After talking to a few other moms on facebook, we decided to all compile our information on a blog to take it to our doctors. This, hopefully, will be that blog.
I am so glad i stumbled upon this! I am desperate for information! My daughter was diagnoised with this syndrome last month. Please contact me at your earliest convience. You can email me at melissalynn31@gmail.com. Looking foreward to hearing from you soon!
we have 4 family members with a duplication of 16p11.2-16q12.1 we have been told its rare and geneticists,metabolic specialists and neurologist can't tell us much more at this stage.. desperate to share our story and hear other families stories. contact me on lilmissdaisygirl@hotmail.com we live in australia
We have three in our family with the duplication and I'm interested in any and all information you have regarding his. Did you participate in any of the studies?
Please e mail me off line at austinbizw@ yahoo.com
We participated in the Simons VIP study last summer, did the brain MRI portion in November with my husband, and will be participating in the long term study in August. We won't be able to continue after September as my little one will be 5 in September. The long terms study will stop at age 5.
My grandson recently underwent Microarray and FISH Genetic Testing with the following syndromes noted: 16p11.2 - p12.2 Microdeletion and 16p11.2 Microdeletion. He is eleven and we've been on the quest for diagnosis for autism like symptoms..cognitive delay for years. Please advise as to the best places to find out more.Thank you. copyright1959@hotmail.com
My daughter recently had the Microarray and we found out that she has the duplication of 16p11.2. Any and all information you can share on this chromosome disorder would be greatly appreciated.
I am so glad i stumbled upon this! I am desperate for information! My daughter was diagnoised with this syndrome last month. Please contact me at your earliest convience. You can email me at melissalynn31@gmail.com. Looking foreward to hearing from you soon!
ReplyDeletemy daughter was diagnosed with this as well in aug of this year...and i feel so lost. The genetic doc couldnt tell me a whole lot.
ReplyDeleteKaitlyn, you can e-mail me at mommy24boys at hotmail dot com and I can share the information I have about the duplication.
ReplyDeletewe have 4 family members with a duplication of 16p11.2-16q12.1 we have been told its rare and geneticists,metabolic specialists and neurologist can't tell us much more at this stage.. desperate to share our story and hear other families stories. contact me on lilmissdaisygirl@hotmail.com
ReplyDeletewe live in australia
We have three in our family with the duplication and I'm interested in any and all information you have regarding his. Did you participate in any of the studies?
DeletePlease e mail me off line at austinbizw@ yahoo.com
We participated in the Simons VIP study last summer, did the brain MRI portion in November with my husband, and will be participating in the long term study in August. We won't be able to continue after September as my little one will be 5 in September. The long terms study will stop at age 5.
DeleteMy grandson recently underwent Microarray and FISH Genetic Testing with the following syndromes noted:
ReplyDelete16p11.2 - p12.2 Microdeletion and
16p11.2 Microdeletion. He is eleven and we've been on the quest for diagnosis for autism like symptoms..cognitive delay for years. Please advise as to the best places to find out more.Thank you. copyright1959@hotmail.com
My daughter recently had the Microarray and we found out that she has the duplication of 16p11.2. Any and all information you can share on this chromosome disorder would be greatly appreciated.
ReplyDeleteThank you kindly
Two kids with 16 p and one not but he has aspergers. Any information at all would be great.
DeletePlease e-mail me at mommy24boys@hotmail.com
DeleteYou can e-mail me at parentwarriors.gmail.com and I can give you some resources to help :)
ReplyDeletePlease provide another e mail address because this one doesn't work!
ReplyDeleteYou can e-mail me at mommy24boys@hotmail.com
ReplyDelete