whats GPS? Ive just sent you a PM :-) I totally understand how you feel, we are going through exactly the same process, and because my daughter isnt fail to thrive they dont want to know, or think shes fine! it really is wrong, big hugs xxx

Hi Mum of 1

Where in NZ are you? So many things you say sounds like our situation.

With my first son we also saw a number of GP's at a medical centre and saw 3 private Paeds before we got the appropriate treatment for him. By that stage he had developed oral aversion and had 'chronic oesophagitis'.

With my second he was seen by 2 different private Paeds (one who said he was a normal healthy baby and advised to just keep breast feeding) before he ended up admitted to hospital with dehydration and had an NG tube inserted at 14 weeks old and things eventually got sorted for him.

SO don't give up - YOU know best if things are not right and you'll have to do your best to find someone who will listen. It sux but our current (fantastic) Paed who has an interest in feeding problems says GP's would very rarely see babies with these kinds of feeding difficulties, if at all in their entire career.

If you want to p/m me I could send you a couple of names of people in Akld who could help?

Good luck

I had baby's 9 month check today. Baby still refusing to drink/eat so asked if they would watch baby drink. They said they didn't have time today. But after I had confided that this is all taking its toll they had time to suggest going an getting some antidepressants! I am so mad! It took longer to discuss this than it would have to watch my baby drink -since baby doesn't drink!!! Plus I filled in another PEDs form listing my concerns. What the point? Nothing is done. Baby has put on good weight again and healthy. So apparently it is my problem??

So frustrating for you.

Re Dr Reddy's Omeprazole vs Losec, the funded Omeprazole is now Omezol. This may be better tolerated than Dr Reddy's Omeprazole was.

My Plunket nurse told me she has a theory about there being a lot of reflux in the suburb i live and she thinks it could be due to a cell phone pylon - I am not kidding, she actually said that! I am therefore not doing Plunket with my second son....

Feeding difficulties are so stressful and often misunderstood even by health professionals, and can be perceived as being a problem with the mother. It sucks you are not getting the support you need.

Is there a family centre near you where you could make a time to have someone watch you try and feed?

I went back to GP today. As feeds becoming even more difficult. They are finally going to refer to paed! 7 months later! We went private before. After I left there I walked to a family centre. My baby had only had 25mls since 7pm the night before. So I explained our history all over again to another nurse and she rang the area manager who came and said our case is an urgent referral for speech therapist. I felt listened to for the first time and finally felt like someone got it. I just hope new paed and speech therapist can finally make a difference. Hope is a powerful thing and it was really hard when we had not many other options. I am so glad that this forum exists as I would have thought that we were nuts and that no other parents have ever experienced this when your GP and other professionals just say your baby is fussy.

That is so great finally you getting the help you need and once you are in the system things happen fast specially with little ones as we have totally found out, i hope they can help your bub drink more, our hope crashed after a whole week in mother craft not even one suck on the bottle so now her NG Tube will be taken out and replaced with a Mic Key Button into her stomach But the nurses at mother craft were amazing trying to help us for that week so do mention Waikato Mother Craft to your Pead. Good luck and keep us updated

Mumto5 - I think there are others here who gastrostomy feed - not sure but I certainly do and have done for nearly 3 years now with my then nearly 4 yr old.

So don't hesitate to PM if you want to bounce anything around, vent about the nights you feed the bed instead of the child etc - BTDT here

Have you asked about a nissen too?
I've been told that a gastrostomy changes the shape of the stomach slightly and so can increase reflux (potentially anyway)and so they often do both ops at the same time. Thomas had both at the same time. He had his tube re-sited in April so I know a bit about recovery times with and without the nissen - although T's re-site was apparently tricky and took way longer in theatre than anyone had expected.

Mum to 5: I just checked out Mother Craft unit on the net. It looks like a great service for Mums. I don't live in the areas that can get referred there. But thanks for suggesting it. I wonder if there is something like that in other parts of the country? Nothing like that has ever been suggested by anybody I have spoken to. It is amazing that the Mum has to do all the searching for info and you don't even know that these things are out there when health professionals know that services like this and speech therapy etc exist.

Mum of 1, Is a awesome place, I saw babies change so much in the week I was there, it was amazing. This is the only one in the country so thats a bit rough. You are very correct that you have to do the searching, Im not sure why we cant get this info easily maybe its just cause the health system so busy or they just dont care enough, who knows but good luck. I have PM you (well new to this so I hope i did lol)

Mum of 1, good that you ahve been referred to someone. It might be worthwhile seeing if you can spend some days at the Family Centre you went to. That way they can see how a day goes (rather than just one feed etc) and build up a history which may be useful when you are referred to someone else etc. Good luck and hugs.

Just an update.

Our paed is going to refer for a scope to be done. Has anyone had this done with their baby? Is this the best approach?

We are now on 20mg of losec. It has made a slight difference in that baby is now drinking 50mls and sometimes up to as much as 100mls stopping and starting before I need to use Youtube/video to distract. In the month prior it was so hard that baby was always refusing the bottle and even with distractions it was such a battle. I am still unable to get any solids into them without any Youtube/video apart from one or two bites on a rice cracker on a little suck at a banana or another similar finger food before they are thrown away.

I am hoping the scope is the best approach to see what is going on. Quite invasive. Will it be helpful or a waste of time and extra scary procedure for my baby. But don't know what else to do since already on a very high dose of losec and still hates eating. We have the speech therapists input now too which I am hoping will be helpful.

In other parts of the country there are units such as the Mothers and BAbies unit in Christchurch, but this is mostly for mothers who have severe post natal depression - common enough for mums coping with reflux. Family centres are another good place to get support.

My daughter first had a gastroscopy at four years of age. It does give a good amount of information.

Hopefully with the increase/addition of Losec you will see more of a change. It can take up to three weeks to see the full effect.

Hang in there. Glad you are getting help.

Been a long road for you, keep updating here as I always check to see how you and your bub are doing. Good luck with the scope hope it helps. Glad the losec increase is helping out a little bit, maybe the paed will increase it again since there has been a change but not a huge one. Hope they get you guys thru fast so you not waitin for a long time for the appoinment. Good luck Just remember you are doing an amazing job