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Sotos syndrome

(26 Posts)
Raindog Thu 11-Jun-09 15:44:10

Hello - I'm new to this section but we've just been told that DD2 (2.5) has Sotos syndrome. It hasn't been 'officially' confirmed but everything I've read since does suggest she has it. Does anyone else have DC with Sotos? I would love to hear about other people's experiences.

DD2 is very tall for her age with a large head/hands/feet and she has mild/moderate motor skill delay and speech delay. We just don't really know what to expect for the future. She has had a few episodes in hospital where she developed bronchiolitis and needed to be ventilated but I don't know if that is a direct link to Sotos or just really unlucky. At the moment her health seems fine.

She's an absolute delight though - she has recently started to talk and seems to know lots of words even though she rarely puts them together in sentences. She does manage to use them to good effect though like shouting 'bum' with great gusto (she was taught by DD1 grin)She's funny, cheeky, sociable, independent and strong-willed, loves her big sister and the other children at her nursery, and is generally a joy to be with.

We have the choice to get her tested formally which we'll probably choose to do, but I wondered how people felt about such 'labels' and whether it is sometimes better to not know. I imagine that having a dx will open the door for better help which she's highly likely to need at school and so on.

Anyway, hello to everyone and I hope there are some other people out there with experience of Sotos. I'd never heard of it until today.

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bubblagirl Thu 11-Jun-09 15:59:56

hi and welcome i have no idea about the syndrome im afraid but your dd sounds delightful

my ds is ASD and has a formal dx it is worth doing in all honesty as it allows you all the extra help needed for them at pre school and school

i dont regret labeling my ds as he gets extra help that is really needed for him

Raindog Thu 11-Jun-09 16:06:36

Thanks bubblagirl. I think that we will go ahead and get the formal dx too for if and when she needs extra help.

I suppose at the moment it doesn't matter too much because she's so young, but when she goes to school it might make a difference.

It's just weird having a name for it all though. In some ways it is a relief because we knew she had some developmental delays and it's good to find a reason for them. In other ways it makes me feel a bit wobbly and very protective of her. I guess I'm just going through the same emotions that every parent does when you finally get a dx.

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bubblagirl Thu 11-Jun-09 16:14:57

oh yes i was like this for quite some time and still am at times as i know he is different but to me he is my adorable yet challenging little boy and i wouldn't have it any other way

it also helped alot though to have it in writing a some people think your making excuses or some help is only available with dx

do you get dla at all we applied and have this for ds helps to pay for any private help you may need along the way


Raindog Thu 11-Jun-09 16:25:26

Thanks again! We do get DLA - after DD2's last developmental assessment the doctor suggested we could apply, so we've done that quite recently.

It probably isn't meant as a clothes allowance, but since she is powering her way through shoe sizes every month at least it will go towards her Clarks bill!

How old is your DS?

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bubblagirl Thu 11-Jun-09 16:48:36

my ds has just turned 4 so were in statement process ready fro school in sept its awful process but wouldn't be able to get the extra help without dx its just fighting our local LEA for the right help ours has worst reputation

Raindog Thu 11-Jun-09 16:55:21

Oh dear, I hope you get the help DS needs.

I've been burying my head in the sand about the education side of things to be honest, but now DD1 has got her place at our local primary school I suppose I ought to start investigating what Lewisham might have to offer DD2 - I dread to think...

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bubblagirl Thu 11-Jun-09 17:00:14

well get the dx in plcae then look into getting a statement only takes id say 9 mths it takes less than that but we wanted plenty of tme for amendments that may need to be made and thank goodness we did

we started in dec and will def be all done for sept school start

early years team arranged for 1-1 in pre school so its now down to getting the help ins chool

Raindog Thu 11-Jun-09 18:17:36

Thanks again for your advice. I'll definitely start looking into that. It's all new to me.

Good luck with getting DS help in school.

Is there anyone out there with any direct experience of Sotos? I'd really like to hear if anyone else knows anything about it as it doesn't seem to be a very common condition.

OP’s posts: |
Raindog Thu 11-Jun-09 18:17:36

Thanks again for your advice. I'll definitely start looking into that. It's all new to me.

Good luck with getting DS help in school.

Is there anyone out there with any direct experience of Sotos? I'd really like to hear if anyone else knows anything about it as it doesn't seem to be a very common condition.

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bubblagirl Thu 11-Jun-09 18:39:50

dont know if this will be a help to you

Raindog Thu 11-Jun-09 19:28:05

That site looks really good. Ta for the link.

There must be a mumsnetter somewhere with direct experience!


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Raindog Thu 11-Jun-09 20:28:59

just a litle bump...

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glitteryb6 Fri 12-Jun-09 09:45:13

are you on the special kids in the uk forum, theres a lady on there with an 8 year old boy who has it

Raindog Fri 12-Jun-09 10:30:27

Thanks glitteryb6. I didn't know about that forum but I'll have a look there too. To be honest I don't really know anything about the syndrome. I only heard of it yesterday!

I was hoping that someone here might have some experience of it, but maybe it's even more uncommon than I thought. I've often lurked on the special needs threads because of DD2's developmental delay, but I didn't feel I could really join in as it felt so vague.

I had a look at the archive just now and there is definitely another mumsnetter with a daughter with Sotos - I think it was Bumblelion. Does she still post here? I'd love to hear from her.

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Raindog Fri 12-Jun-09 17:55:30


OP’s posts: |
choccyfingers Fri 12-Jun-09 21:12:04

Hi , my dd is 4.5, she has had the test for Sotos,but it came back unconclusive. She is to have further tests, but alot of her behaviour, features and symptons are sotos like. She is a live wire,full of fun and the funniest little girl. We love her to bits and she makes us laugh out loud everyday.

Have a look on
They are a great bunch of parents, i met up with some last year at the Sotos fun run in Fleetwood.

Our daughter has one to one for her statement and dla mobility and care.
Her main problems are her balance, hypermobile and her behavioural oddities. ( strange phobias) She has very little understanding of time, and falls over all the time. Something to do with spacial awareness.

You will certainly find parents who can give you support and advice on the child growth forum site. They were really friendly , just like here on mumsnet.
Best wishes


Raindog Sat 13-Jun-09 10:50:08

Thanks Choccyfingers - your DD sounds lovely! It must be difficult if it's inconclusive. We were told that if they check the gene that's responsible (NSD1) that it picks up the syndrome in 95% of cases. I think we will go ahead and get it looked into.

I don't really know about statements - what exactly are they and how to do we start the ball rolling with that? From what Bubblagirl says it seems to take a while, but is it something just for school or should we start now do you think?

My DD has a few balance problems and falls a lot too - she's very tall and growing fast so I think she just has problems remembering how big she is! Unfortunately she hits her head quite a lot as she doesn't seem to put her hands out to protect herself yet. She's improving though. We haven't come across any phobias yet, but she certainly lets us know if she doesn't want to to something! And she's very demanding about food - the fruitbowl is under constant attack grin.

How does your DD get on with speech and language?

Thank you!

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choccyfingers Sat 13-Jun-09 22:24:19

Hi Raindog,

Sorry should have explained, the statement is a statement of educational needs. All you need to do is contact your local education authortiy ( ring your local council if you can't find the direct number) and they will explain how it all works. It's never to soon to start; as you can apply for educational support at a nursery aswell. Most authoritys' have a parental support officer who will help. It does take a while to get thorugh all the tests, for example speech, physio etc. but I found it abit of a relief to know more about how it affected her learning, and i certainly had a few " so that explains why shes does that moments".

My little one isn't that little!! she is 4.5 but is the size of a 10 year old. Getting clothes and shoes are a nightmare. She can be a bit hard to handle because of her size.

We are to go back to genetics in July as the second test is still unconclusive. The only thing a really worry about is her eventual height. And she does really struggle with her walking. As the consultant said she is trying twice as hard as everyone else just to stay upright!!

She didn't walk til 3 and used a Kaye walker. She is only just toilet trained and we still have the odd accident. Her speech is delayed and she does get all her words mixed up but you can make out what she means.
She has done very well since starting school and is writing her name and starting to read. Her speech has got alot better aswell.
But out of my 4 dds she is the most lovable, funny girl. She will definatley be on the stage, or the next girls aloud, and is convinced Troy off high school musical is coming to her 5th birhday. grin Sort that one out mummyhmm
Have you been on the child growth foundation forum yet? You will find it invaluable. I got alot of advice from some of the parents about how to go about getting services, toileting tips, etc.. I know some on the site have decided not to get the nsd1 test. For me i would like to take it abit further , but as the docs say we may never know.

Best wishes


Raindog Mon 15-Jun-09 13:55:06

Hi Choccyfingers
Thanks for explaining - I wouldn't know where to start. I think that my DD's nursery has good links with the area special needs co-ordinator as well so that should help.

And thank you for sharing about your 'little' girl - she sounds delightful. I know what you mean about size - DD2 is 21 months younger than DD1 and they are about the same height and take the same size clothes (or sometimes larger). There are no hand me downs any more!

We are just trying to potty train DD2 now and she's been really good so far. She doesn't really ask to use the potty though so I'm not sure it will work this time round, but she's great at actually using the toilet when prompted.

Good luck in getting Troy to the birthday party grin

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Lauree Thu 18-Jun-09 23:46:59

Raindog! good to meet you! there ARE others out here - just not many!

I'm SO pleased I read your post... my DS is 5 1/2 and is diagnosed 'sotos like' all the same symptoms you describe, and there is a particular look that goes with it too. But he hasn't got the genetis marker. He's a lovely boy, with a wicked sense of humour, but a lot of hard work, and he has epilepsy too.

we decided to go for a dx. I think it helped with getting help when we needed it, like getting statements for school, special boots, physio etc. If you don't want to tell people, you don't have to.

I've been looking for a while for another family with the same issues...There are a few other parents on the 'contact a family website', but I haven't actually managed to contact anyone yet. There is an American web chatroom called the Sotos Syndrom Support Association (SSSA). I spent a lot of time on it when DS was first dx, but I just scared myself silly ; most people posting were having really terrible problems with their kids.

If I can give you just one bit of advice, Please do not look up sotos syndorme on wikepedia until you have read other information; there is some much better info written by Dr Trevor Cole in Birmingham who is the UK expert. unfortunately I'll have to search for the web link for you another time. The info on wikepedia isn't exactly wrong, but it paints a dark picture. And there's a very scary photo on there. If I ever figure out how to i'm gonna add some more info and links!

anyway, it's getting late and DS is an early riser - so hope to talk to you another time x smile

Lauree Thu 18-Jun-09 23:56:53

And, I've just read the thread properly now,and spotted choccyfingers - good to meet you too... and thanks for the reminder about child growth foundation- I got some useful information from them a couple of years ago and had forgotten.

It's good to hear about other kids doing so well x

Raindog Fri 19-Jun-09 14:28:03

Hi Lauree! It's good to meet you too!

I'm afraid your advice was a bit late. the first thing I did after we saw the genetics team was rush off to google the syndrome. I have read the wikipedia entry, but I also read the info on the CGF website.

To be honest it's not like we've been told anything we didn't already know. We aleady know DD2 is taller than average and has mild motor and speech delays so it's not exactly breaking news for us.

As I see it she's going to be tall and have wider-spaced eyes than usual - she'll be a supermodel!

Seriously though it is hard to know what help, if any, she is going to need. she is 2.5 and at the moment doing fine at nursery. Who knows whether she'll need a lot of extra support at school. She seems to be hitting all the milestones, but taking a bit longer than usual to do so. She has only recently started talking, but now the words are coming thick and fast. And she's cracked potty training brilliantly which is about the same age as DD1 was, so not even a delay there. I guess with all these things there is a range and we are hoping right now she's on the mild end of it.

Her size and features do stand out a bit - her head is very large - but presumably she'll get more in proportion as she grows. The main thing for us is that she's a funny, affectionate, lively ball of fun. She and her sister get on brilliantly, and there is usually a lot of giggling from their room when they're supposed to be asleep!

A lot of the information about Sotos suggests that a child with the syndrome can be violent, paranoid, phobic, aggressive etc which so far DD2 has escaped. Have you found any of those things?

The other thing is that we have to take her for a heart scan as I believe that heart defects/problems can be another factor.

Strangely, the reason why we see the doctors so frequently has been because DD2 developed bronchiolitis at a week old and was ventilated twice, and then got it again before last christmas. she had to be ventilated for 10 days then as well, which is unusual for an older child. As far as I can see there doesn't appear to be a link, but it seems like it would be a bit random to have been severely ill 3 times with it. hmm.

Anyway, I must go and collect her from nursery!

I'd love to hear more about your DS.
Best wishes

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lorrikeet Sun 19-Feb-12 21:33:36

... and constipation
Anyone out there with a sotos child who can advise on chronic constipation ?(age 8). Other conditions with hypotonia might be relevant. I believe that constipation is common for sotos kids, so maybe someone out there has been through this ( and hopefully come out the other side)??

The gruesome details ...
DS is struggling to poo more than once every third day. His poos are soft, but he's having skid marks ( is that what's known as 'sneaky poo'??), stomach cramps and seems to be scared of going to the toilet... After seeing the paed, he's taking movicol daily, drinking loads eating more fruit and veg etc;
we do have a specialist appointment arranged, but it's in five weeks time.

lorrikeet Sat 11-Apr-15 10:39:59

Just reviving this thread incase anyone has any advice for chronic constipation; especially parents of kids with Sotos syndrome?

It's been YEARS and I am at my wits end . I am sure DS is holding it in because if I say 'we can't go to … until you poo' sometimes he can magically produce one. Any advice for kiddo's who just hate poking and will do anything to avoid it?? Please??

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