DiGeorge Syndrome Member Introductions

#51

I would like to talk with experience with DiGeorge syndrome. We are foster parents considering a little girl with it. I would like to learn more about.

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#52

my son was born on 1/29/07 i thought every thing was ok then he turned blue with 48 hours my life was up side down and my 2 day old baby was having open heart surgury when he was about 10 days old they told me he has diegeorge sydrome and walked out the room every doctors trip we found out more problems

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#53

My son who will be 4 in September was given the diagnosis of Pierre Robin syndrome when born, due to his small chin, and cleft palate. He was also born with Bi-lateral talipes, (clubfeet), and he also has hypermobile joints. We visited the Genetics counsellor today and she has recommended that we check for DiGeorge syndrome. I am looking to meet other parents to share experiences with and to hopefully gain support, and to find out more about this condition.

Many thanks

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#54

We have the possibility of adopting a child with DiGeorge Syndrome and are looking for information.

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#55

I have a 7 year old son that was diagnosed with DiGeorge a few years ago. He is doing well and really doesn’t seem to have severe symptons.

He has had pallet surgery several times and continues to go to speech. He has some learning disabilities that we just found out about this year. We also are starting to see behavior problems, mostly seeing that he is very inmature, doesn’t understand concesquences…

My son has medical problems that occur out of the blue. He recently has had kidney problems. He has a Baker’s cyst. He has problems with his toes. Just strange things.

I am looking for help. I was wanting to learn more about DiGeorge and where to go for help and support.

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#56

My son Ryan has DiGeorge Syndrome and reaching out to other families is enormously important to me. I enjoy learning about clinical/research developments but also how families overcome difficult challenges with kids such as ours. In particular, I would like to chat with families of children with cardiac and developmental delays, especially those who have preschoolers and are wading through early intervention/special education.

Thanks,

Jeannie Cornett

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#57

My adopted daughter has DiGeorge and we are entering the puberty phase. She is retarded and we are at a loss on how to care for her now. She has no inhibitions or boundaries. We are concerned for her safety and her personal hygiene. We need some advice and guidance.

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#58

Hi,
My grandson who has digeorge syndrome with of course many other medical complications lives in CA. He will be 2 years old next month. My daughter could certainly use a support group since her whole family is here on the east coast. Any suggestions? Need help.

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#59

Hello, my name is Ana, I’m “mami” to 3 beautiful kids! my youngest is 4 months old and has DiGeorge Syndrome. I am interested in learning as much as I can, and hearing what others experiences have been!

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#60

My name is Jae. My 11 year old daughter was diagnosed with DiGeorge Syndrome and Truncus Arteriosus April 3, 2006. Until now things have been o.k. I am finding myself very frustrated. Chrissy (my daughter) is getting into the “pre-teen” fase. Sometimes I am possitive that what she is going through is “pre-teen” other times I just do not know. I think she JUST DOESN’T GET IT. We use to be very close and now I feel like we are drifting apart. I have no one to talk to who understands. From what I understand this is not a common disorder. If I could please speak to someone who might understand what we are going through. A day may go by that I do not cry. I would love to have a relationship with my daughter again. After all, I do not know how much time we have together. Thank you for your time.

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#61

i have one baby with the DiGeorge, he is 21 months old. and i am looking for support of people who understand what he is like. and to better understand the diease. he has a large varitey of problems and i am so scared of what the future holds.i am a stay at home mother of three 7,21m,7m and we are kept very busy with his appts. and thearpys and i want to know how other familys cope.

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#62

For anyone looking for written information about DiGeorge Syndrome, VCFS, etc. I highly recommend paying a visit to the Velo-Cardio-Facial-Syndrome Educaton Foudation website:

www.vcfsef.org

They have a page listing support groups for the various areas in the country and internationally as well. Two books off of their “books and publications” page I highly recommend are

“MISSING GENETIC PIECES: Strategies for Living with VCFS, The Chromosome 22q11 Deletion”, written by Ms. Sherry Gomez of Arizona: A comprehensive HANDBOOK for Parents, Professionals and Anyone wanting to know about Chromosome 22 Deletion (22q11) and its dynamics.

Practical Handbook for Educating Children with Velo-Cardio-Facial Syndrome and Other Developmental Disabilities by Donna Landsman, the person who has lectured more about education and VCFS than any other person in the world. Available on advance order from Amazon.com for $55.00.

I don’t know if the second book has become available yet. I got a copy while at the annual VCFS Scientific Conference this past summer in Plano, TX. The author was there selling copies as well as giving a lecture. I think it is a must have for anyone with school children through high school. It also speaks of needs for pre-school too. It gives a good overview as to what our kids’ educational needs will be and some accomodations to make in Individualized Education Plan for Special Education.

Also, the VCFSEF has just recently published an informational brochure. Be sure to contact the foundation and ask for several copies to give to teachers and doctors.

More information can be found by contacting Children’s Hospital of Philadelphia (CHOP). They have a VCFS clinic that conducts comprehensive evaluations of kids with VCFS and the related 22q11.2 Deletion Syndromes such as DiGeorge. They also put out an awesome book called “Faces of Sunshine” that is wonderful and easy to read reference about VCFS and its associated conditions.

Another good website is Chromosome 22 Central:

c22c.org

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#63

Hi Guys! I’m a mom of 5 boys, one of which has DiGeorge Syndrome. I happened upon this site while looking for things about MRSA and DiGeorge Syndrome. My son is 4 years old, and in preschool. He has a speech delay, and they have an early intervention program. I’m VERY interested in learning all I can off of all of you, and helping you if I can.

I love to blog, and chat, and read forums…this place looks pretty good so far! :slight_smile:

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#64

Hi Everyone,
I am a grandmother of a boy with 22q11 deletion. He has had two heart surgeries as an infant.
I told my daughter I found a place where she can come to read and discover that she is not alone.
Thank you for sharing your stories.
Konwatarani

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#65

Hello everybody! I have a son with DiGeorge. My friend and I are trying to start a support group for our kids in Salt Lake. Please e-mail me if yu are interested. dsmom4ever@yahoo.com Thanks

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#66

Hello! I am so happy to have found you all! My son was born in October 2007 and was diagnosed after he had the FISH test due to the diagnosis of a laryngeal web at 2 mths old.
We were all surprised to find this out, even his doctors. He has no facial features, no cleft palate, he did have a small vsd at birth that closed on his own within 2 mths.
His development is on track so far. He is my 2nd child. I have a 3 yr old son who is healthy.
Jonah does have some immunity issues , has had a couple of viral illnesses, and thrush a couple of times.
We are in Toronto Canada.

I look forward from learning from all of you.

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#67

My daughter Teralynn is 2 1/2. She had/has issues with low calcium, hip displacia, sacral dimple, 2 VSD’s(OHS on 4/21/06), Submucus Cleft, VPI, fluid drained from both ears and a hammer toe. She gets PT, OT and ST. We live in Alabama.

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#68

We live in Baton Rouge, LA and our 4 year old son has a very mild case of DGS. He he is in a special prek class, loves adult objects like fans, etc and his pretty sharp but has the speech issues. We have him in speech therapy classes and we will utlize every resource our family has to make sure he gets the best therapy avaiable. We have been blessed that we haven’t had any heart issues. He had a kidney taken out at 4 days old and had the tyroid issues at Childrens in New Olreans. We are long passed that but dealing with the speech issues. Can anyone comment on if anyone has a similar case as mine.

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#69

HI,

My 2 year old son has DiGeorge. I look forward to meeting other parents that have children with it.

Cindy

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pinned #71
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