Vol 19 Issue 1, February 2010
Anecdotal evidence among CLS families seems to indicate that psychosis is more prevalent among people with CLS, especially females. This new study may provide some hope that this devastating condition may be prevented in some cases.—MCH
Source: http://www.wsbtv.com/health/22403104/detail.html
Carla K. Johnson
AP Medical Writer
Posted: 4:00 pm EST February 1, 2010
CHICAGO -- Fish oil pills may be able to save some young people with signs of mental illness from descending into schizophrenia, according to a preliminary but first-of-its-kind study.
The Austrian study of just 81 patients comes from leaders in the field of youth mental health and adds to evidence suggesting severe mental illness might be prevented with the right intervention.
Though it sounds incredibly simple, fish oil fits one hypothesis for what causes schizophrenia, a possible difference in how the body handles fatty acids.
"If it works, it will be an absolutely tremendous development," said Dr. Jeffrey Lieberman, chairman of psychiatry at Columbia University Medical Center in New York, who wasn't involved in the new study.
More research is needed to see if the results are accurate, he said.
The researchers are beginning a larger international study in eight cities with hopes of replicating their findings, which appear in February's Archives of General Psychiatry, released Monday.
Schizophrenia is a severe mental illness that strikes adolescents and young adults. About 2.4 million Americans have the disorder, which is treated with antipsychotic medication.
Since the 1990s, researchers have wondered if the disease could be stopped in its earliest stages, before it fully overpowers a person's grip on reality. Studies have tried antipsychotics in select young people, but troubling side effects pose ethical questions and results have been mixed.
For the new study, researchers identified 81 people, ages 13 to 25, with warning signs of psychosis.
The signs include sleeping dramatically more or less than usual, growing suspicious of others, believing someone is putting thoughts in their head or thinking they have magical powers. The young people in the study sought professional help and most were referred by psychiatrists at the Medical University of Vienna, Austria.
Researchers randomly assigned 41 of the patients to take four fish oil pills a day for three months. The daily dose of 1,200 milligrams was about what many people take to get the protective benefits of fish oil for the heart and costs less than 40 cents a day.
The rest of the patients received dummy pills. After one year of monitoring, 2 of 41 patients in the fish oil group, or about 5 percent, had become psychotic, or completely out of touch with reality. In the placebo group, 11 of 40 became psychotic, about 28 percent.
Four people would need to take fish oil to prevent one transition to a psychotic disorder during a year, according to the researchers.
No one knows what causes schizophrenia but one hypothesis says people with the disease don't process fatty acids correctly, leading to damaged brain cells.
Omega-3 fatty acids in fish oil could help brain cells to repair and stabilize, the researchers speculate. Some prior studies on omega-3 supplements in people with full-blown schizophrenia have shown benefits.
"Schizophrenia is among the most mysterious and costliest diseases in terms of human suffering, so anything that gives some hope to avoid this is great," said lead author Dr. G. Paul Amminger, formerly in Vienna and now at the Orygen Youth Health Research Center at the University of Melbourne in Australia.
Side effects of antipsychotics, including sexual dysfunction and weight gain, are troubling to young people, Amminger said. Fish oil, recommended for heart health, is more acceptable to patients with warning symptoms.
Scientists in the field greeted the findings with cautious excitement.
"The results are very impressive and very striking and really represent a step forward potentially for patients and their families," said Dr. Neil Richtand, a schizophrenia researcher at the University of Cincinnati College of Medicine.
Dr. Janet Wozniak of Harvard Medical School said the findings, while preliminary, might reasonably cause psychiatrists to recommend fish oil to some patients because there are known benefits and little risk.
Wozniak advised consumers to look for high quality nutritional supplements. Most fish oil capsules are free from contaminants and test highly for quality, said William Obermeyer of ConsumerLab.com, which tests supplements for manufacturers and publishes ratings for subscribers.
The research was funded by the Stanley Medical Research Institute, a nonprofit in Chevy Chase, Md., that supports research on schizophrenia and bipolar disorder.
Additional Resources:
Archives of General Psychiatry
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You can search throughout the entire universe for someone who is more deserving of your love and affection than you are yourself, and that person is not to be found anywhere. You yourself, as much as anybody in the entire universe deserve your love and affection. ~Buddha |
When Chris was 17, he started having episodes where he would collapse. He
would be diaphoretic
(very sweaty), gray, and be unresponsive for up to 10 minutes. - MCH
Chris is doing well. He is living at a group home about 15 minutes from home. He is going to be 22 next month. Hard to believe.
His episodes have been diagnosed as seizures and he is on Depakote (divalproex sodium) and Trileptal (Oxcarbazepine) and the episodes are well controlled. It has been months since an episode.
I was sure that he had some underlying cardiac problem. We did every test available, and everything came out clean. He has a slight gallop/murmur and takes an antibiotic when he has dental work done, but that is the only heart related thing that was found. His neurologist was pretty certain from the start that these were seizures and since he has been so well controlled with the medicine, I guess he is right. :)
One of the greatest challenges in caring for him is communication. He just can't explain what bothers him, whether it is physical or emotional. Sometimes he breaks down into tears and we have to play detective to figure out what is not quite right.
One of his favorite things in the world is trains. He loves the Polar Express. A couple of weeks ago, his grandmother and aunt took him on THE Polar Express ride out of Sacramento, CA. It went to the "North Pole" and had Hot Chocolate Dancers, etc. As far as he is concerned, he rode on THE train in the movie. It was awesome to see the pictures. A film crew was on the ride and so he got 2 seconds of fame on the local news.
He is quite the social butterfly. Very fun to be around and tends to be the life of the party. It is amazing to hear what comes out of his mouth at times. So funny.
I have found that, as Chris' parents, we are often more educated about his
condition and the potential problems than his doctors. They are always
interested in learning what we have to teach them though, which makes us feel
good. There are so many conditions, syndromes, diseases, etc that no doctor can
learn about them all in school. We have been fortunate to have doctors that care
about learning as much as they can and actually listen to us, as parents and
caregivers.
Ron & Laurie Michaelsen, Manteca, CA
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The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live the present moment wisely and earnestly. |
Hi my name is Deb and I am new to this group. I have a son who has just been diagnosed with CLS and I really don't know much about what people are using for communication devices for their family members. My son is 18 and does not talk. His sign language is very limited. Are their any members out there who have used communication devices for their family members? I realize each situation is different. I feel like the school and people who work with my son have given up on him being able to communicate. I, however, have not and am determined to find some way of truly communicating with my son. He has severe self-injurious behavior. I think I would, too, if I couldn't communicate for 18 years. My son's schooling is in constant jeopardy because of his behavior. Does anyone have any ideas or things that they have tried that I could possibly look at?
Deborah Lennon (Daniel, 18)
My son Lewis was diagnosed last Christmas at 16 years old. He is also on the whole very non verbal. We use signing with him, which has proven useful although he does not sign back. We also use PECS. This has proved very helpful in reducing self injury and frustration. Used properly, it can be a great aid in helping to support choice for the young person as well as helping them to communicate what they want, providing the objects of reference (my son is still at the 3d reference stage) are in a location that is visible and familiar to them.
Karen Garrott
(Charlie, 22)
Right now he actually he is using the PEC system at school. I think I should find out more about it. They tell me he gets into other kids PEC books and takes their symbols and wants to use them for his own. Which I think is rather brilliant. But they don't share my feelings on that. Like if they have a picture of a cupcake and he wants one he will take a picture from another student so he can have a cupcake in his book. Because he likes cupcakes. And sometimes he obsesses on certain symbols, especially food. So they have to limit the symbols they give him each day to what they are doing. But the PEC system is really is the only thing that has worked so far with his communication.
I was just wondering if there wasn't something more out there for him since he seems to abuse his PEC system sometimes.
Deborah Lennon
(Daniel, 18)
Just be sure that you've had a good hard talk with yourself that those cakes are not to be abused!! Otherwise they could end up on your hips! Those are therapy cakes - THERAPY CAKES!
Carolyn Meyer,
Cake Abuser
(Alex, 16)
I recently attended a PECs workshop and discovered that they award grants.
They also have a teaching facility in Brighton whereby you can go for an
intensive course. I have just applied for a small grant for a PECs professional
to come into my home and assess the boys and get us going which I got and
HOPEFULLY we will get it going. http://www.pecs.org.uk/
Wendy Wilson (Conner, 7)
Some of the people who work with people with special needs shouldn't be there. They are the ones who report to you all the things that went wrong that day and suggest (without quite saying it) that it's your fault (because, of course, you should have sent them to school on their best behavior). I have run into those people from time to time but for the most part, we have been very lucky: enough people around at any given time who go out of their way to enable Jeremy to just be one of us, which is what he wants.
Sounds to me that you currently have people around who aren't doing the job they should; they're making you and your son feel guilty and discouraged, and that just isn't right. I hope you can also find others who have better insight and heart -- maybe some other parents of kids with special needs at your school, for example? It makes your huge task as a mom of a son with CLS a lot easier to bear.
In the meantime, let me say again that I think your own insights about your son's desire to communicate are spot-on. You recognize how frustrating it must be to not be able to communicate, and as we know, kids like ours find ways to take a little control where they can; unfortunately it just looks like bad behavior to most of the world. So hang in there despite the nay-sayers. I wish you great success in your quest for better communication.
I think it's a very encouraging thing that you say that he takes other kids' symbols about food. Clearly they mean something to him. One thing I've learned over the years is that you use things that are motivating to the kids to move to another step. So rather than discouraging your son from 'stealing" the symbols, you and the teachers could really take it as a place to start. He likes food symbols? Find all the food symbols you can and make games with them. He is already communicating by taking the food symbols, and if it's one of the few ways he has right now, it may be better to channel it into new possibilities than to say “No”.
Diane Engelstad
(Jeremy, 13)
My daughter, Mercedes, was diagnosed 4 years ago with CLS. She is able to verbally communicate with us, but I have a stepdaughter with Cerebral Palsy who is unable to. She has a device called a Dynavox that she uses to talk to everyone. It is a computer that can be hand held or attached to a wheelchair. She controls it and actually has a voice that talks out loud when she is ready to say what she wants. This device is extremely amazing and has expanded our world of communication with her. I figured it's worth checking out if no one has told you about it.
It seems to me a lot of professionals are not forthcoming on technology for our special ones, because it's easier to just brush them off. I am constantly in a battle to prove that everyone can learn from our precious children.
Rhonda Strang
(Mercedes, 9)
My son Jacob is 17 and he uses a Mercury from Assistive Technology. When we bought it, we were hopeful it would be a device he could use for a lifetime. Technology has surpassed us, and although he uses it at school there are better (and less expensive devices) out there. Dynavox is a good company from what I hear. We use photos and PECS, Jake much prefers photos. He does vocalize a lot but we can't understand what he says so we just talk to him, and try to guess what he's trying to say. He can say "all done" and he does sometimes sign, but he prefers to grab your hand & drag you to indicate what he wants. I do use the Picturemaker on the computer to print symbols - to label his drawers to put clothes away, for example. Hope this helps!
Lissa Walter
(Jacob, 17)
Augmentive Communication Resources:
http://www.dynavoxtech.com
http://www.pecs.com
http://www.speechgeneratingdevices.com/
http://www.abilityhub.com/aac/aac-devices.htm
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Believe nothing, no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own
reason and your own common sense. |
Daniel Koeberle, Age 18 - Deborah Lennon, New York, USA
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Carlos Moral, Age 21 - Mercedes Moral, La Roda, Spain
Carlos Moral has taken a CLS test but it wasn’t conclusive, so the diagnosis is not confirmed. Carlos has undergone spinal surgery 6 times due to his severe scoliosis. He could walk with help from the age of 4 until he was 15. In the end, he became paraplegic for compression in his spine and he is in a
wheelchair now. Paraplegia makes it difficult for him to urinate, so he needs 2
o 3 catheters a day, which creates frequent infections and a need for
antibiotics very often. He was potty trained by 5 years old. Paraplegia brought
along constipation. He takes dulcolaxo and other laxants, although lots of
vegetables and orange juice are of much help. He has sleep apnea. At night he wakes up several times. He calls his dad and we sit him up for 5 minutes. This helps avoiding pressure ulcers. Carlos speaks quite well and he learns new words and phrases easily, especially funny-sounding ones. He doesn’t read or write. He has been going to a special school since he was 2. At present he goes to a day centre from 9:30 to 17:30. We are very happy with the attention he gets there, as they work personal autonomy (eating, dressing, hygiene), physiotherapy… Carlos likes going for a car ride, watching videos of himself as a little boy, bicycles and motorbikes magazines, listening to music and going to concerts (He has very good ear and rhythm!). He is very shy with strangers, he really appreciates when people show interest in him. He is fun, joking, affectionate and outgoing with his family, teachers and classmates. He is known for having good sense of humour. Mercedes Moral
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| Samuel Santos Sousa, Age 12 - Priscila Sousa, Sao Paulo, Brazil
My brother Samuel has the disease of Coffin-Lowry syndrome, a disease found that 6 months in the hospital clinics in Ribeirão Preto in São Paulo where he receives treatment since birth. Here in Brazil the disease is rare but I know that in his country and medicine is very advanced and there are many confirmed cases of the disease. At 3 months of life he had a crisis, the only so far. He had early hydrocephalus and since then receives treatment at the Hospital das Clinicas of Ribeirao Preto of Sao Paulo state, Coffin Lowry Syndrome was confirmed in June 2009 we're chasing families of information that can help our Samuca to live and develop well. He is a child very happy, loving, smart and intelligent. Attends a special kindergarten through period until the end of 2008 he walked alone in early 2009 began to lose use of his legs. He can now walk with the help of people. He will begin physical therapy and hydrotherapy this year, also uses a wheelchair, but sits and raises it when you want. He have much strength in the arms and can not walk alone sometimes he creeps with the help of his hands. He can not distinguish the right side of the clothes or shoes, but know where to put each part just fine. Eating alone too, certain food that he drops out of the dish. He talks a bit convoluted, even those who does not live with him directly understand what he says. I count on the help of all and I stand ready to assist in all it takes. Priscila Aparecida de Sousa Santos Priscila is anxious to contact other families who speak Portuguese-Brazil. - MCH
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Thanks for Caring!The following families and individuals have recently made generous donations to the Coffin-Lowry Syndrome Foundation:
Send your donations to:
Donations are tax deductible. EIN 20-3377465
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In Loving Memory Joseph “Joey” Fortune Joey was the adoptive son of Martha Fortune of Sebring, Ohio. He passed away due to unknown complications from a recent surgery. He touched the lives of everyone who knew him. Martha would like to thank everyone for the outpouring of support she has received during this difficult time. Martha Fortune and Family |
