Oh god hold my hand.

[OpheliasWeepingWillow]

Am in Asia and about to sleep but neurologist says dd who is in hospital (10 months) has delayed brain development. This is in conjunction with failure to thrive and a flatlining curve. They are looking at metabolic and genetic disorders and I am beside myself. Couldn't find Special Needs on my stupid phone.

Spinal tap tomorrow I think.

So scared. She is my world.

Salmon is probably the easiest fatty fish, and it's very good for babies. Mackerel too. Hard boiled eggs are also great, mix with mayonnaise for egg sandwiches.
Soon she'll be a right little fatty )

Might she eat taramasalata with something? It's madly calorific and very tasty.

Lurker here with some suggestions...
Almond milk?
Coconut milk?
Banana
Avocado
Peanut butter - you are in hospital,so even if she has a reaction dd will be fine.
Eggs in all forms
Tuna/salmon/mayo
You can put most meat/fish/chicken in mashed potato/sweet potato ime.
Good luck x

hello, sounds like a bit of good news re the non-life threatening! Phew!
thinking of you trying to feed the little monkey!

Great food suggestions. Awesome. Looking forward to her face when I present taramasalata.

Got told off for feeding her Ella's Kitchen - calories not high enough (only fish one is really good apparently)

They just delivered 30 cans of specialist formula to the room and a litre of MCT oil. God knows what customs are going to think and how I will get in suitcases

Have all her records from super efficient nurses, including MRI video. Really impressed by their systems. That's just the geek in me.

Wondering if I should start waking dd in the night for feeds? It would mean lights on, play, wait half an hour, feed, resettle. Not keen TBH... But if needs must

And another friend who lives in Canada. She was told her daughter was not thriving. Slipping down percentiles. Told to force feed fat, butter etc. she is now 8? And looking v well, hitting milestones. :)

Hi Ophelias, my DS2 was failing to thrive & just slid down the percentiles. He was under a dietician in the end & we had to basically put olive oil, cream and / or butter with everything. So if he had pasta I'd coat it with loads of olive oil before doing anything else with it. Cream in his porridge etc.

It is such a worrying thing but despite his other medical difficulties he did put on weight. DS had an undiagnosed cleft palate and milk feeding was very uncomfortable & difficult for him (we now know!), solid food was actually much easier.

Wishing her well soon.

I think salmon, tuna (fresh, not canned), herring types like mackerel, trout. All can be fried or steamed and will mash down well if she doesn't like lumps. Would taste ok mixed with avocado and/or tahini. I hope you get a bit of peace and gin over Christmas!

What is MCT oil?

My ds1 was a ftt baby. What really helped was weaning. Sorry. Its not a popular view on mumsnet but its what worked for us...by the time he was 1 he had gone from not even on the growth chart to 75th centile! :) I weaned ds1 at 14 weeks. He needed the food/nourishment/calories. Good luck x

Hi Ophelia, good to hear your news. It is really re-assuring although I appreciate you are still awaiting some results.
I hope you have a lovely relaxing holiday.

Second suggestions above.
Ds (as a toddler), survived on 3 spoonfuls per meal, so made every bite count.
Can I suggest:

• baby pasta cooked in full fat MILK / rice pudding (you can mix in an egg yolk at the end and add butter or mct oil + full fat grated cheese before serving)

-porridge oats again cooked in full fat milk + dried apricot or mashed banana//pumpkin etc? + a dollop of cream or full fat yogurt. -lamb stew cooked with a bit of coconut milk and sweet potato then mashed -acocado/mango/apple sauce with baby rice/cream & mct oil

If I may suggest, try and draw some local wisdom from midwives/nurses where you live. I spoke to a fantastic confinement nurse I met through a doula in singapore. I'm sure there are age old recipes to fatten up babies in your parts.
Whilst in the UK DS was weaned on sterile baby rice, in asia, DD was fed chinese rice porridge cooked with (unsterilised small dried anchovies (for calcium as dairy is very uncommon in the local diet). And lots of veggie south indian recipes that minus the spice are great foods for babies:
-fruity lentil daals cooked with coconut milk
-bean stews
-"idlis" which are melt in you mouth gram and rice flour steamed dumplings with yogurt dips etc?.

hope that helps expand the recipe book.

x

Thank you laptop - will try all!

Am having a fabulously ironic day where dd is refusing her lovely enriched formula.

Bah. Am spooning fish mixed with MCT oil into her fussy but cute little mouth

badvocsanta believe me of she would eat in any quantity the bottle would be gone in a shot! Tried since 18 weeks...

Hmmmm...tricky.
I think you are doing all you can.
Try to be kind to yourself x

I'm a little confused - what have they now said about them declaring that her brain didn't have any growth after 7 months & the proclaimed delayed brain development?

notsaid they said come back in a month! Each specialist passes the buck to the next one. Neurological consultant thinks genetic but geneticist thinks that is nonsense and she is fine.

So god knows.

Oh dear. Getting her to eat or drink this new milk is so stressful.

I wish I had just flown to London as a previous Portland consultant advised and has a gastrostomy for her. I am sure she is not getting enough calories somehow.

We have two weeks of waiting for metabolic tests and a month waiting for the follow up appointment.

They have already told us to go to Europe for a diagnosis though. Helpful.

Should I:

Go to the Portland as soon as Christmas is over?
Wait until end of Jan to go back to BKK?
Find a specialist (in what???) in Singapore?

My insurance only covers Asia....

Hi Ophelia. I'm in Singapore, as are quite a few other MNers. Let me know if I can help with anything from a practical point of view. When do you fly to Europe?

Thank you FlimFlam

What's the best hospital there? I honestly hear so many opinions I am flummoxed!

I don't know, tbh. I will post the question in Living Overseas for you. Are you here in Singapore now? Or have I misunderstood?

All the hospitals are really good in Singapore. If you pm me I'll find out which consultants will be able to help in terms of what's happening to your baby. There are lots of private practices in mt Elizabeth or the mt Elizabeth novena hospital. Others are in gleneagles. There's also a specialist children's hospital. I'm pretty sure they take private patients too.

Like I said my DS was warded at gosh in the summer for two weeks. Currently under the care of consultants there. But when they were figuring things out (at the local level etc and when GPs were fobbing me off) I rang an old friend who immediately put me in touch with a consultant in the right field immediately. I had answers in a day (given the time difference it was great!!). Also had help from a prof in Stanford too. Let me know if we can help.

I've started a thread in Living Overseas www.mumsnet.com/Talk/living_overseas/1639135-Singapore-folk-can-you-help-this-mum-re-choosing-a-hospital-for-her-baby

OP if you post on it then you'll be able to find it easily again by checking 'threads I'm on'

Hope that helps - or that drcrab will be able to help you.

Aw thank you!

Am living in Vietnam but insurance covers all of Asia.

Just had result that she has low T4 googled and now scared and off on Xmas holiday tomorrow for two weeks.

Am all systems go finding solutions so thank you!

I am in singapore. Most expats go to either mount Elizabeth or gleneagles hospitals but many consultants here are cross hospital like in the uk, so work private and non private hospitals. By the way, the standard of care in non private hospitals is as good as private ones from what I've heard (private ones are more luxurious, like hotels, that's all). For a child, I wouldn't hesitate to go to kk women and children's hospital. I have heard great things about it, it's centrally located, enormous and well known thoughot the region. If I were you, I wouldn't ask a forum about Singaporean specialists (unless a poor mumsnet tear has been in your nerve wracking position), I would ask at your hospital in Thailand. They should be able to refer you to a raft of specialists in singapore.

Personally I would go to the Portland. I have been there a lot with my DC and they have always been very very good. Basically we saw top NHS consultants who also work privately for the Portland. And (at a price) we did not have to wait for ages ad we were helped straight away and not sent from pillar to post.

I think only really the best consultants work there. The care is second to none.

I can't judge hospitals in Asia as I have never been there.

Low T4, I think, is to do with the thyroid not working correctly. A friend's son was diagnosed with this but I think the docs were slower off the mark. He was like your dd - fine at first but then not growing to the charts. Now he has a daily pill - the dosage is regularly monitored and they tweak it quite frequently - and is doing really well now. They don't think he had it from birth because he showed none of the typical symptoms. It was only because he was little too that they thought to test it.

My friend was told that it may have come on as a result of been one of those auto immune things where body wrongly believes there is something amiss...

If it is a thyroid disorder then I think the quicker your dd starts taking artificial throidy stuff the better. Is it worth trying to set up a telephone consult with the Portland and seeking their advice of what to do first? It may be that you have to rearrange your Xmas hol a bit!

Apologies if this all sounds very secOnd hand and hearsay.

Still holding your hand