuss they just cancelled the prescription so we didn't know until we went to pick it up when she was almost out of it!

Video showing the reflux discomfort prior to correct medication allowing it to be under control - this was every feed:

Video showing the amount she would vomit multiple times in the day:

Now we are dealing with challenges over how long her omeprazole and lactulose should last her. The pharmacist calculates that we are requesting it a week earlier than we should based on the amount given, but they aren't accounting for wastage when pouring the liquids into the lid to then syringe up. It definitely does feel like a constant battle and often Rosie is the one losing out and being left without medication she needs. My husband had to go to her doctor and wait over an hour just to bring her syringes to demonstrate that what they are prescribing doesn't last - they finally authorized an increased amount to account for wastage, but it's just another thing we didn't need to have to battle over with everything else.