Tag Archives: Seizures

Question?: Rett Syndrome In Boys

James asks…

Is Rett Syndrome A Sex-Linked Disorder?

– How is the disorder diagnosed?

– Is it sex-linked? Is it a mutation? Is it due to heredity?

– What types of treatment there are for the disorder?

– Any other important information?

admin answers:

It affects girls and boys but for boys it is deadly usually before birth or up to a year old. They typically aren’t diagnosed because of their early demise. Its diagnosed by a bloodtest for 75% of cases and the other 25% are diagnosed by meeting the criteria. Treatments are for each individual symptom or problem. For example seizures are treated similar to any other person with seizures. It is 5% hereditary but mostly sporatic.

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Question?: Rett Syndrome In Boys

Betty asks…

Supplemental services for Special education Speech , OT, APE?

After 2 1/2 very unsuccessful years of the local school district instructing my special needs child (Autism) and her failing to meet her educational goals, I have decided to not waste anymore time and Homeschool her myself. The down side is that I am being told that if she does not attend their school I will lose all her support services (speech, OT APE) First question is that legal under FAPE? Second question does anyone know of some good materials that I could use to get her services in the above areas I cannot afford private therapy. Moreover, feel stuck….? She is a bright child but needs to be taught to her needs and her method of learning not theirs….

admin answers:

Hello…I went through a similar situation. My 3 y/o daughter has Rett Syndrome (Autistic Spectrum Disorder) and she is considered somewhat vulnerable to illness increasing her seizures so decided to hold off on putting her in school. They had no problem with this and had her services come into the home (continued with infant program) and was just written into her IEP. In you daughter’s case it seems like the school program is just not a good fit for her. Is she in ABA? Her IEP needs to be written in a way that WILL teach according to her needs. Has your daughter been tested for Rett Syndrome? I always ask when I seen a girl labeled as autistic because RS is commonly misdiagnosed as autism or CP and is a girl disorder, while autism is a boy disorder. There are ways of teaching my daughter that are different from autistic kids (she is highly social and very gentle) so maybe your daughter doesn’t fit in with other autistic methods of teaching.

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Question?: Autism Symptoms In 3 Year Old

William asks…

What Diseases could these symptoms be from?

My Girlfriend’s 2nd cousins. Here is the background. She had birth to 2 boys. The younger of the two passed away at about the age of 3 months. Autopsy results have only concluded heart and Kidney failure, even from specialists. The older brother is now 2 years old. He has similar symptoms but appears to have them less severe. One original Diagnosis was Bruton’s Disease which is an immune deficiency condition but this was later dismissed. He is very limited in his speech and can not walk on his own but has recently been able to stand with the help of an object. He also suffers from seizures but medication has helped. In appearance he seems to be normal and shows no obvious signs of retardation. He has seen specialists and his younger brother has been autopsied and studied by specialists but there is still no diagnosis. Thought I might give this a try.

admin answers:

Have they considered autism?

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Question?: Autism Signs In Infants

Helen asks…

Should I not get my kids the mmr vaccine?

I keep hearing about the correlation between autism and the mmr vaccine. I would never forgive myself if I got my child vaccinated and the next day he became autisstic. My baby boy is so cute, I would be devastated if this happened to him.

Do you think it’s a good idea to skip the mmr vaccine?

admin answers:

I’ll tell you one story which shouldn’t sway you one way or the other since it doesn’t amount to a scientific study.

When my son was born, my neighbor threw two baby showers, one for him and the other for a friend. The friend suggested that we each care for the two babies on occasion, so we can have time off to do other things. Our babies were born about a week apart. Hers was a white haired tiny girl. My boy was also tiny.

After the girl’s first (I think DPT) shot, the girl began to have seizures. She had severe seizures and despite all of the available medical care, it was pronounced that she would slowly lose functions and die. I think the parents got to watch their daughter seizure her way to death over a four year period. Is there anything worse?

My son was tiny and the mountain nurses kept delaying his shots due to scheduling problems. He finally got his shots maybe a month and a half late which means that he got them when he was the right size. There was no dosing based on weight. I don’t know that it matters but it sure was scary getting shots without knowing what harmed that little girl. At the time, there were hot batches of shots that had problems and the shot was changed to DTaP.

So, you may want to review the signs of autism first and make sure your son has reached certain connectivity milestones such as making eye contact before getting the shots. You also want to know the infant death rate and hospitalization costs for measles, mumps and rubella.

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Question?: Rett Syndrome Treatment

Chris asks…

Do you know about Rett Syndrome???

http://www.rettsyndrome.org

admin answers:

Yes, my 3 year old daughter has it. It is the worst thing that could ever happen to your child. One day she is normal, and the next she can’t talk, stops crawling, won’t make eye contact, has seizures, can’t take in enough calories to maintain a healthy weight, etc. But a few weeks ago researchers reversed RS in mice…a “cure” or treatment is not far off. There is also info here: www.rsrf.org.

Thanks for posting and raising awareness about this horrible condition.

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Question?: Rett Syndrome

James asks…

Im doing a paper on Rett Syndrome and would like to ask some questions.?

1.) How does the problem with the DNA affect the function of the cell?
2.) How is protein synthesis affected?
3.) What symptoms do the victims of the disorder experience?

I am looking to interview someone that knows someone with Rett Syndrome.

Thank you.

admin answers:

1) The MeCP2 gene essentially “shuts off” the cell, after it has done it’s job. With RS, the mutation doesn’t allow this to happen.

2) I started to type this out, but it’s much more informative here:

http://www.rettsyndrome.info/rettcause.html

This will explain it in great detail.

3) Girls with Rett Syndrome often present with repetitive hand movements, which is often called the “hallmark” of RS. My daughter repeatedly “knocks” on one hand with the other.

Most develop normally for the first 6-18 months of life, then begin regressing. Many of them have seizures, and are unable to walk (though, some can). They lose the ability to purposely use their hands, and require care in all areas of life.

I’m going to link my daughter’s video. It gives information about RS. At the end, is our email address. If you still need to interview someone, feel free to send an email.

They changed the music on her video 🙁 However, it’s still useful.
Http://www.youtube.com/watch?v=7S2k2QTMqm4

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Question?: Autism Symptoms In Infants

Jenny asks…

If I had Spinal Meningitis Haemophilus Influenzae type B when I was an infant do I have anythin to worry about?

When I was around 18 months I had Spinal Meningitiss Haemophilus influenzae type B. They told my mother that I could possibly suffer from hearing and/or vision loss from the antibiotics used in during my treatment. I am now 22 years old and have not encountered any problems regarding this matter. The spinal meningitis I had was in fact bacterial. I was more just wondering if and when these hearing and/or vision loss could take place, if ever.

admin answers:

Meningitis causes brain damage and with that come loss of hearing and loss of sight which are actually quite minor side effects from meningitis when you consider all the other problems that people have once they have over come the disease.
If you were going to lose your hearing or sight it happens in hospital while you are being treated and not years down the track so to answer your question you are never going to be deaf or blind unless you end up with another illness that could cause these things.

Im am very happy you survived un like so many thousand of other people who don’t and if they do there left with very serious illnesses including blindness, deafness, seizures, autism, cerebral palsy, loss of limbs, loss of Speech, inability to walk and in some cases even move.
The list goes on and on.
You should be very happy and proud of yourself that you are okay and thank you mum everyday because it was her the noticed the symptoms and got you the treatment that saved your life.

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Question?: What Is Autism Caused By

Lizzie asks…

Can autism cause a child to go brain dead?

A man at my church cornered me and asked for money, saying he has a five-year old daughter with autism who will go brain dead if she doesn’t get medicine. I know autism is a serious illness, but I’ve never heard of this type of damage occurring. Anyone with some knowledge able to answer if this man is lying to me?

admin answers:

I’m pretty sure not. Autism, in my experience, affects development rather than medical issues. Though changes in diet can help, along with some therapies which can be expensive and are said to work best when started as soon as possible, I’ve never heard of it to cause medical damage (other than seizures, in some cases, but I’ve heard that’s typically around puberty). I have been working with people with autism and studying autism since I was five (due to my little brother) and have never heard of this. If it were true, it would be sudden, not something that one would have warning for. If you’re sure it was autism, then I’m 99.9% sure he just made it up. It’s not even as much an illness as just a need to be taught and/or interacted with differently. Hope this helps!

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Question?: Rett Syndrome Treatment

Lizzie asks…

pedigree showing transmission of rett syndrome?

admin answers:

Rett syndrome is a rare neurodevelopmental disorder that occurs almost exclusively in females but can occur rarely in males.

Infants and children develop normally until about 7 to 18 months of age, when they may begin to lose previously acquired skills. Other symptoms include slowing of head growth; development of distinctive, uncontrolled hand movements, such as hand clapping, rubbing, or “wringing”; and impaired control of voluntary movements required for coordination of walking; autistic-like behaviors; breathing irregularities; difficulty eating and swallowing; slowing of growth, and seizures.

There is no cure; treatment is symptomatic.

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Question?: Autism Signs In Children

Sharon asks…

What are the sign of a child getting or in autism?

I am worried about my nephew and my parents told me when i was a child i had autism but i somehow out grew it.

What are the signs of autism?

admin answers:

My kid started out with seizures (much as the same way I started out in life), then 4 years later or so he was diagnosed with autism.

I feel seizures do something to the brain. I refuse to beleive this is a epidemic. Autism I feel is a ketch all, adhd is, or I have read and been told by a “professional” is in the autism range.

No two autistic people are the same, and not just children have it. Rumor out that bill gates even has a touch of it…..

ADD/ADHD, turrets (sp),schizophrinia,bi polar (mood disorder),depression, anxiety, seizures,learning problems gosh there are several more. The doctor wrote them down for me, but these are the things we deal with in this house, so easy to remember…….

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