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.

[pictish]

Bless you Ophelia I'm certain anyone else here would be exactly the same. I know I would.

[JKSLtd]

Still thinking of you. When DS2 was in and out of hosp it felt so surreal, and crying was very common. Remember to keep looking after yourself, eating, sleeping, fresh air, etc.

It's good news that things are being ruled out. Hope that some answers are found soon for you all though.

[NestOfWipers]

Hardly surprising my love - hang in there. Hopefully they will find something soon, something very small and easily fixable! x

[OpheliasWeepingWillow]

My DH says he is more worried about me than about dd! Ridiculous. But she is so lovely and took 10 years to conceive. I have to pinch myself that I have a daughter even 10 months later.

The thought of losing her... Unbearable.

I know the doctors are doing their best.

She wouldn't drink today either. Gah

[narmada]

I hope you get some good news soon, in time for christmas. Life is so, so unfair sometimes.

I am going away for a week but I will check in as I will be thinking about you.

[LittleChristmasBearPad]

Hang in there lovely. God bless you all.

[dikkertjedap]

It is not surprising you keep bursting in tears, it is an extremely stressful time for you. I really hope you will get some answers soon.

How long will you be staying in the UK for? I very much hope you can have a bit of a break.

Sending you lots of positive thoughts.

[ChippingInLovesChristmasLights]

Are you at the hotel yet?

I'm not surprised DH is more worried about you than DD.

Try to look after yourself
x

[CheckpointCharlie]

Hello only just read this but your description of your brave little dd snuggling her teddy makes me feel so sad. I very much hope that you have some answers very soon, from reading all your thread it seems like things are being investigated quickly so that is good.

I don't want to be flippant and say it will all work out, but I would concentrate on the fact that lots of scary things have been eliminated already and you will have your answers soon (fingers crossed).

My hands are a bit dry and scratchy but they are here to hold.

[OpheliasWeepingWillow]

Ok so the doctor has been again and says all tests results aside from MRI are normal. Weight gain in last week nil but hard to track in such as short time as pee / poo / bottle previous all affect results.

Now to see the metabolist / geneticist tomorrow and then maybe a second opinion in Europe or America.

As he says, she SEEMS fine. Is just teeny tiny and curve rapidly descending for no reason.

Dd is banging things together.

I need vodka a cup of tea

[OpheliasWeepingWillow]

So hoping we can get to Europe for Christmas not that I have bought any presents yet

[laptopwieldingharpy]

Thinking of you all. Its really good news that they've ruled out a lot of possible complications.
Go wander around chatuchak market for a couple if hours to clear your head. You might even pick up a present or 2.
Hope you get some reassuring feedback tomorrow.

[dm1mum]

I know it might not feel like it but you sound like you are doing really well. Try to give yourself a break and not worry about the unknown. Very hard I know. I really hope you get away for Christmas too - will be crossing fingers and thinking of you this weekend.

[bishboschone]

I know lucky isn't the right word in these situations but you have seen more people in the last few days than I have taken 18 months to see . I certainly would have preferred to get it all over with one go and move on with the information than have it all hanging over me for this long . Stay strong and I hope you get some answers soon x

[OpheliasWeepingWillow]

bishboschone I am really lucky in that our insurance is brilliant - only covers Asia though. I dread to think what hoops I would be jumping through in the UK.

I am currently researching second opinions in London and Germany. Calling in all resources and favours!

Neurologist said today her MRI was definitely not within normal limits or even 'aberrantly normal' if that makes sense (eg at far end of a curve)

Now I need to know if it's metabolic or genetic. Can go from there.

Not very christmassy around here to be honest but at least there is action!

[OpheliasWeepingWillow]

laptop I've gone for a pedicure at a tiny stall type place. It feels good to be out of the hospital tbh although I feel v v v guilty. Can't escape now though - only one set of toes orange.

[OpheliasWeepingWillow]

checkpoint I know. Poor thing with her made me cry. Lots of soggy toys what with all the crying ATM.

[bishboschone]

I find it hard to believe that her brain is that of a 7 month old though if she she says mama dada in context . Obviously I'm not a doctor but I have seen so many people and you hear the same questions over and over. Do they say mama , dada etc is a regular . I saw the speech therapist the other day who said ds 5 words was perfectly normal for his age of nearly 18 months ( 2 months premature ) ..

[OpheliasWeepingWillow]

Yes I don't understand the problem but it's more motor than verbal? Her social skills are that of a 12 month old he says so god knows. It's all to do with the movement of the grey matter? Am stumped tbh. And her head is on the 25th centile. Just not growing.

[bishboschone]

My ds is growing fine but is behind on motor skills . Well globally really , we have had a micro array done after seeing the geneticist . The wait for that here is 8 weeks so hopefully if you have that done its much quicker than that .

[OpheliasWeepingWillow]

Gosh. Good luck. The things we never anticipated...

[butterfliesinmytummy]

If you need a second opinion covered by medical insurance in Asia, try singapore. The medical care here is pricey but excellent, English is spoken and its more westernized than Thailand so might be less unsettling place to stay. Also there is no waiting for appointments and similar time zone to bkk so easy for doctors to discuss....

If you need any info about hospitals or anything, let me know, we are on our third posting here, this time nearly 5 years so far. Dd2 went over the back of a high chair last year and smacked her head on a marble floor. She was vomiting so we took a trip and overnight stay to the main private A&E ....the Paediatric neurologist was lovely!

Hope you all have a lovely Christmas, knowing that so much has been ruled out. Wishing you courage, strength and good news x

[bishboschone]

Exactly! Not what we signed up for but that's life isn't it! The waiting is horrendous .

[OpheliasWeepingWillow]

Thank you butteflies appreciate it.

Deep breath for tomorrow.

My parents are asking me all sorts of questions that I won't answer (eg MRI results) as I can't bear for them to worry to.

[ChippingInLovesChristmasLights]

Ophelia - the waiting is horrible, but you are very very fortunate (as I'm sure you appreciate) to be in Asia, even though you are so far from friends and family. The wait here (UK) is horrendous (bish's experience is not unusual at all sadly). I hope you get some answers soon.

Would you consider telling your parents, they are worrying themselves silly anyway, they might as well know what the latest results are as you go. You can't stop them from worrying just as in years to come you will worry about your GC and I'm sure would want all the facts.

How are you toes looking?

I seriously need to get mine done!

Oh and presents - no one over 10 will worry about presents, delegate the buying for the under 10's to family/friends and pay them later. Everyone will just be thrilled to see you if you get to the UK.