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Oh god hold my hand.

(284 Posts)
OpheliasWeepingWillow Wed 12-Dec-12 16:04:04

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.

AlienRefucksLooksLikeSnow Wed 12-Dec-12 21:20:16

Hand holds and hugs all round love, you will soon have some answers and you can work from there, you will feel so much better when you know what's going on. Sending positive thoughts to you and your DD x

OpheliasWeepingWillow Thu 13-Dec-12 00:07:17

Thank you everyone. Morning here now and am giving her breakfast. She eats loads but still failing to thrive. No one can work out why.

Scared.

DH flies in today.

ChippingInAWinterWonderland Thu 13-Dec-12 00:10:40

Here's my hand x

Do you live there?

I hope you get some answers soon, it's always much easier to deal with something when you know what that something is
x

OpheliasWeepingWillow Thu 13-Dec-12 01:39:46

I don't live in the country where we are in hospital so just me and dd here sad

Basically we moved from one Asian country to another but two days after we arrived had to take her as emergency to Thailand where I am now. At least there is a Starbucks in the hospital.

Poor baby. Eating like a tiny horse and stick thin. Nurses are lovely though.

Am also trying to work part time at the same time with one hand on iPhone. Is probably all gibberish

imogengladhart Thu 13-Dec-12 01:47:11

Message withdrawn at poster's request.

deXavia Thu 13-Dec-12 01:48:02

Hand holding and in your time zone - there are quite a few of us over here. Will keep checking back if you need to chat

ChippingInAWinterWonderland Thu 13-Dec-12 01:49:19

Oh that's horrible sad

What is the standard like at the hospital?

What were DD's symptoms that made you take her in?

How long before DH arrives??

<HUG>

Thinking of you this morning. Are you in BKK? You should get good care.
X

OpheliasWeepingWillow Thu 13-Dec-12 03:45:57

Am at Bumrungrad. Is like the Hyatt.

They just asked me if I was sure dd has 600ml a day and maybe they will do an NG tube to check. Almost kicked the doctor. I devote my life to feeding this tiny minx. Gah. Will ask for an observer in the corner of the room perhaps.

NG will not happen on my watch as she has severe oral aversions. Also they would only give 600ml through tube!

<head on bed>

OpheliasWeepingWillow Thu 13-Dec-12 03:47:29

chipping curve flatlined and head not growing plus feeding difficulties

twolittlebundles Thu 13-Dec-12 04:41:36

hand here too- I'm in NZ so am about for a few more hours yet.
I hope you are getting some rest. It's awful when the doc's question you, but they are trying to rule things out. Good on you for refusing the NG.

OpheliasWeepingWillow Thu 13-Dec-12 05:28:24

I feel a bit sorry for the coordinating doctor as am a bit strident in pushing for answers. They are baffled. All tests negative aside from brain.

Is weird as the only thing she cannot do at 10 months is pull herself up. She says mama, dada, creeps, sits, feeds herself when she feels like it, is very social and holds her water bottle.

Is only 7kg though. Teeny.

Researching metabolic disorders on Dr Google has me in a horrible flap.

Nephrologist, neurologist and ped coming this afternoon again.

Spinal tap tomorrow.

twolittlebundles Thu 13-Dec-12 05:36:45

I suppose the good thing is that they are well resourced and you are likely to get some thorough tests- though I bet the idea of having your beautiful girl undergo all of them is close to unbearable. I bet she is getting some wonderful hugs from you right now.

deXavia Thu 13-Dec-12 05:39:46

Such a worry but be careful with Doctor Google as it can lead you down some dodgy paths. I know do many different tests are trying but hopefully they'll show up the problem. What about you and your family are you teeny by nature? 10 months is so very young to judge. Although obviously there were enough signs to drive you to the hospital in the first place.
<<Sits down, offers tea and a couple of trashy magazines as distraction from Dr Google>>

AlienRefucksLooksLikeSnow Thu 13-Dec-12 05:42:21

Morning ophelia yes, the tests will be horrible, but you will get answers eventually, try and be patient with the docs, while sticking to your guns, they need to check every possibility if theyre baffled. I know the feeling, had similar when my DD was in NICU, they kept asking if I took drugs??!!

Give our virtual hands a hard squeeze when ever you feel the need, will be thinking of you and your little fighter today.

How is the day progressing?
Hope she not too uncomfortable and your DH arrived safely.
X

bishboschone Thu 13-Dec-12 07:34:15

I think 10 months is too young too. My ds is 16 months and cant pull up yet ( hence tests) .

DeckTheHallsWithBoughsOfBolly Thu 13-Dec-12 07:42:07

Holding your hand, one of us will be here no matter what time. Keep strong for her

ChasedByBees Thu 13-Dec-12 08:36:12

Thinking of you xx

Bunbaker Thu 13-Dec-12 08:49:16

"Is weird as the only thing she cannot do at 10 months is pull herself up."

She sounds quite advanced. DD wasn't doing all those things at 10 months - she was only just sitting up on her own. She started pulling herself up at 12 months and walking unaided at 16 months. She developed normally, just not as early as some other babies.

Good luck with the tests. Will they be looking for coeliac disease and allergies?

My Wilf had loads of tests done when he was smaller and i know how stressful it can be.............Sending you hugsssss ((())))

JugglingMeYorkiesAndNutRoast Thu 13-Dec-12 09:05:41

Hugs to you tiger Mama !

Hope you and the docs and nurses together can do a great job for your DD thanks

Also in Asia and holding your hand. Thai hospitals are among the best in the world so they will do absolutely every test under the sun. What hospitals in Asia tend not to be great at is bedside manner so although you will get first rate medical care, the fluffy, hand holding side may be less obvious than in the uk.

Let us know how you are getting on, take care x

seeker Thu 13-Dec-12 09:19:13

She sounds pretty advanced developmentally to the untrained me! I'm sure most babies can't do all of that at 10 months- certainly most aren't talking at all, surely.

Just make sure you're not being caught up in a railroad of interventions- there may be issues, of course, but some people are just tiny.

Startail Thu 13-Dec-12 09:20:40

Hand holding from the very pretty very frosty midlands.

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