My daughter, aged 13 years has a duplication on 5p gene. I am trying to find more information about this duplication and its effects of our children. Dawn :)

Hi Dawn My daughter age 4 was DX at age 2 with a micro duplication on 5p15.33. We live in the US. More specific NJ. We have been told that there is no one in the database with exactly the same size duplication to compare Isabelle to. With that said, she had delays in speech and only had a 20 word vocabulary at age 3. She has sensory adversions( noise, some clothing..she says itchy, she has what we call meltdowns ( different from a temper tantrum, she is our 3rd child), food adversion.Most of what I can describe are what drs have described as symptoms and we just treat those. The biggest challenge we are facing currently is sleep, she just can't fall asleep or stay asleep. We go back and forth with using melatonin. After awhile she gets used to it and we wean off and then wait and go back on. She is being tested for two different kind of seizures. One that happens in her sleep and the kind where she stares into "space" and you can't get her attention. We have had an MRI, she has a larger cerebellum, which could cause the autistic like behavior. It is a long road, but we have found since there isn't much known about 5p yet, if your child is having a problem in a certain area and it doesn't fit into another DX 5p will cover it. We have used it for school to get Isabelle any extra help she could possibly qualify for. I know it is frustrating with the lack of info out there for our children. Hope something I said was helpful. Kelly

Hi Kelly, FINALLY found someone else. My son is micro duplication on 5p15.33 duplication in mosaic form. He is 5. Would be great to hear from you and understand how your daughter is doing. I have been in contact with another parent also who shares this same duplication. I'm also in the USA, in WA. Thanks, Debbie

I have a 5p15.33 duplication. I also have 11 biological children. 2 children have undergone genetic testing. One child, my son, Luke also shares the same duplication. He had a variety of challenges including many medical conditions He was a very special child who love life and loved God. He grew to be a wonderful young man who was studying to be an electrician. He passed away from a very severe, sudden, swift and unexpected asthma attack.