Genetic Disorder 15Q11.2 Micro Deletion

Leslie - posted on 02/05/2013

Hi, I'm so glad to have found you. My granddaughter was diagnosed just after Christmas. She is 6 years old. She is keeping up with school work and hasn't presented with any behavioral problems at school, it's when she gets home she is just exhausted in a stressed out sort of way. Then the temper tantrums set in if she is asked to do anything. She just seems like it's all she can do to keep up with the other kids. She does have speech problems those are getting better with therapy and school. She had such a rocky start. She was in child protective services for a short while I finnally got to bring her home after 16 months of parent visitation during which time I had her. She is a very social, fun, and loving little girl. We have a follow up visit with her geneticist on Thursday. I just want to help her any way I can. Thank you

Kimberly - posted on 01/01/2013

hI Jennifer....I don't post or check here often message me on me personal email mrsmyers28@email.com and I will gladly answer any questions I can for you! newly diagnosed is both scary and comforting to find a answer as to what's causing the issues.if your on Facebook search for group...microdeletion 15q11.2 we have a great group of parents all with kidos who share in the deletion.it affects all the kids differently and we have kids at all different ages so we really help/support each other. I hope to hear from you soon..big hug.Kim

Jennifer Sue - posted on 01/01/2013

Hi there. My name is jennifer and i just found out today taht my daughter has 15q 11.2 deletion. the dr. is not sure yet weather it is Angelman syndrome / Prader-Willi syndrome or if she even has eaither of them. She was diagnosed 4 months ago with Autisum spectrum disorder. She also was born with a cleft lip and Palate and has verbal aproxia, developmental delays and a few other things. She has tanrum problems, does not like to be in big crowds so somtimes shopping and doing earnds are a bit rough. Im looking for others that i can talk to. others taht understand what im going thourgh and where i am coming from. what do you guys do to help with the tantrums?

Kimberly - posted on 10/23/2012

Hi Tamara I tried to post a message on your profile but I do not think it posted. My computer here at work is a little slow and doesnt like this site much. I wanted to give you me email address. It is mrsmyers28@gmail.com, email me and we can talk. We were just diagnosed in March but I can tell you everything I know.....

Tamara - posted on 10/22/2012

My 14 year old daughter was just diagnosed. I am frantic to know more. We have an appointment next week but I want to know exactly what this entails. HELP!

Melissa - posted on 09/02/2012

Thanks Kimberly just found it...

Cheryl - posted on 08/30/2012

13 y/o diagnosed 15q11.2 microdeletion is on autism spectrum ,add,developmntal and intellectual disability,behavioural issues . Had prior diagnosis of aspergers age 5 but knew couldn'"t be right because of global intellectual disabilitues. Took years and much personal researching to finally get accurate diagnosis thanks to great peadeatrician who didn"t give up or think me a crack pot! SIGH !he called me last night to tell me he"s leaving!! She also has incontinence, scoliosis, leg length discrepency,vision problems, asthma,anemia and slight hearing problems.Having said that she is generally a happy, loving,co-operative little girl(sorry,young adult)who is the joy of our later years.She is our grandaughter whom we'"ve raised since birth. Have recently taken her out of school didn"t cope with high school even though in support class. To large and overwhelming. Will be home schooled Hope this helps.Thanks for forum.

Kimberly - posted on 08/30/2012

hi Melissa you'll find the Facebook page under - microdeletion 15q11.2 if you can't find email me at mrsmyers28@email.com ill see that sooner than a message on here. the Facebook group is a closed group but the admin are awesome send a request and they will approve you in super quick. welcome to our group none of us want to be here but its nice having each other!

Melissa - posted on 08/30/2012

I would love to join the facebook group as my son has the same deletion too, he has no behavioral issues but has anxiety, and has other issues at hand... Thanks

Kimberly - posted on 05/25/2012

Hi Amanda, I am responding from my phone so this will be short and sweet. :-) you've found a great group of moms on the Facebook page! We all have kids that have similarities as well as their own unique challenges. you'll find lots of great advice and dialogue. I'd love to chat soon. Have a great weekend! Kim

Amanda - posted on 05/25/2012

Hi Kim,

I also just joined so I could message you! I also just joined the Facebook group! I am so excited to know that there are other parents out there! My daughter's deletion is also in BP1 and BP2. She doesn't have Angelman or Prader Willi. She is 6 1/2. She has the same struggles as your son. She has autistic characteristics. (She does have a diagnosis from when she was younger b/c it looked like classic autism) She has anxiety, mood swings, severe behavior issues, ADHD, speech delay, fine motor delay, ODD among other things! She does well in the hospital setting due to the extreme structured environment. (Due to her severe aggression towards her sister she has been admitted 5 times) I look forward to talking and chatting with you on here or on the Facebook group!!!!

Talk to you soon!
Amanda

Triquetra - posted on 04/26/2012

Joined this site just to welcome you. My son also has this 15q11.2 microdeletion between breakpoint 1 and 2 (so not Angelman or Prader Willi, but something else)......we have a facebook site for the few of us that have found each other at "microdeletion 15q11.2" if you want to check us out and join....there are few of us and we're widespread, UK, US and Canada but we try to help each other where we can.