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.

When you saw the geneticist did he actually do any tests?

FriskyBivalves I expect that the reason a geneticist may need to be involved is the combination of small head circumference, low T4, hypotonia, feeding difficulties.

Thanks Butterflies Bumrungrad refused - professional pride I guess. They said go to the UK...

dikkert metabolic tests but said he expected them to be fine. Did not do genetic tests and said he was almost certain not genetic

I really think this is a feeding thing of some type.

She has had 300 cals today, vomited at the sight of her 5pm bottle (leaving us both crying btw) and is not taking solids now.

I think cumulative under nourishment is definitely somewhat behind all this (many threads )

Have emailed guy at the Portland and am waiting for response. Hardly any wet nappies today but she will sip water.

Just not sure which avenue to explore first. Feeding / calories is my instinct

Frisky thank you for that. Will push harder for info.

Anyone got some ?

ok I've emailed my friend. will let you know asap when I hear back. hang in there.

so sorry to read this :(
To me she does sound advanced for her age (I've got 4 older dc)
Have courage.

I've just sent you a pm with the details of the recommendation. hope you can access that. if not, let me know and I'll put it on here.

& more - I just wish I could deliver it in person with a

I have no idea what would be the best thing to do - but I suspect I would throw shit loads of money at it and go to the Portland on the basis that you can't put a price on it and I would feel better being in England. That doesn't mean it's the right answer for you though. If you are happy with an Asian hospital, I would go to Singapore - once again, just my personal choice.

Will your DD eat anywhere 'unusal'? Sounds like an odd question I know, but my friends little boy went through a serious food.bottle refusal stage (at about 11 months), the only place he would eat was in the bath. All very odd.

My friend is interested to know if they have also tested her FSH levels? That the thing that stimulates the thyroid gland into working I think. Or the pituitary. But she says they should have levels for both...

I hope you're managing to get some sleep but bet you're not.

Sips of water are good. I know absolutely nothing about this but has anyone mentioned a gastric tube or IV line to get nutrition and/or fluids in? If the docs were really worried about the intake would they suggest that?

Oops. TSH levels, not FSH. Think the latter is something to do with the menopause

Google British Thyroid Foundation. They have info on thyroid disorders in children and I believe a help line for support and information.

I know you said she has oral aversions, but would you consider trying the NG tube? They are so fast to place, and that way you could rule out pure input insufficiency.

I maybe way off track but if Im reading it right (and I must admit I have read it all rather quickly) the main problem at the moment is her lack of growth and oral aversion?

When they did the MRI was it just of her brain or did they check her heart etc as well?

My DS2 was premature (which isn't really relevant)and only weighed 1.6kg...by 10 months he was only 5kg and was struggling to feed. Milk was an absolute nightmare to get down him at all...he would fight and scream and it was like I was poisoning him. Got refered to hospital and he had a Barium Swallow done and it was found he had something called an Aberrant Right Subclavian Artery...basically one of the arteries from his heart had come off in the wrong place and was pushing on his osophagus. On the xray from the swallow there is a literally a huge dent in it so hardly anything can get through. He had loads more tests done at GOSH as they thought it was something called a Vascular Ring which is basically when the whole osophagus/trachea is encircled but luckily it isn't. The symptoms are very much like reflux...and is especially bad with liquid. Its sort of like a splash back effect when the liquid goes one.

As I said Im probably way off the mark but I would think it might be an idea for them to investigate other areas of her anatomy as well.

And for what its worth I think she sounds amazing and very advanced!

Yes thanks all. I am sure it is calorie related having done some more research not that I am a doctor

iheartttc barium meal number 1 abnormal, BM 2 'normal' but I don't trust the gastro ped. No Heart MRI as she woke up after 10 minutes despite 2 doses of sedative.

lougle I just can't do it to her. Last time she pulled it out 4 times in one day and it left her with three months of feeding therapy. Gastrostomy am fine with TBH.

frisky yes NG tube mentioned loads, also G Tube but they would not fit Gtube in BKK and could not in Shanghai unless I went to local hospital where there was urine on the floors of the waiting room and children defecating in corners watched by their parents

drcrab am going to contact your dr recommendation

I have a plan in place now.

1. Go to Germany tomorrow. Dr FIL trying to make emergency pediatric appt for us. See what happens.
2. Have made apt at Portland on the 8th to see this chap who was the one who first alerted me that there might be a serious issue. Throw self on his mercy. They replied really really quickly.
3. Have contacted insurance company to see what they recommend just for the sake of it.

reallynotstupid yes am now just going to throw money at the problem in a highly targeted and aggressive fashion. Am extremely fortunate to be in the position to do so thank god. And when that runs out I have Visa. Then I'll sell whatever the hell I have to down to my socks. As for the bath - that's where she has her sippy cup. Mad right?

(Thank you to everyone who has replied on this thread. I am really grateful)

great - I'll PM you his email add when I get it. good luck. big hugs

Good luck, still thinking of you. Hope you have a smooth trip to Germany.

Best of luck op.
My ds1 was tube fed for a little while and although it was distressing it helped.
His now a strapping 9 year old btw!
Xxxx

That sounds like a brilliant plan & I'm pleased you now have a plan, I think that always makes things seem a bit more 'OK' & do-able.

Do you get on with your in-laws? Will it be a 'good' place to be?

Sippy cup in the bath - no bother at all. My friends DS literally ate anything/everything he ate, in the bath. It was a PITA at times, but we joked that it was actually very practical and yet more proof that we could multi task To be honest, at the time we would have stood stark naked in the middle of town if it got him to eat!

Ok. Good plan. Try really hard to get rest and food yourself. You are doing so well and I hope someone says 'Oh yes, I've seen this before. Here, let me fix it for you.' very soon.

Totally unrelated, but my DS had a Complex Focalised Seizure a year and one week ago aged 10 months. He is totally fine, it was a one off, but the worry we went through while waiting for the MRI was awful. I am holding your hand with all the others.

Still reading and still thinking of you. On holiday at mo. Best of luck in Germany - what a journey you are on, physically and emotionally. Fingers xd for diagnosis soon.

Have just pm you the contact details. Good luck. Hope you had an uneventful flight over here....

OP that sounds like a good plan. Thank God for contacts and cash.

Fingers crossed for you

About to see specialist in Germany. Dd has had about 600ml over 3 days. Clamps mouth shut at bottle and spoon.

FIL (dr) says he does not believe in gastrostomy as it disturbs the mother child feeding relationship. Ha. What feeding relationship. Anyway - am staying with PIL so trying to not argue.

Consultation will be in German. I only speak pidgin German.

The weight is falling off dd and London appt not for another week.

Scared now.