My Daughter Addressed Me!

Last night, sitting together on the family room sofa, and watching a little nature show, my daughter turned to me and said,"Mom, shish?" The "shish" is her approximation for goldfish crackers. She wanted some. The first word surprised me and my husband. She has said "Mom" for years, usually to someone else, to ask to see me. "Mom?" has always been a request that meant "I want Mom." But, last night, she said my name to me, to get my attention, so I would know she was talking to me, and that is new. I can't remember another time that my daughter has addressed anyone, including me. I don't know if this is the result of her communication growth through speech therapy, or just a one-time thing that will never be repeated. I liked it, and I hope it happens again. It is a small thing, but it meant a lot to me.

Follow Up to Communicating with First Responders

I called Frederick Memorial Hospital yesterday to find out which ambulance was responsible for transporting my daughter. With their help, I called the number that they provided and left a message for someone to call me back to discuss what happened. My goal was to determine what went wrong, and what if anything I could do to prevent an EMT from overriding my authority in the future. I received a callback last night from a man who supervises the EMT supervisors, and we had a very helpful discussion to both of us. For my part, he suggested that I ask to have an EMT supervisor involved if I am ever in a situation again where an EMT will not listen to me. He agreed with me that the EMT's did not have to transport my daughter to the hospital if she showed no signs of injury, just because she was not competent to decline transport. He told me that if I were on the scene of the accident, I would not be asked to show ID, and so the issue of proving my identity should not have been a big concern over the phone. He told me that someone had asked to provide training regarding care of patients with autism to the EMTs under his authority recently, and that he would follow up and make sure that his EMT's received that training. In addition, he planned to issue a memo to his EMTs and supervisors regarding appropriate actions in future situations like ours. As I suspected, sometimes EMT's get in trouble for using their own common sense and become a bit gunshy about doing so as a result. That doesn't mean that there is not a way to get support for them and for patients when there is a difference of opinion about what is the correct course of action.

Communicating with First Responders

A week ago, my daughter was in an automobile accident on her way to the zoo. She and her staff did not appear to be injured, according to the report by the staff member who called to inform me of the accident. The police were not on the scene, and there was another automobile involved, so I called the police from home to report the accident and get help on the scene as soon as possible. Shortly after, my staff called me back and told me that the EMT's wanted to transport my daughter to the hospital to be examined because she could not respond to questions regarding her well-being. I determined that my daughter was not upset or crying, or indicating distress in any way. The airbags in the car had not deployed, and my daughter was seated in her restraint harness in the third row of our Suburban, while the staff had been located in the first and second rows and were fine. I asked to speak to the EMT, and asked him to allow my daughter to remain in the vehicle with her staff until I could pick them up. He said that he would have to take my daughter to the hospital because her staff did not have power of attorney to make decisions regarding her care, and because he could not verify that I was who I claimed to be. I told the EMT where to find the First Responder form that I had ordered from the autism society, and that was located in the fanny pack that always travels with my daughter and her staff. The form lists me as parent and legal guardian, and provides my contact information. I suggested that he call me back on the phone number listed on the form to verify who I was, but he would not listen. I explained that he would increase the chances of an aggressive tantrum that could result in injury to my daughter or others if he restrained her in an ambulance and that she was safer in her own car in her safety harness with familiar staff. I was only a 25 minute drive away from the scene of the accident. He refused to follow my instructions and insisted that my daughter and her staff leave the vehicle and travel in the ambulance to the nearest hospital and threatened to leave the staff behind if they did not come immediately. They were not permitted time to return to the car for my daughter's communication device, and had to leave it behind to be retrieved later. Ironically, when I arrived at the hospital, the nurse allowed me to refuse medical care for my daughter and to take her home without being required to show any proof of my identity or relationship to my daughter. She was, and is, fine. If I leave town, I always leave my daughter's staff written permission to make medical decisions for her in the event that I can not be reached. I am hesitant to do that when I am nearby. The First Responder form that is always with my daughter should have allowed anyone on the scene to call the phone number provided to assure them of my identity. How would I even know that the form existed and where to find it if I did not put it there? I think that these first responders put my daughter at greater risk by refusing to use simple common sense. I am not sure what the solution to this problem is. I will write a follow up post when I figure it out. Feedback from anyone who is familiar with this problem would be welcome. I really thought I had adequately prepared for emergencies by ordering and completing the form that is offered by the autism society, but when it was actually needed, it did not help.

Treatment Helps Non-Verbal Autistic Children to Speak

If you have a child who has PDD and is non-verbal, this article might be of interest to you. I have copied it for your information. The original article was printed in Health News. "Study tests novel treatment developed at BIDMC BOSTON -- A new treatment can help nonverbal children with autism to develop speech, according to a proof-of-concept study led by researchers at Beth Israel Deaconess Medical Center and reported in the September 29 issue of the journal PLoS One. Known as Auditory-Motor Mapping Training (AMMT), the novel treatment builds on the observations that children with autism – who typically struggle with communication, as well as social interactions – often respond positively to music. Autism affects an estimated one in 110 children and one in 70 boys. ”Communication deficits are one of the core symptoms of autism,” explains first author Catherine Wan, PhD, a researcher in the Music and Neuroimaging Laboratory of BIDMC’s Department of Neurology and an Instructor of Neurology at Harvard Medical School (HMS). “It has been estimated that up to 25 percent of all children with autism are nonverbal, but surprisingly, not much is out there treatment-wise that directly helps these children to speak.” The AMMT treatment uses a combination of singing (intonation) and motor activities to strengthen a network of brain regions that is thought to be abnormal in children with autism. “We developed AMMT, in part, because another intonation-based therapy, known as Melodic Intonation Therapy, had been successful in helping stroke patients with aphasia recover their ability to speak,” adds senior author Gottfried Schlaug, MD, PhD, Director of the Music and Neuroimaging Laboratory at BIDMC and Associate Professor of Neurology at HMS. After eight weeks of AMMT treatment (five days per week), the six children in the proof-of-concept study -- who ranged in age from six to nine and were previously completely nonverbal -- were able to approximate whole words and phrases. The children could also generalize their speech production to words that were not practiced during the therapy. “Noticeable improvements in speech were seen as early as two weeks into the treatment,” explains Wan. “More importantly, the improvements lasted as long as two months after the treatment sessions ended. “In the future, we plan to compare the effectiveness of AMMT with a control intervention,” she adds. “For these nonverbal children to say their first words is especially gratifying for parents, and represents a critical step forward in their language development.” This study was supported by The Nancy Lurie Marks Family Foundation and the Deborah Munroe Noonan Memorial Research Fund. In addition to Wan and Schlaug, study coauthors include BIDMC investigators Loes Bazen, Rebecca Baars, Amanda Libenson, Jennifer Zuk and Andrea Norton, all of the Music and Neuroimaging Laboratory; and Lauryn Zipse of the MGH Institute of Health Professions. BIDMC Contact: Bonnie Prescott Phone: (617) 667-7306 Email: bprescot@bidmc.harvard.edu "

Dynavox Maestro

I was a graduate student in 1996, and was in an elementary school in Arnold, MD to do an observation of a 4th grade class. In that class was a girl who had no ability to speak. When she first came to the school for mainstreaming, she could only scream. When I arrived for my observation, she had been provided with a Dynavox communication device and had learned to use it. She could carry on conversations with her classmates and her teacher using her Dynavox and no longer needed to scream. I thought then, how wonderful it would be if V had access to something like that. It was out of reach for us at that time. The device is very expensive and, although medicaid would pay for the device with proper paperwork, V did not have medicaid at that time. It is possible that her private insurance would have covered it, but a speech language pathologist would have needed to write a lengthy report to justify the need for the device. V was not making great progress with her speech therapist at that time, or really at any time that she was in school. Years later, I asked the school speech therapist about pursuing the Dynavox. Her response was that V needed to master less complex communication systems before she would be ready for it, and the matter was dropped. Without her support, it was impossible to get the funding necessary to obtain the device. However, in my mind, providing V with such a device that would allow her to say what she wanted or needed to say, was the ultimate goal toward reducing her frustrations. Having Lauren, our current speech therapist, begin to work with V 2 and a half years ago was the beginning of making real progress toward that goal. Lauren has been building V's picture vocabulary weekly and teaching her how to use the pictures as a means of communication. Finally, V had someone who believed in her ability to use something more advanced to express herself and we began the application process to get V her own Dynavox Maestro device. Lauren completed the report that is required by Medicaid, which confirms the need for the device and the ability of user to access the device. I had V's primary care physician write the prescription for the device, as durable medical equipment, and the Dynavox representative put together the application packet and sent it to Medicaid for approval. The process began in July, and we had our device by the end of September. The day the Maestro arrived was a really exciting day. I had waited 15 years for my daughter to have access to this. We are just at the beginning of this process now. Lauren and I have to learn to use this device and personalize it for V. V's tutor and her support staff will have to be trained to use it with her has well. We can't get our initial training meeting with the Dynavox representative until Oct 25, so we are trying to figure out how it works on our own for now. There are instruction manuals, tutorials on the device and also on the Page editing software, and recorded online classes on the Dynavox website. There is also a technical support phone number. I have found all of the resources helpful so far. I was able to get through to a human being quickly at the tech support phone number for assistance with downloading the page editing software. Courtney, our sales rep at Dynavox, has responded to my email questions quickly. Because of page editing software, Lauren and our tutor can prepare pages that they need to work with V from their home computers, save the work to a flash drive, and plug it in to the Maestro when they arrive at my house for their session with V. Right now, Lauren has the Maestro at her house to work with it, but I can still use the page editing software to personalize Vs pages at my computer. We have a lot to learn about this powerful tool, but I am hopeful that it will allow V to speak to us the way she wants and needs to. She will have to learn how to navigate her way through the device, but she learns what she wants to learn pretty quickly. She has shown promise with similar software on the ipad. The accessories include a carry case with a should strap to protect the device and minimize the chance of dropping it, a 9 hour rechargable battery, and a keyguard so that her resting hand won't disable the touchscreen. I am excited to see what a difference this device might make in V's life!

Robots Lend a Hand

I read an interesting article today about the use of robots in the classroom, for the purpose of helping autistic children learn to socialize with other children. Click on the word "share" below to read the article.

share

Stem Cell Treatment Trials for Autism

Today, I have been doing a little light reading about stem cell treatment and studies in other countries.
The following article discusses a treatment and trial in Greece:

"Wednesday, April 14, 2010
Autism and Experimental Stem Cell Treatment
Attached is part of a PR Web Press Release for a clinical trial application being submitted to Greek authorities by AdiStem Tehcnology. It indicates that a group of doctors in Greece are preparing a protocol for submission to the Greek Ministry of Health for an official clinical trial of stem cell treatment on children with autism spectrum disorders:

The stem cell technology developed by AdiStem for the past 5 years has been used and trialed by doctors around the world for the treatment of type II diabetes and its complications, osteoarthritis, and cosmetic medicine. Physicians in Greece approached the company recently with the intent to treat Yannis, the son of Dr. Solomos, a cardiologist. Yannis, a 9 year old boy, had been diagnosed with autism but not responded to standard treatments.

An experienced doctor, the father, Dr Solomos, carefully reviewed the case studies of other children with Autism who had received the AdiStem stem cell treatment in Europe and Asia, and was convinced of its safety and potential for improving the condition of his son. With the help of experienced pediatric surgeons Yannis underwent an hour long mini-liposuction procedure at Kratiko Nikaias Hospital in Athens in which 200cc of abdominal fat was harvested. The fat was dissolved, the stem cells isolated and then activated, and over 100 million cells were returned to Yannis through a standard intravenous drip. Yannis was discharged on the same day.

Just one month later, his father was astonished to hear Yannis talking to him on the phone for the first time. Dr. Solomos explained: "my boy has simply not been able to speak to me on the phone before". Asked if he’d noticed any other changes, he replied: "His school tells me his attention has improved. We experience him nearer to us and he feels us. I see a change in his ability to connect with other children. He plays with them now, which he used to avoid. He has also become more interested in letters and numbers". (This interview with Dr.Solomos was recorded on video and can be viewed at "www.adistem.com/application/autism.htm").

Present during the treatment, Dr. Koliakos, Associate Professor at Aristotle University and President of Hellenic Research Foundation Stem Cell Bank pointed out: "One month after the therapy Yannis has shown remarkable progress according to his father's observations. The child will be reevaluated by pediatric psychiatrists 3 months after the therapy to measure the extent of progress in his condition and to decide if the remainder of his stem cells, presently stored in liquid nitrogen, should be administered".

Dr.Kolaikos continued: "We're convinced about the safety of intravenous adipose stem cell therapy – if supported by accredited facilities – and our team has now applied for a large formal clinical trial on autism using AdiStem's stem cell protocol here in Greece".

Terry Grossman, M.D., stem cell researcher from Golden, Colorado said, "I was present to observe 9 year old Yannis undergo the stem cell procedure at the Kratiko Nikaias Hospital in Athens. Further studies are needed, but it is possible that stem cell therapy will soon be available as a powerful new tool to help children with autistic spectrum disorders."

There is much controversy surrounding most aspects of autism spectrum disorders including issues concerning treatment and research involving children. In this case the PR Web press release states that a trial was run with a child whose father, an experienced medical doctor, consented to his participation after reviewing case studies involving other children with autism who had received the treatment. The father, a medical doctor, also provide his observations which indicated substantial improvement in his son's condition. The procedure was performed by experienced pediatric surgeons and is vouched for by a Greek professor and researcher as being safe when administered at a proper facility. In addition to the father's observations the child will be seen at follow ups by pediatric psychiatrists for further measurement of his progress and for a determination of whether to continue with the treatment.

The procedure itself was observed by an American stem cell researcher/doctor who says further study is needed but that but it is possible that stem cell therapy will soon be available as a powerful new tool to help children with autistic spectrum disorders. The research team involved has applied for a large formal clinical trial on autism using AdiStem's stem cell protocol.

It will be interesting to see what comes of the Adistem application and formal clinical trial results. This father of a severely autistic 14 year old boy has insisted that my son receive only evidence based interventions and I will not depart from that principle. But I do not close my mind to new interventions either if they are subsequently supported by a strong evidence base. If responsible studies conducted safely, produce credible results and provide reliable evidence of new interventions that could help my son then I would want, in consultation with trusted professional advisers, to consider new interventions for his benefit.
It remains to be seen whether the AdiStem trials will provide such evidence but in the meantime this father of a severely autistic son will keep an open mind on the subject. "

Are clinical trials being conducted? Yes. Copy and paste this link to see a report on an NIH study that has been completed in China. I would like to know what the results of this study were, but this website does not give them. http://clinicaltrials.gov/ct2/show/NCT01343511

I have viewed a number of interviews of some parents in the U.S. who have taken their children to Costa Rica and Panama, and paid $15,000 for stem cell treatments there in clinics. Another parent in Australia took her son to China for the treatment and paid $35,000 for it. Desperate parents who have found relief for their children nowhere else are taking their chances now, rather than waiting for the evidence of clinical trials.

So far, my reading has only uncovered anecdotal reports by families. I will be watching to see what the studies reveal about the true benefits or lack thereof of this treatment.