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Original poster

Any experiences of Koolen-Devries syndrome?

11 replies

Nimbostratus100 · 23/12/2022 07:58

My 6 year old cousin has this syndrome. I have only met him twice in the past, and he would not interact with strangers at all. Is this typical? We are thinking of inviting family for a brief visit over Christmas, but not sure if this is manageable. I'm not well, and having unknown children with not understood special needs visiting might be to much. But I do want to get to know him. His mother has serious mental health problems, and cant really be approached for information, as she gets too upset. I have not met the father, and there is very little about this condition online.

Any information at all about how it might be possible to make this child welcome and happy in my home would be very welcome - and once I know what is likely to be needed, I will be in a better position to judge whether I am actually in a position to provide what would be needed to invite the family over

Thank you

OP posts:
Original poster
Nimbostratus100 · 23/12/2022 17:53

looks like no one here has come across this syndrome, then!

OP posts:
FatAgainItsLettuceTime · 23/12/2022 18:08

I have no experience but would imagine symptoms are varied as no two people ever experience anything in exactly the same way.

On the surface of it though you have a cousin with mental health problems who has a disabled child. At the very least it would be nice to find out what you can about what support she is getting and if there is anything you could do to support her in some way. It's possible she is isolated and struggling, it's also of course possible that she is well supported and doing amazingly but shouldn't you want to know and to offer help if it's needed?

https://en.wikipedia.org/wiki/Koolen%E2%80%93DeVriess_syndrome

rarediseases.org/rare-diseases/koolen-de-vries-syndrome/

kdvsfoundation.org/

Original poster
Nimbostratus100 · 23/12/2022 18:24

well, I do want to, but in the past years she has kept the child in close isolation, due to being CEV. Now she isn't self isolating any longer, but I am extremely unwell myself, and may not be able to offer any help and support, depending on what help and support is likely to be effective. Starting with not really knowing about whether I should invite them to my house over Christmas.

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6 year olds
FatAgainItsLettuceTime · 23/12/2022 18:29

Why not give her a call to wish her merry Xmas, and ask how everyone is doing. Let her know that you miss her and would like to re-connect. Ask her if she and her son would be up for a visit either you going to her and taking some cakes to have with a cup of tea, or her coming to you. She'll let you know if a trip to yours is difficult and if it would be better to meet at hers where they have everything in place.

Alternatively are there any other family members who are in contact who you could speak to?

Original poster
Nimbostratus100 · 23/12/2022 19:12

|Well, I am not well enough to travel, and I am worrying about biting off more than I can chew inviting them here. WIthout any further insights and experiences into this condition, it might just be safest to just leave it for now, regretfully.

OP posts:
Original poster
Nimbostratus100 · 23/12/2022 19:14

Thank you for your input @FatAgainItsLettuceTime

OP posts:
LivIoe · 23/12/2022 19:24

Koolen-de vries is the correct name. The child will present largely as just younger. They will have lower muscle tone and some degree of learning delay. Most are seen as having a happy nature.

I find your post quite sad on many levels I must say. The lack of trying, it must be very very hard on mum with her mental health difficulties. There are many ways of phrasing it that aren’t upsetting or just fishing for if they are acceptable to have round
’would x like to bring anything with him?’
’if x needs quiet time you are very welcome to use another room’
’what does x like?’
’are there any foods x likes I could get?’
or just
’hi, it would be lovely to see you. I’m not feeling well if I’m honest, but a short visit would be lovely. Otherwise can I give you a call?’

Original poster
Nimbostratus100 · 23/12/2022 21:18

LivIoe · 23/12/2022 19:24

Koolen-de vries is the correct name. The child will present largely as just younger. They will have lower muscle tone and some degree of learning delay. Most are seen as having a happy nature.

I find your post quite sad on many levels I must say. The lack of trying, it must be very very hard on mum with her mental health difficulties. There are many ways of phrasing it that aren’t upsetting or just fishing for if they are acceptable to have round
’would x like to bring anything with him?’
’if x needs quiet time you are very welcome to use another room’
’what does x like?’
’are there any foods x likes I could get?’
or just
’hi, it would be lovely to see you. I’m not feeling well if I’m honest, but a short visit would be lovely. Otherwise can I give you a call?’

I think you are missing the point - how can I say " would x like to bring anything with him" if I don't know if I am up to inviting him! And no, we don't have any other room available for his use.

You say, presents younger - so inviting a 5 year old around would be like inviting a 2-3 year old round, I suppose. I definitely couldn't cope with a n average 2-3 year old visiting at the moment.

I think its probably the wrong time, to try and get to know this little boy. Lets hope there is a better time some day in the future

OP posts:
FatAgainItsLettuceTime · 23/12/2022 21:25

Could you not just start with a conversation by phone though. It doesn't have to result in an invite to your house or a physical meet up at all. Just a 'Hi, I was thinking of you and wanted to give you a call and say Happy Xmas. How is everything, how's xxxx doing, he must be getting big now.....'

Original poster
Nimbostratus100 · 23/12/2022 21:48

I'm often ringing, doesn't really get me any further in understanding the situation

OP posts:
secular39 · 27/12/2022 23:03

It sounds like you just want an excuse not to invite him.

Just invite him, the mum will be there to watch over him Confused.

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