Pls help reflux and failure to thrive

[immy]

Hi I have a little girl 10 months old (7 months corrected) born 25 weeks and 5 days weighing 550grams.
She was diagnosed with reflux at about 5 months old. Her reflux got so bad she now refuses to take the bottle and has done so for several months now. She is being fed via nasal gastric tube. She is on 6ml of Omeprazole twice a day, 1ml of zantac 3 times a day, 0.5 ml of Erthromycin 3 times a day. She now only weighs 5.1kgs. She is having a little bit of solids 3 times a day but not overly interested however I keep trying. I put 160mls down the tube 4 times a day. I have also tried smaller amounts at regular intervals however it doesn't matter how much she will still throw it up. A good day is 2-3 times throwing up.
We continually play cat and mouse with her weight. I have been to a gastro who just referred me back to my paed saying we should give the above medications. We have also been told to give coloxal twice a day.
I find I can't move her for hours after her bottle sometimes she will throw up 3-4hours later.
Due to this and obviously being a premmie she has failed to thrive, body mass very weak and like a 4 month old baby.
Is there something else my paed. should be doing? Please help????

[RISA]

Hi Immy,
Wow, it sure sounds like your little girl must be a fighter!!!! I’m sure you know how blessed you all are, butthat doesn’t make it any easier to go through what you have to right now. Does she have any other issues as a result of her being so premmie?

Some of the things I can think of are-
- Getting another gastro appointment as things haven’t really improved. How long ago did you see the gastro?
- I presume you are seeing the range of allied health professionals as well? (and if not, it sounds like you should be)- dietitian, speech therapist, physio and occupational therapist?
- Increasing her medications as there are a wide range of dosages used and its possible she would do better on a higher dose too.
- Trying continual feeds rather than bolus, if you haven’t already tried that.
- Have you tried feeding her overnight on continual feeds?
- If she is constipated, that can flare her reflux, which of course will make her vomit and can cause her to be not interested in food. A lot of doctors recommend Movicol now, rather than coloxyl regularly, so that might be worth asking
- Have you tried thickened feeds? That may help reduce the amount of vomiting she does, and therefore help her gain weight. Some feeds thicken in the stomach rather than being thick already, so you could investigate those. (it wont stop her refluxing though)
- What formula is she on? There are a lot of refluxers who also deal with food sensitivities, so I wonder if that is complicating the picture as well. Have they tried an elemental formula to see if that makes any difference to her? Neocate or elecare?
- Trying to give her an antacid before a feed to see if that helps her tolerate solids any better? Or at least be interested in them. If food allergies/intolerances are an issue that can explain her lack of interest too, though of course just straight reflux can make her less than interested in feeds too.
- Joining a support group if you haven’t already. There are support groups for premmie bubs, and also for reflux bubs. That can make a big difference to how you cope too, and I personally think having support from other families in the same position is essential.

Hopefully that has given you some ideas. I’m sure you have tried some of them already, but there may be some ideas you haven’t, and I hope they help. If you would like any further information about our group, please ask.

Glenda