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Original poster

Oh god hold my hand.

283 replies

OpheliasWeepingWillow · 12/12/2012 16:04

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.

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Original poster
OpheliasWeepingWillow · 05/01/2013 12:45

Thank you bamboozled giraffes Blondefriend duchesse and all.

Well I have stopped TV for solids as have stopped solids altogether as she was just gagging and being sick. She will gum happily on spaghetti though so now three times a day she sits in front of a big pile of it and sort of stuffs it in her face. It then falls out again but progress I think.

duchesse yes the hunger + food connection has not been made. In fact, she seems to have only use got the Hunger + milk connection.

Still giving her milk in a quiet room with an iPhone app - will take about 120ml at a time.

No idea how I am going to wean her. She will take water through a straw but milk only from bottle. Looks like BLW re food from now on but calorie content almost nil. Gah.

Anyway, at least she is drinking milk today. Is a start. Off to London tomorrow and we'll see what happens. I definitely need professional help with the feeding as it's very much cyclical and have left our feeding therapist behind in China.

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redwellybluewelly · 05/01/2013 23:03

Just read this thread. Dear lord what an awful month for you all.

Only contribution I could make is to cook everything in coconut oil which ramps up the calories. Even spaghetti.

Dd was listed as FTT. She had a terrible start in life and was ng fed. I breastfed but she refused solids until 14months. Dairy and soya have to be avoided at all costs now and fat is very difficult to get into her. She has slowly gained weight but we rely on food not dairy products for fats and calcium.

I hope port land and the new year bring some answers

hellymelly · 05/01/2013 23:18

Wishing you the best of luck in London-hope you get some answers now.

ChippingInLovesChristmasLights · 05/01/2013 23:58

I hope you get some answers soon!!

It's a bit rubbish your DH has gone back to Asia and you have to deal with all of this on your own :( Do whatever you can to make life easier. If you have the money, you could pay someone to travel with you and help you out.

duchesse · 06/01/2013 00:13

Has she had a swallow test yet? I can't remember if that's one of the things they did in Thailand/. Good luck for your next appointment.

narmada · 08/01/2013 09:22

Hello Ophelias. Hope you are now finished travelling and a bit closer to answers xx

dm1mum · 08/01/2013 13:38

Hope your appointment goes well OP.

bamboozled · 08/01/2013 17:51

Hi Ophelia, how is it going? Have you had your app yet? Have been thinking of you x

ilovesprouts · 08/01/2013 17:54

i have ds2 whos 6 still no dx ...

Original poster
OpheliasWeepingWillow · 08/01/2013 19:30

Update! Thanks for asking everyone

OK, so I saw Dr 1 at Harley Street who said brain seemed OK but is getting someone else to look at the MRI video. Likely just undernutrition. He was lovely. Said seems she has Silent Reflux and not some underlying disorder such as genetic or metabolic.

Went today to see Dr 2 at Portland Hospital and he said:

Definitely Silent Reflux. She's below the 0.4th centile now (so super skinny) and her height has dropped from 97th centile to 50th (!)
Doubled her meds
Is not going to endoscopy or biopsy etc as positive result would not change his treatment protocol.
He recommended dietician so am seeing her tomorrow morning to see what can be added to her formula to make her fatter
Seeing another feeding therapist next week.

He was extremely calm, matter of fact and to the point. Very reassuring and am seeing him again in two weeks.

DH not coming over for a month but am so GLAD I have someone who actually knows about Silent Reflux and who BELIEVES ME.

Happy now. DD has been crying for bottles today (!) and she fed herself a piece of croissant so I am ramping down the panic for now

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Original poster
OpheliasWeepingWillow · 08/01/2013 19:31

ilovesprouts am sorry re no dx Sad for your DS

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BarbarianMum · 08/01/2013 19:37

Wonderful to hear some good news Smile, it really sounds like you are getting somewhere now.

Silent reflux on this scale is awful but much better news that a metabolic condition.

narmada · 08/01/2013 19:39

Hurray. I am so pkeased for you. There is an American website that recommends megadoses of PPIs for v severe reflux. Sorry can't remember its name but sounds like this may be path yiyr UK docs following.

She is sounding more and more and more like my friend's daughter. She is two and a half now, super cute, and intelligent.

Original poster
OpheliasWeepingWillow · 08/01/2013 19:39

BarbarianMum yes, Dr 1 called her a 'Reflux Cripple' (!) but at least I am being taken seriously at last Smile

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takeaway2 · 08/01/2013 19:50

Oh brilliant!! Smile It's great to have a diagnosis finally! Lets hope the drs get it all right from now. When do you go back to Asia?? Or will you be here for the near future?

Madsometimes · 08/01/2013 21:16

I'm a long time lurker, and am so glad that you have seen a doctor that understands.

My dd's didn't eat solids until they were one year. They had a terrible gag reflex and hated solids. Fingers crossed your dd will slowly get the hang of eating.

bamboozled · 08/01/2013 23:24

Oh I am so pleased, at last there will be a plan! isn't it a relief when they say - oh yes, that's terrible reflux - I cried with relief when the pesky one had her barium swallow and the consultant actuslly saif "oh my god" when we watched her stomach empty itself back up. Life can ony get better from here xx

Alibabaandthe40nappies · 08/01/2013 23:34

Ophelia I'm so pleased you've got a diagnosis! Fingers crossed she keeps going with the milk.

ovenchips · 09/01/2013 10:39

I am so pleased you are finally getting somewhere. It was a bit scary just reading the thread and imagining the worry and distress.

I also just wanted to say a big well done to you for getting to where you are now. It hasn't been easy (understatement) but you've been amazing in your quest for answers.

I really hope it's all onwards and upwards from now. It sounds like it's happening already. If you are at all able do update the thread with how your lovely DD is doing.

tangledupinpoo · 09/01/2013 11:52

So pleased, Ophelias, that you've got a diagnosis and treatment plan. Fantastic news.

I hope the treatment starts working very quickly.

We found that, following a endoscopy and tripling of DS's reflux meds dose, he was almost instantly easier to (tube)feed, and from that point his weight and height line on the charts slowly and steadily climbed Smile. He was on 30mg Losec daily at 9.5kg weight at one point, so mega-dose.

Very much hope the tough part is behind you now and your DD goes from strength to strength.

bamboozled · 11/01/2013 19:51

How are things going - is she eating more now her meds are increased?

Original poster
OpheliasWeepingWillow · 13/01/2013 16:35

Well last week we saw a dietician who added Duocal to her feeds but dd has still a 300 calorie deficit every day which we cannot fill with solids as they make make her vomit.

So we saw a child psychologist / feeding therapist recommended by the consultant who, after two hours of observing dd, said her problems are clinical not psychological. So she could not help.

No improvement seen yet on the 20mg Nexium although she does seem to be crying for milk. She gets to 100ml and arches and cries Sad

Hoping it will get better over the next week.

I need to try dd on spoon feeding again but am so scared. It results in retching, gagging and vomiting and the effects spill over to her bottle feeding.

Dietician said she suspects milk allergy but that means Neocate and there is no way in hell dd will take that. Maybe if it is 90% chocolate syrup...

Anyway I am not feeling so hopeful now. Both dietician and therapist said I need to consider tube feeding if consultant thinks she needs it but the last time was so harrowing not sure how it will help.

Really want to go home....

I know she is in the best hands now. Would be lovely to have her actually on the chart. Her stomach has NO fat.

And she has a cold. Honesty I think we might be cursed

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takeaway2 · 13/01/2013 17:30

I'm so sorry there doesn't seem to be any improvement. Did the dr say how long it might take the meds to kick in?

I recall earlier you saying she was helping herself to some food whilst at your inlaws? Croissants? Or something like that? Did she gag and throw up?

I have a friend whose daughter had vv severe reflux. Eventually diagnosed ftt and sent to consultants etc. she was on all the drugs available and through sheer perseverance the dd is now walking and mostly developmentally on track. She looked vvv skinny and not well when she had the reflux. She's now months or so...

ilovesprouts · 13/01/2013 18:26

we are waiting to hear about the DDD study .

Original poster
OpheliasWeepingWillow · 13/01/2013 20:28

ilovesprouts is it this one? www.ddduk.org/

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