Forums > Special Needsby: NobodyNobodyNobody
Ffggdhhhdsv1017 posts
parentankignore
posted 7th Sep '10
Quoting Helen(proud mommy):“ My daughter turns 3 this month and we just recently found out she has a deletion of the 8th chromsome, ... [snip!] ... with this. Im waiting on an appointment with a genecious* sp but until then im trying to research as much as possiable. TIA”

my daughter was just diagnosed with a deletion of her 18th chromosome. I know what you're going through. My daughter is only 7 weeks, so we don't know what her delays are yet, but she's at risk for the same things. When we had an appointment with our genetics counselor, she was a big help. She was really encouraging and made us feel lots better. Try not to research TOO much, because it'll end up just scaring you to death.
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I have 2 kids & live in Florida
Ffggdhhhdsv1017 posts
parentankignore
posted 8th Sep '10
Quoting Helen(proud mommy):“ I tried researching but cant find really anything about it. We go to the genetic Dr sept 22 and i cant ... [snip!] ... to finally know why. Why did they test your daughter so early was she already showing signs that something wasnt right?”

The only thing that gave them any indication that there could be a chromosome problem was she had simian creases in her hands. It was a good catch, because it's very discreet. If it weren't for that, we probably wouldn't have known until she was older
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I have 2 kids & live in Florida
Ffggdhhhdsv1017 posts
parentankignore
posted 13th Sep '10
Quoting Helen(proud mommy):“ So I have found out my daughter has 8p23.1 deletion syndrome. So if any other mommas children have this ... [snip!] ... mommas children have this and want to chat, feel free to contact me. shymarie what band was deleted on the 18th chromosome?”

22.3 for my daughter. How'd the genetic appointment go?
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I have 2 kids & live in Florida
NobodyNobodyNobody1205 posts
parentankignore
posted 13th Sep '10
Quoting shymarie [+2]:“ 22.3 for my daughter. How'd the genetic appointment go?”

its not till sept 22. I called the Drs office to get that info.
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I live in Florida
Mummy-2-2-Monsters6688 posts
parentankignore
posted 13th Sep '10
Quoting Helen(proud mommy):“ My daughter turns 3 this month and we just recently found out she has a deletion of the 8th chromsome, ... [snip!] ... with this. Im waiting on an appointment with a genecious* sp but until then im trying to research as much as possiable. TIA”


Hey, I'm Krissy. My little boy Marcus has a chromosome deletion too. He was diagnosed at 1 week with VCFS its the deletion of the 22nd chromosome. I've done extensive research on it and it's hard to deal with. I says that he will have developmental and speach delays too it messes with the learning and productivity section of the brain. He is already showing signs of delay and his geneticists have picked up on it too. But he's a happy little boy going to be 7 months in a few days. He has mastered rolling over now and is starting to play with toys more and his concentration is getting better. The best thing for him is just being loved and taken care of well. And not acting around him or towards him that he is different, cause with or without this chromosome, he is the same as everyone else  

The best thing that helped me with my sons syndrome. Is the support groups. VCFS is a common disorder, but not many people know about it. So I did research and joined a support group. Maybe you should join one that supports your babies disorder. It's great. They hold lunches and bake sales and play groups for children with the same thing. Hope everything goes well for you momma. Best wishes  
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I have 2 kids & 1 angel baby & live in Seven Hills, Australia
simon finlay1 posts
parentankignore
posted 22nd Nov '10
Quoting Helen(proud mommy):“ My daughter turns 3 this month and we just recently found out she has a deletion of the 8th chromsome, ... [snip!] ... with this. Im waiting on an appointment with a genecious* sp but until then im trying to research as much as possiable. TIA”
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I have 2 kids & live in United Kingdom
Catherine831 posts
parentankignore
posted 4th May '11
Quoting Helen(proud mommy):" So I have found out my daughter has 8p23.1 deletion syndrome. So if any other mommas children have this ... [snip!] ... mommas children have this and want to chat, feel free to contact me. shymarie what band was deleted on the 18th chromosome?"

Hi Helen, I've just found out my unborn baby has the same 8p23.1 deletion as your daughter. Just wondering if you could share with me her problems & how it has impacted upon your life? Thanks, Catherine
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I live in United Kingdom
annesophie107 posts
parentankignore
posted 5th May '11
my Daughter is missing part of her chromosome 5.
the very top tip. this is called cri-du-chat. she will be facing the same things, delays and problems with speech and muscle tone but is only 5.5 months atm. i'm here for you!
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I have 1 child & live in Australia
Ettina1 posts
parentankignore
posted 17th Aug '11
I know of three support groups you may want to check out.
Firstly, there's a yahoo group called Chromosome-8, which is about kids with chromosome 8 disorders. There are a couple of members there who have kids with 8p23 deletion.
Secondly, Unique and Chromosome Disorder Outreach are both large support groups for rare chromosome disorders in general. Unique has a bunch of disorder leaflets for some of the conditions, including a leaflet on 8p23 deletion.
Links here:
http://health.groups.yahoo.com/group/Chromosome8/
http://www.rarechromo.org/html/home.asp
http://www.chromodisorder.org/CDO/
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I live in Saskatchewan
Pamela Sikes Turner1 posts
parentankignore
posted 8th Sep
Quoting Helen(proud mommy):" My daughter turns 3 this month and we just recently found out she has a deletion of the 8th chromsome, ... [snip!] ... with this. Im waiting on an appointment with a genecious* sp but until then im trying to research as much as possiable. TIA"
My son, Huwy, now 23, has a deletion of genes in the 8th chromosome. I have had many years to deal with this if you'd like to chat. Pamela
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I live in Japan
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