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Oh god hold my hand.

(284 Posts)
OpheliasWeepingWillow Wed 12-Dec-12 16:04:04

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.

narmada Thu 13-Dec-12 12:26:58

Oh, and my friend's DD is fine now at 2.5: constitutionally very teeny but healthy and meeting all milestones.

OpheliasWeepingWillow Thu 13-Dec-12 13:10:12

Oh thank you for all the positive stories and messages. My cortisol levels must be sky high.

Deep breathe.

DH trying to feed her now. am pacing corridor outside like a loon

What if it's something fatal? What if she never grows up?

I can deal with delay. I can deal with special needs. I cannot deal with the thought of her dying.

narmada Thu 13-Dec-12 13:25:10

Re. cortisol levels, yes, I can imagine. All I can say is, keep taking the Xanax.

I would echo what others have said, though: if they are making subjective judgements on the issue of her development, then this is surely very open to interpretation.Y ou as a parent know her best and know what she's capable of.

Have they done MRI? Is that what the concerns about her brain development are based on? Or is it a crude head-size measurement? If so, check out your own and DH's head size. Our DD was deemed to have a too-small head only for me to measure mine and discover I had an equally pea-sized one smile Who knew, it's not something I'd ever noticed.

Wishing you the best of luck.

narmada Thu 13-Dec-12 13:27:38

Finally, and I am very sure they will have done so, but has your DD been checked for cardiac issues? these can be associated with delayed development and faltering growth, and are often curable.

EnjoyResponsibly Thu 13-Dec-12 13:36:38

Another hand holder OP.

<rattles Xanax bottle in time to Jingle Bells>

Stay strong xx

OpheliasWeepingWillow Thu 13-Dec-12 13:37:35

Cardiac tests done, and it's just that her head growth has stalled. My DH and I have massive heads like Easter Island.

Her brain showed development to 7 month level in grey and white matter. Neurologist coming in next half an hour. She is watching Iggle Piggle smile

OpheliasWeepingWillow Thu 13-Dec-12 13:38:49

Thanks enjoy smile

narmada Thu 13-Dec-12 14:01:31

Let us know what he says. I hope it's good news.

dm1mum Thu 13-Dec-12 14:02:15

Good luck with the neurologist. Hope that you start to get some answers x

JKSLtd Thu 13-Dec-12 15:05:49

Good luck with the neurologist smile

Curtsey Thu 13-Dec-12 16:03:42

another hand here from one with a 10-month DD. Yours sounds so lovely. Thinking of you.

QODRestYeMerryGentlemen Thu 13-Dec-12 16:09:16

Thinking of you still

narmada Thu 13-Dec-12 16:19:45

I have just read back over your messages. She says mama and dada to the correct person, at 10 months of age ?!!?!?!?! My son did not correctly use those terms until he was nearly two years of age, did not crawl until 11 months, could not pull up until about 13 months, and did not walk until 17 months. And he is, to the best of our knowledge, neurotypical.

seeker Thu 13-Dec-12 18:10:28

Narmada, that was worrying me too. I asked what made them suspect developmental delay, but my question got lost in the crowd.

FanjoTimeMammariesAndWine Thu 13-Dec-12 18:11:24

I think she said the MRI scan showed the grey and white matter in her DD's brain had only developed to a 7 month old level. They weren't talking about milestones.

JugglingMeYorkiesAndNutRoast Thu 13-Dec-12 18:22:46

Then again her DD is only 10 mths and am wondering whether there would be much physical difference with a 7 mth old's ? Just speculating, I don't know much about it.

dikkertjedap Thu 13-Dec-12 20:12:06

How did it go with the neurologist?

You know that you can always look for a second opinion when you are in the UK, although to be seen quickly you probably would need to go private if at all possible.

Thinking of you.

milkybrew Thu 13-Dec-12 20:26:44

OP was your daughter born in the UK? If so, did she have the newborn screening heel prick tests at a few days old?

Shinyshoes1 Thu 13-Dec-12 21:28:01

Hand holding from me xx

marriedandwreathedinholly Thu 13-Dec-12 22:19:54

Still holding your hand. x

twolittlebundles Thu 13-Dec-12 22:40:34

Still here too.

OpheliasWeepingWillow Thu 13-Dec-12 23:00:45

Hallo everyone. <sleepy wave>

Sitting here in dark waiting for dd to wake up. Neurologist came late last night and said most likely explanation (for him) is a genetic issue rather than an Inborn Error of Metabolism. The latter would be a horrible diagnosis so I hope the metabolic doctor agrees.

I just want to know what is wrong.

He examined her again and she waved hello! He can cancelled the lumbar puncture as he thinks 'she looks too good' to have metabolic disease. I hope so.

Another day trying to feed her ahead. Sorry if I miss questions - will try and address. X

OpheliasWeepingWillow Thu 13-Dec-12 23:01:41

Heel prick test not done as she was born in Asia. Some tests not routine in China.

OpheliasWeepingWillow Thu 13-Dec-12 23:03:51

seeker narmada a slight loss of muscle tone and head not maintaining curve made them do MRI. Also I think they wanted to rule out tumours (?)

narmada Thu 13-Dec-12 23:26:29

Well, I think that is good news ophelia, relatively speaking.It would be great if an IEM could be ruled out. I hope with my whole heart it is discounted, and soon.

I am not medically trained but it occurred to me that babies rend to grow in fits and starts. I wonder whether she is due a growth spurt.

Remember- and these are words of wisdom from my lovely GP - paeds see a skewed population and deal mostly with low-frequency conditions. They tend to seriously err on the side of caution and want to rule things out.

I hope you get some answers soon. If not, have you the means to fly back to UK and be seen by GOSH?

Is your husband there now?

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