I have written this way back in first to 2nd quarter of 2012 in our quest for a private school that have the benefits of being with neuro-typical students housed in the same building. In northern NJ, many of them or shall I say, almost all of them, the private schools do not have a mixture of neuro-typical and students with disabilities. I do not like this set-up because we are not living in a segregated world just like the stark experiences of Blacks and Whites. Students with disabilities have to be incorporated or included in this world of ours. Of course, there are parents who have different views but all we want is what is best for our children.
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We have been looking for a private school for AX and so far, we have seen three of them within the county. We are looking for a school that somehow mirrors what he has in the public school and that is, surrounded by neuro-typical children. I know I would not find one but still I put aside the doubts and hope that there is something in the private schools that AX may be able to fit in. As expected, the private schools we visited are not suited for him although one has humane touch in it but enriching the mind is far from their goals. I was told that all schools know that their children will not reach or go to college. I am not saying that going to college is the ultimate goal. I just want AX to enjoy what other kids of his age are enjoying. In this coming school year, we will take AX back to his school. I hope for the best.
The South Bergen Jointure Commission (SBJC) in Lodi is located in front of a nunnery and beside a small cemetery perhaps, for the nuns. The assistant principal is knowledgeable and explained to us their mission/services. SBJC houses students with autism and children with multiple disabilities until age 21. It is a pretty neat place but very empty. It has more classrooms and staffs than students studying there. I got alarmed with this ratio. The Math room, computer room, PE rooms were vacant. The computer teacher was busy poking his cellphone and immediately hid it the moment he saw us coming. There were no students inside. The Math room is quite neat since the textbooks and exercise books are hardly untouched. We saw some students who were the ages of AX and they are probably Jewish. The students went in front of the nunnery building where there is a gazebo and well-manicured grass/lawn. The scene reminds me of the movie, Shutter Island, when Leonardo went to the mental hospital to do some investigation. He and his colleague passed by the widespread beautiful lawn where the mentally-ill patients are busy doing their businesses.
The second private school we visited was Phoenix Center in Nutley, NJ. It was really a pain to go here from our place just like the third private school that I will mention later. It was raining heavily on the day of our visit. The drive in Garden State Parkway was like visiting Hades and I had to make sure to read every exit. It was hard to find a parking space when I finally located the school. I saw the front of the school and parked in front just like all the other cars of parents or their helpers taking the kids to school. Many arrived late due to the inclement weather. The front office has this stern lady whose voice reminds me of the lead actress in 101 Dalmatians. The case manager or the person-in-charge arrived late and somehow immediately showed us the classrooms. The children with disabilities were mostly young. It was nice to see that set-up and any parents would immediately fall to help and still aim for a better future. There are also classrooms with children who are restrained. One child was far away from his peers and was with his male assistant. We were told that the child would be overwhelmed when he is with the group so he was seated within a significant distance from the rest just like he has leprosy. On another side note, the building is very suffocating. Its windows are all closed. If I am not mistaken, the gym is underground and there is another level below that they are using. Actually, my head hurt during the tour.
Our third private school is in Montclair, NJ. The school is called Sawtelle Learning Center. It is somehow affiliated with YCS. I view children with autism no matter how wild, how disconnect, how timid, how muted, how talkative as children who can still think. During and after visiting Sawtelle, all my fears of what other people are doing to children with autism came into light. You see, a floor below the main office is a room where we saw a kid blocked in a corner with a table and two female adults were somehow restraining him. The poor black boy was being hurt. The older female grabbed the boy's head and tilted it backwards. The boy was fighting back and shouting. All the while that this was happening I noticed that the lights were off. The moment our backs were facing them the lights were on. It was hard to see how a skimpy kid is restrained by two female adults. It is just not right. In one classroom, the teen boy was wimping and we asked his age. He managed to answer. The principal said, he is just acting up (in reference to his wimping). One big boy in his teenage years was on his seat and on his desk was a piece of paper. He is tasked to do adding single digits just like Kindergarteners. I can not believe how low these people in the school think of these kids but it is really disheartening to see the kids who are rocking on their seats and looking blankly on the walls. The staff members are adequate in number, I think. It is just that when we went there, it seems like the kids were all over. Many are not attended adequately. A big boy in his teens was on the floor for quite some time and the 2 teachers are on their nerves most likely because the visitors (us and another parent) were there. It was disheartening to see him in that state and all the others are looking at us like they have seen for the first time some people outside of the building.
We went to a fourth school and I believe, it is Washington South Program in Paramus. This is a public school. If I am not mistaken, this building is like a hospital from the outside and it is surrounded by different government offices. Once we got here, the place is like entering a hospital for the mentally-ill people! In one hallway, we passed by a boy who did not want to go with the paraprofessional so he dropped himself to the floor. The paraprofessional was having a hard time dealing with the student who was about less than 10 years of age. I noticed that in one classroom with young kids like 5 years old, the atmosphere was good. It seems like the personnel believe that these students with disabilities can still be rescued or helped. That is always the case in many public and private schools I have been into. However, as the students age, the desire to educate them (with modifications or significant modifications) just like they are typical students, lessen. It is just sad. The school has a big gym and also an OT kind of room. I think, AX was with me when we were seeing this school as I remember he wanted to play with some of the furniture/toys in the OT room. The lady in-charge is accommodating but somehow reserved. If I remember correctly, many of the students there stay for good and will not or have not been returned to their respective districts.
Tuesday, January 28, 2014
Starting B6 and Magnesium
Some days are noisy and some days are just whispers that you could hardly decipher what is being told. Have been away from writing as I just put my thoughts in my e-mail and let things pile up there. Many times, it is the best so people will not misconstrue.
Going two weeks now, we started B6 and Mg on AX and somehow, we are starting to see some differences or changes in his behavior. We give him 100 mg of B6 and 250 mg of Mg per day. He is much, much calmer and has less of the mannerism he does on his hands/fingers all the time. He rarely does his "antics" of doing whatever things over and over and over again. A good example of this is open and close the book several times that you would be affected as he does not stop. He stopped things @ his own pace and when we intervened, it means protest on his part. Since last, last week, he does not pluck his eyebrows and eyelashes so these hairs are growing back again. The changes we see in him make us happy and calm.
He is still not yet a communicator that you would expect for a boy of his age. We keep on hoping though and that is what matters. We do not medicate him and this is the least of the things we have on our minds in order to help him.
AX is almost 12.5 years of age and his body and voice had changed. He is taller @ 5 feet and 1 inch and thinner compared to years before of being chubby. He has undergone puberty faster than I anticipated it. I think, I started noticing body changes when he turned 11 years old. It is still young age to enter puberty though I know adolescence period is around the corner.
He likes Caucasian girls or shall I say, he prefers them. He likes Katy Perry, Pink, Lady Gaga and some of the songs of Adele. He listens to Get Lucky by Daft Punk and Wrecking Ball of a young performer.
He likes going to coolmath website and keeps on typing on google.com for words he does not know or for things or words he likes to search or know more about. He uses the images section of google.com to help him understand something. He plays Minecraft together with his brother, sister and father. This is his current top favorite thing to do. Hence, he keeps asking for the tablet.
He eats more fruits like strawberry, banana, apple, grape, orange, melon, watermelon, blueberry and mango. I give him and his brother their morning fruits on the plate before they eat their rice, hotdog and egg. The egg is usually mixed with mixed vegetables or potatoes or tomatoes and onion. He gets less to nothing of sugary foods and I make sure, he does not indulge. I would rather throw the ice cream than have him consume it all. The kids' viand usually have vegetables even though the second boy complains a bit. AX eats the vegetables with zest.
We have volunteered him to be part of a research study @ Albert Einstein Medical Center in Bronx. It started last 12/2013 and this 2/2014, we will go back there again.
As usual, we are still sparring with the school in terms of placement. The school wants to put him in MD and remove him from his present LLD. I do not think, problems with school will ever be gone and remember the people here should know better but they want to segregate students with disabilities from the general population. You can not tell me differently as this is the 3rd state we have lived in and we have the same problems or issues with the schools. I will relate more on this in another post.
Going two weeks now, we started B6 and Mg on AX and somehow, we are starting to see some differences or changes in his behavior. We give him 100 mg of B6 and 250 mg of Mg per day. He is much, much calmer and has less of the mannerism he does on his hands/fingers all the time. He rarely does his "antics" of doing whatever things over and over and over again. A good example of this is open and close the book several times that you would be affected as he does not stop. He stopped things @ his own pace and when we intervened, it means protest on his part. Since last, last week, he does not pluck his eyebrows and eyelashes so these hairs are growing back again. The changes we see in him make us happy and calm.
He is still not yet a communicator that you would expect for a boy of his age. We keep on hoping though and that is what matters. We do not medicate him and this is the least of the things we have on our minds in order to help him.
AX is almost 12.5 years of age and his body and voice had changed. He is taller @ 5 feet and 1 inch and thinner compared to years before of being chubby. He has undergone puberty faster than I anticipated it. I think, I started noticing body changes when he turned 11 years old. It is still young age to enter puberty though I know adolescence period is around the corner.
He likes Caucasian girls or shall I say, he prefers them. He likes Katy Perry, Pink, Lady Gaga and some of the songs of Adele. He listens to Get Lucky by Daft Punk and Wrecking Ball of a young performer.
He likes going to coolmath website and keeps on typing on google.com for words he does not know or for things or words he likes to search or know more about. He uses the images section of google.com to help him understand something. He plays Minecraft together with his brother, sister and father. This is his current top favorite thing to do. Hence, he keeps asking for the tablet.
He eats more fruits like strawberry, banana, apple, grape, orange, melon, watermelon, blueberry and mango. I give him and his brother their morning fruits on the plate before they eat their rice, hotdog and egg. The egg is usually mixed with mixed vegetables or potatoes or tomatoes and onion. He gets less to nothing of sugary foods and I make sure, he does not indulge. I would rather throw the ice cream than have him consume it all. The kids' viand usually have vegetables even though the second boy complains a bit. AX eats the vegetables with zest.
We have volunteered him to be part of a research study @ Albert Einstein Medical Center in Bronx. It started last 12/2013 and this 2/2014, we will go back there again.
As usual, we are still sparring with the school in terms of placement. The school wants to put him in MD and remove him from his present LLD. I do not think, problems with school will ever be gone and remember the people here should know better but they want to segregate students with disabilities from the general population. You can not tell me differently as this is the 3rd state we have lived in and we have the same problems or issues with the schools. I will relate more on this in another post.
Friday, May 25, 2012
Fetal Gene Abnormalities May Cause Autism
Source: http://www.ucsdguardian.org/component/k2/item/25751-fetal-gene-abnormalities-may-cause-autism
Wednesday May 23, 2012 - 10:35PM
Courchesne and his team used frozen brain tissue from the prefrontal cortex of autistic children, aged two to four, and control children who are not autistic, who had passed away to analyze brain tissue gene expression. The prefrontal cortex is the part of the brain responsible for cognitive communication and social development, and its development is abnormal in autistic children. They found that a large number of genes that control the number of brain cells were expressed incorrectly.
Many studies have shown that brain cells in autistic individuals may be too small and undeveloped. After cells are born, they differentiate into specific types of brain cells that are in charge of the different types of information processing. The abnormalities in these cells occur in the second and third trimester of pregnancy, the time span during which most brain cells are created.
“This evidence indicates that biological abnormalities in autism began in the prenatal stage and that the biological abnormalities of autism are complex,” Courchesne said. “They involve a number of large networks or systems in genes and then the regulation of those systems with too much or too little gene activity in those genes is responsible.”
They found evidence that many of the abnormally expressed genes correctly copied DNA during cell divisions. This suggests that the DNA defects associated with autism may not be detected while cells are dividing during prenatal cell development.
“Those DNA defects may creep into new cells that are being generated during prenatal development,” Courchesne said. “Those DNA defects may alter the functional integrity of brain cells.”
The first set of genes that were functionally abnormal was the sets of genes that regulate the number of brain cells. Courchesne said this may explain why many people with autism have an excess number of brain cells in the prefrontal area, and why the abnormal activity involved in DNA checking and correction may explain why some brain cells do not function correctly.
The team then found abnormal activity of genes in the blocks of frontal tissue that regulate the organizational patterning of the brain. They found abnormal activity in the genes that regulate the further development of cells. Courchesne said they think this could explain why autism affects cognitive functions.
About a decade ago, it was discovered that at young ages, the majority of autistic individuals have a brain that is too big. As the child develops and matures, there appears to be a loss of brain tissue. Courchesne and his team found evidence that there may be a growing loss of neurons in autistic individuals. The normal spacing of neurons begins to become more irregular, suggesting irregular locations of loss due to loss of brain tissue.
The team then looked at adults with autism and found different signatures of gene activity that point to loss of cells and remodeling of brain conditions.
“What we don’t know is whether those changes are improving connections or removing maladaptation connections, we just don’t know,” Courchesne said. “But we do know there’s a different profile that suggests some kind of remodeling. And whether it’s ultimately beneficial or not remains for future studies to figure out.”
Another part of their study discovered evidence that would explain why autism is genetically different in every individual with autism. There was overlap within the network in the brain to other individuals with autism, but it was incomplete. Each person has his own set of genes within a network that were the most effective. Then another person has a somewhat overlapping, but different set of genes within the same network.
These genetic networks with abnormalities are the cause of autism. It can be confusing to understand the genes involved in autism because each person with autism has a different set of genes within the same network.
“That’s probably why it’s so hard to understand what’s been so hard to get at the genetic root basis of autism,” Courchesne said.
Wednesday May 23, 2012 - 10:35PM
Fetal Gene Abnormalities May Cause Autism
Written by Rebecca Horwitz Researchers have discovered genetic pathways in autistic brains that affect its development and offer a possible explanation for how the disorder develops. Director of the Autism Center of Excellence at the UCSD School of Medicine Eric Courchesne led the study, published March 23 in PLoS Genetics. The study found that several of the genetic networks that play a role in the management of early brain development function abnormally in the frontal cortex of an autistic brain.
Courchesne and his team used frozen brain tissue from the prefrontal cortex of autistic children, aged two to four, and control children who are not autistic, who had passed away to analyze brain tissue gene expression. The prefrontal cortex is the part of the brain responsible for cognitive communication and social development, and its development is abnormal in autistic children. They found that a large number of genes that control the number of brain cells were expressed incorrectly.
Many studies have shown that brain cells in autistic individuals may be too small and undeveloped. After cells are born, they differentiate into specific types of brain cells that are in charge of the different types of information processing. The abnormalities in these cells occur in the second and third trimester of pregnancy, the time span during which most brain cells are created.
“This evidence indicates that biological abnormalities in autism began in the prenatal stage and that the biological abnormalities of autism are complex,” Courchesne said. “They involve a number of large networks or systems in genes and then the regulation of those systems with too much or too little gene activity in those genes is responsible.”
They found evidence that many of the abnormally expressed genes correctly copied DNA during cell divisions. This suggests that the DNA defects associated with autism may not be detected while cells are dividing during prenatal cell development.
“Those DNA defects may creep into new cells that are being generated during prenatal development,” Courchesne said. “Those DNA defects may alter the functional integrity of brain cells.”
The first set of genes that were functionally abnormal was the sets of genes that regulate the number of brain cells. Courchesne said this may explain why many people with autism have an excess number of brain cells in the prefrontal area, and why the abnormal activity involved in DNA checking and correction may explain why some brain cells do not function correctly.
The team then found abnormal activity of genes in the blocks of frontal tissue that regulate the organizational patterning of the brain. They found abnormal activity in the genes that regulate the further development of cells. Courchesne said they think this could explain why autism affects cognitive functions.
About a decade ago, it was discovered that at young ages, the majority of autistic individuals have a brain that is too big. As the child develops and matures, there appears to be a loss of brain tissue. Courchesne and his team found evidence that there may be a growing loss of neurons in autistic individuals. The normal spacing of neurons begins to become more irregular, suggesting irregular locations of loss due to loss of brain tissue.
The team then looked at adults with autism and found different signatures of gene activity that point to loss of cells and remodeling of brain conditions.
“What we don’t know is whether those changes are improving connections or removing maladaptation connections, we just don’t know,” Courchesne said. “But we do know there’s a different profile that suggests some kind of remodeling. And whether it’s ultimately beneficial or not remains for future studies to figure out.”
Another part of their study discovered evidence that would explain why autism is genetically different in every individual with autism. There was overlap within the network in the brain to other individuals with autism, but it was incomplete. Each person has his own set of genes within a network that were the most effective. Then another person has a somewhat overlapping, but different set of genes within the same network.
These genetic networks with abnormalities are the cause of autism. It can be confusing to understand the genes involved in autism because each person with autism has a different set of genes within the same network.
“That’s probably why it’s so hard to understand what’s been so hard to get at the genetic root basis of autism,” Courchesne said.
Published in SCIENCE AND TECHNOLOGY
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Wednesday, April 11, 2012
Nearing the end of the tunnel?
Source: http://www.boston.com/Boston/dailydose/2012/04/could-autism-reversed-with-pill/lk78SvP6Dn9qnR0lc3gvIM/index.html
Could autism be reversed with a pill?
E-mail| Print | Comments (5) 04/11/2012 1:41 PM
What if autism could be reversed with a pill?
A growing body of research in mice and a handful of people is finding that autism is not a degenerative disease like Alzheimer’s, but a changeable condition, like, say, epilepsy that can potentially be controlled.
A study out Wednesday in the journal Neuron found that medication could correct the health and behavior problems of mice with a genetic condition known to lead to autism in people. The drug, which acts on the synapses, or gaps, between brain cells, reversed a vast range of symptoms often associated with autism -- including lack of sociability, physical awkwardness, and hyperactivity.Most surprising, the drug worked on adolescent mice, showing that these symptoms are reversible even after the critical period of early brain development.
“I was thrilled,” said Mark Bear, the MIT neuroscientist who led the research.
Bear helped found a company, Seaside Therapeutics, which is currently studying a similar drug in people with Fragile X, a genetic condition that often leads to autism. The mice had the same genetic change as the people in the study. Roche and Novartis are also studying similar medications, with effectiveness trials due to be completed in about a year.
“I can’t tell you how exciting it is right now, and how anxiously I am awaiting the impact of these clinical trials,” Bear said. “It seems that in Fragile X and maybe other causes of autism there is essentially a metabolic problem.”
The problem in Fragile X, Bear said, seems to be that there are too many proteins being produced in the junctures between brain cells. Flooded with proteins from one brain cell, the receptors at another don’t know which protein to accept, and, essentially, a traffic jam results.
Bear said he was amazed, several years ago, when he realized that a tie-up between brain cells could cause the full range of symptoms found in autism.
“It truly is extraordinary that this receptor seems to give rise to so many aspects of the disease,” he said.
Bear’s isn’t the only research to suggest that autism may be reversible, even beyond childhood.
In a 2007 study in the journal Science (covered in The Globe at the time), Adrian Bird from Edinburgh University reversed symptoms in adult mice with a different genetic glitch -- which leads to another autism-like condition in people, called Rett Syndrome. Using medication to turn back on the gene that is turned off in Rett Syndrome “leads to striking loss of advanced neurological symptoms in both immature and mature adult animals,” Bird’s study concluded.
Last month, another study -- this time in Nature -- found that Rett’s devastating symptoms could be stopped in mice if they got a bone marrow transplant. This suggests that the immune system plays a role in Rett.
Mice with Rett syndrome normally live about weeks, but given a bone marrow transplant from healthy mice, they live much longer -- at least some of them are still alive nearly a year later, said Noel C. Derecki, the research fellow who led the study at the School of Medicine at the University of Virginia.
Derecki, and senior author Jonathan Kipnis, an associate professor at Virginia, said their work suggests that the loss of the MECP2 gene seen in Rett impairs the brain’s ability to “take out the trash.”
“These cells need to be cleaned up, so debris doesn’t build up,” said Derecki, whose grandfather ran a garbage collection business. By reinforcing the immune system with a bone marrow transplant, the researchers restored the mouse brain’s ability to take out the trash.
Again, their conclusion was that autism is likely changeable throughout life -- that the behavior we see in people with autism is due to brain malfunctions but not brain damage.
The next step is to take their research into people, figuring out what kind of treatment will be most helpful. It’s not yet clear either whether the findings in Rett and Fragile X will extend to the roughly 85 percent of those with autism who don’t have an obvious genetic glitch.
Bear says that the findings of reversibility in older animals is good news for drug testing, because it’s much easier to study drugs on adults than children.
Also, he said, a drug alone may not be enough.
Mice given the drug for four months improved far more than those given it for just a month -- suggesting, he said, that the brain needs to adapt once its biological problems have been resolved.
In people, Bear said, “it’s not just the drug that’s going to lift the veil [of autism], but it’s going to allow the veil to be lifted with appropriate behavioral therapy. And that’s really what we’re aiming for.”
Karen Weintraub can be reached at Karen@KarenWeintraub.com.Sunday, April 1, 2012
Chromosome 16
Source: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/03/30/MNPU1NS5LL.DTL&type=science
Read more: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/03/29/BAPU1NS5LL.DTL#ixzz1qpeeUA4U
Autism: UCSF zeroes in on rare chromosome defect
Friday, March 30, 2012
Christopher Mahar, a 14-year-old from Oregon whose autism may be caused by a rare chromosome defect, prepares for a scan at UCSF to follow his brain activity.
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When her son was diagnosed with a rare chromosome defect three years ago, it was something of a relief for Theresa Mahar.
Finally, she had an explanation. Christopher, now 14, had obvious developmental delays and intellectual disabilities. He had behavior problems and struggled in school. He'd been assigned so many diagnoses over the years - almost all of them related to autism - that it was sometimes hard to keep up.
Then a genetic test revealed the defect to chromosome 16 - one of the 23 chromosomes that make up every person's DNA - and it explained, perhaps, the cause of Christopher's autism.
"It's something to hold on to," Theresa Mahar said. "It's something to blame."
Mahar and her family came to San Francisco from Hillsboro, Ore., this week to participate in an unusual study at UCSF - to map in great detail the brains of people who have a defect to chromosome 16.
The study is one of the first in which autism researchers are narrowing their focus into one of the few known causes of the disorder. That's important, scientists say, because autism is such a difficult condition to define - the symptoms can vary widely from patient to patient, and the causes are often impossible to determine.
Different mechanisms
Autism may be a collection of similar conditions, rather than one single disorder, researchers say. That means that studying patients with autism as it's now defined often produces mixed results - the brain scan of a child with one genetic cause of autism may look very different from the scan of an autistic child with no genetic cause.
"It may be that there are different mechanisms depending on the underlying biology of autism," said Dr. Elliott Sherr, who heads the study at UCSF. "If you study a group and they have the same biology and underlying genetics, in theory that should clean things up a bit."
The study at UCSF is part of a five-center clinical trial funded by the private Simons Foundation. Researchers plan to study at least 200 volunteers with the chromosome 16 defect.
Both Christopher and his father, Robert Mahar, have the same defect. In their case, a tiny section of the chromosome known as the 16p11.2 segment is duplicated. Robert Mahar is not diagnosed with autism, but he struggled in school and now wonders if he had learning disabilities related to chromosome 16.
Scientists were able to identify the connection between the specific chromosome 16 defects and autism using relatively new supersensitive genetic testing tools. Chromosome 16 defects are thought to cause about 1 percent of all cases of autism in the United States, affecting roughly 30,000 children.
On Wednesday and Thursday this week, both Christopher and Robert Mahar had a magnetic resonance imaging (MRI) scan to map the structure of their brains. They also had a magnetoencephalograph (MEG) scan, which follows brain activity and lets scientists see what parts of the brain "light up" when patients are doing certain tasks or thinking about specific topics.
Seeking treatment clues
For example, one problem often associated with autism is an inability to tell faces apart. So Christopher and his father spent several minutes in the MEG scanner looking at pictures of faces while doctors studied their brain activity. The results will be compared with scans of people without the chromosome defect.
Sherr said he hopes the collection of scans from similar patients will paint a clear picture of what happens in the brains of people with this specific defect. Then, scientists can use that information to get a better understanding of what might be causing autism in those patients - and better yet, how it might be treated.
For now, few standard treatments exist for autism beyond behavioral therapy. Some drugs work, but not for everyone, and often not very well. Even the behavioral therapy could be better tailored to the individual patient if doctors better understood what was causing the problem, said Dr. Linda Lotspeich, a psychiatrist with the Autism and Developmental Disorders Clinic at Lucile Packard Children's Hospital at Stanford.
"Those targeted treatments could be more sophisticated behavioral treatments than we currently have, and they could be biological treatments," Lotspeich said.
The Mahars said they don't expect the current research to help their son immediately. It's been frustrating trying to get help for Christopher, Theresa Mahar said. Even finding a doctor who has heard of the chromosome 16 defect has been tough.
Sitting in a conference room at the end of the day Wednesday, the Mahars were exhausted. Christopher and Robert Mahar had been going through tests all morning and afternoon, and Theresa Mahar and the couple's daughter, Caitlin, were stuck at the hospital.
Helping other children
When his last psychiatric evaluation was done, Christopher begged for a toy from the scientists and asked if the family could go to the zoo. Maybe on another trip, Theresa Mahar said - they still had another day of testing before going home.
She said she understands that Christopher may never directly benefit from the research being done now, and Robert Mahar said the goal is to "figure out something for other kids down the road."
"But for my part, participating in this research is being selfish," Theresa Mahar said. "It's about how we can help my son."
Details on disorder
For more information about the chromosome 16 and autism research at UCSF, including how to volunteer for the study, go to links.sfgate.com/ZLIP.
Erin Allday is a San Francisco Chronicle staff writer. eallday@sfchronicle.com
This article appeared on page A - 1 of the San Francisco Chronicle
Read more: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/03/29/BAPU1NS5LL.DTL#ixzz1qpeeUA4U
Saturday, March 31, 2012
My thoughts about my child with autism
Some of my thoughts that I posted:
We are family who has one child with autism. It is not a smooth life but we learned how to cope with the challenges. Sometimes, there are always the downside due to behavior issues. However, we did not limit our son on what the school can teach. The schools in the US consider students with autism as dumb. They may not say it bluntly but since they can not immediately give answers nor be able to process information as fast as the neuro-typical children, they are always left behind in the curriculum. The parents have to fight this hard battle in order for the child with autism to be educated. We did not leave our son in the hands of the school to learn. If we did, he might be one of those who can not even go beyond Kindergarten level. We never believe in medicating our child just to conform with the etiquette of the society.
The author's purpose is not exactly to lighten up the load of the families who have kids with autism. It tells you that some of these kids with autism can really manage something that neuro-typicals can not. Every child with autism is as normal as the next door typical kid BUT since the society have managed to segregate them without regards to what they can really do, many of the children now with autism will really grow up as adults with autism who will be a burden to society since that is how they have been brought up.
Mr. _______, am glad your daughter is not on the lower end of the spectrum. That is good news. You just need to be patient with her and never lose the hope. Mind you, my spouse hardly knows how to tie shoelaces and buying slip-on shoes solved the problem. Just have to see the flip side. My spouse is not on the spectrum and in fact, a director in a very big bank. There are those little and many things still that hound our son but we have our feet on the ground and really strive for him to comprehend better. Every small things he can do, is an achievement for us (even though we want him to be faster). :))
Mr. _______, oh, where can we find a person like you in the school system? You see, we have been to 3 states and they basically treat children with autism all the same. Just imagine, teaching over and over Kindergarten stuffs when he is in higher grades just because he does not communicate? He talks but hardly communicates. He is too independent without a voice. We have seen classrooms of students with autism especially the ones on the ABA classes that are so barren that the empty space is suffocating us. We try to remind them of the phrase, "the mind is a terrible thing to waste." They respond with we see things in real terms only. In one classroom, the students with autism are just playing in the middle of school hours? There was not a single book in the classroom nor are there any writings on the board. In another classroom, they showed us their students with autism who are using the computers and are navigating in websites. However, they locked them with starfall website (K and 1 stuffs) and they are in 5th grade? We have met so many teachers and they are all fearing that students with autism who are taking the nationwide tests because they will surely flunk? Hence, we are on our toes with the school districts that we have encountered. By the way, his K teacher told me, he can not add one apple and one apple (two drawings of apple) so he can not do addition much more subtraction (We were asking the teacher to give him materials to compute in addition and subtraction). If we have believed the teacher, then our son will be forever dumb (We have to be blunt here because in all the schools we have been, their perception is that students with autism can not go higher in life. Hence, they want to lock them with life skills teaching.) with adding one apple and one apple. By 2nd grade, he is very good in multiplication more than the students of his age and older.
We are family who has one child with autism. It is not a smooth life but we learned how to cope with the challenges. Sometimes, there are always the downside due to behavior issues. However, we did not limit our son on what the school can teach. The schools in the US consider students with autism as dumb. They may not say it bluntly but since they can not immediately give answers nor be able to process information as fast as the neuro-typical children, they are always left behind in the curriculum. The parents have to fight this hard battle in order for the child with autism to be educated. We did not leave our son in the hands of the school to learn. If we did, he might be one of those who can not even go beyond Kindergarten level. We never believe in medicating our child just to conform with the etiquette of the society.
The author's purpose is not exactly to lighten up the load of the families who have kids with autism. It tells you that some of these kids with autism can really manage something that neuro-typicals can not. Every child with autism is as normal as the next door typical kid BUT since the society have managed to segregate them without regards to what they can really do, many of the children now with autism will really grow up as adults with autism who will be a burden to society since that is how they have been brought up.
Mr. _______, am glad your daughter is not on the lower end of the spectrum. That is good news. You just need to be patient with her and never lose the hope. Mind you, my spouse hardly knows how to tie shoelaces and buying slip-on shoes solved the problem. Just have to see the flip side. My spouse is not on the spectrum and in fact, a director in a very big bank. There are those little and many things still that hound our son but we have our feet on the ground and really strive for him to comprehend better. Every small things he can do, is an achievement for us (even though we want him to be faster). :))
Mr. _______, oh, where can we find a person like you in the school system? You see, we have been to 3 states and they basically treat children with autism all the same. Just imagine, teaching over and over Kindergarten stuffs when he is in higher grades just because he does not communicate? He talks but hardly communicates. He is too independent without a voice. We have seen classrooms of students with autism especially the ones on the ABA classes that are so barren that the empty space is suffocating us. We try to remind them of the phrase, "the mind is a terrible thing to waste." They respond with we see things in real terms only. In one classroom, the students with autism are just playing in the middle of school hours? There was not a single book in the classroom nor are there any writings on the board. In another classroom, they showed us their students with autism who are using the computers and are navigating in websites. However, they locked them with starfall website (K and 1 stuffs) and they are in 5th grade? We have met so many teachers and they are all fearing that students with autism who are taking the nationwide tests because they will surely flunk? Hence, we are on our toes with the school districts that we have encountered. By the way, his K teacher told me, he can not add one apple and one apple (two drawings of apple) so he can not do addition much more subtraction (We were asking the teacher to give him materials to compute in addition and subtraction). If we have believed the teacher, then our son will be forever dumb (We have to be blunt here because in all the schools we have been, their perception is that students with autism can not go higher in life. Hence, they want to lock them with life skills teaching.) with adding one apple and one apple. By 2nd grade, he is very good in multiplication more than the students of his age and older.
Sunday, December 4, 2011
Fish OIl and Autism.....taking our chance....
http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-autism-and-other-communication-impairments/
THERAPEUTIC USE OF FISH OIL FOR APRAXIA, AUTISM AND OTHER COMMUNICATION IMPAIRMENTS
The following is basic information about fish oil supplementation for children with speech delays, impairments or multifaceted communication impairments:
What is the best fish oil for my baby or child?
My son Tanner didn't like fish oils but they helped him greatly
The confusion is more the brand names than the formulas. In actuality there really is no such thing as a “children’s fish oil” as fish oil is fish oil. However fish oils can be marketed to appear to be just for children by making cuter bottles, fun flavorings, smaller capsules. In general you will find the “Jr” marketed fish oils to be about twice as expensive because they are typically half dosage for around the same cost.
Most parents squeeze the oil out of the capsule anyway -so if anything a larger capsule would be easier for a child as I don’t know of any preschool children that swallow capsules. The one time you may want to consider paying twice as much for fish oil with the “Jr” marketed fish oil capsules is when you want to teach your older child to swallow the fish oils capsules. In my opinion there never is a reason to pay twice as much for the “Jr” marketed oil in a bottle -cuter bottle or not.
In addition to expense, you probably want to provide your child with at least one regular sized capsule of oil. To put that in perspective if we take the brand ProEFA, one capsule of the regular not the Jr sized capsule is about equivalent to the dosage the FDA approved for infant formula. And as the ProEFA Jr. is an exact half dosage, you would need two capsules of ProEFA Jr. to what would be about equivalent to the dosage of essential fatty acids approved for infant formula. One regular sized capsule of ProEFA is about 1/4 of a teaspoon of fish oil.
Fish oils are also known by the following names
Essential Fatty Acids or EFAs
Polyunsaturated Fatty Acids or PUFAs
Long-Chain Polyunsaturated Fatty Acids or LCPs
Omega 3s or O3
EFAs are naturally in mother’s milk, are added to infant formula and food; today find DHA enriched eggs, milk, butter…even ice cream! In our nonprofit Cherab Foundation we use an essential fatty acid (or EFA) combination that combines the Omega 3s (EPA and DHA) with a small amount of Omega 6 (or GLA)
EFAs are added or used by all ages for health reasons due to extensive research. Mainly we hear about the importance of EFAs for healthy brain and eye development in regards to children but Omega 3 and 6 are essential fatty acids that are essential to the whole body. An essential nutrients means they are essential to/needed by our bodies, but our bodies can’t produce them so we need to consume them, and yet they are virtually lacking in our diets today.
“A simple fish oil supplement may be the key to dramatically unlock the voices of children with speech and language disorders.
That’s the conclusion of a group of scientists who reviewed a study of nineteen youngsters suffering from various speech problems. The children, ranging in age from two years to eight years, were given a fish oil supplement containing a mixture of omega-3 and omega-6 essential fatty acids (EFAs). Speech-language pathologists who monitored the children reported significant improvements within just a few weeks. The improvements were noted not only in the children’s ability to talk, but also in their behavior, ability to focus, and in maintaining eye contact.
Now the scientists, brought together by the Cherab Foundation, a major nonprofit group for children with speech disorders, are calling for a large-scale clinical trial to validate these initial findings.The panel of experts who reviewed the study included scientists from the NIH, Johns Hopkins University, Kennedy Krieger Institute, University of Kansas, and Oxford University, England. They join a growing group of researchers who are heralding the benefits of essential fatty acid supplementation for a wide range of brain-related problems including depression, bipolar disorder, schizophrenia, attention deficit hyperactivity disorder, dyslexia, and even Alzheimer’s disease and autism.”
What dosage has been used in the Cherab Foundation for the past decade with thousands of families?
I will use the following examples with the brand name ProEFA since that’s the formula/dosage that seems to work the best for most of us (Efalex and EyeQ are similar Omega 3/6 formulas that also have good reports) For any brand name of Omega 3/6 formula -you could make the same formula by mixing together fish oil (EPA, DHA) and just a few drops of either primrose or borage seed oil (GLA). Keep in mind in anecdotal feedback done by parents from all over through CHERAB -that pure Omega 3 (including cod liver oil) or pure Omega 6 either showed no results -or very little results in almost all cases. If wanting to use a pure Omega 3 the best reports were from higher EPA formulas like Coromega -but again with the small amount of GLA better results were reported.
When it comes to fish oils brand name isn’t important, all that matters are formula, dosage and quality of the oils. For the person that says they are using or tried using “fish oil” that may or may not be the right formula. What has worked best in our nonprofit for thousands now over a decade is a formula higher in EPA than DHA with a small amount of GLA. Two brands that fit this criteria would be ProEFA by Nordic Naturals manufactured in the US and Eye Q by Equazen manufactured in the UK. Nordic Naturals makes a number of oils…the Omega 369 is the commercial line sold in stores of the same professional line sold by health care professionals (or online fromSpeech411.com ) called ProEFA. ProEFA is slighly cheaper as you get 90 capsules per bottle vs. 60 for around the same price.
Dosage of one (regular not Jr.) capsule a day ProEFA using US testing standards which has worked well for the majority as a basic formula for children of all ages.
- 148 mg EPA
- 99 mg DHA
- 40 mg GLA
Tanner Geng who's been on fish oils since 2 year's old
One capsule of ProEFA (regular not Jr.) which is the dosage listed above is about the dosage of EFAs the FDA approved for infant formula.
Dr. Stordy and Malcolm Nicholl co authored The LCP Solution and my son Tanner’s story is the first one in the book under apraxia “The Lellow Breakthrough“
Malcolm was one of my co authors of the book The Late Talker as well. The LCP Solution or the Omega 3 Connection are both excellent books for general info about why EFAs (or LCPs/PUFAs/…stinky fish oils) are essential to our bodies, have to be consumed, but are virtually lacking in our diets today.
Side effects:
I knew you would be looking for this one!!! Now french fry or doughnut oil, no fear! Honestly when is the last time you looked up side effects for french fry or doughnut oil? Many parents may find it cute to feed their baby that first french fry….but shudder to think of giving their child fish oils. Fish oils have been used for generations by our grandparents and their grandparents for health reasons.
Side effects reported in our group (thousands now over a decade) for Omega 3/6 oils if any would be for the most part temporary mild loose stools or change in behavior which may last about a week.
On the other hand what are the side effects of not enough essential fatty acids? As parents we need to push to have the FDA encourage set minimum dosages of fish oils for children from 1to 5 years old, especially in light of recent rulings by the AAP.
Recently the AAP has approved ADHD diagnosis and ADHD drugs for a child as young as 4 years old. The AAP has also just stated that all children between 9 and 11 years oldwill be tested for cholesterol; some children will be put on a statin drug.
With over 18 thousands studies that validate the health benefits of essential fatty acids from fish, why wouldn’t the FDA approve fish oils which are known to help with focus and cardiovascular health before even thinking of approving drugs with side effects for children as young as preschoolers?
Why is there vitamin E added to the fish oils?
There is a small amount of vitamin E added to fish oil capsules for two reasons
1. To stabilize the fish oil
2. Due to the results of a study that found “There is some concern that a diet rich in fish oil taken for many months may induce a deficiency of vitamin E. People who eat a diet high in fish or who take fish oil supplements may want to consider taking vitamin E supplements.”
Do all fish oils contain vitamin A?
Any oil that comes from the liver of the fish, such as Cod Liver Oil/CLO naturally contains vitamin A. Fish oils not made from the liver of the fish do not contain vitamin A. In general in our group we have found that the cod liver oil is not as effective of a formula. Perhaps because it’s higher typically in the DHA than the EPA and there is no GLA.
I heard we get enough Omega 6 in our diets, so why use a fish oils with Omega 6 added?
For some reason we notice more surges when an Omega 3 formula with a ‘small’ amount of GLA from either primrose or borage seed oil (the Omega 6) is added. One theory as to why is that the GLA has very strong anti inflammatory properties that enables the DHA and EPA to cross the blood brain barrier through the tiny vessels it needs to travel into the brain? Right now I can only report what has worked best and as parents we’ve tried all of the formulas.
How do you get a child to take fish oils?
Some children like the taste of fish oil. The parents need to hide the bottle as the kid will chew the capsules like they are gummy candies! But for many of us the child will either hate or not like the taste of fish oil.
Below are helpful tips on how to get yucky magic fish oil into kids that worked for me when my son was younger. Trust me totally worth the drama! From our one Cherab website
Tanner had tremendous surges on fish oils
My 5 year old apraxic son Tanner is a trooper and takes the ProEFA from a spoon every day. I hold his nose for him, but he doesn’t mind the taste. We started the holding the nose thing when Tanner used to take the efalex, which is very fishy smelling and tasting, and it’s kind of our ritual now.
I rip only half of the protective waxy seal off the top of the ProEFA bottle, and put a pin in the part that is left. When it’s time to give Tanner his ProEFA, I open the top of the bottle, pull out the pin, put a hole in the capsule, put back the pin, and squeeze the oil onto a spoon.
Here are some other things we used to have to do when Tanner took the efalex which he hated. (Efalex is fishier tasting and smelling)
1. We would put just put a drop of fish oil in the middle of the bread for a sandwich and cover with peanut butter, a drop in the middle of a pancake, a drop in the middle of a bowl of spaghetti, etc. if we put too much fish oil, Tanner would not eat the food.
2. Glenn and Tanner and Dakota would each hold a cup filled with a dash of juice. Tanner’s juice was always “spiked” with efalex. Tanner is very competitive and would love a good race. “Ready set Go!” and Glenn would hold the cup to his mouth without drinking and then stop and have all three compare who drank the most. Of course, Tanner was winning! They would keep doing this until Tanner won (which meant he finished the efalex fish oil spiked juice)
3. I used to bribe Tanner with gummy bears that he could have after. Didn’t work as good as the first two. But for a long time we did a combination of number one and number three.
4. Tanner’s older brother started taking the fish oil, and Tanner wants to do what Dakota does.
5. As Tanner got older, at about four, we started calling the fish oil “yucky magic fish oil which helps you talk” and we really made a big deal about how yucky it was, and would “show off” to people how Tanner could take this yucky stuff and eat it right off the spoon. It worked for Tanner!
It was lots of work, but well worth the results. If your child will not take ProEFA, maybe buy some efalex and try that. Compared to efalex, a sock would probably be a treat!
Again, some EFAs are liked by some children-hated by others. With ProEFA – many kids from the Cherab group will just eat it from a spoon, or chew the capsule since borage oil is naturally sweet. I can say that ProEFA does not smell like some of the other EFAs we’ve used. After a year and a half of Tanner hiding behind the couch when it was time to take other fish oils, this was amazing even without all the great breakthroughs he’s had!
And sometimes as Colton demonstrates, it’s “Sooooo easy” to give a child fish oil!
Share this video with your child as Colton could inspire your child to take his fish oil this way too!
Should I put fish oil in my child’s reusable plastic cup?
You don’t want to put fish oil into any type of reusable plastic no matter what type of liquid or food it’s mixed with because the oil will bind to the plastic and you will find it difficult if not impossible to get the smell of fish out of the cup no matter how much you wash it. Think of when you put spaghetti sauce into a plastic Tupperware like container and the container turns orange from the plastic absorbing the pigments from the spaghetti sauce during the wash. While one can deal with an orange container, try to deal with fish oil steam when you open your dishwasher! Most likely you’ll throw any plastic cups away that you put fish oil in. You preferably want to serve fish oil in glass, ceramic, metal (such as on a spoon) and if you use plastic -disposable plastic.
What about flax seed oil?
Flax seed oil or freshly ground flax seeds are an excellent source of the essential omega-3 alpha-linolenic acid (ALA or LNA) which is the quintessential parent member of the omega-3 family of essential fatty acids (EFAs). The body transforms it into EPA and the EPA into DHA.
This transformation is very inefficient (the yield is only about 5%) and is further inhibited by over consumption of omega-6 fatty acids from most vegetable oils or certain disease states. Therefore, it is advisable to independently consume also ready made EPA and DHA from good quality fish of from high quality fish oil supplements. The only other recommended source outside of fish oil would be algae. Some recommended intakes are listed on the introductory lecture on EFAs from the First Conference on Therapy of Verbal Apraxia, July 23-24, 2001, Morristown, NJ.
What is the difference between fish oil in the bottle vs fish oil capsules?
1/2 tsp of fish oil is about the same as 2 capsules of ProEFA. If you use oil from a bottle the shelf life will be around 4 months once opened vs. up to 4 years as with the capsules. Also the oil needs to be refrigerated, the capsules do not. Even if you typically prefer using the oil from the bottle I highly recommend getting some capsules as well for when you travel.
My bottle of fish oil says just one capsule a day. Isn’t that the dosage?
Many -including me -were not aware that only those fish oil formulas used in research are allowed to recommend higher dosages than the standard “one to two capsules” But check out the old Efalex bottles -or if you are from the UK the Eye Q bottles -both of which are used in research…much higher dosages anywhere from 4 to 9 capsules a day are recommended. In our nonprofit most even with preschool children use on average 3 capsules a day. (2 ProEFA and 1 ProEPA which you can get online )
What improvements should I look for when I start my child on fish oils?
Since I receive lots of calls about this -I wanted to list the most common changes in an apraxic or other speech disordered child on EFAs from what I’ve read and heard and seen. Most of the following are for children that were essentially nonverbal previous to supplementation.
1. Increase in babbling or attempts at sounds.
2. Increase in imitation.
Changes also can be looked for in (what you see as positive or negative)
- sleep
- attention
- appetite
- focus
- behavior
- stools
Next will come a breakthrough of something you were probably working on for a bit -so you will be excited but will think “Well -I don’t want to get my hopes up we were working on that for awhile now -maybe it’s just a coincidence” However after the second or third surge in a short period of time -and then another – you are pretty sure things are different and it’s at this point the professionals and the rest of the family and your friends are noticing it too – maybe about two to three weeks now.
OK -the next stage is pure elation and hope -you see the light and no longer feel as desperate and want to share this new information with everyone and anyone. As the months go by and your child continues to progress at a much more rapid rate -you may even start to doubt the original diagnosis -especially if you started EFA supplementation at two -and perhaps the SLP that diagnosed the apraxia who also was at first excited is starting to second guess if the original diagnosis was correct as well.
Unless you have to stop the ProEFA (or other Essential Fatty Acids) and literally have the chance to see the regression of acquired speech and language skills, attempts, and changes in behavior like we did with Tanner (and/or have a chance to again witness the second surge when your child is put back on the EFAs) -that doubt will probably remain somewhere in your mind and in others around your child. So the “I told you that he would start talking when he was ready” comments should be expected of course.
The child on ProEFA or some other EFA formula’s like it no longer fits the criteria of the classic definition of apraxia -and yet doesn’t fit the classic perception of what a late talker is either. The brain responds to multiple stimuli and even if children on fish oil no longer present with the original diagnosis, they will still require appropriate speech therapy. And while most of this information is focused on speech and communication impairments, fish oils are beneficial for numerous conditions from cardiovascular to psychological conditions as they contain the essential fatty acids. With a slightly different formula of fish oils containing high EPA to DHA and an even smaller amount of GLA, the fish oils are also extremely beneficial for those diagnosed with ADHD. There are numerous cases of children that due to the effectiveness of fish oils, were kept off prescribed drugs for ADHD with known serious side effects.
I just started feeding my child essential nutrients (essential fatty acids, essential amino acids and other essential nutrients) and in addition to increase in speech and other improvements, I noticed he is sucking his fingers and chewing on his clothes. Is this a side effect?
There are two main temporary changes changes sometimes reported in the first week or two of supplementation of essential nutrients. The most common temporary change reported is increased “hyperness” While some may view this increase in hyper activity as a negative, some theories are that it’s a sign that neurons that were previously dormant starting firing. It could due to changes in production of neurotransmitters as well. Regardless the reason, this stage typically lasts only about a week or two. Your options during this stage are to wait it out, or lower the dosage a bit and trade improvements for a more docile child. Most choose to wait it out.
Like the “hyper” stage another less frequently reported temporary “side effect” is the child’s sudden interest in chewing or sucking on toys, clothes, fingers etc. When you notice your child all of a sudden chewing on their clothing or sucking their fingers, this could be a late oral exploration stage for some with speech impairments that didn’t go through this important developmental stage fully or at all. We first heard about some speech impaired children going through normal developmental stages such as oral exploration or the “terrible twos” later with essential fatty acids (fish oils. ) , and now we are hearing about this in some cases with essential amino acids and nutrients from food (Nutriiveda ) as well. Based on the parallels reported between fish oils and NV it’s not surprising. Going through developmental stages later rather than never is good. And going through the oral exploration developmental stage is a great as again oral exploration is a normal developmental stage or the “teething” stage is important for developing speech.
You can try other things for him to suck on during this stage. For example when you see him sucking his fingers -you can offer him a natural lollipop..
Essential nutrients such as essential fatty acids. and essential amino acids and nutrients from food are reported to create surges in many areas -receptive, expressive, focus, attention, motor planning, academic etc. In the rare case there is no noticeable benefits essential nutrients still need to be consumed daily for good health as the body is unable to produce essential nutrients.
If the teething really bothers you again can lower the dosage of fish oils or NV a bit and trade improvements. You can also provide more appropriate teething material for your child to chew or suck on. Here are some suggestions. But again these stages don’t tend to last more than a week or two.
Here are two examples of the late oral exploration stage after essential nutrient supplementation
Not even 2 days on NV!!
Hello, All!! My son, Cale, is 2 1/2 and just started Nutriiveda on Wednesday night, so not even 3 days, and we are already seeing results, as early as late Wednesday night/early Thursday morning (seriously, after it only being in him for a few hours!)!!!! I’m impressed, to say the least!!! While we haven’t noticed the possible extra “hyperness” that some see in the first week,
we have noticed that he’s been sucking on his finger a few times and he’s never done that before (not a big deal since he’s improved in so many other areas).
Anyway, he has been able to repeat a three word sentence (never able to do that before), even though the words still follow his normal pattern on dropping off the beginning sound (So, the sentence, “Mommy, jump please” came out “Mommy, ump eez”)…but still amazing! We’ve been trying to get him to repeat TWO word sentences/phrases with no luck up until now, and he repeated a THREE word sentence! Awesome! He was also able to put the “B” sound on “bear” the other day with his therapist, which he’s never been able to put a B on any word except ball, even though we’ve been working on it for ages. He is also trying to say more words and when we correct how he’s saying it (since he’s dropping off the beginning sounds, as usual), he’s much more able to produce a word that sounds more like it should! He also, on his own, said “mommy car” and pointed at my van….a two word phrase on HIS OWN!!! Okay, obviously I’m ecstatic and just wanted to share! I’m so glad we were able to find a way to fit NV into our budget–best thing I’ve ever done for my son!!!
fish oil side effect??
My son started chewing his toys last summer after we started fish oil, he also started drooling for the first time. It didn’t last too long, maybe 2 weeks?? He also started saying some words at the same time!
To me it seemed like his chewing was because he could feel what his mouth was doing. He started trying to lick things too and he always looked surprised.. like he could feel the texture or taste and that it was new to him. With my son it didn’t last long but it was the beginning of he having some words that he could use.
Here is one article on Oral Exploration from Carolina Pediatric Dysphagia
Oral Exploration: The Window to Their World Introduction to Infant Mouthing
Did you ever wonder why babies mouth so much? They are learning about their world! Babies experience the world through their mouths – their mouth is their primary learning tool. Through this a baby will experience size, shape, texture, taste, and temperature; and at the same time will be preparing their mouth for more complicated oral tasks involved with feeding and speech development. Babies also use oral play and exploration as a source of comfort and organization. Whether it is a newborn sucking a nipple or a teething sixmonth- old biting a finger, oral experiences are relaxing and comforting. Babies begin to explore with their mouths even before they are born. Thumb sucking has been noted in utero as early as 16 weeks gestation. At birth the sensation in and around the mouth is the most highly developed. Most children are eager to suck and should enjoy oral and facial touches from caregivers, soft blankets and warm hands. By 4-6 months most babies have now developed greater body control and strength. They are learning to sit without support, reach for and hold toys, and bring toys to their mouths. Now the learning really begins! Everything must be taste-tested and explored, licked and drooled on! It is at this point where concerns about germs or choking are high. But don’t worry, as long as you keep a fairly clean house and monitor what objects are available, there should be no problem. Remember, keeping babies from mouthing and drooling on objects and toys will keep them from learning and being comforted.
Children with medical or developmental difficulties
Children with medical or developmental difficulties may lack these early oral experiences. Children with motor difficulties may not have the motor ability to hold toys or bring them to their mouths, and therefore have limited opportunities for oral exploration. Children who have experienced hospital procedures such as intubation, suctioning, etc. can often develop the idea that the mouth and throat hurts and should be avoided. Similarly, children with reflux who experience discomfort during and after feeding may also associate oral experiences as painful and unpleasant. As parents and caregivers, we need to identify situations or difficulties that may interfere with a child’s abilities to experience their world through oral exploration. By providing pleasurable oral and facial input, oral development can begin to re-shape early learning experiences and set the stage for more positive and earlier experiences with food.
More common questions and answers can be found on our “Getting Started” page.
I’m thinking of also using Nutriiveda/ NV with fish oils. Should I stop fish oils when I first start NV?
If your child has been on fish oils and you are starting NV for therapeutic reasons as well do not stop the fish oils. Fish oils contain the essential fatty acids, NV contains all of the essential amino acids and nutrients from whole foods and as both are essential nutrients they compliment each other. If you have not yet started either, it is recommended to start one and then start the next a month later so you can get a better idea which is doing what. Fish oil surges are in a day to three days -typically a week for first surges. NV surges are typically in a day to three days and results are reported to be a bit more dramatic and in more areas for some reason.
My child is allergic to shellfish. Can I still give him fish oil?
Use high quality fish oils and call the company to verify the source of the DHA and EPA. Here’s a quick answer from Dr. Weil “A shellfish allergy shouldn’t prevent you from safely taking fish oil supplements.”
I’m concerned about mercury from fish consumption for my child. Also I’m pregnant now so should I avoid consuming fish?
There is a two part answer to this. In regard to fish oil supplements the population at large does not know that MeHg (mercury) binds to proteins and therefore it is not of concern in highly purified fish oils. (you can read more in letters I and other members of the Cherab Foundation sent out to the FDA and IOM here) And recent research has found that pregnant mothers who consume fish twice a week have babies that are just “smarter”. This is the conclusion of a recent large study as you can read on the USDA’s Nutrition Evidence Library here “Moderate evidence indicates that increased maternal dietary intake of long chain n-3 polyunsaturated fatty acids (PUFA), in particular docosahexaenoic acid (DHA) from at least two servings of seafood per week, during pregnancy and lactation is associated with increased DHA levels in breast milk and improved infant health outcomes, such as visual acuity and cognitive development.”
Also read “Can Fatty Acids in Breast Milk or Formula Make Kids Smarter?” Two new studies find benefits at 14 months and about 10 years.
“Whether they’re fed by bottle or breast, babies seem to turn out smarter when nourished with healthy fatty acids found in breast milk and some formulas, two new studies indicate.
The studies, done in the United Kingdom and Spain and published online Sept. 19 in the journal Pediatrics, found that higher levels of long-chain polyunsaturated fatty acids (such as DHA, EPA and ALA) were linked to greater mental development in both young and older children.”
One Year Later; A Possible Cure Through Essential Nutrition For Autism, Apraxia Etc.
Links:
“Look Who’s Talking Now: Fish oil capsules help children with speech disorders find their voices ”
The Late Talker book Chapter on fish oils.
History of how our First Apraxia Conference came about
Me and my son Tanner when he was younger
We hope to raise monies for clinical research to validate the importance of Omega 3 and 6 fatty acids Until there is research, share all with your child’s ped -many neurologists today are more knowledgeable about the importance of EFAs even if your pediatrician still has little to share in this area.
While looking into fish oils which contain essential fatty acids, you may also want to explore with your child’s doctoressential amino acids and nutrients through diet as well.We have had incredible success with essential nutrients and there is extensive and growing research on the importance of these essential nutrients. Essential nutrients are needed daily but the body can’t produce them so they need to be consumed in the diet. The problem is many diets today are poor, and add to that compromised metabolic systems. The purest form of supplementation is through food.
Essential fatty acids, essential amino acids and essential nutrients may be confusing…but good news is that we don’t have to understand everything about good nutrition to see it have positive effects!
Email us or provide feedback below if you have any questions or comments!
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Written by Lisa Geng, mother to two boys that were both “late talkers” who are doing great today. President and Founder of the Cherab Foundation, and Co Author of The Late Talker book St Martin’s Press
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