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10q deletion
Our 7 yr old was just diagnosed with 10q deletion. When she was a baby, you could put her into a sitting postion, but once she fell she would play on her tummy. She did not start walking by herself until 21 months. After that she spoke her first word. We have been doing physical therapy since she was 13 months old. She does have devolopmental delays and her speech is still hard to understand. I only wish we knew sooner. I feel like so much time has past that we could have had more help somewhere for her. Now I am just trying to figure this out and find information on it.
This discussion is related to chromosome deletion.
This discussion is related to chromosome deletion.
My daughter, who is now 22, continues to gain skills that will improve the quality of her life!
We were told that she'd not walk, talk, play as typical individuals do.
She was / is a very "strong willed" individual & that "will" has gotten her a long way (made me pretty frustrated at times... )!
She is a VERY happy individual; having very few "bad days" in her lifetime! The BIGGEST (positive) changes in her behavior came about from having positive social experiences. Unfortunately, my daughter has a higher "IQ" level of social functioning and a fairly low abstract reasoning functioning. In otherwords; she "gets" what she is missing out on and can not reason why she isn't a part of the goings on of her typically developing peers. She has significant cognitive deficits that impact making good / safe choices, but can have a fairly "grown up" social interaction with adults. When she was 16 we (finally) found a wonderful "support network" of friends who loved and accepted her for who she was / is! She has evolved into a leader of the group, having much higher level skills than many of the others in her group. She is so happy to have these friendships and social experiences that develop confidence as well as life skills.
She has had many health related "issues" that she simply "out grew" or "corrected themselves" with a healthy diet, perseverance and a rigorous growth hormone treatment (that lasted 9 years) program. Simply boosting her stature helped with so many of the "issues" such as the ear infections, balance, mobility, self-in-space perceptual issues, breathing and confidence!
Her ongoing challenge is the digestive / esophageal issues. We have been successful at managing them with a pretty controlled diet.
I also had her receive extensive OT, PT outside of school (I'm a speech pathologist so I have that area covered!!!). Additionally got her involved in a hippotherapy (therapeutic horseback riding),dance and gymnastics programs associated with Special Olympics. It is exhausting but well worth seeing the results!
I live by the mantra; "the limits of my expectations are the limits of her accomplishments!" So, I say; don't stop raising the bar! Push, encourage, hold her had & pull her along when she needs it ... it will pay off!
My daughter learned how to ride a bicycle & LOVES it! It is one of her favorite things to do!!
I knew of NO other child in this country with this diagnosis (she obtained it at 2.5 months & I immediately put her into an Easter Seals program!) until recently ... I was fortunate to have a very "progressive" pediatrician in the 80's & 90's who encouraged me to treat her as I did her older brother ... despite the fact that she didn't walk until 27 months, etc. ... we kept on keeping on ...
I say; diagnosis does not define our children, the limitations that WE place upon them does!
We were told that she'd not walk, talk, play as typical individuals do.
She was / is a very "strong willed" individual & that "will" has gotten her a long way (made me pretty frustrated at times... )!
She is a VERY happy individual; having very few "bad days" in her lifetime! The BIGGEST (positive) changes in her behavior came about from having positive social experiences. Unfortunately, my daughter has a higher "IQ" level of social functioning and a fairly low abstract reasoning functioning. In otherwords; she "gets" what she is missing out on and can not reason why she isn't a part of the goings on of her typically developing peers. She has significant cognitive deficits that impact making good / safe choices, but can have a fairly "grown up" social interaction with adults. When she was 16 we (finally) found a wonderful "support network" of friends who loved and accepted her for who she was / is! She has evolved into a leader of the group, having much higher level skills than many of the others in her group. She is so happy to have these friendships and social experiences that develop confidence as well as life skills.
She has had many health related "issues" that she simply "out grew" or "corrected themselves" with a healthy diet, perseverance and a rigorous growth hormone treatment (that lasted 9 years) program. Simply boosting her stature helped with so many of the "issues" such as the ear infections, balance, mobility, self-in-space perceptual issues, breathing and confidence!
Her ongoing challenge is the digestive / esophageal issues. We have been successful at managing them with a pretty controlled diet.
I also had her receive extensive OT, PT outside of school (I'm a speech pathologist so I have that area covered!!!). Additionally got her involved in a hippotherapy (therapeutic horseback riding),dance and gymnastics programs associated with Special Olympics. It is exhausting but well worth seeing the results!
I live by the mantra; "the limits of my expectations are the limits of her accomplishments!" So, I say; don't stop raising the bar! Push, encourage, hold her had & pull her along when she needs it ... it will pay off!
My daughter learned how to ride a bicycle & LOVES it! It is one of her favorite things to do!!
I knew of NO other child in this country with this diagnosis (she obtained it at 2.5 months & I immediately put her into an Easter Seals program!) until recently ... I was fortunate to have a very "progressive" pediatrician in the 80's & 90's who encouraged me to treat her as I did her older brother ... despite the fact that she didn't walk until 27 months, etc. ... we kept on keeping on ...
I say; diagnosis does not define our children, the limitations that WE place upon them does!
I have a 12yr boy who has deletion 10Q11.22-Q11.23 please help I need info as I have see a few doctor who are unable to help me because it is so rare and no info in regards to it.
I have been told there is no support in Australia as I do not have a label even though the doctor know he is severe range of his academic & cognitive abilities
I have been told there is no support in Australia as I do not have a label even though the doctor know he is severe range of his academic & cognitive abilities
We have a 14 week old foster son diagnosed with both a 10q deletion and polymicrogyria. We have big decisions to make. Trying to connect with other parents. How do you join Yahoo groups? thanks
I have an almost 5 year old twin boy who was just diagnosed with 10q 26.3 deletion mutation copy gain. What does all this mean? I'm not finding a lot of information. My anxiety level is sky high. I did check out UNIQUE. What are long term effects? They seem to vary depending on the location. My little has so many symptoms I'm glad to have the diagnosed but at the same time it scares me to death. Would love to connect and find support.
I have two boys w/10q deletions. Both doing quite well now at 6 & 8...Just came across your post and wanted to reach out. The UNIQUE web site (for rare chromosomal disorders) has some general information. We have not connected w/others but I have learned there is a yahoo group focused on 10q deletions and have sent a message to join. Could be good to connect. Will keep you and your daughter in our thoughts.
I dont have an experience with this but there are a bunch of related posts above urs check them out!!! I wish u lots of luck with this and pray ur little one will b ok! :)
Hello,
My daughter was just diagnosed today with 10q deletion syndrome. She has low muscle town (hypotonia), and is currently trached for not being able to breathe on her own. She was a preemie - born at 32 weeks. She's currently 7 weeks old.
Doctors have nothing to tell us - its their first time dealing with this syndrome. We're at Childrens Hospital.
Any or all advice from anyone with 10q deletion syndrome would be great.
Thanks!
Jen
My daughter was just diagnosed today with 10q deletion syndrome. She has low muscle town (hypotonia), and is currently trached for not being able to breathe on her own. She was a preemie - born at 32 weeks. She's currently 7 weeks old.
Doctors have nothing to tell us - its their first time dealing with this syndrome. We're at Childrens Hospital.
Any or all advice from anyone with 10q deletion syndrome would be great.
Thanks!
Jen
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