What kind of Chromosome Disorders do your kids have?

Kim - posted on 01/28/2009 ( 103 moms have responded )

0

0

0

Since there are only 4 of us right now, it might be a nice time to find out a little about everyone and their kids.
I have two boys, Logan, who is 3 months old, and Ian, who is 2 1/2 years old and has an unbalanced translocation of Chromosome 5 and 8. We have been told that it is a very rare disorder and that there are less than 100 cases in the world. I have luckily found a lady in California whose son has a similar disorder, although not the exact same, but we have been comparing notes and finding some similarities.
Ian has been delayed in meeting his milestones... he didn't crawl until 11 months, walk until 22 months, and is still not really talking. But he is a super happy guy, and seems to meet his milestones, just later than most.

What about you?

MOST HELPFUL POSTS

Angela - posted on 04/09/2013

5

0

0

Does anyone have any information on the chromosome 10? My daughter is pregnant and was just told there may be a problem. What are the chances of this? Is it common? What kind of problems is she looking at for her baby?

Pqsmylie - posted on 01/24/2013

4

10

1

My son has been diagnosed with a chromosome 16p13.3 deletion syndrome.

Ivette - posted on 05/06/2014

1

0

0

Hi my son is going to be 8 yrs. Soon he was diagnosed with chromosome 7 missing, adhd learning disabilities...does anyone here have a child with these cond. Same chromosome maybe older and tell me if it gets any better?? Cause my son is very active, happy but swings in mood easily:/ in 2nd grade now on 504 lil help from teachers, struggling with homework a lot.....

Joanne - posted on 09/15/2012

4

0

0

i have a little boy called tylor. he turned 3 in may. tylor has chromosome 16p 11.2 duplication, joint hyper mobility syndrome, autism, global development delay. he also suffers from lots of sensory issue to touch and sound. hes got the development age of a 12 month old. even with everything going on his body hes still such a loving happy little boy. he is always laughing. he is still rying to figure out how to walk ut doctors are not sure if this will be posible anytime soon the same as potty training. i havenot yet found anyone else who has the same chromosome problem as tylor but i am hoping to soon. tylor didnt st up un attended till 13 months, didnt crawl till 21 months.he s saying about 3 single words at the present time and tring to form a sentance but can not yet manage itand gets really angry with himself when he cant do something.

Heather - posted on 11/05/2013

1

0

0

Michelle,
Does your daughter have a deletion or duplication at that location? I'm curious because we were just informed that my almost 2 year old daughter has an extremely rare(4 people in the world) disorder. She has the deletion on chromosome 7 in the Williams Syndrome range(not as uncommon) but she also has a duplication at 7p21.1 Both of those anomalies occurring at the same time has the cryogenics and genetics doctors entirely baffled. I'm trying to obtain more information on this and see if there is more people out there with both anomalies than are known.

103 Comments

View replies by

N-sara2006 - posted on 09/23/2017

13

0

0

I did an amniocentesis and they found that my baby boy has a trisomy 19 p. I need some help and advise from a MOTHER who share similar problem with me. I hope I can get some help and advise as soon as possible

God bless you

N-sara2006 - posted on 09/23/2017

13

0

0

I did an amniocentesis and they found that my baby boy has a trisomy 19 p. I need some help and advise from a MOTHER who share similar problem with me. I hope I can get some help and advise as soon as possible
my email salkafy@kau.edu.sa
323 540 8702

God bless you

N-sara2006 - posted on 09/23/2017

13

0

0

I did an amniocentesis and they found that my baby boy has a trisomy 19 p. I need some help and advise from a MOTHER who share similar problem with me. I hope I can get some help and advise as soon as possible
my email salkafy@kau.edu.sa
323 540 8702

God bless you

N-sara2006 - posted on 09/23/2017

13

0

0

I did an amniocentesis and they found that my baby boy has a trisomy 19 p. I need some help and advise from a MOTHER who share similar problem with me. I hope I can get some help and advise as soon as possible
my email salkafy@kau.edu.sa
323 540 8702

God bless you

N-sara2006 - posted on 09/23/2017

13

0

0

I did an amniocentesis and they found that my baby boy has a trisomy 19 p. I need some help and advise from a MOTHER who share similar problem with me. I hope I can get some help and advise as soon as possible
my email salkafy@kau.edu.sa
323 540 8702

God bless you

N-sara2006 - posted on 09/23/2017

13

0

0

Plz contact me . I did Amniocentesis and they found that my baby boy have trisomy 19 partial , I need help and advise from a mother who is having same issues. Please I need your help my email salkafy@kau.sa my phone
323 540 8702

N-sara2006 - posted on 09/23/2017

13

0

0

Plz contact me . I did Amniocentesis and they found that my baby boy have trisomy 19 partial , I need help and advise from a mother who is having same issues. Please I need your help my email salkafy@kau.sa my phone
323 540 8702

N-sara2006 - posted on 09/23/2017

13

0

0

Plz contact me . I did Amniocentesis and they found that my baby boy have trisomy 19 partial , I need help and advise from a mother who is having same issues. Please I need your help my email salkafy@kau.sa my phone
323 540 8702

N-sara2006 - posted on 09/23/2017

13

0

0

My baby boy has trisomy 19 plz I need to exchange notes and know your experience my email is salkafy@kau.kau.sa. 323 450 8702

N-sara2006 - posted on 09/23/2017

13

0

0

My baby boy has trisomy 19 plz I need to exchange notes and know your experience my email is salkafy@kau.kau.sa. 323 450 8702

Antimeny - posted on 04/21/2017

5

0

1

My cri du chat baby eats amazing he doesnt have any of those issues he's starting to hold his head up at 4 months he was an premie 32 weeks 4 pounds 2 oz now hes 12 pounds 13 oz

Nata25_08 - posted on 03/27/2017

1

0

0

Hi Kim, I also have two children with 5 and 8 chromosome disorder. I'm from Russia and would like very much to find somebody who knows smt about this problem.

Towana - posted on 02/02/2017

31

16

14

I am the grandmother a 9 month old girl named Ariana. She lives with me and my husband. We found out on January 17th of this year that she has Trisomy 4 / 4q duplication syndrome 4q32.3-35.2.She has also not meet her milestones. I have joined another group and they seem to have a lot of information : www.rarechromo.org
on different Chromosome disorders and the can put you in touch with people in your state. Give them a try.

Katiedillon87 - posted on 01/13/2017

1

0

0

Hi Carol. I know the post I'm replying to is more than 4 years old, but we just found out my 2yo has a deletion at 7q31.2-q31.33, including a loss of the FOXP2 gene. I know it's not an exact match, but I'd love to find out what similarities there are

Alkirst - posted on 12/08/2016

3

0

0

my daughter is 12 and they have just found tis in her first dna test also markers for epilespy

Alkirst - posted on 12/08/2016

3

0

0

you can contact me at Alkirst@hotmail.com or fb I am still trying to work out what it means for her and us we have trisomy 19 12mb

Jana - posted on 09/02/2016

1

0

0

@Sho Wilkins, my daughter also has partial 7p21 deletion. I would love to get in touch with you. Thank you!
If anyone else has information about this specific chromosome disorder, I am always glad to discuss it.

Buffy - posted on 07/12/2016

1

0

0

This is a reply to Katie's comment from 6 years ago! Katie I JUST found this site and you are only the second person I have found with a child with Ring 15 disorder. I would love to hear how your pregnancy went and how your family is doing. I would also love to ask you some questions. If you get this please email me at bufferinasmith@gmail.com. Thanks and am praying somehow you see this!

Buffy Smith

Poonam - posted on 07/01/2016

5

0

2

Hi my child is 22 month still not walking, she has inversion 5 balanced what can be the consequence of this any help would be great... Pls

Ashley - posted on 06/25/2016

1

0

0

My son is turning 4 in a couple months. He has chromosome 7q21 missing also. It is very scary not knowing the outcome since it is rare

Angela - posted on 04/18/2016

1

0

0

Hi, my son is 9 he was diagnosed when he was 8 with 3q29 microdeletion anyone else have kids with the same deletion?

Mavi - posted on 04/01/2016

1

0

0

Hi I have a 10 year old daughter who was diagnois with 9p21.1 chromosome deletion. She's also been diagnois with developmental delay and intellectual disability. Any other moms with information would help out a lot.
My email address is mavilovesu@gmail.com

Roxanne - posted on 01/26/2016

1

0

0

Is a duplication the same as having an extra? We were just told our daughter has an extra piece of Chromosome 19.
She told us this doesnt even have a name because it is so rare.. i don't think this is life altering/shattering, but yet i am a wreck worrying about what this all means

Marianme - posted on 12/21/2015

14

0

4

Hi my son was born with unbalanced translocation between 7 and 15 . I would love to get in contact with u! I have not found anyone else that has to deal with the same disorder I have to !!!!

Brad - posted on 12/13/2015

3

0

0

Hi. My daughter was just diagnosed with 19 duplication. How old is your child? Please contact me

Karen - posted on 12/07/2015

1

0

0

Hello, wanted to know if your child has a chromosome 19 duplication? My daughter has it and im looking for more information please please let me know anything.

Carrie - posted on 08/17/2015

5

0

2

I love this post and all of the responses you've received! I would LOVE to meet another mom who has a child like mine- My Jack is 3 1/2 years old, he has a partial chromosome deletion-- 15q13.3-15q14. I've been told it's EXTREMELY rare, but I would love to meet another child with this deletion!
Anybody else know a child with this deletion? You can email me Carriesmith11411@yahoo.com or on twitter-- @CarrieAnnSmith5

Liza - posted on 06/28/2015

11

0

4

Hi. My name is Liza I live in NY. My 2 Boys and I were diagnosed with chromosome 16. What does that mean? I still don't have a clear definition of it. All I know and see is that my oldest that's almost 8 has a behavioral disorder that distracts him from focusing on what he need to do. My youngest screams, is a little aggressive and gets very excited. Sometimes I can loose my mind. If anyone has more information please email me luvmy2boysjj@yahoo.com inwood appreciate all the help.

Liza - posted on 06/28/2015

11

0

4

Hi. My name is Liza I live in NY. My 2 Boys and I were diagnosed with chromosome 16. What does that mean? I still don't have a clear definition of it. All I know and see is that my oldest that's almost 8 has a behavioral disorder that distracts him from focusing on what he need to do. My youngest screams, is a little aggressive and gets very excited. Sometimes I can loose my mind. If anyone has more information please email me luvmy2boysjj@yahoo.com inwood appreciate all the help.

Liza - posted on 06/28/2015

11

0

4

Hi. My name is Liza I live in NY. My 2 Boys and I were diagnosed with chromosome 16. What does that mean? I still don't have a clear definition of it. All I know and see is that my oldest that's almost 8 has a behavioral disorder that distracts him from focusing on what he need to do. My youngest screams, is a little aggressive and gets very excited. Sometimes I can loose my mind. If anyone has more information please email me luvmy2boysjj@yahoo.com inwood appreciate all the help.

Erika - posted on 06/01/2015

11

0

5

Hi what part of chromosome 7 is deleted? Is it the whole thing. My daughter has deletion 7p22

Diane - posted on 02/15/2015

1

0

0

I have to kids with this and my son is 12 also, his name is Christian he has a severe speech impediment, ocd, and ADHD with add he didn't read yet does your son?

Sherrie - posted on 01/28/2015

2

0

0

My son has chromosome 20p13 deletion. He is 8 yo now...anyone else out there with a child with this deletion?

Helen - posted on 01/24/2015

1

0

0

My daughter also has 16p11.2 micro duplication chromosome. She is almost 3 years old now.

Bridget - posted on 12/09/2014

1

12

0

My daughter was born with a genetic disorder of an unbalanced translocation of chromosome 11 and 5! I've also been told this is a rare disorder and they don't have anyone like her with the same to base anything on! I'd like to find some who is going trew what I'm going threw! I'd like to be able to talk to a parent that understands what I'm going threw and maybe get some answers too! My daughter is 9 years old now and will be going on 10 in April!

Donna - posted on 09/10/2014

1

0

0

hello what ever happened my son was just diagnosed with the same thing-how is your son

Chelsie - posted on 07/10/2014

1

0

0

hello everyone i have a son that well be three in october 2014 and he was diagnosed at 16 months with 16p11.2 micro duplication if anyone else on here has a child with the same thing it would be great to hear from you and see if you may have any information on this type of chromosome disorder then i already do if you think you might please email me at wazupwyou4@yahoo.com and put 16p11.2 in the subject thanks in advance for all you other wonderful mothers with kids that have other types of chromosome disorders i wish you and your kids the best of luck and hope that god continues to bless us all

Polly - posted on 06/24/2014

1

0

0

My son has a 22q 13.32 duplication. The size of the duplication is 2.106 Mb
I wanted to connect with other moms in a similar situation. Sam is 6.3 years old and has a lot of speech issues. I don't know what to expect as want him to do more like typical kids are doing.
I would love to exchange notes with anyone in a similar situation

Terry - posted on 04/27/2014

1

0

0

We have a 29 year old daughter with 7q minus syndrome. Back when she was diagnosed, medical technology was only just beginning to be able to determine such chromosome disorders. Because of this we don't know the exact areas and extent of her deletion but recent reading up on the subject seem to indicated 7q21q22 based on the extent of her disabilities. She is approx 4 feet in length and weighs about 51 lbs. Suffers from infantile spasms, hearing loss, visual issues and fed by g-tube. Overall her health has be fairly good these past 15 years or so but recently having issues with her GI tract.

Beth - posted on 03/22/2014

2

0

0

Hi Jeannie Rizza,
My daughter has the same duplication. We just found this out as well. She is turning 11. She had delayed gross motor delay and struggles in math. She also has very short stature. We are currently waiting for an appointment with an endocrinologist to explore the the options of growth hormone therapy.

Megan - posted on 03/09/2014

1

0

0

Does anyone know of chromosome 20p13 duplication? My daughter who will be 2 in May was diagnosed at 2 weeks old with it. All I keep being told is that it's rare and if I notice anything to bring it to a drs attention. For the last few months she's constantly falling into anything and everything. She will walk fine and just like trip and fall. Has some anger issues(more than the normal terrible 2s or 3s).

Dawn - posted on 02/21/2014

9

0

2

My step daughter has 9p21.1 and 15q21.3. She was diagnosed moderate mental disability just over a year ago and also has ADHD and disruptive behavior disorder. Chronologically she is 10 but her ca is about 5. I had found out about Unique and even they do not currently have any cases with the same chromosomal abnormalities. The thing is that her mental disability isn't what is difficult to do with, we have learned to simplify things for her, no difficult chores and we know due to the ADHD to keep things in a short period of time, 20- 30 minutes. The difficult part is the disruptive behavior disorder. She knows right from wrong because she tells on herself often times. When I finally found literature on DBD all the characteristics fit her to a T. Defiance towards authority figures (me and her father) inability to take responsibility for her actions, stealing, lying, doing things to irritate others especially her brother who also has ADHD and can be very touchy at times. Sadly most every day is a battle. And what works to get her to behave one day does not always work a few days later. We we were seeing a behavior therapist but he said he had very little experience in dealing with mentally disabled children with the DBD. So I have been trying off and on for a year to find a behavior therapist with little luck. Recently her teacher has started have more problems with her behavior. She has gotten comfortable at her school so now the stuff starts up. I wrote a non sugar coated letter to her explaining to her that we deal with the brunt of her problems at home and have no real suggestions to get her to behave. Her teacher said she would do some research and get back with me. I told my husband with it being the special education teacher she may have some connections that we don't.

Lilliam - posted on 02/05/2014

3

0

0

My princess passed away august 29 2012 she had trisomy 18 or eduard sindrome its so hard for me because l had decided the pregnancy termination at 20 weeks

Andrea - posted on 01/23/2014

2

15

0

hi my name is andrea I have a son who is 6 he has global development delay a blood disorder speech and language delay hypermobility and now he has missing chromozone ten I don't knw what that means me and my ex partner had blood taken but that's it for nw can u please give me any information on what it means pls

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms