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SN children

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Original poster

Ds is on the 0.4th percentile for height now. It's really starting to hit home now that he's going to be a dwarf

48 replies

emkana · 16/03/2008 21:29

I have all sorts of feelings which I can't very well put into words, so why on earth I'm starting a thread about it God knows.

OP posts:

mymatemax · 16/03/2008 21:36

I've no words of wisdom, I guess you will find the words in time BUT...
I've just had a look a your profile & you ds is SO HANDSOME.. must be off the scale for good looks!

eidsvold · 16/03/2008 21:38

emkana - you have reached another stage in your amazing journey. You will have all sorts of thoughts and feelings that will be hard to articulate. But that is okay - this is just the next step.

I know it is not much help or comfort but I did not want your post to go unanswered.

Tamum · 16/03/2008 21:41

He's certainly on the 100000th percentile for beauty, that's for sure, but I can really see how hard it must be to come to terms with this. Is it any tiny comfort to think how awful the prognosis seemed to be at one stage? Probably not I would imagine. Have a hug {{{}}}}

CoteDAzur · 16/03/2008 21:42

He is gorgeous!

Can't you ask for human growth hormone treatment?

berolina · 16/03/2008 21:43

I agree with mymatemax. He is really unusually stunning, em.

Do you have any idea of what height he is likely to reach? I ask because my dh is unusually small (160cm) without a condition and what I can tell you about his life might be comforting.

Original poster

emkana · 16/03/2008 21:45

Thank you for the kind words!

I guess they're going to look into growth hormone treatment, but according to what I read it doesn't do much for his type of condition, so I'm not putting my hopes up. The only thing that can be done to increase height is in all likelihood limb lengthening surgery, and I shudder at that.

tamum, it does help to think about how awful things could have been.

OP posts:

Original poster

emkana · 16/03/2008 21:52

bero, the only indicator I have for his future height are the achondroplasia growth charts, which might not be right for him because he doesn't have achondroplasia, but a different type of dwarfism. But according to those he could hope to be a tall dwarf , so maximum height possible 1.45 m.

OP posts:

berolina · 16/03/2008 21:58

ok, dh is taller than that. But he is still markedly small and has really, honestly never had a problem with it, either from without or within. He has a great, actually quite fascinating, but not arrogant, confidence in himself. And he is not conventionally attractive, unlike your really extremely beautiful boy (I am not just saying that). You are a fabulous mother and I'm sure, in whichever way he develops, he will take from his upbringing a solid sense of self that will see him through.

MrsJohnCusack · 16/03/2008 22:01

oh emkana
i've no advice but I can't resist telling you how absolutely and utterly beautiful he is.

moondog · 16/03/2008 22:04

Em,he is who he is and he is your precious and much loved baby and always will be.
Anything else is entirely incidental and secondary.

That doesn't mean that you can't feel the feelings you feel though.

Big hug.

XXXXX

moondog · 16/03/2008 22:04

(And have just had a peek and he is a stunner!)

cadelaide · 16/03/2008 22:11

gosh, he is isn't he?

Original poster

emkana · 16/03/2008 22:12

You're going to make me cry in a minute if you don't all stop being so bloody lovely about ds.

OP posts:

Peachy · 16/03/2008 22:15

0.4th centile? Snap for ds1- he's not got dwarfism though, just short. Was born onto it and never yet shifted. haven't looked into future heights- might be an idea to raise with Paed then.

Emkana you will get lots of these Sn moments of realisation, but they do pass and they become your LO again. Theya re hard moments and probably one of the worst aspects of SN aprenthood, but they are transient and you do slowlya dapt to them and learn how to deal with them.

Original poster

emkana · 16/03/2008 22:19

Thanks peachy.

About your ds - might not be any need to worry about his size. The thing is with ds he was on the 98th percentile when he was born and has over time dropped down the percentiles. Next he will completely fall out of them so to speak, whereas your ds is probably going to just continue growing along the 0.4th percentile and be a normal yet small size as an adult.

OP posts:

Peachy · 16/03/2008 22:22

TBH I think he will just be short=- although I was extemely small until I hit 16 so might go that way. We shall see .

DS1 was small due to IUGR (eclampsia) so we'll ne ver know what size he was 'meant' to be but all 3 are the smallest in their classes and neither of the older 2 has even noticed! Which is a good thing.

TotalChaos · 16/03/2008 22:51

I agree with Peachy about the "moments" of realisation." I hope this isn't a crass comment, but my stepdad is I think only about 150cm tall, not got a form of dwarfism, but his height really doesn't seem to bother him at all.

Arabica · 16/03/2008 23:13

Hi Emkana
I'm just wondering what's making you think about his height? Are you worried about what people will say or think when they see DS and it will soon be obvious he's not as big as other kids? I'm thinking this because I didn't mind DD having a pair of glasses but I can't cope so well with the hearing aid. It's as if a hearing aid plus glasses says 'special needs child' and I am not sure I am ready for that.

Original poster

emkana · 16/03/2008 23:21

Good question Arabica.

I think so far nobody knew that ds was "different" because he was still a normal size, but it's now becoming more and more obvious. So I do worry about what reactions/comments we're going to get. And longterm I worry about bullying. And I worry that ds might find it very hard to come to terms with his size.

I once saw a programme on dwarfism and it said soemthing about the very high suicide rate amongst male teenagers with dwarfism. That has stayed with me.

OP posts:

PrincessPeaHead · 16/03/2008 23:23

oh emkana. he is lovely. I'm sorry you are feeling rollercoastery.

coppertop · 16/03/2008 23:25

Sorry I don't have any wise words, Emkana, but I can't help agreeing with the rest of the fan club about the gorgeousness of your ds.

eidsvold · 17/03/2008 08:06

had to peek - he is gogroues!! dd2 asked me who that lovely boy was - she came in whilst I was looking at his pic.

eidsvold · 17/03/2008 08:07

that should be gorgeous!

berolina · 17/03/2008 08:25

When dh was in Y4 at school someone approached him asking if he was little X from kindergarten. At my Masters graduation while he was trying to find his seat someone asked him if he'd lost his mum and dad. He was always small and has remained small - possibly within 'normal' limits but really only only just. Honestly, it has never held him back, and he was never bullied (except briefly as the 'new boy' when he moved schools - his sportiness soon put a stop to it, though). He seems to be surrounded by a real aura somehow. Many people who meet him comment on it.

ds1 is a 3rd-centile boy, with occasional excursions off the bottom of the charts, and our paed (who is otherwise brilliant) has muttered about giving him growth hormone later, not because anything is wrong but to make him fit in. I won't do it. I won't interfere with my lovely boy in order to still further homogenise society.

Of course I'm not saying at all that my ds1 - who is likely to be 'normally' small, the height-projection-at-2-years thing means he would be about 166cm - will face the same challenges as yours. I do think, though, that it will be really important for both of us to give our boys firm confidence in their bodies and abilities. I'm sure you can do that, with your love, energy, general clued-up-ness and toughness from all you went through on the road to him - even if you don't feel very tough now, the determination and resilience earned from that experience is in there.

Ich denk an dich.

TotalChaos · 17/03/2008 08:34

((emkana)) again I think the worries for adult life/happiness/mental health are very normal.

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