This is an article about stem cell use for treating Autism. I realize this is highly controversial, so I ask you, what do you think? Do you agree with this? Why? Why Not?
SACRAMENTO, August, 21, 2012—Sutter Neuroscience Institute, a recognized Center of Excellence, and CBR (Cord Blood Registry), the world's largest stem cell bank, are launching the first FDA- approved clinical trial to assess the use of a child's own cord blood stem cells to treat select patients with autism. This first-of-its-kind placebo controlled study will evaluate the ability of an infusion of cord blood stem cells to help improve language and behavior. The study is in conjunction with the Sutter Institute for Medical Research.
According to the Centers for Disease Control and Prevention, autism spectrum disorders impact one in 88 children in the US, and one in 54
boys.1 The condition is thought to have multiple risk factors including genetic, environmental and immunological components.
"This is the start of a new age of research in stem cell therapies for chronic diseases such as autism, and a natural step to determine whether patients receive some benefit from an infusion of their own cord blood stem cells," said Michael Chez, M.D., director of Pediatric Neurology with the Sutter Neuroscience and principal study investigator. "I will focus on a select portion of children diagnosed with autism who have no obvious cause for the condition, such as known genetic syndromes or brain injury."
The study will enroll 30 children between the ages of two and seven, with a diagnosis of autism who meet the inclusion criteria for the study . Enrolled participants will receive two infusions—one of the child's own cord blood stem cells and one of a placebo—over the course of 13 months. Both the participants and the lead investigators will be blinded from knowing the content of each infusion. To ensure the highest quality and consistency in cord blood stem cell processing, storage and release for infusion, CBR is the only family stem cell bank providing units from clients for the study.
For information on study, visit http://www.cordblood.com/autism.
A newborn's umbilical cord blood contains a unique population of stem cells that have been used for more than 20 years in medical practice to treat certain cancers, blood diseases and immune disorders. When patients undergo a stem cell transplant for these conditions, the stem cells effectively rebuild the blood and immune systems.
"A focus of my research has been the complex relationship between a child's immune system and central nervous system. We have evidence to suggest that certain children with autism have dysfunctional immune systems that may be damaging or delaying the development of the nervous system," continued Dr. Chez. "Cord blood stem cells may offer ways to modulate or repair the immune systems of these patients which would also improve language and some behavior in children who have no obvious reason to have become autistic. The study is similar to other FDA-approved clinical trials looking at cord blood stem cells as a therapy for cerebral palsy."
"It's exciting to partner with thought-leading medical researchers and clinicians, like Dr. Chez, who are pursuing a scientifically-sound approach in evaluating new therapeutic uses for cord blood stem cells for conditions that currently have no cures," said Heather Brown, vice president of scientific & medical affairs at CBR. "Families who made the decision to bank their stem cells to cover the unknowns and what ifs in life are gaining access to this and other important clinical trials while playing an important role in the advancement of science."
The co-investigator of the study is Michael Carroll, M.D.,
medical director of the Blood and Marrow Transplantation and Hematological Malignancies Program at Sutter Medical Center, Sacramento.
"There is a vast amount of unchartered territory when it comes to how stem cell therapies may help patients living with these conditions,"
said Dr. Carroll. "I've seen how stem cell therapy has changed my field of medicine and how I care for my blood cancer patients. I am eager to see how our work can open new doors for patients and families dealing with autism."
CBR® (Cord Blood Registry®) is the world's largest and most
experienced cord blood bank. The company has consistently led the
industry in technical innovations and supporting clinical trials. It safeguards more than 400,000 cord blood collections for individuals and their families. CBR was the first family bank accredited by AABB and the company's quality standards have been recognized through ISO
9001:2008 certification—the global business standard for quality. CBR has also released more client cord blood units for specific therapeutic use than any other family cord blood bank. Our research and development efforts are focused on helping the world's leading
clinical researchers advance regenerative medical therapies. For
more information, visit www.cordblood.com.
About Sutter Neuroscience Institute: Leading-Edge Diagnosis and Treatment
Sutter Neuroscience Institute (SNI) has multidisciplinary teams of nationally recognized specialists and highly trained nurses and technicians provide skilled diagnosis and advanced treatment of complex conditions of the brain, spine and central nervous system.
Infants through adults also receive the benefit of today's most advanced technology and access to clinical trials of tomorrow's most promising developments. The Institute, which is headquartered at Sutter Medical Center, Sacramento, is part of the Sutter Medical Network, which includes many of California's top-performing, highest quality physician organizations as measured annually by the Integrated Healthcare Association. Sutter-affiliated hospitals are regional leaders in cardiac care, women's and children's services, cancer care, orthopedics and advanced patient safety technology. For more information about the not-for-profit Sutter Health network, please
Read more: Autism and Cord Blood Stem Cells: FDA Gives Green Light for Groundbreaking Clinical Trial - FierceBiotech http://www.fiercebiotech.com/press-releases/autism-and-cord-blood-stem-cells-fda-gives-green-light-groundbreaking-clini#ixzz25AvuOxjl
This is a question that a parent wrote to me on Parents.com. Take a look and share if you have used other strategies that have been helpful!
I have a 4 year old whose has not been officially diagnosed with autism but we have been told he is autistic. We are waiting for the official diagnoses. But we have been told he is on the mild end of the spectrum. He refuses to have a bowel movement in the toilet. Do you have any recommendations on how I can get him to stop going in his pants?
Potty training is a difficult process that requires a lot of patience and creativity on the parent’s end! The literature shows that potty training a child on the autistic spectrum is especially challenging, so know that you are not alone in your experience.
You may want to begin by assessing your child’s level of readiness for using the toilet for pooping. If he showing interest in using the toilet to urinate, then you’re at a good starting point already! If you are doing so already, continue to have a potty or potty seat in to the bathroom and let him continue to sit on it and explore it.
You may want to take a ride to your local library and check out some books and videos about potty training. This may help him to validate his feelings about potty training, especially if he is able to relate to a character’s experience in the book. It may also help to give him the visualization of the process so that he can internalize it and carry it out himself. Check out some of these titles:
Once Upon a Potty book (for boys)
The Potty Book for boys
Potty Time (from Usborne Books)
Potty Time with Bear (in the big blue house) book
I Gotta Go! Music Video
You can also create a social story for your son. A social story is a brief, simple and personalized story that you create for your child with Autism in order to teach a skill or validate feelings. Begin by reading the story with your son multiple times each day and then less often once he begins to show an understanding of the process. The story you create should use simple language and picture symbols to help him to begin to associate the message with the picture.
Here is an example of a social story about potty training. Note that each one of these sentences goes on one page. Take pictures of your son going through the motions listed below and attach to each page of the story:
Sometimes I have to go to the bathroom.
Sometimes I have to go pee.
Sometimes I have to make a poop
After I make a poop, I need to wipe myself. This is okay.
If I cannot wipe myself by myself, I will ask mommy for help.
When I am done wiping, I can flush the toilet.
Then I can wash my hands.
You did it! Good Job, Johnny!
Another strategy may be to offer him a role model. That is, you may need to use the “open door policy” in the bathroom and allow your son to watch you or other family members going through the motions. If you are not comfortable with him watching you or a family member, then pretend but make sure he is watching.
All of us seem to have a pattern or time(s) of the day when we have a bowel movement. Keep a log of when your son is pooping in his pants. Once you notice a pattern, take him to the bathroom at ‘the’ time. It may be harder to resist going in the toilet if the urge is there.
Reward, reward, reward! Provide lots of high affect and verbal praise when he even attempts to make a poop in the toilet. If he doesn’t, don’t get upset or frustrated (or at the very least, don’t let him see that you are!) and say, “Good try. Maybe next time” and move on to something else. Don’t dwell on it or discuss it. Find out what motivates your son and reward him with it. Perhaps he can watch a video after pooping in the toilet; this is his short-term reward. Then enact a long-term reward where if he goes in the toilet X number of times during the week (Sunday-Friday), he earns a bigger reward (e.g., a new toy).
Practice, practice, practice! The more he practices, the more the process becomes familiar, and the easier and less frightening it will be for your son to poop in the toilet!
I received this email from Gina S. from Illinois regarding potty training her boyfriend's daughter who has been diagnosed with Autism. Please review her question and my response. Gina has indicated that she is open to suggestions and feedback from all of you and is open to hearing your strategies.
Looking forward to your ideas!
Hi Dr. Mathis,
I saw your profile on Parents.com & I realize you're based in New Jersey but I just wanted to ask for recommended literature. My long-time boyfriend has a 6 yr old daughter with Autism--plagued with severe sensory issues, and currently now takes 0.5 ml of Risperdal daily for extremely aggressive behaviors toward her peers when angry. Now those behaviors have almost been totally extinguished at this point, and as a totally nonverbal child until 2010 she just began to talk, single repeated words, then in phrases & now uses language constantly over the past 1 year of being on this medication--she is basically a chatter box now as she practices trying out new words, sings, and shows-off her adorable voice.
She is quite low-functioning in some areas that relate to handling difficult sensory experiences therefore potty training has been totally impossible. She hates the toilet, sitting on it is very distressing for he no matter what potty, where it is, etc. She's just fine eliminating on the floor if her pull-ups are removed (or even if they're not & she's having a breakdown).
As the girlfriend to her father and the next most vital part of the home support system for her along with her mother & father, I want to know if its even possible to imagine this child being potty trained? How? And how do we begin approaching this at home in our own way of making it as comfortable as possible---while of course following all routines set-forth by her IEP plans/school specialists/parents/doctors?
No one has given a definite yes or no to even the physical possibility of fully potty training her, but all involved agree that this is such a huge burden, such an unresolved issue as she's constantly struggling with demanding to change or not wanting to change her pull-up.
I need to find some real solid clinical research and information for my own knowledge.
I truly don't know if it's possible at this point, but I want to be as informed as possible.
Thanks so much for considering these questions & possibly directing me to the most valuable and relevant journals, research and info available!
Dr. Liz's response:
I really commend you on seeking information for your boyfriend's daughter.
Your next best source of info is to consult with the child's occupational therapist who can advise about actual sitting on the toilet and the pull up given her knowledge about your boyfriend's daughter's sensory profile. For example, she/he may suggest giving deep pressure prior to sitting on the toilet. She may also give you insight into why she may actually enjoy the wetness that comes with a full pull up. She may be hypo-reactive to sensation on her skin and enjoys the feedback.
The other variable in effect here is the anxiety associated with the actual letting go of her feces and urine into the toilet. Keep in mind that toilet training is a big control issue and you want it to be as much on her terms with lots of praise but in line with her sensory needs.
In terms of is it possible for her to become potty trained, the answer is absolutely but it will take time. I'm sure you read my response to the potty training question on Parents.com and saw that there is a long list of strategies and possibilities.
Don't get too lost in the literature but rather in engaging with the little girl and understanding her experience. This will give you far more useful information than the books and articles that you think are going to offer you the solution.
Good luck and please write to me as you gain info from the occupation a therapist and as you venture out on the potty training adventure!
Dr. Liz Matheis
Here are some great strategies to use for your child with ADHD for homework with the upcoming school year. Read on and see what works for you and your child!
Published in: NJ Family Magazine, August 2012:http://www.njfamily.com/NJ-Family/August-2012/Homework-Help-For-ADHD-Kids/
Author: Dr. Liz Matheis
The end of the summer is near. That means—ugh!—homework season is lurking right around the corner. As your child with ADHD is progressing to the next grade, the amount and complexity of homework will increase, so you need a plan to keep homework from becoming an exhausting battle for you and your family.
Consistency is key
When your child comes home from school, set the clock. Give him a 30-minute break to sit down an have a snack and decompress from the school day. Then, it’s time to start homework. Follow this schedule consistently from day to day, with as little variation as possible.
Location, location, location
Depending on your child’s age, you may want to set him up at the kitchen table, the dining room table, or a desk in a quieter corner of the house. Avoid setting up a desk in the bedroom; you want to separate out work from play and rest. The younger your child, the closer you want him to you while he’s trying to focus on schoolwork. The kitchen or dining room table gives your child the opportunity to work comfortably and in your presence, which also may increase his ability to concentrate.
If you have a pre-teen or teen on your hands, you’ve probably noticed that, left to his own devices (no pun intended!), he turns on the music and TV while doing homework. Be proactive and select quiet, soothing music before he does. Choose something relaxing—something without words that will act as constant but soothing background noise. When the work is over, he can take over as DJ and rock the house.
Set a timer
Most children with ADHD avoid homework assignments that require working for sustained periods of time. To help your child with these longer stretches, estimate how long an assignment is going to require and set a timer—an egg timer, a tomato timer, a chicken timer, whatever! Make a game out of it. Set the timer for the estimated time, and challenge your child to beat the clock. Encourage him to work on an assignment until the timer rings. When the time’s up, give him a break. If he’s fidgety or restless, suggest a break that includes some sort of physical activity (going up and down the stairs three times or walking around the house outside). If your child can work for 15 minutes, provide a 5-minute break and time that as well. Once the bell rings, it’s time to get back to work.
Prioritize the projectsADHD is more common in boys than girls, and it affects 3–5% of children in the United States.
Begin by asking your child to take out his notes and review his homework assignments for the night. Ask him to estimate how long each homework assignment will take. Write the assignments on a whiteboard in order of longest to shortest time required. Then set the timer and get started. When the timer rings, cross off any completed assignments, take a break, and move to the next item on the list. The goal is to finish as quickly as possible so that your child can have time at the end of the night to relax and wind down.
Color-coded subjectsMost likely, your child is a visual spatial learner, which means he thinks in pictures, not words, and sees the bigger concept or idea, not the details. In order to encourage organization, assign a color to each subject with corresponding notebooks and folders. When your child is looking for his Science folder, he looks for “green,” not the word “SCIENCE.” This will help him look for his Science materials at home, in his backpack, in his locker, or in his desk.
Create a calendar
Now that you have assigned colors to your child’s subjects, help him create a master schedule for the month, with all homework assignments and projects properly color-coded. One quick glance at the schedule tells him which assignments are coming up based on the date and color.
Pour on the praise
As your child completes homework more consistently and with less resistance, he will feel more confident and proud. His self-esteem will increase and he’ll have a better chance of conquering homework successfully again the next day. Provide praise and/or privileges for completed homework, and make sure you emphasize how this is a result of his efforts.
Dr. Liz Matheis is a licensed clinical psychologist and school psychologist in Parsippany who provides psychotherapy, assessment, consulting, and advocacy for children and families managing ADHD, learning disabilities, and Autism Spectrum Disorders.
Published in Autism Notebook Magazine: http://trendmag2.trendoffset.com/publication/?i=122044
In this article, Dr. Liz describes what to look for in your Psychological Evaluation when completed by your Child Study Team.
When it’s time for your child’s initial or triennial re-evaluation, the Psychological Evaluation is a great source of information for you and your Child Study Team (CST). This report provides an IQ, or intelligence quotient, that is an assessment of your child’s intellectual capability. This report, as well as your Educational Evaluation, is one of the two key reports that will inform you about your child’s academic program and supports to help your child access the curriculum in the best way possible.
The Psychological report is administered by a certified School Psychologist within the public school setting, or by a licensed Clinical Psychologist if completed independently or privately. You, as the parent, have the right to request this evaluation every 3 years or sooner, but no more than one time per year.
Also, review this memo from the Department of Education to Directors of Special Education (in New Jersey) dated May 14, 2012 in which there is clarification that if a parent requests an independent evaluation, the district can no longer state that the CST gets the first opportunity to evaluate. Instead, the evaluation will be provided by the district at no cost to the parent, unless the school district files for a due process hearing: http://www.nj.gov/education/specialed/memos/051412Evals.pdf
What are the types of Psychological Assessments that I may see within the Psychological Report?
Standardized tests are normed and provide a standard score and percentile rank. · Wechsler Intelligence Scale for Children, 4th edition (WISC-IV), ages 6 to 16 · Wechsler Preschool and Primary Scale of Intelligence™ – Fourth Edition (WPPSI – IV), ages 2.5-7.5 · Stanford Binet, Fifth edition (SB5), ages 2-85 · Kauffman Assessment Battery for Children, 2nd edition (KABC), ages 3-18 · Woodcock Johnson Test of Achievement and Cognitive Ability, 3rd edition (WJ-III), ages 2-90 Rating scales are used to look at the presence or frequency of behaviors or skills based on the rater’s perception. The rater is someone who is familiar with the student, such as a teacher or parent, and often multiple raters are asked to complete it.
· Conner’s Rating Scale (used to assess ADHD symptoms)
· Behavior Assessment System for Children (BASC)
· Vineland Adaptive Behavior Scales
Self-Report Scales are given to the student in order to rate his skill or behavior. The student is often older and able to rate herself.
· Pier’s Harris Children’s Self Concept Scale, 2nd edition
· Conner’s Rating Scale
· Behavior Assessment System for Children (BASC)
The Psychologist also uses observations of the student within the classroom in order to gain information about behavior, social skills, and attention and focus. Within the report, there will be a description or summary of what took place as well as interactions with peers and the classroom teacher. The report may also include information gained from teacher observations regarding specific areas of functioning (e.g., organization, homework completion, study habits, etc).
Another source of information is the interview. The Psychologist meets with the student and asks questions about peer relationships, home, teachers, and preferences.
What type of information should I look for within the Psychological Report?
A good Psychological Report contains the following sections
· The Primary Purpose of Assessment – why the student is being tested at this time. For example, due to initial evaluation to determine eligibility for special education and related services, or due to triennial re-evaluation to determine continued eligibility.
· Background Information – a summary, gained from student interview, regarding student’s hobbies, likes and dislikes in school, social relationships, family, etc.
· List of assessments or procedures used – for example, the WISC-IV, observation, teacher feedback, student interview.
· Report and Interpretation of test results – a summary of how your child performed on the standardized tests, findings of the rating scales and self-report scales with a discussion of what these results mean as related to academic performance
· Summary of test findings- a summary of all the findings. This is often the section that most people read first as it is brief and relates back to the primary purpose of assessment.
· Recommendations –a list of accommodations such as instructional modifications (e.g., preferential seating) and movement or sensory breaks
The report provided by your CST School Psychologist will not contain any diagnoses, whereas an independent or private evaluation will. Additionally, the report provided by your School Psychologist will not indicate eligibility as this is determined by the IEP team.
As you can see, the Psychological Report is a great source of information about your child’s abilities and weaknesses that will guide you in determining the type of program needed as well as accommodations to help your child succeed in school.
Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ who provides assessment, psychotherapy, consulting, and advocacy for children and families managing autism spectrum disorders, ADHD and learning disabilities (www.psychconsult.weebly.com). She is also a contributor to several popular press magazines
Tell me what you think! What are some of the struggles you find in caring for your child with special needs?
Instead of posting an article or other information, today, I'd like to give you, Moms and Dads, the chance to tell me what you think!
What are some of the struggles you find in caring for your child with special needs?
Perhaps in voicing your opinion, other readers, as well as myself, will be able to offer your resources or at least a lead in the right direction.
Come on - don't be shy! Tell me and your fellow blog community what keeps you up at night... or occupied in your own thoughts.
I am very much looking forward to hearing from all of you!
The question was asked:
Why doesn't my son respond or talk?I have a 2-and-a-half-year-old son who seems to respond to his name only when he likes to. When someone waves "goodbye" to him, he just stares at the person until the person's long gone, and then he'll say "bye." What suprises me is he doesn't repeat to what we say, but he sings along with almost every song on TV or radio. I feel I can't communicate with him, and as a result, I can't potty train him. Should I be concerned? Will he start talking at some point?
Dr. Liz's response:
Songs he sings that are heard on the radio or TV remain the same every single time, so he sings as a result of memorization. The songs are consistent and predictable, but spontaneous language is not. When your son wants to eat or wants a toy, how does he let you know? Does he point? Does he grunt? In order to communicate with your son, continue to use language, point to objects and name them, and encourage him to repeat a word or phrase after you. If he gestures that he wants milk, ask, "Do you want milk? Say, ‘Milk, please.’" When he uses these words, give him milk right away. Continue to work on this repetition (e.g. "This is a ball. Can you say ball?").
When toilet training him, you don't need him to do a ton of talking. Explain what you are doing, put him in Pull-Ups or underwear, and take him to the bathroom every 30 minutes. When he has success going potty, offer him a small reward such as an M&M or cut-up pieces of a gummy worm. Do not punish him if he has an accident. Instead, remain neutral and say, "You can try again next time."
It’s possible your son's lack of response may stem from difficulty hearing certain levels of sound and his delayed response may be a result of slowed processing. Consult your pediatrician and request a hearing test and a central auditory processing evaluation. Another source of information and support is Early Intervention. Ask for a developmental evaluation to determine if your son is behind in any of his areas of development, such as speech. This may qualify him for in-home services.
Written by Dr. Liz Matheis for Special Needs.com Magazine: http://www.specialneeds.com/children-and-parents/general-special-needs/parents-cheat-sheet-august-jitters
A new school year is approaching and for manystudents with special needs, the anxiety may be growing. As a parent, you begin to notice this pattern each summer and you may not know exactly how to soothe your child other than to say, “You’re going to be fine,” which is nice, but just not enough. You may notice a general level of agitation, argumentativeness, restlessness, or constant chattiness about school and not wanting to go back.
Here are some strategies for you to use to help ease your child’s anticipatory anxiety about the first day of school.
Take a field trip…. to school
Everyone loves a field trip, so pack the kids, we’re going to school! It may sound silly, but take your child to his school and walk around the playground, the main door, and the door at which your child will wait in the morning. If your child takes the bus, review the routine: the bus stops here, you come out here and walk to over here. If you drive your child to school, show her where you will drop off and the path that she will use to go to her waiting area until the bell rings.
Play on his playground so that your child develops a sense of comfort after a long summer break. If the school building is open, take a walk around the area and hall where your child’s class is likely to be.
Even though this may be your child’s 3rd, 4th or 5th year in the same school, visiting the school building while it is empty may help your child to feel like the school building and playground are not as intimidating as she imagined them to be.
Get Ready Together
Use the month of August to buy school materials instead of rushing during the last week or few days before the first day of school. That makes a parent anxious which makes a child anxious. Instead, take your time and browse around for the ‘perfect’ lunch box, backpack, sneakers, etc. Let your son or daughter think about the character he/she wants or the color or pattern. Turn it into an exploration mission if you need to! Also, pair up your shopping trip with a fun picnic lunch or a play date. The more positive the association, the better!
Talk About It
In many homes, the topic that causes anxiety is an avoided one. Well, don’t avoid it, talk about it! Ask your daughter, “What do you think 2nd grade is going to be like?” And let her tell you about what her worries are. If she is concerned about the amount of homework she’s going to have, ask her, “How do you think you’ll be able to get your homework done?” Instead of trying to solve the problem by offering a tutor, yourself, or your neighbor, encourage your child to problem solve. By brainstorming and coming up with more than one possible solution to the problem, you are building your child’s ability to solve her problem which has a positive effect on self-esteem. Also, she won’t rely on you to come up with solutions especially because you won’t be with her every day all day when small and big dilemmas arise.
Plan on Play Dates or Get Togethers
Call up other moms and plan a get together with a bunch of your child’s classmates so that your child is not seeing his peers for the first time after two months of a summer break. This gives them the chance to re-connect at a time when it’s not awkward or uncomfortable. Instead, they will have already ‘broken the ice’ again and will be able to talk or play with a sense of ease.
For children starting Kindergarten, plan on a Kindergarten Bunch where you meet with other students on the playground several times over the summer. Find a contact from the PTA and see if you can gain the names of a few mothers of Kindergarten students. A few moms and a few kids is all you need to ease the first day of Kindergarten nervousness and tears.
Pack a Friend
I don’t mean literally, but rather pack a small toy, note, or something of yours that your child can reach for or hold while transitioning from home to school. It may bring some comfort in knowing that you are there even though you aren’t really there.
Going back to school after a two-month break can be overwhelming for any child. Use any or all of the strategies listed above and hopefully, you and your child will be able to enjoy the end of the summer and the beginning of a new school year.
Dr. Liz Matheis has joined on as the newest contributor as the Couples Coach!
The Parenting Playground Blog (http://theparentingplayground.com/) is a blog focus on parents and offers information and advice in several areas. Read more at http://theparentingplayground.com/about/contributors/.
Each week, expert contributors will address a wide range of topics facing parents every day:
Dr. Liz Matheis
Dr Liz Matheis and her team specialize in assisting children and their families with Anxiety, Autism, AD/HD, Learning Disabilities and Behavioral Struggles