Genetic testing

[Mepa]

I have a child who is just over 2years old now who was diagnosed with GDD. Recently we learned that he has extra marker chromosomes floating next to the DNA strand. They said that it was a duplication of Chromosome 15 but it isn't attached to the strand, my child has an extra 3 of on part of chromosome 15 and 1 extra of another part. Genetic testing was also done on myself and they determined that the extra markers weren't from my end but from my husband's. The doctors said that the "excitement" movements that both my kids do are considered autistic traits. My other child is completly normal but has the "excitment"movements.

My special needs child is for all intense purposes one year behind where they should be now but has no other attached medical problems or diagnosis. I am confused because I can't seem to find anyone who is experiencing the same issues or what the potential outcomes could be. I am consistently being told it can range from normal to severe. My child does get special needs instruction, occupational therapy, speech therapy, and physcial therapy and has had no regression in any area just improvements.

I am lost as to where to look for more information and for what other parents are doing and have done to help their child. Can someone help give some advice because I am not sure what to think except that my child has an abnormality and GDD but where do we go from here?

:confused:

[kiwibird27]

There is a UK website called UNIQUE where u can look up your childs actual genetic deletion and it can help u find other families worldwide that have the same one,

http://www.rarechromo.org/html/ChromosomesAndDisorders.asp

problem with that is sometimes maybe the family has a severe child and u might worry that could happen to u, or the family might have a very mild case which makes u feel worse... its a tricky one, my daughter has a rare genetic disorder so I understand but she is on the severe end of the spectrum, I have found other families with kids the same as being an invaluable resource!!! Please know though u may be doing all u can, when my daughter was first diagnosed I went in search of the cure.. only to b dissappoited!!!

There is also an australian genetic support that has a database of all the families genetic disorders that contact u, they may be able to help too

http://www.agsa-geneticsupport.org.au/

If the moderators delete these links let me know.. they shouldn't though cause its not advertising I am just trying to help