anybody using milk free formula?

[grace]

Ami has started on a milk free formula as we are trying to control her gastro-oesophagul reflux disease. anyway, i only started yesterday so havent really seen any results yet but oh my goodness it smells its starchy and horrible.

then when she actually is sick (every 2 hours usually) it comes back up smelling even worse. its like vinegar i hate vinegar and now my lovely baby smells like it all the time

its a good job shes gastrostomy fed cos if she was bottle fed i cant see how she could stand the taste. does anybody have any experience of this stuff? its called Neocate and is prescription only, its powdered too so i have to mix it up and add thickener which takes AGES cos it doesnt mix well at all.

 

[sananbaz]

Hi
My son is on hypoallergenic milk formula (nutramigen - similar to neocate and apparently tastes worse!!!).
He had trouble for a few days when we first introduced it because he was used to breast milk or cow and gate. Pretty soon he accepted the taste and has been on it for four months now (because of reflux and milk intolerance).
The vinegar smell that comes up with the sick is stomach acid. The reflux means that formula mixed with stomach acid is allowed back up the oesophagus and out of the mouth.
Is your daughter on any antacids to prevent damage to the oesophagus? If not, i would ask your paed about it because it is the acid burn that causes pain too.
Not sure why your little one has the gastrostomy, but an antacid can be given either by mouth (if possible) or via the tube.
If the reflux is caused by a milk intolerance, it can take quite a few days to start noticing a difference (or, like my son, she may also need other drugs too!).

HTH

S xx

 

[grace]

she was an extreme prem born at 25 weeks and has had a lot of problems, so she was never able to bottle/breast feed. she cant suck properly to get any milk from a teat but can take a tiny amount of baby rice/baby food which we have just introduced. all her milk feeds are via gastrostomy, as are her meds.

at the moment she is on omeperazole (6mg twice a day) and erythromycin (.8ml 4 times a day) and her feeds are thickened with thick and easy. they werent really helping and this yukky feed doesnt seem to be either! the vinegarness is awful, at least with the nutriprem the sick smelt like sick - now its like regurgitated salt and vinegar crisps (sorry TMI) and i hate vinegar! my poor little girl.

what is your LO taking medication wise? we are trying everything at the mo, the final resort is a nissen fundiplocation, a surgical procedure, which i really dont want her to have as they will have to put her to sleep again and apparently it has as many disadvantages as it does advantages. one being that she will never be able to be sick again so if she gets gastroenteritis it would be a nightmare. she wouldnt be able to burp (not that she does now though) and she would have a very restricted diet.

i will stick at the Neocate, as you say she may well settle down with it.

how is your little one's reflux? is it a constant thing? is he otherwise healthy? hows his weight gain? (sorry for the 20 questions!!)

its awful when you cant do anything for them isnt it? it breaks my heart when shes sick and she screams in pain

 

[sananbaz]

Hiya
I know what you mean about feeling sorry for your lo being sick all the time - my son is nearly seven months now and i think we have finally got this reflux thing under control!
He's on ranitidine, domperidone and gaviscon; so similar to the drugs your daughter is on except the domperidone, which speeds up the exit of food from the stomach into the intestines (hoping that the less time it spends there, the less likely it is to come back up!).

Wow, born at 25 weeks, that's amazing. I can't imagine how tiny she must have been - my son was a week late and weighed 11lb 5oz!!!

Apart from the reflux, my son also had pneumonia shortly after birth and spent time in the SCBU - somewhere i guess you know very well. He's been ok otherwise but his weight gain does cause me worry. He's dropped five centiles on the chart so far and he sees a dietician, paediatrition and health visitor regularly. He's kind of out of proportion because his length is on the 91st centile, his head is on the 98th centile and his weight is just below the 25th - he's a long skinny boy!

I guess weight gain is a big concern for you too, as your daughter started so tiny and isn't keeping food down. Thankfully, my son was never bad enough to even talk about possible surgery, so i don't know much about it but you must be very worried.

I hope the change in formula starts to work soon - neocate is the least allergenic they do so hopefully that's a good thing.

Good luck, and try to take one day at a time, knowing that she will eventually grow out of it (that's what kept me going anyway!)

Hugs

S xx