My daughter has partial degeorge syndrome she now 13. This I know is rare. If anyone has a child who has it I would love to hear from them.
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My daughter has partial degeorge syndrome she now 13. This I know is rare. If anyone has a child who has it I would love to hear from them.
Quote:
Originally Posted by corriehac
I have a daughter also who was diagnosed with partial degeorge syndrome shortly after birth. She is 5 yrs. Old. My email is [email protected]
Hi my son is 12 he also has this syndrome he has problems with speech is deaf in his left ear has had heart surgery but he is very good about it all excepting he is a bit different to his siblings & peers I live in Wales & am yet to meet anyone with this condition would relly love to chatQuote:
Originally Posted by corriehac
My Bestfriend's brother was born with it and he's almost 21 years old. I've known him since he was 4 years old, he's like a brother to me. What questions do u have?
Hi I'd just love to know how he is is he well and is he very sociable and does he encounter many problems having this condition
:)Quote:
Originally Posted by bridie butts
Hello,
My name is Lee I have a daugther that has De George , she is 22yrs great from high school, in 2005, she drives a car I was told that she would never be able to drive a car, or do anything with her life. She is going to start collage in the summer, she wants to be a chef that's what she is in scoool for. She has had open heart surg when she was 8 months old. She does have a speech problem, it's hard for to pronce the letter [r], and when gets excited about something and tals to fast I have to tell her to slow down. She can progem a computer. Make her own web site. We are very proud of her, When the doctors, tell that your son or dauhther can't do anything because of this , tell them about my child.
Please feel free to write me back.
How many children have De George ?
Cheyenne is doing fine. She is now 14, wow! My email is [email protected]. Cheynne this year had one problem with an infected tooth, that she had to stay in the hospital. It is so nice to hear from so many.
Hello I have a seven year old with partial degeorge. After genetic testing we discovered my husband also has it
My son is 14 and he has degeorge syndrome, he has had 4 heart surgeries, speech classes, cleft pallet operation, & has immune problems. He has terrible head aches from his blood pressure. This year we put him in special classes to get extra help in school (A's this year). We hope to get his learners permit soon. He understands things differently than most people. He has very few friends and looks down when someone talks to him. He has the turned ear with a bald spot over the ear. He can't blow his nose & snores. He does not show emotion much. We hope he will go to college. My email is [email protected]
Its been good to hear from other people with cheyennes problem. Cheyenne is now 14. She still does not have many friends. Our email address is [email protected]
I have a grandson who will turn 5 in a couple of months. As we talk the Doctors are wanting to open his pallet for better speech, has anyone had this done? And will it help him speak better? Also what is partial degeorge?Quote:
Originally Posted by Dian1122
Yes, my son had cleft pallet surgery, they had to move part of the inside of his mouth over to another part. He really needs another surgery to repair some more but we have decided to wait. He talks through his nose and tried to play the trumpet (he couldn't). He had speech lessons but stopped because he can not change any more until he gets more surgery.
My daughter cheyenne had surgery at 5, she was in the hospital for 2 weeks she refused to eat, because it was so scary for her. She still talks threw her nose a little, but is a lot better than it was. I wish in away I would have waited till she was older and could understand a little more. She still takes speech till this day.
Were not sure would like to talk more ,does you child have any heart conditionsQuote:
Originally Posted by corriehac
Hi,
This is a wonderful place I have found. My son was diagnosed at age 10. He had open heart at 12 weeks, with complications. He is 17 now and going to be a senior in high school. Elementary & jr. high he did with TSS workers, high school on his own. GPA this year 2.88 taking mostly regular classes. His permit is about a year old now, but we are working on it.
Did a college tour last night near home. He will go, maybe with some help.
Please don't let anyone tell you what your child cannot do, we have fought the doctors, the school and I am sure there will be more. Our children are fine, they just see the world differently and learn in their own way. The funny part, our son has total recall of conversations, events that have happened years ago... very freaky sometimes.
Hello. My son was diagnosed with DeGeorge in May, 2008. He has survived two open heart surgeries. If you want to visit, my email is [email protected]
Hi my son is 2 and a half and has degeorge syndrome, in the process of finding out about him I have it too, Which I see as a good omen, I've been to college and got a diploma as well as working as a nursery nurse, So I know he might struggle for awhile but he will get there in the end, just like me, He already has a head start from me as he's getting all the help needed way before I did my email address is [email protected] if anyone wants to chat. Lou xx:)
My daughter just turned 13 and was born with De George Syndrome. She has had special services since she was about 1 year old. She is now getting out of Special Ed and graduated into an inclusion class . It seems as the children go through adolencence they have more health problems. We've been through a lot and continue to face new challenges all the time. I would be happy to answer any questions you may have.Quote:
Originally Posted by corriehac
My son is 14 and 1/2 and just completed drivers ED! He will get his permit in Jan. He gets stronger and healthier as he gets older (but all DeGeorge babies are different, and also similar)! School starts back in a few weeks, we will have to see how he does this year. God has a plan for us and these kids!
I am a nanny for a baby born with degeorge syndrome. When she was first born doctors said that she did not have it but now they say that she does. She had open heart surgery at three months. Tomorrow she will be six months old and has spent three of those months in the hospital. We just found out that her lungs are not growing and the doctors have said that there is nothing else that they can do for her.
My son is 7 months and has DeGeorge Syndrome. He had two open heart surgeries and some other complications. If you want to talk my email is [email protected]. Thanks!
Hi my name is nancy my daughter is 12 and has degeorge syndrom. I would really like to talk to someone else that is going through what I go through everyday. Please contact me I would really like to talk. [email protected]Quote:
Originally Posted by dian1122
Hi my douther have degeorge syndrom she have 5 years old she had 1 sergury on the open hart when she had 8 manth first she had when she had 3 manth but it was small surgery. The last one what she have was big one about 3 houers in the uniwersyt of chicago but now she is fine:)) just litte slow with the speech she going to pre school naw secend year she is speak litte polish and litte english she is very smili girl shi is normal person , she just will be have problem with the shool and one more surgery :)))) but she like school very much when she was smool she had all 4 terapist going from the city she had problems with her hips she need to were a cave araund 2 month but now she OK :) if someone speak polish its better for me::))) my email [email protected] roza:) she had just smoll of the hromosom nnat much:)))
Hello, my grandson was diagnosed w/this syndrome right after his open heart surgery at 4 mo. His fish test showed the 22chromosome to be defective. And he did not have the thymus gland. He is a partial DeGeorge w/ 3 out of 5 characteristics. After all infant immunizations tests show that he retained 75% of all immunizations. God has truly blessed this beautiful child and has kept him healthy. He is on calcium for rest of his life but has not had to take any other meds. He has been delayed in many things, learning to walk, speak, etc. He is 6 yrs and has been in special needs pre school and will be promoted to the next level still in special needs setting. I actually have been quite frustrated medically because there just isn't enough known studies or hasn't been published about DeGeorge.
My son is three years old now. He has had two open heart surgeries for Truncus Arteriosus. He had all the tests for Degeorge Syndrome and it came back negative. He does have a duplication 7q, hypothyrodism, had a craniotomy for repair of premature closure of metopic suture, did walk late and is in speech classes currently. They told us when he had his heart surgery that he does not have a thymus. Wasn't sure if it was cut during surgery, but other wise was born without one. We have had no problems with that. He had not been sick more often or anything.
I would love to talk to anyone also... [email protected]
Here is a link to an online support group: http://www.mdjunction.com/digeorge-syndrome Thanks for reaching out and not choosing to live without support.
My son who is 3 now was born with Degeorge Like Syndrome. He also has a heart disease with pulmonary artis. Which one or both vals with need to be replaced. He just got diagnosed with moderate autism. He is one special little man though. He acts like any other 3 year old boy. Feel free to email me at [email protected] My name is Cindy.
Hi there my name is mandy and my doughter has degeorge he has a 22q11 and she is 9 ears old know I like to no if there any one out there to help me please
[QUOTE=mandy2010;3308521]hi there my name is mandy and my doughter has degeorge he has a 22q11 and she is 9 years old know I like to no if there any one out there to help me please[ if there is any one out there that has a child like min please get in tuch I find out she had this when she was a baby she has all the simtams that go with itshe don't sleep and she can talk all that well /QUOTE]
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