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DD 4 next month and below 0.4th centile

(25 Posts)
Vintagegoth Tue 30-May-17 18:33:26

Not sure if it is a hand hold that I need, or advice.

DD2 is 4 next month and starting school in September. She is a happy bubbly child, but very small for her age. She has always been small, but eventually fell off the bottom of the chart for height and is showing no signs of getting back onto it.

We were referred by our GP and have seen a paediatrician twice in the last 6 months. She has ruled out most of the obvious things that could be wrong, but has now referred us on to specialists for growth and genetic testing.

Does anyone else have experience of very small children at this age? What kind of questions should I ask the specialists when I see them?

I just feel so alone at the moment and worried about her future.

Booboostwo Tue 30-May-17 19:56:12

I am sorry I do not have any experience of what you are going through but I didn't want to read and run. I don't know if this helps at all but it took 4 years to get a diagnosis for my DD (rare bone disease) and it was worse waiting than dealing with the issue. Not knowing what was going on, not having answers, imagining the worst...were all very stressful. What I am trying to say, very awkwardly, is that hopefully you will have an answer soon and maybe it will all seem more manageable than it does now. Knowing what you are dealing with and having a plan of action may help you feel more reassured and in control.

Vintagegoth Tue 30-May-17 20:25:15

Thanks Booboostwo. You are right. I think part of the problem is the unknown. She has other health problems and we are trying to work out if the two are linked.

Good luck to you and your DD.

flutterby77 Tue 30-May-17 21:29:40

My son is nearly 3 and way below the 1st percentile. He has a genetic condition called Russell Silver Syndrome and has growth hormone injections. It's good that you are getting this investigated - I hope you get to the bottom of it. What are her other health issues? The child growth foundation (U.K.) and magic foundation (us) have a lot of information on child growth and conditions which could affect normal growth.

Vintagegoth Tue 30-May-17 21:57:17

Hi flutterby, so far she has been diagnosed with low muscle tone and joint hypermobility. She doesn't like to walk very far and complains of sore legs. She is also is quite unsteady on her feet and often has falls. In all other areas, I would say she was on target for a child of her age. It just seems to be the physical side of things that she struggles with. A friend suggested joining the hypermobility group on Facebook and it has scared me with lots of posts by adults who are severely affected and are in wheelchairs.

The paediatrician did suggest growth hormone injections may be needed, but wanted her to see the growth specialist first.

Thanks for the tips. I hope the treatment goes well for your son.

LatinForTelly Wed 31-May-17 09:43:33

I second talking to the Child Growth Foundation - they have a great helpline and a (private) facebook group, which you can ask to join.

It sounds like your daughter is being referred to the right people, but if you want extra info or hand-holding, the CGF are great. As Flutterby says, MAGIC are good too but as they are US based, a lot of info is about dealing with insurers etc.

Good luck. I think the worst stage is the one you are at; the not-knowing. flowers

Sleepingpenguin Wed 31-May-17 14:10:25

Are the rest of your family small or bigger? I ask this as DD1 is 5 and is under the 0.4th centile for height and weight on the charts. The rest of the family are small (not as small as her though!) But due to that it has been marked down as just her and no further investigation needed.

flutterby77 Wed 31-May-17 21:20:37

it would definitely be useful to get info from cgf. Their Facebook group is very useful and has the benefit of many parents with experience of a variety of growth conditions so I am sure you will find more answers there.

Galla Wed 31-May-17 21:29:07

My almost 4 year old is 0.2 percentile for height and about 7th for weight.
He was nearly 9 pounds when born and been falling down the charts since he was about 6 months.
He is seeing a paed every 6 months with a watch and wait approach. He said he will xray his hand when he is 5 to check growth plates.
But I would rather sooner action and feel fobbed off to an extent.
Nice to people in similar circumstances as we are surrounded by what seem to be giant 2 year olds who are bigger than him.
He doesn't have hypermobility or other issues that are obvious to me.
The paed asked if he snores which he does. Not sure what the relevance is. Did that come up with you?
I think he may suspect a hormone deficiency but no action until hand x ray.

Vintagegoth Wed 31-May-17 22:26:55

My husband is 5'10" and I am 5'2". Her older sister was small when a baby, but 50th centile when starting school. The paediatrician has asked about height in our family, but thinks that he size is small enough to be a concern. Her weight is on a higher centile, which maybe makes a difference. Based on her current height and growth she will be 4'8" as an adult.

Thanks for advice on CGF. I will take a look when I am feeling a bit stronger mentally. This other fb group has really got me worried.

No mention of snoring at either appointment Galla. I think the combination of size and other issues has got the paediatrician thinking. She really is much more wobbly and weak than other three and four year olds. She struggles to climb onto the sofa.

Thank you for all your comments and advice.

cestlavielife Wed 31-May-17 22:39:56

My dd was similar centile then fell.ofg charts ...also walked late hypermobile weak legs etc ..
The growth falling was due to coeliac. She was diagnosed age four.
The growth clinic will or should test for coeliac alongside other basic tests.
Make sure she eating plenty gluten ahead of test.

cestlavielife Wed 31-May-17 22:42:16

The weakness also improved appt on gf diet after diagnossis.
Coeliac is a real possibility to.make sure it is included in the tests.

Growth clinic will.monitor growth over six months before looking at more invasive growth hormone tests but the first appt.should see basic blood tests and please do ask for a coeliac screen .

Inbetweenus Wed 31-May-17 22:45:09

Sleepingpenguin I would ask to be referred again and find out all the investigations they did. If DD is at the bottom of genetic range there might be more to consider. It's particular important to know bone age as if advanced, dd would fall further below 0.4th just as she stops growing. Some girls stop growing at 11 to 12. Child Growth Foundation would be helpful.
I found my child was overlooked as we are a small family, but should never have been as short as she is, well under 0.4th.

cestlavielife Wed 31-May-17 22:47:44

Galia... They can do bone age and bone scan now...?? nor sure why wait to 5 ?
Ask for growth clinic.

Booboostwo Thu 01-Jun-17 05:44:20

Galia the snoring may be related to sleep apnea? If so it is treatable with a mask and/or surgery depending on the cause so I would push for a referral. For what it's worth my DD had a bone scan at 5yo and it was quick and pain free - well worth doing for peace of mind

InMySpareTime Thu 01-Jun-17 06:07:28

DS was teeny tiny from birth (snored as well due to glue ear and enlarged adenoids - perhaps worse with small children as Eustachian tubes would be narrower).
He started school in age 18-24 month school trousers and with size 5 feet, looked so wrong in a playground of giant children!
Consistently small all through childhood, then hit 14.9 and grew a good foot in a month, now he's taller than me grin.
Just putting in my tuppen'orth to show there's not always a "reason", some kids are just small.

Fedupoftheheat Thu 01-Jun-17 06:36:19

My ds has been referred due to his height. Not so much that he is small (he is) but he's not growing as he should. I've pushed for this referral as me and my husband are tall and he's just tiny and only grown a cm in 6 months. I have asked them for him to be tested for coeliac disease.

Sleepingpenguin Thu 01-Jun-17 08:07:35

Inbetween, I don't think I made myself clear there was some investigation before that decided. However it really wouldn't make her much smaller than myself and within "normal" for our families. I was a similar size at that age had a small growth spurt that got my to just over 5ft. For her there really is no need for anything else, I was just saying for some small really is where they are supposed to be. There is no further issues for her though and I appreciate that it may not be the case for others including the OPs DD.

imjessie Thu 01-Jun-17 08:22:24

A lot of genetic conditions present with short stature but it's great that she is on track developmentally. They will probably refer you to a endocrinologist who deal with the hormones etc that control size ( among other things ) . My son has a genetic condition and is little but we saw the endo and she was happy it was normal ish and he didn't need hormone treatment ... I'm actually ok with him being little because I'll be caring for him for life and it will be easier as I'm 5 ft !

Vintagegoth Thu 01-Jun-17 09:29:47

The first round of tests ruled out coeliac disease and Turner syndrome and further blood tests have come back normal for liver function and thyroid. I guess the small size, slow growth plus other things is making the paediatrician not want to write it off as "she's just small". She has grown 1cm in the last 6 months and I was so pleased when she did. She had not grown at all for months and months. She is so different to her older sister, it is hard not to compare how far behind she is.

I am hoping that some sun and fresh air over the holidays will get her outside and moving more and she will make up some ground before September.

Thank you for sharing your experiences and advice. The school run mums are sick to death of my worrying and my ILs think there is nothing wrong with her. It breaks my heart to see her struggling on play equipment in the park and not being able to join in as much.

Galla Thu 01-Jun-17 12:25:33

How well is she eating Vintagegoth?
My DS is up and down but generally a nibbler and calorie -wise not very much eaten at all.

People think its cute when he asks to go to the toilet or speaks as he looks barely 2. But he's almost 4, so I do have to explain his age and that is is small for his age, not highly advanced!

It is a worry, more so as he gets older and I would like to advocate more for a referral to an endocrinologist or cealiac testing.
Got a few leads to follow from this thread, thank you.

cestlavielife Thu 01-Jun-17 13:17:45

There is growth hormone testing involving day unit at hospital (they take and test bloods every half hour or hour) Also overnight one. Child growth foundation will have info. Ask endo as 1 cm in 6 months is v little...
Ask for a micro array genetic testing.

Vintagegoth Thu 01-Jun-17 16:40:31

She is quite a fussy eater, but will eat good amounts of food that she likes. I try to do a mix of food I know she will eat with more challenging stuff during the week, so she can try new things and isn't always getting the easy option. She struggles to cut food up by herself and sometimes she struggles to chew meat. I normally end up helping by cutting food up small and helping her to load it onto the fork. Trying not to turn food into a big thing, but sometimes her fussiness is a bit trying.

Thanks for the pointers. I will make a note of the tests to ask for when we get an appointment date.

Inbetweenus Thu 01-Jun-17 17:20:51

The Child Growth Foundation's parent facebook forum is a great source of support and advice for parents of children that aren't growing very well. Generally, 5 to 6cms a year is used as a marker of appropriate growth.

cestlavielife Fri 02-Jun-17 12:57:10

If she has hypotonia hypermobility then this can affect all muscles including chewing .
Maybe a neuromuscular review

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