Tag Archives: Down Syndrome

Question?: Treatment For Autism In Adults

Chris asks…

Why is there controversy over the Combating Autism Act? What does it involve?

Autism is not a mental illness, but a neuro-biological disorder. But I’m not sure what category would be best for this question. I hope placing it here in the mental health section does not offend anyone. If it does, I’d like to apologize.

Ok, what exactly is the Combating Autism Act, and why are many parents of Autustic children, and many Autistic adults against it? Will this act find ways to prevent children with this syndrome from being born, or will it simply spread awareness about Autism, and provide treatment so that Autistics can function with more ease in society?

Would this also apply to people with Aspergers? Also, what will this mean for adults who have gone undiagnosed for years, only to find out at 20, 30, and older they have an autistic spectrum disorder? Will they be ostracized even more if Autism is eventually gotten rid of in the future? I’m confused and interested in hearing both sides. Thanks.

admin answers:

The Combating Autism Act is all about diverting funds to research a way to detect autism while the child is in the womb. There already is such a test for cystic fibrosis, spina bifida, and Down Syndrome. I cannot speak for CF or for SB, but I can for the DS. This sounds great, I know! I thought it was at first. My 5 yr old is autistic, and I would have loved to have known in advance that he had it, to have time to prepare, to research, to be more understanding from the start. What I learned though is that after this test for Downs was approved and in place, fewer babies were born with Downs, because the parents chose to abort the babies. A lot of us are seriously against the act because as parents of children with autism, we KNOW that even though our children have serious challenges and life isn’t always fun, our kids are so wonderful! They have moments that just blow you away, and can be so full of love. But, I can guarantee you that parents will not be told this when they test positive, and how unfair is that to abort a child with only hearing the scary, unknown possibilities? I took that stupid test for downs with my youngest child, and it came up positive, although I don’t remember the ‘chance’ they gave, but it was a high chance. I refused to take the amnio, because that can cause miscarriage and babies have been damaged from this. The specialist did everything he could to talk me into aborting my child, because of ‘how difficult it can be to raise a special needs baby’. If I wasn’t strong on my stance I probably would have aborted. How sad is that? My child didn’t have Downs! I found out that that test is not very accurate at all, that there is a high percentage of false positives. So, how many little lives were lost because of one-sided information and fear? It’s our fear that the same exact thing will happen with autism. Thing is, Autism Speaks, one of the biggest fundraisers for autism research, supports the combating autism act, so I don’t support them or any of the other high profile companies. If they would instead focus on testing these children AT BIRTH to determine if they had it, I would give them every dollar I have. But, I cannot and will not support a cause that ‘could’ basically cause a whole ‘type’ of people to be erased from the planet. Here’s a link for you to look at, it’s the one that started opening my eyes.

Http://www.youtube.com/watch?v=B9yFsQm2Bp4

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Question?: What Is Autism For Kids

Steven asks…

how to make kids with down syndrome and autism happy?

i mean how can i entertain the whole class of down syndrome or autism kids?

admin answers:

Music is generally a think that most kids like! Not only music but songs with lots of motion and dancing. It is important that you as the teacher/group leader have a lot of energy and enthusiasm. The children will (generally) respond better and enjoy it more if you are having fun and interacting with them.
My kids also love making block towers and knocking them down. We make obstacle courses, and with help, the children enjoy these. We do puppet shows. There are many many activities you can do…just be creative, and most importantly have FUN. It’s a whole lot more fun for the kids if you’re having fun too!

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Question?: Treatment For Autism In Babies

Lizzie asks…

Why do older parents increase the risk of child abnormalities?

Why does the risk of having a baby with a chromosome abnormality increase as maternal age increases?

admin answers:

There are 2 sets of factors, they are not mutually exclusive, and both may well be important. One set of factors involves biological changes that occur as men and women get older and that can affect the outcome of the pregnancy. Down syndrome would be an example of an outcome we know is sometimes related to maternal age. For women, as they get older, the hormonal balance of the womb changes in some ways, and older women are more likely to have infertility. There has been speculation that the hormonal changes that contribute to infertility, or the treatments for infertility, may increase the risk for autism, but we don’t have very good data yet. As a woman ages, she will have an increased cumulative exposure to chemicals and toxins in her environment that may affect the neurodevelopment of the fetus. Again, there are not very much data there, but it makes good biological sense to conduct research on environmental factors to which the mother is exposed before or during pregnancy that may affect fetal neurodevelopment.

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Question?: Pdd-nos

Maria asks…

How can we prevent the birth of Autistic people?

Autism…Aspergers; PDD-NOS and what have you. How can we prevent the existence of these little buggers before a whole new batch of them arrives in the next ten years and swallows up all our tax dollars. Unlike Down Syndrome, there’s no way of knowing in advance that you’re going to give birth to a head banging little dolt, so you can’t conveniently terminate the pregnancy.

How can we prevent a sea of these ” rain men ” from rising in the future?

admin answers:

Humm do you have any idea what such people have done to benefit the world today?

Large scale many Scientists & IT Folks, just to name a few professions, have Aspergers.

On a smaller I know many people who’ve rewarding experiences working with even the most “tragic” Autistic person.

& Sorry I’d prefer to spend a day with a loving Downs Person than righteous judgemental creations

.

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Question?: What Is Autism Yahoo Answers

Steven asks…

What is the best age to test for Celiac Disease?

My son has Down Syndrome and because people with DS have a higher risk of Celiac Disease, we have opted to avoid gluten until he can be accurately tested. I have gotten mixed answers as far as how early he can be ACCURATELY tested. Anyone any experience with this?

admin answers:

Hi! Some people say that a person needs to be eating bread/gluten for a least three weeks to test positive to celiac. Others say that no time is required. If you go to a doctor who has experience with celiac (preferably if they also have experience with Down Syndrome or Autism and the food connection with behavior), they will be able to note all of the symptoms and see the test results and make an accurate diagnosis. Many children never show the typical symptoms. Therefore it is really important that you find a doctor who has experience with celiac.

Another thing to remember is that some children are only gluten intolerant. This means that their bodies still react negatively to gluten, just in less intensity than in those with celiac.

I want to recommend to you a diet that has helped LOADS of children with autism, adhd, down syndrome, etc and adults with IBS, Ulcerative Colitis, IBD, etc. It is similar to gluten free / casein free (the diet that many with downs syndrome and autism follow)… But it is much more effective.

It is called SCD (specific carbohydrate diet) and works by helping the body digest corrently again… Based on 50 years of research into how the small intestine affects the brain.

You can ask loads of mothers on the yahoo groups forum for this diet about celiac testing. They have loads of experience about how their children are affected by the food they eat.

Http://health.groups.yahoo.com/group/pecanbread/

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Question?: Treatment For Autism Children

Michael asks…

What careers are out there that work with autistic and down syndrome children?

I am a junior in college and my major is Special Education. I want to teach special education, but I was thinking about continuing my education and getting a masters in Psychology. My dream job would be working with autistic or down syndrome children in the hospital atmosphere. Do you know of any other careers other than Special Education? Thanks =)

admin answers:

Still within special education is “gifted” teacher. In my experience many of the “gifted” children have a form of autism called Asperger Syndrome, which is what makes them “gifted” in certain areas and lacking in others such as socialization and people skills.

Another job series involving many autistic and down syndrome children is neurotherapy. Neurotherapy clinics typically have speech pathologist, physical therapist, and occupational therapists. These are usually clinics where patients come in for treatment sessions of 1 hr increments.

As far as a hospital setting, there are “developmental centers” for those with down syndrome or autism. These are live-in, around the clock care centers for those with severe developmental delays. They usually have doctors, psychiatric nurses, aides with special psychology training, activity coordinators, dietary specialists, food service people, etc. Basically all the same professions as a nursing home. However, there are not as many of these as there used to be. It has been my experience that most families now chose to keep developmenally delayed and handicapped children at home and send them to regular or special schools, as well as seek out patient treatments for them in clinical setting.

There are also many summer camps designed especially for those with down syndrome and autism. It would probably be good for you to apply as a camp counselor and work at one of these for the summer to be sure this is the right path for you. Plus it would give you experience for the resume.

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Question?: Treatment For Autism In Babies

George asks…

What would you do if it came to your future baby’s health?

You or your wife (if you’re a guy) were expecting a child and found out that the baby you were going to have was going to be born with complications such as severe autism, down syndrome, or some other debilitating disease that would require your 110% dedication and care since the child wouldn’t grow up able to take care of itself. Your financial situation is barely able to afford your little apartment and a “normal” baby and you options are…
–grin a bear it, rely on foodstamps and making hubby work super long shifts to be able to afford treatments and taking care of your child well into your senior years, giving custody up once you get too old…
–hope someone is willing to adopt your special child and put faith in the adoption system in finding a suitable family…
–abort and simply keep the child from living a life of suffering and doubt while knowing God can do better than you…
–or…? How would you handle a situation like that? Sensitive, but its something to consider.
I’m all for taking care of disabled children (going into pediatric nursing hoping to do so)… However if you’re financial situation doesn’t really allow the medical bills and one breadwinner? Life has many “IF”s in it. I’d just like to know peoples opinions on things like this. Something the government should pay attention to and lend a couple of their billions to helping out with huh?

admin answers:

Amazing and disgusting we have come to this,a child doesn’t live up to the genetic expectations to just simple euthanize it,suck its body apart limb by limb while in the womb because the health of the baby isn’t up to par and not financially able to take care of it.How damn disgusting is this??

My children are the greatest gifts I could have ever received,and guess what,my son had cancer,a brain tumor,and guess what,I am divorced no child support and guess what I have a job to take care of my not so perfect children.And I would die before someone takes the life of my child in or out of the womb.

With your rationale,I guess the brown eyed child will be destroyed next right???

BTW,if people can’t afford children,they shouldnt have them.I didnt depend on welfare or the govt for food stamps or medical.It was hard work,but you know what..,my children are grown and both are hard workers..,you reap what you sow.

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Question?: Rett Syndrome In Boys

Thomas asks…

Examples of Syndrome caused by Chromosome Mutation?

Examples of Syndrome caused by Chromosome Mutation?
I’m needed to do a project and I want to know a variety of syndromes to research about that are interesting.

I know down syndrome is one of the syndrome caused by chromosome mutation but I want something different.

Things I will need to know are:
-How it is affected
-How frequently it occurs
-Symptoms of the Syndrome

admin answers:

WELL THERE ARE ALOT LETS START WITH…

1. TURNER SYNDROME is a genetic disorder that affects a girl’s development. The cause is a missing or incomplete X chromosome. Girls who have it are short, and their ovaries don’t work properly. Most are infertile. They are at risk for health difficulties such as high blood pressure, kidney problems, diabetes, cataracts, osteoporosis and thyroid problems.

Other physical features typical of Turner syndrome are

Short, “webbed” neck with folds of skin from tops of shoulders to sides of neck
Low hairline in the back
Low-set ears
Swollen hands and feet
There is no cure for Turner syndrome, but there are some treatments for the symptoms. Growth hormone often helps girls reach heights that are close to average. Hormone replacement can stimulate sexual development. Assisted reproduction techniques can help some women with Turner syndrome get pregnant.

2. KLINEFELTER’S SYNDROME: Also called: XXY male
Klinefelter’s syndrome is a condition that occurs in men who have an extra X chromosome in most of their cells. The syndrome can affect different stages of physical, language and social development. The most common symptom is infertility. Because they often don’t make as much of the male hormone testosterone as other boys, teenagers with Klinefelter’s syndrome may have less facial and body hair and may be less muscular than other boys. They may have trouble using language to express themselves. They may be shy and have trouble fitting in.

It is important to start treatment as early as possible. With treatment, most boys grow up to have normal sex lives, successful careers and normal social relationships. Treatments include

Educational services
Physical, speech and occupational therapy
Medical treatments including testosterone replacement

3. RETT SYNDROME: is caused by mutation in the gene encoding methyl-CpG-binding protein-2 Rett syndrome is a neurodevelopmental disorder that occurs almost exclusively in females. It is characterized by arrested development between 6 and 18 months of age, regression of acquired skills, loss of speech, stereotypical movements (classically of the hands), microcephaly, seizures, and mental retardation. Rarely, classically affected males with somatic mosaicism or an extra X chromosome have been described.

4. SEBASTIAN SYNDROME: Sebastian syndrome is an extremely rare genetic bleeding disorder. It is part of a larger category of blood disorders known collectively as inherited giant platelet disorder. Sebastian syndrome is mild and non-life-threatening. The symptoms of Sebastian syndrome tend to be quite mild. Some people who have the syndrome may not even have symptoms at all. People who have the syndrome tend to be susceptible to nosebleeds, may bleed from the gums and may bleed for a longer-than-normal time after being cut. They also tend to bruise easily. Women with the syndrome may experience a menstrual flow that is heavier than that of most other women. None of these instances of bleeding are life-threatening. The main risk associated with Sebastian syndrome is the liklihood of hemmorhage during or following surgery. Someone with Sebastian syndrome who undergoes major surgery may require a platelet transfusion afterward. To make a diagnosis of Sebastian syndrome, doctors will perform several tests. A complete blood count will be done, as well coagulation studies and platelet aggregation tests. Microscopic examination of the platelets also helps in reaching a diagnosis; the size and shape of platelets affected by Sebastian syndrome is distinctive. A genetic test may also be done to determine the presence of the gene that causes the syndrome.

5. DOWN SYNDROME: Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. In most cases of Down syndrome, a child gets an extra chromosome 21 — for a total of 47 chromosomes instead of 46. It’s this extra genetic material that causes the physical features and developmental delays associated with DS. Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. It affects about 1 in every 800 babies. The physical features and medical problems associated with Down syndrome can vary widely from child to child. While some kids with DS need a lot of medical attention, others lead healthy lives.
Though Down syndrome can’t be prevented, it can be detected before a child is born. The health problems that can go along with DS can be treated, and there are many resources within communities to help kids and their families who are living with the condition.

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Question?: Rett Syndrome Genetics

John asks…

Question about the genetics behind Treacher-Collins Syndrome?

From what I understand, in order for a person to have Treacher-Collins Syndrome they have to have at least one dominant gene for Treacher-Collins Syndrome. If this is true, then if someone has the gene for Treacher-Collins Syndrome that can be passed down to their child, then they themselves have to have the syndrome. If this is true, then how can two people, who do not have Treacher-Collins Syndrome or the gene that causes it, have a child who does have the syndrome? (The example that I’m referencing is Juliana Wetmore.)

admin answers:

There was a new mutation. It could be that the mutation happened in the sperm or egg, or that the mutation occurred in the zygote in the first few days after conception.

All of us have mutations in at least a few genes, genes that are anywhere from slightly different to our parents’, to missing or doubled.
Chromosomal abnormalities (Down Syndrome, Turner Syndrome, Edward Syndrome, Klinefelter’s), achondroplastic dwarfism, Rett Syndrome, are all examples of conditions where there is most often a new mutation causing it.

Other disorders have “premutations” where a gene becomes unstable and then starts mutating in further generations- the genes for Huntington’s Chorea (which gets worse and worse in subsequent generations), and Fragile X are like that.

Most autosomal dominant disorders are fairly uncommon because of the rate of new mutations.

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Question?: Autism Signs In Children

Chris asks…

What happened to children with autism and other similar disorders long, long ago?

I’m talking way before the disorders were ever discovered. Was there a time when children with disorders were killed or separated from society?

admin answers:

It depends on the severity. A child who was mildly autistic/Asperger’s would probably have been kept and raised, but a more severely impaired child would probably have either died or been cast out/killed, especially since temper-tantrums and screaming fits would have been viewed as demonic possession.
Also, children who were physically impaired (Down syndrome, other genetic or congenital disorders) would have been killed or discarded at birth because deformities were supposedly a sign of impurity on the mother’s part.
I once read a fascinating paper that said that so-called “wolf children” or children raised by wolves/discovered out in the wild were actually severely autistic children who were abandoned by their parents. It would have explained the intolerance for clothing, “wild” noises, repetitive motions, and inability to learn language.

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