15q 13.3 microdeletion

[Darkbendis]

Hello,


One of my friends has a four-year old little boy recently diagnosed with 15q 13.3 microdeletion. At the moment her little one presents autistic characteristics and mental retardation (speech development delays) She lives in France, does not know anybody who has a child with the same condition and would be grateful if she could get in touch with someone who has a child diagnosed with 15q 13.3 microdeletion, to be able to chat about day-to-day life, treatment, therapies etc

Is there anyone here that can help, please :)?

Thank you very much!

Best regards,
DarkB

[roundthebend4]

Has she tried looking on unique they keep databases and contact details


Though you might like to warn her mental retardation is not a phase that is used in the Uk or paticulary liked

[genieinabottle]

THe better way to say it is 'intellectual disabilty' or so it said on a website i was checking out the other day.

Bumping

[donkeyderby]

...or 'Learning Disabilities'. I agree, Unique is a really good organisation for chromosome abnormalities and they seem to have an international reach.
Does she speak English? If so, why doesn't she post on here? She may find just as much in common with parents of children with other disabilities, rather than restricting herself to contact with parents of children with the same condition

[Nigel1]

Try this by way of help.

www.rarechromo.org/information/Chromosome%2015/15q%20Deletions%20FTNW.pdf

[Nigel1]

Also

www.angelmanuk.org/

[Darkbendis]

Thank you very, very much. I will tell her about Unique. She does speak English, the reason she has not posted here (yet) is that these days she is frantically trying to get as much information as possible from as many sources as possible (in UK, Belgium, USA, Switzerland etc) while looking after her children (her little boy and her baby girl). But you are right, she should not restrict herself to contact families with children with the same condition, she could find a lot of help, support and friendship from parents of children with other disabilities. Of course, it will be her choice entirely :)

Thank you very much for pointing out the wrong (and offensive) terminology, for which I apologise. I will let her know about better ways to express the condition and symptoms.

Once again, thank you very much for your help

DarkB

[Darkbendis]

Nigel, thank you very much! I will send her the two links as well.

[bigstripeytiger]

www.rarechromo.org/information/Chromosome%2015/15q13.3%20microdeletion%20syndrome%20FTNW.pdf this link might be useful too.

[mumtoboymicrodeletion]

hi I have an 8 year old son who has 15q 13.3 microdeletion syndrome at the moment we r also waiting to have him assessed for autism spectrum he is showing strong signs that he has that too, life is a struggle as his behaviour is getting worse and very much harder to control him. if your friend would like to chat to someone who has a child with the same disabillity then u can put her into contact with me i would b happy to answer any questions if i no the answers to them. i wish her and her boy the best in life xx

[mumtoboymicrodeletion]

As far as im aware there will not b any type of medication he can take for the syndrome it just is n thats that im afraid . ever since my boy was born 8 years ago it has been nonstop since then n still is now, he was making huge improvements in school since oct last year till 2 weeks ago they started to teach him as if he has autism n he has come along heaps n bounds but 2 weeks ago he started to play up in school n b quite naughty and now is not following one single instruction the teachers or anyone in fact tell him , we r trying to work out wether or not it is because of the syndrome or wether there are other factors that have changed him,, life with my son will continue to b a battle but a battle we will win no matter wat x

[Sarahjane160282]

Hi my son has it if she wants to talk he's 6 and also about to be diagnosed with autism and ADHD x

[challengingboy]

My son has missing chromosome 15q 13.3 microdeletion syndrome..he's 5 but also has a delayed development,so he is around a 3 year old..day to day is challenging,moods,tantrums,bad behaviour,aggressive..sure he has attention deficient hyperactivity disorder or autistic spectrum disorder?...life is hard with him,behaviour is getting worse..school wont support or help him,cos no funding.so there been days he has thrown himself on floor and start kicking..angry cos I'm not getting any support or help...

[trevor56]

Our 6 yr son has mircodeletions 15q 13.3. He has started to signs of anger. Temper tanguns. And agresion. He nicks littlr
e things from shops. If you turn your back for a moment while you are in a shop he will dissapper. While in b&q today he just walked out spent 10 minutes looking for in the store. I phone up my wife to tell her he was missing only to be told he had just walked in the door. Sorry about the spelling mistakes

[Myersgirl84]

My son has this deletion and autism and its really hard everyday

[WILLIAM12]

My son was diagnosed with autism and also 15q 13.3 microdeletion 2 weeks ago he is 3 years old