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.

Thinking about you and your DD, OP. Take care x

I hope you get a definitive diagnosis soon OP-waiting it such an anxious time. My LO has a metabolic condition, which was why I asked about the heel prick tests. Hope you have an easier day with feeding today and some results soon.

Another and to hold. She sounds lovely!

Hand! It's a hand!

The neurologist's opinion sounds relatively positive, Ophelia? So hard for you going through this. Still thinking of you and offering a hand. Hope today is ok for you and DD.

Just to let you know I'm still thinking of you all.
x

Good morning, hope you had some sleep and that she feeds well today, thinking of you.

Just had a few thoughts after reading your OP again:

1. I agree with all others that she seems alert for her age. Which neurologist initially diagnosed brain development delay? based on what and why did he send you for more test as an emergency?
   What do the doctors now say about this sense of "emergency"?
   I hope you got re-assurance and that it was maybe (a very understandable) overreaction to being in a country with limited medical facilities and that they want to err on the side of caution.

2. How is the weaning going? Is she still only having milk? Are you worried solids will interfere with her milk intake? What do the Drs says about it?

Sorry don't mean to be intrusive and hope you get some reassurance today.

x

laptop he was not checking for delay - think he was checking for structural abnormalities that would account for lack of overall physical growth.

I thought drs were being alarmist to admit but consulted the CMO at a large American hospital, a German doctor and a chap at the Portland. They all said - weird weird weird growth pattern despite large calorie intake.

She is on solids as well as milk.

Diagnosis remains mysterious.

narmada yes is totally possible for us to go private and see GOS but opted for all tests here in Asia as we are fully insured here. There may be some genetic and chromosomal tests they cannot do here though.

Really hoping it's not an IEM.

Am very grateful for all your hands

Sorry drip feeding - she was referred for her reflux and a gastrostomy as thought she was not eating enough but nutritionist and gastroenterologist suspected something more sinister. Hence the tests.

Turns out the reflux is a red herring. Although still gagging on bottles and generally being a nightmare to feed at times. It's gone from being the biggest worthy to the least!

Hand holding, hugs and coffee from me. x

Thanks Santa

Love the name!

It sounds very positive so far Ophelia and they sound VERY thorough....it must be an unimaginable strain but you know they are checking her very thoroughly at least.

"She looks too good" for it to be metabolic sounds great. xxx

Thanks mushroom

So, weirder and weirder.

So far despite dd having strangest growth curve nothing has been found aside from brain development issue.

In four days we have seen:

Gastroenterologist
Neurologist
Nutritionist
Phrenologist
Occupational Therapist
Allergist

The only one left is the geneticist / metabolic doctor which is Sunday so we are being discharged and will go sit in a hotel room somewhere for two days.

All signs point to genetics and I don't even want to start googling that....

Will be good to sleep in a real bed rather than a hospital sofa.

Thank you everyone. Will see what specialist on Sunday comes up with.

There are a multitude of genetic problems and many are not serious...as others have said, she seems pretty advanced developmentally...she's alert, happy....they're certainly leaving no stone unturned!

I wonder if you'd have been seen by that diverse a bunch of "ologists" in the Uk in such a short space of time! Somehow I doubt it!

I hope Sunday goes well....I wonder if it would help to know that

mrsmushroom

It's amazing what great medical insurance can do isn't it? I have been astonished at the amazing care. All the drs have experience and training from Europe or America and all have perfect English. Facilities state of the art.

In a way I am glad we are in Asia but so far from family sucks

Watching dd hug her teddy while they did a blood test this morning was a low point. Brave little thing.

Thank you wankbadger

Thinking of you and dd from Manchester.

i CAN FEEL YOUR LOVE AND WORRY FOR YOUR dd THROUGH (sorry) the screen.

I really hope you get some answers on Sunday.

DD had problems and it took months to sort because the GP was crap. Thankfully someone at DH's work had a child with a similar issue so was able to advise us and 2 days later we were in Harley Street with DD being treated.

Thinking of you all xx

I know what it is like to watch your child going through a barrage of tests that prove inconclusive. Lots of hugs and hand holding from me as well.

I was just thinking that if you wanted to seek a second opinion privately whilst you are in the UK you (or ideally family or a friend here in the UK) should already set up some appointments for you.

Several Great Ormond Street Hospital doctors also work at the Portland Hospital, so if you have to pay yourself anyway, I would set up an appointment at the Portland Hospital so you know for sure there is an available slot (X-mas period may be busier due to less doctors). They are very well resourced (short waiting times, tests done quickly IME, although I have never been there during the X-mas period).

Thinking of you, hoping you get the answers you need and some reassurance.

Thanks dikkert

I keep on bursting into tears randomly.

Bah