June 1, 2011
Source: Brown University
Computer scientists at Brown University have created software to examine neural circuitry in the human brain. The 2-D neural maps combine visual clarity with a Web-based digital map interface, and users can view 2-D maps together with 3-D images. The program aims to better understand myelinated axons, which have been linked to pathologies such as autism. Results are published in IEEE Transactions on Visualization and Computer Graphics.
The bundles of individual nerves that transmit information from one part of the brain to the other, like fiber-optic cables, are so intricate and so interwoven that they can be difficult to trace through standard imaging techniques. To help, computer science researchers at Brown University have produced 2-D maps of the neural circuitry in the human brain.
“In short, we have developed a new way to make 2-D diagrams that illustrate 3-D connectivity in human brains,” said David Laidlaw, professor of computer science at Brown and corresponding author on the paper published in IEEE Transactions on Visualization and Computer Graphics. “You can see everything here that you can’t really see with the bigger (3-D) images.”
The 2-D neural maps are simplified representations of neural pathways in the brain. These representations are created using a medical imaging protocol that measures the water diffusion within and around nerves of the brain. The sheathing is composed of myelin, a fatty membrane that wraps around axons, the threadlike extensions of neurons that make up nerve fibers.
Medical investigators can use the 2-D neural maps to pinpoint spots where the myelin may be compromised, which could affect the vitality of the neural circuits. That can help identify pathologies, such as autism, that brain scientists increasingly believe manifest themselves in myelinated axons.
Researchers can use the 2-D neural maps to help identify whether the structure or the size of neural bundles differs among individuals and how any differences may relate to performance, skills or other traits. “It’s an anatomical measure,” Laidlaw said. “It’s a tool that we hope will help the field.”
“What you see is what you operate,” said Jianu, the paper’s lead author. “There’s no change in perspective with what you’re working with on the screen.”
Users can export the 2-D brain representations as images and display them in Web browsers using Google Maps. “The advantage of using this mode of distribution is that users don't have to download a large dataset, put it in the right format, and then use a complicated software to try and look at it, but can simply load a webpage,” Jianu explained.
The program is designed to share research. Scientists can use the Web to review brain research in other labs that may be useful to their own work.
Thursday, June 9, 2011
Wednesday, March 2, 2011
Before you start a therapy
When we started our home based therapy program we did not know how it would exactly look like in all details. I also didn't know which challenging obstacles the Rett syndrome would bring us that we had to solve. There was nobody that ever did something like this before and that could help us with advice. We started with a Brain Traingroup led by Keith Pennock and later on with BIBIC. This is a classical NDT therapy program that I still consider as the best one for the Classical Rett syndrome. Before I explain why that is, I like first to summarize preparation steps that are necessary to be done before you start any intensive therapy program.
1. Such a home training program is impossible to do on your own. Therefore you need a big team of people around you. For example: we have two persons for each day (for 5 days a week). They work 3 hours each; on one to one basic. It should be enough but because I like so much to work with Dejana I added 3 hours extra to her daily program. This because 6 intensive hours of daily activity is the optimal need for fighting with all Rett syndrome challenges.
2. People integrated in your team can be students, sport amateurs, relatives, friends or neighbors. Of course you can pay them for their effort in your program, but you don't need to spend as much money as for the high educated professionals. And believe me this people are more motivated and enthusiastic than any professional I have ever met. They perform excellent. And professionals may be asked only for the consult and evaluation from time to time.
3. People that you will choose have to be highly motivated and able to stay in program at least one year. They should be: dedicated, responsible (to come on time), open-minded, flexible and able to take feedback on their performance. And the most important, they have to be aware of the FACT that the condition of Rett syndrome can only improve if you chose correct exercise. Déze zin snap ik niet helemáál.
· Only persons that pass that “psychological” test can become a respectable members of your team.
· Never take family members and friends that will do it for sentimental reasons and never be sentimental in decision to keep somebody that can not do the program in the correct way because it will work against all of you on the end.
4. Of course: the best solution for all of us should be a good special school where the girl can get daily amount of physical activity and movements or correct positioning. But as far as I know there is not ANY school like that in the country where I live. So we had to do it on our own at home. Special education is not yet ready to give that what is necessary for the girls with Rett syndrome. They are not qualified nor paid for this complex task and therefore all the work lies on parents.
5. If you can offer her a home therapy: intensive and individual, you have to choose one existing program and to learn it on your one. You will be the coach of your team. Therefore it is essential to stay in touch with the authors of that program and to discus all questions with them. We are very satisfied with the Neuro-developmental approach. I can recommend 4 of them:
IAPH http://www.iahp.org/Brain-In.203.0.html
BIBIC http://www.bibic.org.uk/
Growing Mind http://www.autism-programs.com/
6. If you don't want to choose one international program, you can ask two/tree local professionals (speech-therapist, physiotherapist and occupational-therapist) to design a program for your daughter and to work on the program with your team. Consultations with professionals can be done once a month. It is cheaper and more effective that way.
7. Therapy for the girls with Rett has to be intensive and daily done otherwise it will not help. Rett syndrome is a very-very serious neurological dysfunction and working on it can be compared with training for the Olympic Games. People that train for a professional sport can NOT make it by 30 minutes a week. They have to train daily. The same: for the girls with Rett syndrome therapy of 30 minutes a week will mean NOTHING for her condition. Rett syndrome cannot be treated with a 30 min of physiotherapy, 30 min of swimming and 30 min of horseback riding each 7 days. That means 6 hours a month!!!!! It is completely useless and the choice is simple: full work or nothing.
8. If you choose for “nothing” your daughter does not have to be lost. She may not do the exercise BUT instead you can make sure she is in a good positioned at least 20 hours a day. It is the only way to safe her from skeletal deformities, bone operations and pain of the general spasticity. Positioning is not difficult to arrange and achieve in this technological time. All you need are good and flexible splints/braces that should be combined in the most effective way for her body. And you also need responsible people that will keep their eyes on her from time to time and correct her position if necessary. That is minimal intervention that each girl with Classical Rett syndrome should get.
9. It is important to have one separate room for her training program. The room has to be large enough for necessary equipment. Equipment that you will possible use is: big gym-ball, swing (to sit, lay or stand), gym-rings hanging on the sailing, walking systems special designed for her problems, stairs or blocks for challenging walking, balance beam, table and 2 long ‘seats’ behind each other.... etc. The most important is the floor: that has to be warm, large and easy to clean (not a carpet) because the most important exercise will be done on the ground in the laying or sitting position. The room has to be friendly decorated so that working in it will be pleasant for the therapists.
- In the same time it has to be as empty as possible with a large closet where you can storage equipment that you do not use at a time.
10. And the last and the most important: You have to believe in yourself, in the power of therapy and in the possibility of your daughter. You have also to realize that it will take time before you can see any result. We have to be extreme patient and persistent. It is not an easy effort. This program will not only encourage your child to change. It will change you and your life as well.
Whatever you decide I wish you a success.
1. Such a home training program is impossible to do on your own. Therefore you need a big team of people around you. For example: we have two persons for each day (for 5 days a week). They work 3 hours each; on one to one basic. It should be enough but because I like so much to work with Dejana I added 3 hours extra to her daily program. This because 6 intensive hours of daily activity is the optimal need for fighting with all Rett syndrome challenges.
2. People integrated in your team can be students, sport amateurs, relatives, friends or neighbors. Of course you can pay them for their effort in your program, but you don't need to spend as much money as for the high educated professionals. And believe me this people are more motivated and enthusiastic than any professional I have ever met. They perform excellent. And professionals may be asked only for the consult and evaluation from time to time.
3. People that you will choose have to be highly motivated and able to stay in program at least one year. They should be: dedicated, responsible (to come on time), open-minded, flexible and able to take feedback on their performance. And the most important, they have to be aware of the FACT that the condition of Rett syndrome can only improve if you chose correct exercise. Déze zin snap ik niet helemáál.
· Only persons that pass that “psychological” test can become a respectable members of your team.
· Never take family members and friends that will do it for sentimental reasons and never be sentimental in decision to keep somebody that can not do the program in the correct way because it will work against all of you on the end.
4. Of course: the best solution for all of us should be a good special school where the girl can get daily amount of physical activity and movements or correct positioning. But as far as I know there is not ANY school like that in the country where I live. So we had to do it on our own at home. Special education is not yet ready to give that what is necessary for the girls with Rett syndrome. They are not qualified nor paid for this complex task and therefore all the work lies on parents.
5. If you can offer her a home therapy: intensive and individual, you have to choose one existing program and to learn it on your one. You will be the coach of your team. Therefore it is essential to stay in touch with the authors of that program and to discus all questions with them. We are very satisfied with the Neuro-developmental approach. I can recommend 4 of them:
IAPH http://www.iahp.org/Brain-In.203.0.html
BIBIC http://www.bibic.org.uk/
Growing Mind http://www.autism-programs.com/
6. If you don't want to choose one international program, you can ask two/tree local professionals (speech-therapist, physiotherapist and occupational-therapist) to design a program for your daughter and to work on the program with your team. Consultations with professionals can be done once a month. It is cheaper and more effective that way.
7. Therapy for the girls with Rett has to be intensive and daily done otherwise it will not help. Rett syndrome is a very-very serious neurological dysfunction and working on it can be compared with training for the Olympic Games. People that train for a professional sport can NOT make it by 30 minutes a week. They have to train daily. The same: for the girls with Rett syndrome therapy of 30 minutes a week will mean NOTHING for her condition. Rett syndrome cannot be treated with a 30 min of physiotherapy, 30 min of swimming and 30 min of horseback riding each 7 days. That means 6 hours a month!!!!! It is completely useless and the choice is simple: full work or nothing.
8. If you choose for “nothing” your daughter does not have to be lost. She may not do the exercise BUT instead you can make sure she is in a good positioned at least 20 hours a day. It is the only way to safe her from skeletal deformities, bone operations and pain of the general spasticity. Positioning is not difficult to arrange and achieve in this technological time. All you need are good and flexible splints/braces that should be combined in the most effective way for her body. And you also need responsible people that will keep their eyes on her from time to time and correct her position if necessary. That is minimal intervention that each girl with Classical Rett syndrome should get.
9. It is important to have one separate room for her training program. The room has to be large enough for necessary equipment. Equipment that you will possible use is: big gym-ball, swing (to sit, lay or stand), gym-rings hanging on the sailing, walking systems special designed for her problems, stairs or blocks for challenging walking, balance beam, table and 2 long ‘seats’ behind each other.... etc. The most important is the floor: that has to be warm, large and easy to clean (not a carpet) because the most important exercise will be done on the ground in the laying or sitting position. The room has to be friendly decorated so that working in it will be pleasant for the therapists.
- In the same time it has to be as empty as possible with a large closet where you can storage equipment that you do not use at a time.
10. And the last and the most important: You have to believe in yourself, in the power of therapy and in the possibility of your daughter. You have also to realize that it will take time before you can see any result. We have to be extreme patient and persistent. It is not an easy effort. This program will not only encourage your child to change. It will change you and your life as well.
Whatever you decide I wish you a success.
Tuesday, March 1, 2011
Useful tips
On the European Conference on Rett Syndrome, held in October 2010 in EDINBURGH Dr. Sarojini Budden (Portland, Oregon) had some tips for parents and caregivers. She has worked with many Rett girls over many years. Her presentation provided the following tips:
- There has been increased identification of reflux, gallstones, and fractures as the reason for pain and discomfort in girls.
- If there is obvious pain around meal time, it may indicate reflux or gallstones. 11% of all girls had gallstones (between 8 and 22 years of age). Girls should have ultrasound scan for gallstones, but, even if this shows negative, parents should pursue a HIDA scan, which can evaluate whether the gallbladder is diseased. Alan Percy, Prof. of Paediatric Neurology at Alabama, USA, confirmed that this is essential, and has been required in a number of cases.
- Standing should be extended to at least 30 minutes to 1 hour daily – beneficial in the fight against scoliosis (together with calcium and vitamin D in the diet), excessive wind, constipation (together with fibre / vegetable diet)
- Sitting - methods of sitting should be explored that could be beneficial to the spine
- Physiotherapy is vital. Daily stretches should maintain the range of movements of the muscles and joints. Local physio should suggest types of stretches and for how long.
- There is incidence of leg length discrepancy, which should be checked, in case correction is required for standing or walking
- Girls have shown potential for improving skills, e.g. hand function
- Siblings reactions are very important
- PLEASE keep talking to the girls
- There has been increased identification of reflux, gallstones, and fractures as the reason for pain and discomfort in girls.
- If there is obvious pain around meal time, it may indicate reflux or gallstones. 11% of all girls had gallstones (between 8 and 22 years of age). Girls should have ultrasound scan for gallstones, but, even if this shows negative, parents should pursue a HIDA scan, which can evaluate whether the gallbladder is diseased. Alan Percy, Prof. of Paediatric Neurology at Alabama, USA, confirmed that this is essential, and has been required in a number of cases.
- Standing should be extended to at least 30 minutes to 1 hour daily – beneficial in the fight against scoliosis (together with calcium and vitamin D in the diet), excessive wind, constipation (together with fibre / vegetable diet)
- Sitting - methods of sitting should be explored that could be beneficial to the spine
- Physiotherapy is vital. Daily stretches should maintain the range of movements of the muscles and joints. Local physio should suggest types of stretches and for how long.
- There is incidence of leg length discrepancy, which should be checked, in case correction is required for standing or walking
- Girls have shown potential for improving skills, e.g. hand function
- Siblings reactions are very important
- PLEASE keep talking to the girls
Saturday, January 8, 2011
Intensive therapy and the brain
Quote from the book about neuroplasticity
"The Brain That Changes Itself" by Norman Doidge
(New York: Viking Press, 2007)
".... For decades, educators ideas have been firmly set that children who struggle with cognitive functioning weaknesses will continue to struggle throughout their lives. The children’s caregivers must give them all the support they need to ensure they make it through school. Learned helplessness is the term used in the fields of education and psychology to describe many children with learning difficulties.
In fact, this learned helplessness does not have to be the case.
Many educators are not even aware of brain plasticity.
In education, the establishment’s common understanding is that the brain is more or less fixed; that is what many of them learned at college or university. Perhaps they have not read the latest information on brain plasticity and neuroscience. As a result, they keep practicing the same instructional remediation methods for children with learning disabilities as though they are the only options available. .... "
".... As well, they do not see that children who fail in school are often dealing with more significant issues with reasoning, memory, auditory processing, visual-perceptual processing, visual-motor integration, and social-perception problems—all cognitive functioning weaknesses—and that these cognitive functions can be improved. Yet Barbara Arrowsmith Young has persisted and her results outstandingly speak for themselves. She is the first neuroplastician with operating schools and licensed programs in the field of education in North America.
This is not to deny that many wonderful minds in education and psychology have provided major insights into learning disabilities and attention disorders. Nevertheless, the notions that the brain can change itself and that cognitive intervention methods can be designed to improve cognitive functioning are revolutionary to many education experts, who refuse to depart from their own entrenched neural pathways. When a dramatic change of thought is presented they become uneasy and often dismissive, preferring to stick to old ways of doing things.... "
".... There is no magic or quick fix for improving cognitive functioning. It is difficult and tiring work for the child with learning and attention disabilities; it takes resilience and diligence to improve. Neuroplasticity does not occur without significant active engagement over a lengthy period. Not surprisingly, some critics use this as a way to dismiss this work. They say, “Why would you make children with learning disabilities work so hard? They are already struggling enough.”
Optimal cognitive functioning remediation for a severe learning disability, and in some cases an accompanying attention disorder, can take three to four years in a full-time school environment. Some of our most remarkable children persistently and repeatedly worked on cognitive exercises in order to achieve their noteworthy accomplishments and become honours students after transition to mainstream classrooms. The Arrowsmith Program’s belief is that nothing is wrong with hard or tiring work if it has an important purpose. This is how many great minds developed breakthroughs in engineering, physics, chemistry, architecture, literature, music, mathematics, medicine, and other disciplines. They spent hours going over ideas and theories. Similar to the body’s physical training, in order for the brain to become efficient at a particular task or behaviour, it must practise it repeatedly. Children with learning disabilities and attention disorders must stimulate and strengthen their brains’ ability to learn with repeated cognitive exercises in order to overcome their neurological weaknesses.... "
Source
http://www.sharpbrains.com/blog/2010/12/08/using-brain-plasticity-to-help-children-with-learning-disabilities/
"The Brain That Changes Itself" by Norman Doidge
(New York: Viking Press, 2007)
".... For decades, educators ideas have been firmly set that children who struggle with cognitive functioning weaknesses will continue to struggle throughout their lives. The children’s caregivers must give them all the support they need to ensure they make it through school. Learned helplessness is the term used in the fields of education and psychology to describe many children with learning difficulties.
In fact, this learned helplessness does not have to be the case.
Many educators are not even aware of brain plasticity.
In education, the establishment’s common understanding is that the brain is more or less fixed; that is what many of them learned at college or university. Perhaps they have not read the latest information on brain plasticity and neuroscience. As a result, they keep practicing the same instructional remediation methods for children with learning disabilities as though they are the only options available. .... "
".... As well, they do not see that children who fail in school are often dealing with more significant issues with reasoning, memory, auditory processing, visual-perceptual processing, visual-motor integration, and social-perception problems—all cognitive functioning weaknesses—and that these cognitive functions can be improved. Yet Barbara Arrowsmith Young has persisted and her results outstandingly speak for themselves. She is the first neuroplastician with operating schools and licensed programs in the field of education in North America.
This is not to deny that many wonderful minds in education and psychology have provided major insights into learning disabilities and attention disorders. Nevertheless, the notions that the brain can change itself and that cognitive intervention methods can be designed to improve cognitive functioning are revolutionary to many education experts, who refuse to depart from their own entrenched neural pathways. When a dramatic change of thought is presented they become uneasy and often dismissive, preferring to stick to old ways of doing things.... "
".... There is no magic or quick fix for improving cognitive functioning. It is difficult and tiring work for the child with learning and attention disabilities; it takes resilience and diligence to improve. Neuroplasticity does not occur without significant active engagement over a lengthy period. Not surprisingly, some critics use this as a way to dismiss this work. They say, “Why would you make children with learning disabilities work so hard? They are already struggling enough.”
Optimal cognitive functioning remediation for a severe learning disability, and in some cases an accompanying attention disorder, can take three to four years in a full-time school environment. Some of our most remarkable children persistently and repeatedly worked on cognitive exercises in order to achieve their noteworthy accomplishments and become honours students after transition to mainstream classrooms. The Arrowsmith Program’s belief is that nothing is wrong with hard or tiring work if it has an important purpose. This is how many great minds developed breakthroughs in engineering, physics, chemistry, architecture, literature, music, mathematics, medicine, and other disciplines. They spent hours going over ideas and theories. Similar to the body’s physical training, in order for the brain to become efficient at a particular task or behaviour, it must practise it repeatedly. Children with learning disabilities and attention disorders must stimulate and strengthen their brains’ ability to learn with repeated cognitive exercises in order to overcome their neurological weaknesses.... "
Source
http://www.sharpbrains.com/blog/2010/12/08/using-brain-plasticity-to-help-children-with-learning-disabilities/
Saturday, December 25, 2010
De Belevenis
This is a special project for special children made by artists. A big tent build as a mobile construction is placed on the sport field near Rotterdam harbor. It will stay there for a few months Than it will be reconstructed and transferred to another town in Holland. This way everyone has the possibility to see it in their own neighborhood. A really special project.
Inside this big tent is placed a fantasy world designed to stimulate our six senses in many different ways. The project is called “De Belevenis” which means The Experience. Every visitor can get their own unique experience depending on his/her individual level of understanding/functioning.
The tent offers 6 large rooms created as a specific world of sensations: Ocean, Sky, Jungle, Arctic, Arabic and Red Surprise. Each of them offers their own special sounds, tactility and visual stimulations in the range: from simple to more complex. Sometimes we have to press a large button and snow begins to fall, or a wall starts to vibrate, or a big elephant head waves with his large ears.... Sometimes we have to open a door and bells start to ring inside, or a small carousel begins to turn around, or a strong aromatic odor comes out. There are big trampolines, large soft tunnels, water beds, and life size tubes with a light show to stand in. In different places you'll find slow and large slide-shows of fish swimming in the ocean, sounds of birds and a misty jungle atmosphere . . . . . A really amazing world of different experiences for our senses. When you get tired of the impressions you can go to a special room with a king-size warm water-bed. Here is a lady who will give you a relaxing massage with aromatic oil as long as you need it.
This project is created only for children with special needs and old people with dementia. The groups were small up to 30 visitors for a day so that everyone has enough time to make discoveries and to take their own experience from it.
Here are some photos to get an idea about “De Belevenis”:
Every year we visit De Belevenis once. This was our third visit.
It was a present from Marijke, our neighbor who plays with Dejana already for 10 years. Every week she comes on Thursday morning for tree hours of exercise. This time she took us to a special event outside. Marleen, another member of our team joint us as well.
I am always curious about changes that Dejana might show in comparison with the year before.
And she surprised us pleasantly. It was the first time that she went from one object to another very curiously and observed them carefully. This is not usual for a child with Rett syndrome. We were very exiting to see that she turned her head and looked around, that she recognized big animal-toys from a distance, smiled and turned her body to go there and touch them. She did it in slow motion but it was very close to a “normal child's” behavior. So nice to see it! Dejana observed her surrounding and could orientate in space all on her own. She did this for a half an hour. Then she got tired and needed a rest. I was very happy with this improvement. It occurred a few times during that day that she was showing clear initiative.
The second surprise happened on the large trampoline. We climbed on it together and let Dejana lay down as years before. Than we helped her to stand up expecting her to fall on this unstable surface, but she didn't. She stood and kept her balance even when we started to jump around her. She really enjoyed herself as well as we did. We jumped for 20 minutes, laughing and singing and Dejana was balancing in the middle proud on herself. It proved again that she likes challenging situations so much that she performs them better then daily actions. I keep on thinking that girls with Rett syndrome don't get enough challenges in their life's even if it absolutely necessary.
And then we came by two clowns. Is was not very busy at “De Verbeelding” that day, so the clowns were there only for Dejana. It was fascinating to see how especially one of the two ladies made contact with Deja and told her a story without saying one word. De silent clown kept Dejana’s full attention for more than twenty minutes. She had a small bird that sang a little song, she laughed at Dejana, had a wooden box with beautiful little things in it and Dejana followed it all carefully. All the time without putting her thumbs in her mouth (stereotype), what she almost always does when she is not “at work”. They really were in contact with each other, looked in each others eyes, there was connection and understanding. The changing to the second clown was the break point. That act took only a few minutes but Dejana’s concentration was over. She stood up and…….. went to the first clown and gave her a little Deja-kiss. We were touched.
After all this exiting Experiences we finally finished in the relaxing room. Dejana laid on the large warm water bed and got her body massage. Her legs and feet got relaxed and than hands and arms. During the massage of her back she felt in sleep.
It was a wonderful day for her. Thank you Marijke for a nice present.
Inside this big tent is placed a fantasy world designed to stimulate our six senses in many different ways. The project is called “De Belevenis” which means The Experience. Every visitor can get their own unique experience depending on his/her individual level of understanding/functioning.
The tent offers 6 large rooms created as a specific world of sensations: Ocean, Sky, Jungle, Arctic, Arabic and Red Surprise. Each of them offers their own special sounds, tactility and visual stimulations in the range: from simple to more complex. Sometimes we have to press a large button and snow begins to fall, or a wall starts to vibrate, or a big elephant head waves with his large ears.... Sometimes we have to open a door and bells start to ring inside, or a small carousel begins to turn around, or a strong aromatic odor comes out. There are big trampolines, large soft tunnels, water beds, and life size tubes with a light show to stand in. In different places you'll find slow and large slide-shows of fish swimming in the ocean, sounds of birds and a misty jungle atmosphere . . . . . A really amazing world of different experiences for our senses. When you get tired of the impressions you can go to a special room with a king-size warm water-bed. Here is a lady who will give you a relaxing massage with aromatic oil as long as you need it.
This project is created only for children with special needs and old people with dementia. The groups were small up to 30 visitors for a day so that everyone has enough time to make discoveries and to take their own experience from it.
Here are some photos to get an idea about “De Belevenis”:
Every year we visit De Belevenis once. This was our third visit.
It was a present from Marijke, our neighbor who plays with Dejana already for 10 years. Every week she comes on Thursday morning for tree hours of exercise. This time she took us to a special event outside. Marleen, another member of our team joint us as well.
I am always curious about changes that Dejana might show in comparison with the year before.
And she surprised us pleasantly. It was the first time that she went from one object to another very curiously and observed them carefully. This is not usual for a child with Rett syndrome. We were very exiting to see that she turned her head and looked around, that she recognized big animal-toys from a distance, smiled and turned her body to go there and touch them. She did it in slow motion but it was very close to a “normal child's” behavior. So nice to see it! Dejana observed her surrounding and could orientate in space all on her own. She did this for a half an hour. Then she got tired and needed a rest. I was very happy with this improvement. It occurred a few times during that day that she was showing clear initiative.
The second surprise happened on the large trampoline. We climbed on it together and let Dejana lay down as years before. Than we helped her to stand up expecting her to fall on this unstable surface, but she didn't. She stood and kept her balance even when we started to jump around her. She really enjoyed herself as well as we did. We jumped for 20 minutes, laughing and singing and Dejana was balancing in the middle proud on herself. It proved again that she likes challenging situations so much that she performs them better then daily actions. I keep on thinking that girls with Rett syndrome don't get enough challenges in their life's even if it absolutely necessary.
And then we came by two clowns. Is was not very busy at “De Verbeelding” that day, so the clowns were there only for Dejana. It was fascinating to see how especially one of the two ladies made contact with Deja and told her a story without saying one word. De silent clown kept Dejana’s full attention for more than twenty minutes. She had a small bird that sang a little song, she laughed at Dejana, had a wooden box with beautiful little things in it and Dejana followed it all carefully. All the time without putting her thumbs in her mouth (stereotype), what she almost always does when she is not “at work”. They really were in contact with each other, looked in each others eyes, there was connection and understanding. The changing to the second clown was the break point. That act took only a few minutes but Dejana’s concentration was over. She stood up and…….. went to the first clown and gave her a little Deja-kiss. We were touched.
After all this exiting Experiences we finally finished in the relaxing room. Dejana laid on the large warm water bed and got her body massage. Her legs and feet got relaxed and than hands and arms. During the massage of her back she felt in sleep.
It was a wonderful day for her. Thank you Marijke for a nice present.
Monday, December 13, 2010
Life threatening breathing disorder ...
... of Rett syndrome can be prevented !!!!
A group of researchers at the University of Bristol have sequestered the potentially fatal breath holding episodes associated with the autistic-spectrum disorder Rett syndrome.
However, an international team of researchers based at Bristol's School of Physiology & Pharmacology have discovered a way to prevent these episodes of breath holding in a mouse model of Rett syndrome. Using a unique combination of drugs, they have discovered that the area of the brain that allows breathing to persist throughout life without interruption has reduced levels of a transmitter substance called aminobutyric acid.
Professor Julian Paton, who co-led the research, said: "These findings make a significant step in our understanding of the reasons why breathing is intermittent in Rett syndrome and give exciting hope for the future for alleviating young girls from these awful life threatening episodes of breath holding, which they experience regularly throughout the day."
This autistic condition is caused by a spontaneous mutation in the gene that encodes for methyl-CpG-binding protein 2 or MeCP2. MeCP2 is very abundant in the brain and is a transcription factor that decodes DNA essential for making proteins in brain cells.
The researchers found that by increasing both the amount of aminobutyric acid (a vital brain signalling substance) and stimulating a specific type of serotonin receptor within the brain to suppress the activity of brain cells that normally depress inhalation, this abolished the life threatening episodes of breathing arrests.
"These exciting findings are particularly relevant since the drugs we used already have approval for use in humans to treat other illnesses, so the hope is that our findings can soon be translated across to sufferers of Rett Syndrome, and possibly other breathing disorders" said Professor John Bissonnette from the University of Oregon who co-led the study.
The findings of the study, which was funded by the International Rett Syndrome Foundation and the National Institutes of Health, are revealed in a paper published by the journal – Proceedings in the National Academy of Science (PNAS).
More information: http://www.pnas.org/
A group of researchers at the University of Bristol have sequestered the potentially fatal breath holding episodes associated with the autistic-spectrum disorder Rett syndrome.
However, an international team of researchers based at Bristol's School of Physiology & Pharmacology have discovered a way to prevent these episodes of breath holding in a mouse model of Rett syndrome. Using a unique combination of drugs, they have discovered that the area of the brain that allows breathing to persist throughout life without interruption has reduced levels of a transmitter substance called aminobutyric acid.
Professor Julian Paton, who co-led the research, said: "These findings make a significant step in our understanding of the reasons why breathing is intermittent in Rett syndrome and give exciting hope for the future for alleviating young girls from these awful life threatening episodes of breath holding, which they experience regularly throughout the day."
This autistic condition is caused by a spontaneous mutation in the gene that encodes for methyl-CpG-binding protein 2 or MeCP2. MeCP2 is very abundant in the brain and is a transcription factor that decodes DNA essential for making proteins in brain cells.
The researchers found that by increasing both the amount of aminobutyric acid (a vital brain signalling substance) and stimulating a specific type of serotonin receptor within the brain to suppress the activity of brain cells that normally depress inhalation, this abolished the life threatening episodes of breathing arrests.
"These exciting findings are particularly relevant since the drugs we used already have approval for use in humans to treat other illnesses, so the hope is that our findings can soon be translated across to sufferers of Rett Syndrome, and possibly other breathing disorders" said Professor John Bissonnette from the University of Oregon who co-led the study.
The findings of the study, which was funded by the International Rett Syndrome Foundation and the National Institutes of Health, are revealed in a paper published by the journal – Proceedings in the National Academy of Science (PNAS).
More information: http://www.pnas.org/
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