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Original poster

12week old on feeding tube with alfamino and omperzole

21 replies

LDriver1 · 06/06/2022 02:00

My 12 week old baby boy has a heart condition which makes his heart work a lot harder so he uses too many calories and isn’t gaining much weight so has been put on a feeding tube using alfamino formula as he has a suspected soya and cows milks allergy. At the same time the hospital have started him on omperazole.

Now most of his awake time he is squirming or crying which is SO unlike him as he was the most content and happy baby before this.

Anyone with experience in this? Could it be the formula or omperzole causing him so much discomfort?

Please help as I want my content boy back!

OP posts:
Coachwork · 06/06/2022 02:08

I have a feeding line. Omeprazole is just a PPI to stop acid. My first thought would be is the line sited properly? Also is it an NG or G tube (I have no stomach.) I've an NJ currently and would describe it as uncomfortable. But a J (or G) can be painful. I have a nurse I can call, if you don't I'd give the hospital a ring and raise your concerns.

ProclivityForPyrotechnics · 06/06/2022 02:10

Is he windy? I know it's a feeding tube but could be need winding?

Original poster
LDriver1 · 06/06/2022 02:12

It is an NG tube. We are still in hospital and they have even moved tube 1cm more down and PH tests are coming back correctly. I did ask if tube could now be too far down but was told it would just curl round and wouldn’t poke stomach.

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ProclivityForPyrotechnics · 06/06/2022 02:15

Is the feed on a pump or are you doing gravity feeds? I'd try and slow the feed time down so it takes about 15 minutes.

Maybe try your gp?

ProclivityForPyrotechnics · 06/06/2022 02:15

@LDriver1 yeah that's right it just curls around on itself

ProclivityForPyrotechnics · 06/06/2022 02:18

@LDriver1 ask your nurses. It could be that he's uncomfortable or it could be he's feeling tired and horrible be use he's having to work so much harder than other babies?

Saying that some babies do better on neocate for some reason.

Original poster
LDriver1 · 06/06/2022 02:26

He does seem windy but nurses says that he doesn’t need burped but will try it.

We do gravity feeds and he only gets between 15-30mls each time after I breastfeed. We do it slowly.

OP posts:
flapjackfairy · 06/06/2022 04:22

maybe now he is getting better amounts of nutrition he has more energy to actually show how he is feeling as it were. He may have been working so hard before to stay stable that he didnt have the ability to do anything else.
plus he is reaching the age of being a bit more aware so that might be another factor.
How long has he been on the tube ?

Toddlerteaplease · 06/06/2022 04:49

We recently had a baby at work on Alfamino. Omg it stinks!

Toddlerteaplease · 06/06/2022 04:50

He's also getting to an age where babies get colic.

Toddlerteaplease · 06/06/2022 04:52

What size tube is it? At that age I'd put a side 6 down. If he's got an 8 it might be too big and making him uncomfortable?

Original poster
LDriver1 · 06/06/2022 05:42

Tube size 6 thank you though

OP posts:
Original poster
LDriver1 · 06/06/2022 05:42

So although he had poor weight gain and working hard to keep heart well he has always been such and active alert baby so if he had been in pain he would of let us know.

OP posts:
ProclivityForPyrotechnics · 06/06/2022 06:16

@LDriver1 it's not about him being in pain previously. Previously he was knackered just eating and sleeping. Now he doesn't need to expend energy on eating he can tell you he's not happy now when before he might not have had the energy.

Gunpowder · 06/06/2022 07:35

My DS was definitely uncomfortable when he was on omeprazole. It was immeasurably better than the silent reflux, but he was squirming and farting lots. I used to do lots of gentle pushing of his knees up to his tummy to get the farts out!

I felt we had fewer pain cries but more fussiness after he started the medication.

Original poster
LDriver1 · 06/06/2022 08:56

My son has never had any pain with his reflux, he has just done one large projectile vomit a day and was smiling straight after hence why this is so hard to see him so upset and in pain.

OP posts:
Gunpowder · 07/06/2022 20:23

That must be really hard. I’m sorry. Is it worth having a conversation with the paediatrician about whether the omeprazole is necessary on top of the new formula? I think it’s ok to explain you think he is uncomfortable and ask the doctor about it, you know him best. If they say that there is no alternative that’s one thing, but I think it’s always ok to ask questions.

Original poster
LDriver1 · 07/06/2022 22:19

I can confirm it was the feeding tube causing him such pain. Our heart nurse removed it and since then he has smiled constantly. We are still using omperzole and just giving it to him orally and hoping he keeps up with his breastfeeding so no need for tube.

OP posts:
flapjackfairy · 08/06/2022 07:02

oh great ! So glad he is happy again . x

Flopisfatteningbingforchristmas · 08/06/2022 09:14

LDriver1 · 06/06/2022 02:26

He does seem windy but nurses says that he doesn’t need burped but will try it.

We do gravity feeds and he only gets between 15-30mls each time after I breastfeed. We do it slowly.

If he is allergic to cows milk and soya and your bf you need to have a soya and dairy free diet too.

Gunpowder · 09/06/2022 01:30

Oh phew. I’m so glad he’s happy again.

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