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Original poster

Measured DD's height this eve and she's extremely short - going slightly mad with worry now

53 replies

EagleRay · 11/04/2014 22:35

Hi - DD is nearly 15mo and doing ok developmentally. Had her weighed for the first time in ages this week and she's around the 50th percentile, and has pretty much followed this line since she was very young. Her head has always been extremely large since she was born, but it's growing consistently and GP confirmed there are no issues.

So tonight we have a tape measure handy and decide to see what height she is - she stands supported so stood her up against the doorframe, made a mark and measured. Then I entered it on the chart and thought I'd made a mistake - the measurement was 68cm, which is pretty much what she was at 8 months Shock

I just don't understand it - as far as I know, we measured fairly accurately but her height isn't even on the bottom of the chart! Surely if she was extremely short for her age, it would have been pointed out by someone at nursery, relatives, friends, GPs, nurse, health visitor etc, who have all seen her several times recently? Unfortunately, DP got really snappy and defensive about it and said well of course she's normal height, so didn't pursue it, but I'm really worried now.

She's in age-appropriate clothes and we're both of average height (actually DP is well over 6').

What on earth is going on? Has anyone else failed to notice their DC have stopped growing? I'm going to try and measure her again tomorrow - if anyone has any advice about how to take a reasonably accurate height I'd be very grateful.

I think my horror and panic stems a little bit from starting full time work in Jan - life is really full-on now and I'm always worried I'm going to miss something fundamental as there's no time in the day to do things properly Sad

OP posts:
SavoyCabbage · 15/04/2014 22:18

That's good.Grin She'll have a growth spurt now and eat you out of house and home and you will think you have shrunk all her trousers.

breatheslowly · 15/04/2014 22:21

One of the reasons that HV don't measure length/height is that it is really inaccurate. I knew someone whose DD "shrunk" 4cm in 2 weeks when measured by HV.

MiaowTheCat · 16/04/2014 07:34

This reply has been deleted

Message withdrawn at poster's request.

Original poster
EagleRay · 07/03/2016 22:33

I know this thread is nearly two years old now but thought I would add an update as it turns out I was right to be concerned about her growth...

A few months after posting this, she was referred to a dietician and paediatrician mostly due to suspected food allergies and while she was in hospital they measured her properly and found that she was indeed short (right at the bottom of the chart). There were slight concerns for two reasons: 1) parental height is medium/tall and 2) she had gone from 90th percentile for height at birth to the very bottom of the chart. On top of that, the doctor felt she displayed some 'features' (ie body proportions) of a possible growth disorder and so we then were referred to a bigger hospital for growth hormone test and also genetic testing. Her weight has always been around the 50th-70th percentiles, which is where we would really expect her height to be too.

We had our money on growth hormone deficiency as it seemed to 'fit', having spoken to various people about it. The tests came back normal and so it only really left genetic issues and we finally had the results last week confirming she has a gene deletion.

It's been a bit of a suprise (although we knew something was up) but the good news is that it's only growth and not anything else. Growth hormone treatments has been proven to help children with her condition and so we will start on that soon.

She's now 3 and still only 87cm but otherwise very healthy!

OP posts:
MattDillonsPants · 08/03/2016 00:40

Thanks for the update OP...I read this thread just now and then realised it was old...but there was your update! I have a friend, now 43 who is only 4.10...she's a very successful and healthy actor who now has two children and a lovely DH.

She's beautiful and her height has never affected her in either her confidence or her career.

Zaurak · 09/03/2016 20:03

If you watch how the health pros do it, they lie them flat, head on one end of the thingy and kind of gently pull one heel out.
If you stand them up they slump.
Plus it's like trying to measure an octopus - they don't exactly sit still at that age ;)

Zaurak · 09/03/2016 20:05

Ah sorry didn't read your update...

Botchit · 09/03/2016 20:14

Hope you have success with the treatment EagleRay. May be helpful to try and connect with other families with children with the same gene deletion? Sometimes people with children further down the line, or maybe from other countries have the most uptodate and useful information, particularly if it's a rare condition. Best of luck.

minipie · 09/03/2016 20:23

Reading with interest as DD (1yo) is also noticeably short. The shortness seems to be all in her legs. Also big head and medium to high centiles for weight.

EagleRay may I ask what genetic tests were done? DD had array CGH at birth so I am wondering if I can assume that would have picked up any genetic issue.

Glad to hear your dd is fit and well, and hope the hormones help with the height.

Expatmomma · 09/03/2016 20:30

So glad you got answers and that her gene deletion is "only" growth and do can be corrected over time.

My DS was below the bottom curve of the growth chart from birth and his growth was stunted not from a genetic deletion but steroids due to another chronic illness.

He was assessed at age 9 and the funding for growth hormones put in place but we were advised to wait and see.

He had a later puberty than his friends but now at 16 is still growing and is currently 175cm. A height we thought we would never see without hormones.

I just wanted to post our story for other parents to know sometimes very small children do finally grow. I am really glad though that we looked into the hormones and had them as a back up plan just in case.

Original poster
EagleRay · 10/03/2016 13:08

Botchit - luckily I've been able to get in touch with other families with children with growth disorders (diagnosed and undiagnosed) and even correspond with a parent who's child has the same gene deletion (although the history of the child is very different which has surprised me!)

Minipie - I will pm you!

OP posts:
JaneHair · 11/03/2016 13:11

Hi OP - may i ask what the deletion is? Is it an 18q one by any chance?

Original poster
EagleRay · 14/03/2016 23:07

JaneHair here's a link to more information on the deletion

We finally have our hospital appointment tomorrow morning where we will find out more about it.

OP posts:
headinhands · 25/03/2016 12:10

More than likely is that the previous measurement was inaccurate and put her at taller than she was so this latest one makes it look like she hasn't grown at all. Ds was on 0.2 centile from about 1 to 7 yrs old but is now riding high on the 16th :)

captaincake · 25/03/2016 19:01

Watching this with interest. I have posted before about my concerns about DS's percentiles. I am waiting for an unrelated test for him which will be a couple of months then I will be going to the GP. Minipie will you come back to this thread if you have any investigations? My DS has a head on 91st, weight 75th-91st, according to parental height should be around the 75th but is 9th. So similar to your DD?
How did the appointment go Eagle.

Dalmatian2017 · 25/03/2016 19:27

Your link doesn't work eagle.

Blueberry234 · 25/03/2016 19:33

This is really interesting I have a 21 month old who is 9th for weight but off the chart for height

Original poster
EagleRay · 25/03/2016 20:02

Captaincake - how old is your DS now? And what were his percentiles at birth? The two big factors for us (and the doctors) which flagged up growth concerns were a) not coming anywhere near parental heights and b) now following a steady growth line since birth (height had gone from nearly top to underneath the chart)

We had our appt a couple of weeks ago and the doctors said they aren't able to predict DD's final height but they think she's at the less severe end of the range for this genetic deletion. She will be on GH injections for 12 months initially, and research has shown that if it's going to make a difference, it should be apparent in those first 12 months. We hope to start on the injections (after training!) in the next few weeks.

I hope you get on ok at your GP's - but if not please come back here for further advice! I'm not an expert but know quite a few parents now who are several years down the road with this sort of stuff.

Dalmatian - if you google short stature homeobox gene you will see the article I tried to link to, plus several others. Most information out there is quite clinical in nature and often hard to interpret.

Blueberry - has your child tracked these percentiles since birth or has there been big drops? And what about parental heights?

OP posts:
captaincake · 25/03/2016 20:23

DS is 22m now. At 6 week check height 25th, weight 9th and head 50th. now weight 75-91st, head 91-98th and height 9th. Parental cross chart thing puts him at 75th for expected height. Less concerning is no massive drop in height like your DD. I am going to wait till after his hearing test take him to the dr to talk about them both at once (he's not talking/understanding) because appointments are £65 each so I'd rather do it in one!

DizzeeBorg · 26/03/2016 20:31

This reply has been deleted

Message withdrawn at poster's request.

minipie · 26/03/2016 20:40

captaincake yes I will update - her 1 year check with HV is this week so we'll see where she is centile wise and what the HV says. Not sure what her current measurements are but she definitely still looks short and fat!

Blueberry234 · 27/03/2016 10:44

Weight wise he was 2nd dropped to 0.4th and then settled at just below 9th. Length no idea they never measured him. Last

hazeyjane · 27/03/2016 19:48

Glad you have some answers for your dd, Eagle. Does the gene deletion ever come with other difficulties?

D's is

Paulat2112 · 27/03/2016 20:06

If she is in the corresponding age for clothes then I think she sounds ok. My ds2 is almost three and only in 12-18 month clothes Confused he is tiny, but I'm 4ft 11 lol. Dh and our other dc are all good heights but I am taking him to get weighed and measured at the hv clinic on Tuesday as interested to see where he is

youcantgoback · 20/09/2016 18:54

Hi EagleRay
I've pm'd you as I have a child with an undiagnosed growth condition and wondered if you might have some advice? It's more about connecting with other parents who found out too late to do anything to help their dc?