Down Syndrome
Get the facts on Down Syndrome treatment, diagnosis, staging, causes, types, symptoms. Information and current news about clinical trials and trial-related data, Down Syndrome prevention, screening, research, statistics and other Down Syndrome related topics. We answer all your qestions about Down Syndrome.
Question: down syndrome? I have a daughter with a heart condition and needs heart surgery to fix her heart. She also has down syndrome. I decided to stop working until she had her heart surgery and a full recovery. Now we are running out of money and bills are pilling up is there any help for families with children with special needs. She will have her surgery in 2 mths and we do not have enough.
Answer: Hi!!!...you don't say where you are located, so I am going to assume the US. I too am a mom to a child with down syndrome and my son had av-canal which was a large hole in the chambers of his heart that required surgery at 4 months old to fix. I understand your worry...but there are programs out there to help. in our state (wisconsin) there is a program called katie beckett (it might be named differently in your state) it is specifally designed for kids with special needs and offers health, dental, vision coverage at NO cost to you and it is not based on your income. if your daughter is young enough they can go back all the way to the time of her birth and cover her bills! you will need to contact your counties health and human services department to get the information and application. do you have your daughter in a birth to 3 or early intervention program? if you do, ask your service coordinator to help you... that is what they are there for. this program is straight title 19 and she will have this until she is 18 yrs old.
you can also receive social security disability for her, but this is based on your income (not sure of the limit, you will have to ask) call the local SS office and ask. if you are under the income limit your daughter would be able to get state help and federal social security money to help with expenses along with medicaid for health insurance if your daughter is delayed 30% or more. also look into WIC at the health and human services dept. this will help with formula and milk and such if you meet the criteria. There are so many rograms out there to help.....it is a lot of paperwork on your part and a lot of jumping through hoops and red tape but it is worth every second you spend on it....I know this for a fact....due to complications after my son's surgery he spent 19 days in the NICU at a total cost of $250,000 and we never were billed for a penny (thank God!) if you need any help or have any questions please feel free to email me!
Julie
Question: Down-Syndrome? My little brother has Down-Syndrome he is 15 his name is Cameron and I was wondering why everyone who see's him looks at him like he is a freak?Yes everyone in my family loves him belive it or not he is one on my best friends and im 18 lol
Answer: God does not make mistakes, He chose the perfect family for your brother. Forget what other people think, something tells me you will not hesitate to stand up for him to anyone that looks down on him.
Question: Are there different types of Down syndrome and what areas of the body does Down syndrome affect? ? Also, are there any significant statistics related to Down syndrome? Has Down syndrome received any recent attention from the media? Are there any famous people that have Down syndrome.
Answer as many of the above questions as possible.
Answer: There are three types of Down syndrome, garden variety Trisomy 21, mosaicism and translocation.
Read more at:
Welcoming Babies with Down Syndrome (English, Spanish, French)
http://www.bellaonline.com/articles/art3…
There is a slide show that also incorporates videos of the featured 'More Alike than Different' cast at the National Down Syndrome Congress website:
http://www.ndsccenter.org/morealike/flas…
And great information at the National Down Syndrome Society website:
Down Syndrome Fact Sheet
http://www.ndss.org/index.php?option=com…
You might also enjoy
Margaret's Guide to Down Syndrome
http://www.patriciaebauer.com/2007/05/12…
For bios of actors with Down syndrome, see:
Down Syndrome and the Acting Gene
http://www.bellaonline.com/articles/art3…
and
DS in Arts and Media
http://www.dsiam.org/
and
Michael Johnson
http://www.users.psln.com/sharing/Michae…
and
Sujeet Desai
http://www.sujeet.com
Down Syndrome Links at the Family Village website
http://www.familyvillage.wisc.edu/lib_do…
Check out this recent New York Times article:
The DNA Age: Prenatal Test Puts Down Syndrome in Hard Focus
http://www.nytimes.com/2007/05/09/us/09d…
Have fun with your research!
Question: What is so bad about having down syndrome? I think people are a lot colder than they want you to believe. Too many pregnancies prediagnosed with down syndrome are terminated! Doctors tell people that their kid will be like some animal and people believe them. I've met my share of people with down syndrome, and they all seem pretty human to me. On top of that, they were all decent folks, which is a lot more than I can say for the general population. And how does knowing that unborn children are purged because of down syndrome affect those who were born and have down syndrome?
Answer: WOW!! I'm so glad that there are other people who's lives have been touched as mine has. See when I was 28 I gave birth to twin girls and one of them was born with Mosaic down syndrome. Of course, I didn't know much about it til now....and yes I was shocked. They are 14 months old now, and such a blessing as well as my two boys. My daughter is about 4 months behind in her milestones, but she is always so happy! Out of all my kids she is the easiest to handle.
It's always nice to have other people, who see that they are more alike, then different from the rest of us.
Question: Why do people wear ribbons during the 'down syndrome awareness month? I have no idea why people wear a ribbon during the 'down syndrome awareness month. I am doing a project on down syndrome, and I would love to include why they wear it, but none of the web sites that i have looked at have why they do... Can you help me? Thanks!
Answer: It is all about raising awareness in order to educate more people about Down Syndrome rather than what a lot of people did back 40-50 years ago which was hide it away and ignore it.
We r proud families or friends of people with down syndrome who want to share the realities about it with everyone.
Question: How do they determine Down Syndrome while pregnant? I just seen a question on here about the blood test they offer you to take. My doctor asked me if I wanted to do it but I asked her for some time to think about it. But how exactly do they determine a baby having down syndrome? And what causes a child to have down syndrome?
Sorry if it seems like a stupid question but this is my first child and I am really curious.
Answer: there are 2 ways.
the first calculates the probabilty of down. an ultrasound is done at 13weeks which measures the nuchal translucency (thickness) of the babys neck, this along with a blood test and family history, calculates a probability of downs.
the second, give a clear yes or no answer. its called amniocentesis. a needle is passed into the amniotic sac and a sample of fluid is taken, tested and gives a resulted of the chromosomes, downs is identified by 1 extra chromosome to a 'normal' sample. this test is fairly invasive, and carries a 1% chance of miscarriage.
Question: What are the odds to having a down syndrome baby with 2 ultrasound abnormalities? I went in for my ultrasound at 19 wks and found out the baby has echoing in the heart ventricles and a cyst at base of brain. Individually, they would not be concerned, but because 2 abnormalities are present I need to go in for a level 2 ultrasound. What are my odds for having a down syndrome baby at 30 with these abnormalities being present?
Answer: I am 34 and had 2 abnormalities on my son's ultrasound. He had an echogenci foci (white spot on the heart) and a dilated kidney. He is a perfect 3 month old. 2 abnormalities is not unusual at all. Try not to worry. I know that's hard because I've been there.
Question: What are the chances of us having a baby with down syndrome? My husband has two brothers, one of them has down syndrome. We currently had a miscarriage in September. The doctor didn't know why but it was possible that it was a baby with down sydrome. He wasn't for sure but he said it COULD have been a possibility as to why we lost that baby. We are now trying for baby #2, what are the statistics and the chances that our child and all of our children in the near future will have down sydrome?
My husband and I are both 23 years old.
Answer: If you and your husband are 23 the chances of you having a down syndrome baby are VERY VERY slim! The younger you are (within reason of course) the better chances you won't have a child with downs syndrome.. how old was your mother-in-law when she had the baby with down syndrome? If you do become pregnant again you could talk to your doctor about doing a prenatal screening to see if your baby does have down syndrome so you could better prepare yourself if you feel that it is needed
Question: Where do I start if I want to interview someone with Down Syndrome? I have a school project on Down Syndrome and one of the requirements is interviewing someone with the disease or the caretaker of someone with that disease. I have chosen Down Syndrome. I'd like to find someone but have no idea where to start. I know doctors can't tell me because of doctor-patient confedentiality but does anyone have any ideas where or how I can find someone?
Answer: Call Easter Seals. Also, a local school may allow you to talk to a parent if they tell the parent that someone needs to do an interview and if it is OK with them, then they can call you. You also might put a wanted advertisement on Craigslist, but just do it on the phone and don't be going to their house by yourself. Your school guidance counselor might be able to help you get in touch with a parent by asking them if they would call you.
Question: What is the type of mutation responsible for Down Syndrome and what for Turner syndrome? What is the type of mutation responsible for Down Syndrome and what for Turner syndrome?
Answer: Neither of these conditions is caused by a mutation - a mutation is a change in the base pair sequence of a gene. Down Syndrome is caused by an extra chromosome and Turner Syndrome is caused by a missing or damaged X chromosome.
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