HEEEEELP! Please - feeding problems

[feelingbitbetter]

DS has become a nightmare over the last week or so. He has gone from being s super guzzler of his milk to not drinking moer than 100ml at a time.
He has also started posturing/wriggling and crying during his feed, was every now and again, but now it's nearly every time.
He twists himself away from the bottle, like it's battery acid or something, cries, then tries to pull it back coz he's hungry, drinks perhaps 2 mouthfulls then starts again.
He is arching his back, pushing his head back and pushing really hard with his feet (reflux?????)
He has just had about 100mls of his feed in 40mins (used to be able to polish the lot off in 10 mins) before giving up, crying in my arms. I've put him on his playmat to type this and again he cried and was pushing with his feet to try and turn over. I've propped him up on his side a bit and elevated his had which has provided a bit of relief as he has nodded off. He still has 100ml to go and his meds are in this feed so I need to get it down him. He will take it all eventually but it's becoming such a struggle.
Sometimes, it goes like a dream. generally, his night feeds are much easier.
Any advice pleeeeaaase?
I hate seeing him like this. He really does seem to be in pain.Could it be a problem with his milk? We had a problem with the powdered stuff early on so we switched to the ready made (costs a bleedin' fortune) which he has been fine with, until now.
Could it be the volume?
I should add that he had started to vomit a bit (not much - little mouthful or so) after feeds and sometimes an hour or 2 later? He hardly ever brought any back up before, only the last week or so.
All help gratefully received. Can't get appointment with GP today and I suspect they will be reluctant to do anything anyway

The frustrating answer is that we don't know. Massive brain damage (almost total loss of upper hind brain) caused by neonatal hypoglycaemia at 2 days old, persistantly fitted for a few more days. Then, after they told us he would die he decided to get better and has been on the upward spiral ever since.
He had very high tone originally, but it has decreased massively and he handles quite well now. he is delayed developmentallyand tactile defensive. Physically he is very strong, can hold himself well, but has a strong preference for his left side. He also has some degree of visual impairment - originally thought to be cortically blind, but has developed a bit of visual awareness now. We have his test on 9th Jan, so we'll know for sure then. He's also at very high risk of epilepsy. So, from that you can see that I pop on treads all over the place. The thing about hypoglycaemic/hind brain damage is that nobody knows how things will turn out. Sometimes, tho I hate to think it, I wish somebody would say CP or anything really, other than wait and see.
So, as to the diagnosis, I'll get back to you in a couple of years!!

that's interesting - dd2 presented similarly... (not the same pattern of damage), neonatal szs and extremely high tone (which decreased from about 10 months and she now has v low tone apart from some intention tightening and achilles lol). we managed to overcome the tactile defensive issues over the first couple of years (mostly with persistence and baby massage/ stroking), still has some issues with sounds (instant high tone and startle reflex)...
no visual issues left except an alternating converging squint and glasses...
we had wait and see until 2. they initially said spastic quadraplegia. at 4 they changed dx to athetoid cp, which better fits the clinical presentation and MRI... so don't rush for a dx, because they might tinker with it anyway - - useless saying that to people, as all i wanted was a dx, but in hindsight i can see why they were reluctant lol. dd2 has also always showed a strong left bias. initially she refused to do anything with either hand, but the left freed up. we got to 3 or 4 before the physio and OT agreed that we had functionally achieved all that we were going to with the right hand, and so to work with what we've got, but she has made tons of progress.
looking back, it is fairly obvious that we misread a lot of cues that would have let us to the 'right' dx sooner, but it wouldn't really have changed anything.
it sounds like he is doing well given the stuff life has thrown at him so far! good luck!

How is the feeding going feelingbitbetter?

Much better again today. He is still taking a long time over the feed but it is staying put now . We've had a couple of wriggly feeds but NO crying or arching, so I hope we're over the worst.
His outreach nurse came today for her final visit and she thinks it might be an idea to start weaning in the next week or two, just with some baby rice. He is a very hungry (and chubby) boy, so I may give it a go next weekend when DP is back home.
Gabe is so much more settled today, has had a couple of proper naps too. He hasn't been sleeping well at all during the day and I wonder now if it was because he was uncomfy (didn't really notice at the time ), but he hasn't even cried today, been happy and smiling and even had some time in his new jumperoo without being sick.
So, at the moment, all is well.
Thank you for asking DHT

Brilliant!

If he keeps taking a long time feeding, consider changing the flow of the teat to a faster one i.e. bigger hole/more holes.

I found that gaviscon would often thicken the milk so much that the holes would block and I had to remove the teat and pour boiling water over it to unblock (let cool before letting ds drink again!).

Ooh solids! Another milestone!

re changing to a faster teat - if he does have co-ordination issues on top of the reflux(ish) then this might not work and may make the situation worse - for dd2, slowing down the transit of liquid through the mouth helped, speeding it up made her gag retch and choke! hope solids go well - it was a life changer for us xx

I don't think I will change the teat - he has had this speed for ages now with no problems and its fast flow anyway. We have started to try him with a cup for water(one valved, one freeflow) and he is doing very well on both. Bit damp , and I'm not sure how much is actually going in from the freeflow one , but he is having a much lesser problem than I expected. Doesn't really gag or choke, just spits it back out if theres too much (over me, mostly)!
I'm feeling a bit more positive about solids now, wasn't entirely sure what to do and was going to try to hold out till 26 weeks. I was confused as to whether starting sooner would cause more of a problem IYKWIM even though he will take longer to get used to it, but now I think I will give it a go and see. We can always try again x

Just a quick update.
Weaning has begun! And it is going unbelievably well. Greedy little piggie loves it . Not too keen on baby rice (is anyone?) but loved it when I added some banana. Even had a few tiny lumps in it, no choking or coughing - can't quite believe it!
Though I'd never dare post on the weaning thread (scary, scary place) I've found he is sleeping much better now (nobody over there would believe me ) and reflux problems vastly inproved (no Gaviscon for 4 days now ).
So, all good at the mo!
Thanks again for all your help.
No need for any response, just wanted to let you all know
P.S. piccies on profile of the boy enjoying his first taste of banana, if you want to look xx

He is SO cute!! Hope all continues well with the weaning and feeding.

Oh CUTE! Glad he's feeling better. My little man (the NT one) had reflux and it was horrible - was on meds for quite a few months. Hope the weaning continues well. He always looks such a happy little soul in your photos!