21 week old not feeding at all - back to hospital??

[JoandMax]

Hi,

Am posting in a few places as need some urgent advice.

My 21 week old DS2 iAs bottle fed, has had feeding issues since about 5 weeks. We are on ranitadine, doperidone, omeprazole and gaviscon. Have tried Nutramigen, Neocate, SMA Staydown and no difference.

Last month things got to tSXhe stage where he would scream after one suck so we syringe milk into him. Got home yesterday after 8 days in hospital with him being fed by NG tube. Came home with Infatrini and to start weaning. Only been home 24 hours and in that time he has probably cried for around 6 hours in total and only had 100mls of milk and 2 teaspoons of solids......

He is having a barium swallow on 24th but am at my wits end. I feEl like I'm going mad, the doctors were patronising as anything and just kept saying the reflux meds should work and they could see nothinG orgnaically wrong and the NG tube wasn't a solution. But there is something wrong, he screams in agony and it's getting worse.

I tink he needs to be back in hospital but I hate the thought, DS1 is only just 2 and found it very difficult with me being awa plus I missed him dreadfully.

Anyone had his, what else could it be and what can I do?

Not been through this exact thing - DD1 had severe reflux (ranitidine, domperidone, Gaviscon, multiple admissions) and it was hellish but by no means as hellish as your current situation sounds. First off, just wanted to say how sorry I am that you're going through this - it really is a living nightmare at times. We fed her expressed milk and I cut out dairy from my diet which seemed to help her loads. She's nearly two now and although it has got much better recently, she still has major taste and texture aversions.

Have they ruled out pyloric stenosis, or is that what the barium swallow is for? Are the doctors positive that they have him on the optimum dose of all the meds or have they just stuck him on the minimum dose - if not, then this could be one of the issues since it took us a while. Have they calculated the exact dose based on his current weight, for instance? And on this subject, how is his weight gain?

Since he was discharged so recently, does your hospital have a number you can call for the children's ward to talk to a doctor or paeds nurse? My first thought when you mentioned the advice to feed solids was that this might actually make the situation worse (I HATE it when doctors tout introducing solids as the ultimate solution to reflux, it often isn't!). I think that if he continues not to feed then the only solution is a return to hospital. I imagine you've tried everything from feeding him sat upright to distracting him with TV / book / anything whilst you give him food. It sounds like the hospital need to book you an urgent appointment with a dietician as well as having an ongoing schedule of outpatient appointments to monitor his progress.

I'm not sure I've been any help at all there but have an un-Mumsnetty hug from me because reflux is just so, so horrible to deal with and really stole a lot of the joy from DD1's first year of life for me, DH and her.

Thanks, it is awful. I hate seeing him in so much pain and not thriving. His whole babyhood has so many negative memories for me when he is so lovely and smiley some of the time. Just hate hate hate not knowing how to help him......

He is on maximum doses of all the meds now, they were increased when we were admitted. Dietician recommended weaning and high calorie milk but just can't get him to have any.

He put on 13oz while having the NG tube, is nearly 17lbs now - had only put on 7oz in the 8 weeks previous (was 10lbs 15oz at birth so plenty of reseves!).

He's isn't a particularly sicky baby so I don't even know if it is reflux, but no idea what else it could be