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Original poster

What *should* a 21 be able to do?

80 replies

Piffleoffagus · 23/07/2004 17:10

I knwo my dd is limited a little due to her light weight and physical immaturity, as she has Noonan Syndrome albeit mildly, but what I would like to know is what did or do most 21 mths olds do with their time?
What tpys have they mastered, do they know colours? Can they mimic words from the off?
I am trying to establish how far behind my dd could be or whether she is within the normal remit for her age, my HV is thick as large plank, and I do not want to be referred yet agian if I am not sure there is a problem, my elder child ds 10yrs was an astonishlingly able child and did everything early, so I do not know what is normal, I cannot compare any child to him let alone my diddy girl.
Also anyone who had a slow starter, how did they evolve?
I must sounds paranoid and yes I know she is young to be worrying but... you just do..

OP posts:
Original poster
Piffleoffagus · 26/07/2004 11:25

Wallace, with your dd's low weight too, did this improve after surgery? I know a large VSD can affect weight gain?

Don't apologise for airing your story here, it is really nice to be able to share some of the worries...

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Fio2 · 26/07/2004 11:28

sorry was just being purely nosey!

But piffle and wallace your girls are both gorgeous

Original poster
Piffleoffagus · 26/07/2004 11:34

thank you fio

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strangerthanfiction · 26/07/2004 12:05

What lovely little girls, piffle and wallace. My dd is almost identical in build to them both though she doesn't have Noonan syndrome - what exactly is that (I've heard of it in the past).

Anyway, hope your dd's still doing lots of clever crawling piffle!

Original poster
Piffleoffagus · 26/07/2004 13:11

It's a collection of features STF which is characterised by a certain heart defect, low weight gain, short stature and some dysmorphic bodily features which can vary in severity and number, low set, counter rotated ears, hooded eylids (ptosis), wide flat nasal bridge, elongated forehead, short square ended fingers, raised finger and toepads. pigeon chest, low muscle tone (hypotonia)
My dd has some very mild versions of the symptoms and as she has grown they have become less pronounced.
It can affect boys much worse than girls and low weight and shortness in height are pretty awful for boys more than girls, many do go for growth hormone I am told.

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Wallace · 26/07/2004 18:56

Her weight did improve after surgery. She was always below the 9th centile, but is now between the 9th and the 25th.

I'll see if I can find a photo from before her surgery. I don't have many on the computer - don't have a digital camera so I have to scan them in, and we haven't got a scanner either anymore!

Wallace · 26/07/2004 18:57

Thanks Hulababy and Fio

Wallace · 26/07/2004 19:21

Only one I could find was when she was 11 months, she looks tiny and skinny. I have put it on the with the others on photobucket password is mumsnet
and yes that is a bottle of vodka she has got blame my brothers! BTW It is unopened though.

Original poster
Piffleoffagus · 26/07/2004 19:32

still cute as a button!
Did she meet all her milestones etc?
Have they ever suspected any syndrome etc. Or was it just the ASD that they worried about?
Just some of the things we got told from the Regional Genetics Service, were that, they wished they could see every baby with a heart defect as 85% of them could be part of a syndrome based condition.
Sorry this is worded terribly Wallace... I am sure your dd has not got any syndrome, what I mean was did they ever you know... mention it to you... sort of thing...
Off to obsess about something else now..
slinks away...

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zebra · 26/07/2004 19:47

Cute photos, ladies. Happy kids.
Wallace -- I think my DD must be approx. 85 cm tall at almost 2y+10 months old.... but haven't measured exactly. I now have a DS who is very long & whizzing thru clothes that his siblings still wore when much older. Seems even "normal" siblings can be very different sizes.

Wallace · 26/07/2004 20:25

Zebra - your dd is even tinier!

A syndrome has never been mentioned to us...
occasionally I do wonder though as she does have a few odd quirks (all of which probably are completely normal!). She has bright red cheeks, very dry skin, I am sure she walks/runs funny (and I am sure there are many more things that I have obsesssed about in the past...).
She has met all her milestones - she was on the later side of average rolling over, sitting,standing,crawling,walking. Her fine motorskills are very good, as is her speech.

I think that if she did have a syndrome (which she probably doesn't)it should have been picked up, but I sometimes think I would like to get her tested just in case. I have a little sister who has a chromosome translocation (I think!)picked up on an amniocentesis done because of my mum's age, she but absolutley no effects from it, but I often wonder if maybe my dd has a slight blip too. I know I should mention it, but I think the doctor would just laugh at me!

We did take part in a genetic study a few months ago to look for a gene that may cause some heart defects, they made it clear that no individual results would be given unfortunately.

Anyway...you started this thread to ease your worries, and I think I have certainly done that by showing you that there is someone out there even more neurotic than you

my turn to slink away me thinks.....

Original poster
Piffleoffagus · 26/07/2004 20:41

ahhh Wallace life is full of twists and turns, but at the end of the day, our little girls are the way they are because of they... way they are, so who would change a bloody thing?
NOT ME!

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zebra · 26/07/2004 21:16

I'll have to measure DD properly, now, I'm only guessing based on her clothes sizes...
This discussion made me go look up my nephew's rare "syndrome" -- situs inversus. All his internal organs are on the opposite side from usual. I wonder if we all have some syndrome or another!

Wallace · 27/07/2004 09:22

So right piffle! We are all blessed indeed

Zebra - does your Nephew have any problems or his he fine, but just everything in the wrong place?
Let us know when you measure your dd properly.

Original poster
Piffleoffagus · 27/07/2004 11:57

I think when you have a child on on the 0.4 centile or was we were 2cms under it at one point, you feel like you have the only kid in the world who is that small.
our paediatrician said last time we saw him, that her development was astonishing for her size and that he and other professor types were amazed as well. I find it hard not to compare her to other babies the same age thoug, but what I need to do is drop 6 mths off her age and put her firmly there to take some of the worry away.
When at a wedding last weekend it was apparent she was much nearer the 12mth mark than the 2yr mark.
I hope it all levels out as she gets older though.
this has been a really lovely thread thank you everyone!

OP posts:
Fio2 · 27/07/2004 12:00

wallace - if you did want a few answers whether or not it is a syndrome your daughter has you can always ask to be reffered for genetic counselling and sometimes they can find an 'answer' for things. Sorry this is a bit vague as I havent read the whole thread! But we are are having genetic counselling with our dd and look at a wide range of different things toi try to find answers

Original poster
Piffleoffagus · 27/07/2004 12:13

it is terrifying how many syndromes there are. The geneticist we saw from St Georges Dr Tessa Homfray was superb. I am not sure where you are though Wallace, in a way I hated the diagnosis but in the whole it made everything slot into place, I knew what to expect and more importantly where to go for help.
I did go through a lot of denial though

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zebra · 27/07/2004 12:29

88.5 cm tall! Puts her on 9th %-tile, so positively giaganyic compared 2 some of yours. 2.5 months ago, when she was 2y+6 months I had people guessing she was 18 months, though.

I think my nephew is ok, Wallace, with being situs inversus. Doesn't seem like he has Kartagener's Syndrome, at least. I should ask his mum.

Bagpuss30 · 27/07/2004 12:34

Piffle and Wallace, just had a quick nosey at your photos and wanted to say that your girls are both gorgeous . I was interested also to read about your experiences with heart defects too, as my ds was diagnosed with Transposition of the Great Arteries shortly after birth and has had surgery. We are really lucky in that he hasn't had any further complications so far but I know what you mean Wallace, when you say you can't quite relax. DS's next appointment is in September and I am getting butterflies already just thinking about it. The other thing I was going to mention is that ds, whilst being quite a long baby, did seem to slow down between 18 months and 3 years and then has since gone through 2 clothes sizes in about 4 months.

throckenholt · 27/07/2004 13:20

zebra - I don't think your dd is particularly small for her (especially not compared to my DS1) - I know a lot of other girls of similar age and they sre pretty much the same ball park. She just isn't that really tall skinny lanky build (yet).

Original poster
Piffleoffagus · 27/07/2004 16:43

It is hard though when every 2nd baby out there looks like a sumop wrestler, even my 1st he is now 10 he is 5ft 1 and has size 6 feet and weighs 6.5 stone, he was always a very tall and strong build as a kid.
This is all I have to compare my dd against so it is so hard, I get so sick of explaining why she is small that I either lie about her age or simply become agoraphobic and never take ourselves out to toddler groups.
Sad huh... but would you ever say to someone at toddler group, why is your toddler so fat?
Hmmmm

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Bagpuss30 · 27/07/2004 16:52

LOL Piffle, I would never make a comment about another person's child, I just think it's so rude. I don't understand why people find it so acceptable to comment on everything they see. When you put it like that it sounds so ridiculous. For the same reasons as you, I never took my ds swimming as a baby, because I didn't like people staring at his chest .

Original poster
Piffleoffagus · 27/07/2004 16:54

one of the benefits is that when I say she is 13 mths (which she would be on the 50th centile for etc) she appears incredibly advanced...
tee hee so I do get my own back sometimes...

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Thomcat · 27/07/2004 17:00

Piff - shall i send you my portage check list?
It has stgaes and then a list of things they may or may not be doing that you can tick off as and when. Not sure it's esp for a child with DS. Let me know and i can copy and post it to you, actually I might just have a spare one.
TC x

zebra · 27/07/2004 20:37

Come on Throckenholt -- you're about 5'-nothing & your DH is no giant either! Dont expect your boys 2 be big.. whereas giants r a dime a dozen in my family.... But now that DD has moved into 18-24m trousers, which was my goal 4 her this summer, I can officially stop worrying.. Fio2, how big is your DD?