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Author Topic: Has anyone adopted a child with 22q.11.2 deletion syndrome?  (Read 2496 times)
6X-Blessed
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Has anyone adopted a child with 22q.11.2 deletion syndrome?
« on: June 27, 2013, 12:06:58 AM »

Our daughter has this very complex syndrome and I am wondering if anyone on here has dealt with it.

Thanks!
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lookingtochina
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #1 on: June 27, 2013, 12:13:14 AM »

This is sometimes called DeGeorge or VCFS I believe

I think one or two on this forum have experience.  We have a couple families in the china heart Facebook group who's child was found to have this. It is found in some percentage of TOF kids
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MeghansMommy
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #2 on: June 27, 2013, 12:58:47 PM »

Last school year one of my 8th grade students had this diagnosis.  His mother shared this website with me:  www.22q.org/‎
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MeghansMommy
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BethDinSoCal
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #3 on: June 27, 2013, 05:05:04 PM »

I believe there are several on the "adoptcleft"  yahoo group.  Cleft palate is often part of the syndrome.  The group is very active and informative.
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missmaria
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #4 on: June 28, 2013, 08:34:22 AM »

My DD was diagnosised with velo-cardio-facial syndrome which is a part of the 22q deletion syndrome about a month ago. She is 5. She has a heart defect (TOF), was born with an extra thumb, ang has a VPI. We meet with a genetic team that explained a lot to us, but there are so many unknowns and is it an a complex syndrome.
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Sharon51
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #5 on: June 29, 2013, 08:00:53 PM »

We just found out our daughter who was listed as mild developmental delay as a little bit of 5 minus p syndrome. This would explain her small head, short stature and delays. Hoping she will be able to lead a normal life. The only downsize being is there is a 50% chance she would pass it on to her children.
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6X-Blessed
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #6 on: July 01, 2013, 10:47:03 PM »

My DD was diagnosised with velo-cardio-facial syndrome which is a part of the 22q deletion syndrome about a month ago. She is 5. She has a heart defect (TOF), was born with an extra thumb, ang has a VPI. We meet with a genetic team that explained a lot to us, but there are so many unknowns and is it an a complex syndrome.
Our daughter is 3- long story but was diagnosed in China because another family travelled to adopt her a year ago.  She has "CHD, pulmonary artery atresia, VSD, postoperative PDA repair, inadequacy of PV(minor to moderate)".  She may have some scoliosis, and isn't talking yet, the other family thought mental delays...I think too hard to tell yet, institutionalization can do the same thing.  I joined a great yahoo support group- it is interesting the wide range effects and how it is ever evolving and changing throughout life.  She will be our 8th child.  I am accepting that there is no way to prepare or know what we will encounter...
Lisa
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kirbystarcat
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #7 on: July 05, 2013, 09:10:29 AM »

Our child has a 22q13 deletion which is very different but the two often get confused because the deletions are both on chromosome 22, because of this I know that nationwide children's hospital in Columbus has a large center for 22q11 patients and they have a very informative website.  Hope this helps.
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momclarkhome
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #8 on: September 09, 2013, 08:54:44 PM »

We just found out our 4 1/2 year old daughter has 22q /vcfs-- she came home  a year and half ago...it's taken this long to figure out what her combination of symptoms was.   She has a slight VPI, conductive hearing loss, "innocent " heart murmur, and severe speech delays.   She has no cognitive delays.  Her speech issues are most likely related to her hearing loss...which are due to awful untreated ear infections the first three years of her life.   On the whole...she falls on the more minor end of the 22q spectrum.   She may have some learning issues as we move forward but so far is meeting  and exceeding all developmental milestones other than speech articulation.   She is also small in stature but that may just be because of her ethnicity.  She also has a 50% chance of passing 22q on to her children...and there is really no telling which of the 180 characteristics she will pass on...something to think about I guess.

I realize that the information "out there" can be overwhelming and negative but not all children with this chromosomal abnormality have bleak or medically fraught futures.  Our little one is cuddly and clever and artistic and joyful.  And perfectly made. She DOES have her work cut out for her (as do we) in the speech articulation department--I foresee many years of speech therapy.   But we are finding more and more resources to help with that as well.
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Volante
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q22 deletion conference @ Nationwide Children's in Columbus, OH
« Reply #9 on: September 12, 2013, 08:31:05 PM »

Was down at our children's hospital yesterday and saw an ad for this conference.  Thought it might be of interest.

http://www.nationwidechildrens.org/news-room-articles/nationwide-childrens-hospital-to-host-22q-conference-sept-21?contentid=119711

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Volante
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Conference @ Nationwide Children's ...
« Reply #10 on: September 12, 2013, 08:32:28 PM »

Sorry - Mis-typed ...

My heading should have read 22q.
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6X-Blessed
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Re: q22 deletion conference @ Nationwide Children's in Columbus, OH
« Reply #11 on: September 13, 2013, 11:27:51 PM »

Was down at our children's hospital yesterday and saw an ad for this conference.  Thought it might be of interest.

http://www.nationwidechildrens.org/news-room-articles/nationwide-childrens-hospital-to-host-22q-conference-sept-21?contentid=119711



Thanks for the link!!!
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6X-Blessed
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #12 on: September 13, 2013, 11:41:03 PM »

I realize that the information "out there" can be overwhelming and negative but not all children with this chromosomal abnormality have bleak or medically fraught futures.  Our little one is cuddly and clever and artistic and joyful.  And perfectly made. She DOES have her work cut out for her (as do we) in the speech articulation department--I foresee many years of speech therapy.   But we are finding more and more resources to help with that as well.

Thanks so much for this footnote.  This wait gives way to too much time for research preparedness.  She has spent 3.5 years in an orphanage, so that shows some sort of an immune system!  It did my heart good to hear a story of more of a minor case.  We do know that she only makes a squawking dinosaur like sound, so I am sure speech is going to be an issue for us as well.


pursuingmiracles.blogspo t.com
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Momtoheath
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Re: Has anyone adopted a child with 22q.11.2 deletion syndrome?
« Reply #13 on: October 28, 2013, 01:57:22 PM »

We are in process of adopting a child that is suspected of having 22q 11. Any advice would be great.  Our hospital in Philly has a center for 22q once we get home.
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