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? what are some sympotoms of down syndrome patients? i know that they are overly quiet, have aggression toward others, and injur themself. IS THERE ANYTHING ELSE?

Answer: where in the world did you here that from!?! holy cow! I am a mom to a little boy with DS and what you described is NOT related to DS it is farther from the truth. DS is not a disease it is a chromosomal disorder resulting in an extra chromosome. the characteristics of DS (not symptoms) almond shaped eyes, broader nose, thicker fungal fold at the base of the neck, shorter legs and arms, low muscle tone, ears set lower on the head, simean crease on the palm of the hand, congenital heart defect such as av-canal, intestinal problems as well as developmental delays. not all of these need to be present either. as to them being overly quiet...LMAO come over to my house! you will see a different picture than the one you have painted. aggression towards others?...NOT! they are the most loving and compassionate people I have ever met and accept all whom they meet! they do not purposely injure themselves either. Please don't take this the wrong way....but I just needed to let you know your assumptions are way off base.

Question: Down Syndrome? What type of visual aid would be good for babies born with down syndrome, I'm cross stitching a quilt and would like to use the best colors, shapes or designs for the new baby due in a few months?

Answer: black and white works very well, as well as vibrant primary colors. stick to geometric shapes, for a baby. if you want to make the quilt for when the child is older cross stitch things that are around the house, like animals, trucks, dolls, flowers...things that the baby would see everyday. the reason I say this is because it helps with speech and recognition. another thought would be to add things on the quilt itself, such as rattles, toy keys, things that have different textures. since DS kids sometimes are tactile defensive (they may not like to feel certain textures) by getting the child used to different textures early on helps a great deal!

Question: DoWn SyNdRoMe? how long can somone with Down Syndrome live , do they have just a regular life or does Down Syndrome take over and kill them

Answer: You've worded the question strangely because it is not necessarily the Down's Syndrome that kills a person, it's the medical problems that are associated with having Down's Syndrome that may cause premature death, e.g. heart defects. "Q: What is the life expectancy for people with Down syndrome? A: This is a more complicated question than it seems, because how you answer it depends on how you look at the statistics. First, looking at how long adults with DS live: the last major published article to look at this was in California in 1991, and the results in that study may not be the same for any other place in the world. But that study looked at over 12,000 people with DS and found that major medical problems were not a consistent predictor of mortality, which was a common belief. Instead, self-help skills were the best predictor of life expectancy. Adults with DS and good self-help skills (mobility, self-feeding) could be expected to live into their 50s, while those with poor self-help skills were expected to live into their 40s. (Eyman RK, Amer J Mental Retard, 95(6): 603-612,1991) However, it would be foolish to predict how long a baby born now with DS would live as so many things can change for them medically and socially in the next decades. Looking at this question from a slightly different view, we can ask what is the survival rate for infants born with DS. A study from Europe in 1997 found that in babies born with DS, 88% were alive at 1 year and 82% alive at 10 years. The major cause of death in the first year of life was due to heart defects and/or their complications. If you split the group into with and without congenital heart disease, 80% of babies with heart defects were alive after one year, and 96% of babies with DS with no heart defects were alive after one year. Again, these statistics may change for other parts of the world. (Hayes C et al, Int J Epid, 26(4): 822-829, 1997) "

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: What causes people with down syndrome to have similar facial features? In my experience, people with down syndrome tend to have similar facial features. Is this because the condition causes them to develop these features or does it prevent them from developing different facial features? Serious answers please!

Answer: It is because the condition causes these features.

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: Do people with down syndrome always have the physical characteristics to show it? I know a 6 year old that has all the mental and emotional traits of down syndrome, but no physical characteristics. Does he have down syndrome? What else could it be?

Answer: No. They do not always have the physical characteristics. The only hallmark of the disease is mental retardation. Other characteristics such as leukemia, heart abnormalities, endocrinal alterations, gastrointestinal problems, physical dysmorphologies, etc are present to a greater or lesser extent in patients. In addition, some children do have a mental retardation that resembles Down syndrome without being trisomic for the DSCR of Hsa21. If it's a real concern, genetic tests can resolve which, if any, genes are triplicated; although, this will not affect treatment (but may be of value for funding for the parents).

Question: How does the Down Syndrome manifest at mongoloid people? Among the usual Down Syndrome marks is the Chinese face... how does it manifest to Chinese people? Does this disappear and the others remain or how? When a person has Down Syndrome there are some simptomps which include Chinese Look. Especially at the eyes. So I want to know that happens if a person who already has these features, namely a Chinese, is diagnosticated with Down Syndrome. What will he/she look like?

Answer: I would assume that their eyes just look even more "Chinese," thin and pointed at the corners.

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: how to start a hypothesis paper about down syndrome? I have to write a hypothesis paper about down syndrome and I haven't written one in a few years. Can anyone me get it started.

Answer: yes, I have a webpage you can go to and it will help you get started http://theglp.com/glp_down_syndrome.html Is the website, it has all kind of info that will get you started, hope that helps

Question: What is the chances of a baby having down syndrome ? My sister is pregnant and she is will be 38 when she has the baby. Of course we still love it if the baby had down syndrome but , what are the chances that the baby would have downs ?

Answer: The risk for her age is 1/177. This risk varies from person to person. I am 24 and my risk is 1/33. Anyone at any age can have a baby with down syndrome, its just a risk of being pregnant.

Question: How much does it cost to raise a child with down syndrome for one year? I am writing a paper on down syndrome and my teacher wants to know expenses for approximately one year to raise a child with down syndrome. This includes hospitals bills, prescriptions, school, and other things. Thanks!

Answer: There is no way to give an accurate answer to your question. Some kids with Down syndrome have significant medical conditions, others do not. My sister has DS, and in general, the cost per year for her - in terms of what my parents paid - were the same as for the rest of us children. She has always had good general health, no heart conditions or anything, and she has never needed to be hospitalized. Her prescriptions are covered by Medicaid, but even if the family had to pay for them, they would be no more than an average person of her age. The only medication she takes regularly is thyroid, which is very inexpensive. (There is a family history of hypothyroidism - 2 of the other siblings, and our mother, also take thyroid.) And if she gets sick, she might need an antibiotic, same as someone who doesn't have DS. So her medical costs are really no different than mine. As far as school, in the US, children with special needs qualify for free services at the age of 3. Some places provide services for infants and toddlers, too. My sister was lucky enough to live in a place that offered early intervention programs for babies with special needs. There was no cost to my parents for these services, nor for special ed preschool, nor for special education services from the time she was 6 until she turned 22. It is certainly true that special ed services are more costly to the taxpayer than general education. How much more costly depends on the nature of the services and the school district where the child goes to school. But your question asks about the "cost to raise" a child, which implies that the cost is to the family. In general, the cost to raise a DS child for a year is probably not significantly greater than raising a typically developing child.

Question: How many alleles does a person with Down syndrome have in a cell which is in meiosis I anaphase? There are 13 alleles for a certain gene carried by chromosome 21 in human population. How many alleles does a person with Down syndrome have in a cell which is in meiosis I anaphase? How do I do this? Thanks!

Answer: Normally a person's cells will always have two alleles of any gene regardless of how many possible alleles there are in the population. But a person with Down syndrome has three copies of chromosome 21 so has three alleles. In meiosis I anaphase, the homologous pairs have begun separating but the cell hasn't divided yet so you can still consider it diploid except for chromosome 21 which will be triploid. So the person will still have three copies of the chromosome, doubled to sister chromatid state. So the cell would have 6 alleles at that point.

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: Can a 38 year old male who has down syndrome but is otherwise healthy as a horse suddenly develop seizures? Can a 38 year old male who has down syndrome but is otherwise healthy as a horse suddenly develop seizures. Well, let me rephrase. I know they *can*, anyone can, but is that common or even heard of?

Answer: HI PROBABLY NOT BUT DON'T KNOW = ) JUST GOOGLE IT C YA