Where is Dr House when you need him?

[OpheliasWeepingWillow]

My dd has silent reflux, oral aversions and feeding issues. She generally has around 500-700ml of formula a day plus small feeds of olive oil fortified solids.

She has dropped off the curve and now her height and head circumference have stalled.

The doctors are mystified.

At that level of milk she should be at least gaining a little but her curve has flatlined.

Now have been admitted to hospital (thousands of miles from family and friends as am an expat) and metabolic / genetic diseases are being explored. She is seeing neurologists, geneticists, occupational therapist and a gastroenterologist.

They won't do a gastrostomy until they rule out metabolic disorders.

I'm tired and terrified.

They can't do CF tests here as almost unknown in Asia.

And to cap it all off my DH has to fly back to the country where he works so just me and little dd struggling to make sense of it all.

Dr House much needed on this one.

[Goldmandra]

Sending ((((HUGS))) if they help a bit.

You must feel very alone.

Do you feel confident in the medics she is seeing? If not can you get back to the UK or can you arrange for samples to be sent over for testing?

How old is your DD?

I really hope you get some answers soon and they are reassuring ones.

xx

[SilverSixpence]

CF tests are essential and the first thing that would be done in the UK. The test is not complicated - its a sweat test taking sweat from the finger to see if it contains abnormal concentrations of salts. Please insist that they run these tests or get somewhere where you can have them done. Good luck and hope things start to improve.

[OpheliasWeepingWillow]

CF test tomorrow, barium swallow, MRI, endoscopy this week

[dm1mum]

Ophelias I remember some of your previous posts. Sorry to hear things are still difficult. I hope the first tests have gone ok and that they help make some progress.

Bumping this up as I don't have any real experience to offer but also just want to let you know that I am thinking of you. Good luck this week.

[dikkertjedap]

Is your family in the UK? I remember some of your other posts about feeding issues and appreciate it has been going on for quite a while now, would it therefore be possible for you and your dd to go back to UK, stay with family and have her treated here?

Wish you lots of strength in what must be a very worrying and exhausting time.

[dikkertjedap]

Hope today's tests have gone okay. When will you get the results?