Hi there, my youngest son is 21 months. It all started From 10 days old he suffered really badly from constipation and to this day still suffers. He didn't meet any of his milestones, couldn't tolerate any solids, couldnt hold his own bottle till 12 months, crawled at 14months, still not walking, very little weight gain, to this day only says "mum,dad and car" and that's not the half of it. From 3 months old we started seeing a physio for his neck and from there we are now continuing to see a o/t speech dietitian, physio and peadiatrician. At 12months he was diagnosed with The chromesome duplication, developmental delay and hypotonia. We are also questioning whether he has autism. We have to live day by day because every day can be so different. At the moment we are told that our son is a puzzle and it's just a waiting game. It's hard. I have two older children who haven't been affected and meet all the milestones as expected. My husband and I have also been tested and we don't have the duplication. We are currently waiting on genetic councilling. With very little information out there it would be nice to connect with other families that can share their experiences.

Hi, Amy. If you haven't already done so, please join our Facebook group (search for "Trisomy 5P"). There are many families in the group that post regularly with questions, observations about their kids, etc.. It is soooo helpful to be able to connect with other parents whose kids are "puzzles". We've also posted some brochures to the Trisomy 5P FB page that were put together by Unique (research group out of the UK) on various duplicaitons of 5P. Much of the research came from questionnaires filled out by those on our FB page. You'll see that many of our kids have most of the symptoms you've described in your son. They are all unique, amazing kids and it is wonderful to have a community that understands and can celebrate your son's milestones that he acheives at his own pace. I hope to hear more from you on our FB page! Best, Tiffany