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Has anyone been through this...

(13 Posts)
MsPickle Tue 18-Jun-13 19:11:29

Fingers crossed that the reflux meds do the trick. Glad you get to go home at night as well. Let us know how you get on.

NobbyD Tue 18-Jun-13 09:34:35

Thanks everyone.

An update is we are still in hospital! Ds has had every test in the book from bloods to MRI brain scan. Waiting results of that.

He has also switched to neocate milk which is for cows milk intolerance although I'm not convinced. We should be seeing dietician today.

We have a new consultant who thinks its just reflux and has given ton of medicine for that.

He still feeds very little, about 60ml a feed if we are lucky, every 3 hours. His mood has lifted a little, even had a few smiles so something must be changing. But he has lost weight or puts on v little and he won't be discharged until he puts on 50g a day which would equal 90ml a feed.

At least we do get overnight home leave or I'd be going mad myself!

MsPickle Sat 15-Jun-13 18:59:08

Philbee if you're in Lambeth/Southwark try one of the milk spot sessions at the children's centres. Great places.

OP how are you doing today? I've been thinking about you. Continuing to wish you well

philbee Sat 15-Jun-13 15:13:17

I thought so! I am thinking of contacting one of them again as we still have a v noisy latch, and I can't work out if it's ok or not.

MsPickle Sat 15-Jun-13 08:33:50

Yes Philbee, that is she! Claire Kedves is who spotted my ds's posterior tie when everyone else was at a loss. She saved my sanity through that! Katie Fisher was our saviour with DD and we found her very approachable on the phone and email.

philbee Sat 15-Jun-13 07:35:15

We went to the TT clinic at King's this week and saw Katherine Fisher (think that is who you mean MsPickle?). It was very helpful although we weren't having anywhere near as serious problems as you, OP. There is also an infant feeding coordinator at King's, Claire Kedves, who can diagnose tongue tie, I've spoken to her on the phone and she seems very helpful too. Might be best to get another opinion if only to rule it out? If it is TT it will be hard work for him to feed so feeding little and often is a typical pattern. It sounds like a really difficult time for you and your DS, I'm sorry. I hope they can figure out what's wrong very soon.

MsPickle Fri 14-Jun-13 22:14:34

I'm no expert but yes, it could affect all feeds. DD started off looking like a great feeder but didn't gain any weight.

Kings College (SE London) has a tt clinic, I only know about the referral pathway for breast feeding but do have the details for a lactation consultant who also practices privately (as well as in Mr Patel's clinic). Happy to share her info. I hear what the other poster said about some places not being 'pro snip' (sorry, on phone so can't check your name!). But worth checking with a specialist as the fix is so straightforward!! Hope you're well stocked with distractions and snacks, as well as being stressful I found it very surreal being in hospital with DD-it was strange to be confined without feeling bad myself IYKWIM? And keep hydrated yourself, worry and dehydration aren't a good mix...

Hope you've RL good support.

Misty9 Fri 14-Jun-13 21:44:06

Agree, definitely get checked properly for tongue tie. Ds was born with severe tt - picked up in hospital, but decreed not needing the snip confused. Turned out the hospital was a bit anti-snip, and despite being told by several people his latch was fine, turns out it wasn't (but looked outwardly so). He was a big baby at birth though (9lb) so coped ok until the snip at 4wks (and evidently hoovered it out of me in order to gain as well as he did beforehand!).

Sounds really stressful, so offering hugs and hope you get some answers soon.

NobbyD Fri 14-Jun-13 21:43:00

I'm in havering, east London. Will def ask doctor about this tomorrow. Would it affect him all feeds because he has done larger feeds of 100ml from time to time they just v rare it's mostly 30ml comfortably, 60 at a push and 90 if you really force.

MsPickle Fri 14-Jun-13 21:22:37

Have him checked again. DS was the same, seemed to feed all the time because he'd get knackered, conk out and the start again. Where are you? Have you a La Leche or similar? I'm in south London and we have excellent tt support, my aforementioned friend had had at least two people assess her ds before she saw the person who spotted it. If you're anywhere near PM me and I'll share names/contact info. In other parts of the UK there's less knowledge and support (DS was a posterior tie which could have stayed missed for ever).

NobbyD Fri 14-Jun-13 20:37:37

Thanks for reading!
He hasn't been checked for tongue tie but I did go to breastfeeding consultant when trying to feed him myself who said his latching on wad fine. He latches, sucks well for a bit then it's like he gives up. He takes enough to take the edge of hunger then that's it.

MsPickle Fri 14-Jun-13 20:11:01

I don't have anything very helpful but couldn't read and run-sounds very stressful for you all. Has he had a thorough tongue tie assessment? Not just from a HV but a lactation consultant or similar? A friends son was recently found to only have 50% motion after 5 months of trying all sorts, and both my tt babies struggled to transfer enough before the snip whether bottles or breast.

Wishing you. Straightforward and easily remedied solution.

NobbyD Fri 14-Jun-13 19:30:40

I'm currently in hospital with my 11 week old ds2.

He was born full term but v small, weighed 4lb 10. Since them he hasn't really thrived. He puts on little weight as uninterested in feeding much (started on breast but was uninterested in that so went to bottle and now hardly takes that). He hasn't reached many of the developmental milestones he supposed to eg smiling, head control etc. and he's generally an unhappy baby or cries a lot and seems in pain.

Due to little weight gain we have been admitted for monitoring. Was put on reflux meds but had little affect to how much milk he drank, he now on a cows milk substitute formula as theory he could be intolerant after good start he reverted back to taking v little.

They doing tons of tests on him checking for chromosome abnormalities, infections etc so far nothing. He has a heart murmur that was checked and down to a thin chamber, outcome mild but will need monitoring.

So I am in here with him until either they find out why he's small and not thriving or he starts to gain sufficient weight.

I guess I'm posting to see if anyone else been through similar and can offer theories, support and encouragement!

Thanks for reading

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