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.

Having a deep breath here too. Not sure of time diff but what time should I send you vibes!!!?

So sorry to read about this. You must be going spare. My DS was in gosh for 2 weeks and it was horrid (not the hospital just the experience!!).

I second butterflies suggestion re second opinion in Singapore. I'm from there and the hospitals are brilliant. With your private healthcare it'll be a cinch to get the paeds you need.

Let me know if you need help. I have several good friends in private practice in the various hospitals who can recommend consultants if necessary. Big hugs.

Thanks drcrab!

Just waiting for the geneticist / metabolic specialist. It really looks like she can't convert food to fat and muscle if that makes sense.

Ped just came and said we should try and find answers in the next month. Where?! We are already in freaking hospital.

Am shaking in fear.

So tomorrow I hope we fly back to country we work in and then on to Germany the next day (totally outing myself here)

Can't face telling my parents although MIL and FIL know.

There is nothing my parents can do but FIL is doctor so...

What is it's something fatal? Am completely panicking. DH is being sensible. Almost makes it worse!

chipping spent the night on Amazon. Thank god for the Internet and wish lists.

Toes cheery!

Just seen this - hugs and prayers with you,Ophelia.

Sweet lord.

Just saw the top geneticist / metabolic doctor who basically laughed (in a good way) that she has a metabolic or genetic disease. He is doing some overall tests but says that it's not fatal, we shouldn't panic, and that she seems fine He was lovely BTW.

He is the only one who has ever listened to me properly about possible CPMI - we studied her curve against breast milk / specialist formula intake and he will talk again to the gastroenterologist.

Madness I tell you.

I hope it's true though, even if I have to add Hershey's chocolate syrup to the horrible amino acid formula they might prescribe.

And I've just taken half a Xanax. Seriously. Roller coaster central.

Have been lurking and worrying... But am so very very very delighted for you. Am in France - given that you are flying to Europe be aware that it's warmer than last week but you'll still need plenty of woollies. How wonderful that you can worry once again about the more mundane things in life - keeping dd warm. Shame to cover up the pedi with socks but needs must...

What does the specialist recommend you do next, out of interest?

Hi Frisky I am so relieved and also just reeling.

Have bought dd a pink snowsuit from H&M. I however have no coat as I moved countries with limited baggage

If anyone in Germany sees a blue skin tinged blonde holding a tiny marshmallow baby that will be me

Now for nutritionist and gastro guy again today.

Maybe I should just wean her off milk full stop?

Specialist says talk to gastro guy who is rapidly looking like a moron

Umm do you need to find a top gastro guy elsewhere? Like germany or Singapore? I guess it's the timeframe that matters here - ie, how urgent is it?

I always thought milk was the easiest way of getting calories into a baby but maybe that all changes once they are on solids. My ds is 14mnths and, ahem, a very solid shape. He weighs 10kg. Considering your dd is six months younger I don't think 7kg - in absolute terms - is absurdly little.. . I do understand it's the dropping down centiles thing that is worrying.

Get nice coat in Germany. Half the price of everything in France according to friends who have just visited from here!

Four months younger. Four months. Too early on a Sunday morning for Maths.

Just spoke to nutritionist. She's not convinced but willing to prescribe Neocate or Nutrimagen. The only thing is that because dd has oral aversions the horrible taste is a problem. Last time she refused Neocate to the point of being tube fed!

So we are going to add calories by the shed load in terms of mct oil, avocado and potato, meat and review in a month. If no progress straight to full weaning and no milk in sight.

TBH I may drop a milk feed anyway but what dairy free meal aside from milk has 150 cals at a time?

Metabolic tests coming in two weeks.

I just hate the thought of giving dd milk she cannot absorb.

Frisky I am seeing a great guy at the Portland in Feb so let's see. It's diagnosis by exclusion right now.

Distracting self thinking of lovely coats

Also been lurking, and hoping everything is ok.

As for high cal dairy free meals, try making things using coconut milk instead (fish pie is amazing like that), DS2 used to love it as he was on nutramigen

Hi Ophelia, it sounds like there is some good news in there amongst all the frustration. Have everything crossed for you. Does your DD hate the bottle and cup and everything now because of her milk aversion? I am wondering if you could drop milk feeds from bottle and use the milk to make up porridge, potato bakes, etc. With porridge you could add plenty of maple syrup to disguise the taste, and cinnamon and berries....sorry if that sounds like such a lame idea!

No-one will care if you don't have presents this year! Don't worry about it.

Curtsey I assume the OPs baby won't eat solids as she has oral aversions.

Thanks all! Gastro guy discounts cows milk allergy but she has reflux, failure to thrive and eczema...

Anyway we have agreed to try a month on super high cal cow formula made with mct oil, add mct oil to her food and if no improvement in one month wean her completely.

She will take solids after only 3 months of thrice daily therapy but only to In the Night Garden. I hate Upsy Daisy.

Anyway am not particularly happy with the plan but can't imagine how the hell I would get her to take amino acid formula again.

Plan for foods

Avocado
Chicken thighs
Duck / goose fat in food
Potatoes
Coconut milk (thanks!)

Anything else?

Metabolic tests come in two weeks.

Curtsey not lame at all. When she was on Neocate (failed to drink it) I swear sometimes it was 50% golden syrup!

Metabolic guy says she needs 750 cals a day. That's a huge amount. I may need to put a pizza in the blender.

Just wanted to add that a friend of mine has a daughter who's about 15
Months old or so. When she was born she was constantly throwing up etc. her weight dropped rapidly to below any centiles.
Eventually told that she was failing to thrive and put on all sorts of med to stop reflux and promote eating. She didn't walk at the 'normal' times. All delayed.
She's much better now that she's putting on weight. The med have worked. Still slightly delayed but normal development if that makes sense.

I hope that offers some comfort. Big hugs.

Mix the avocado with banana - makes it taste amazing. I think bananas are also quite high in fat.

Nuts and seeds are very fatty but check that with a nutritionist regarding your DD - not sure if she's prone to allergies. If you got the go-ahead you could grind them up and add to other stuff.

Just want to say again that she sounds v similar to my 10- month old! As far as I understand crawling requires quite a lot of brainpower so that alone is fab.

Oh and a family member who is trained in this stuff swears by the babybel cheeses that come in the red wax wrapper as a way of getting babies with food aversions to take an interest. But again, if you're still not sure about cow's milk that might not be your first choice.

Is fatty fish any good? No idea about aversions, but it's high fat and nutritious and mashable.

Ooh good suggestions.

What kind of fatty fish? bit fick about fish

Maybe I will try tahini with something added to make less gloopy?

Tahini and avocado?

Can't believe she is drinking less of the high cal formula. Wah.

And has refused evening bottle. Honesty. Saga.