One of the main concerns that people raise in regard to giving medication to autistic children, and to children more generally, is that there’s a lack of information about the long-term effects of the medication on a child. According to a new study by researchers from the National Institutes of Health (NIH) and Duke University Medical Center, two medications commonly prescribed for treating ADHD—methylphenidate and amphetamine—do not cause chromosomal damage in children. (My son briefly—very briefly—took Ritalin; while taking it, he became so focused that he became extremely anxious, lost his appetite and looked—this is the best word—skittish; we discontinued the medication after less than a week.)

From Science Daily:

The current study included 63 children, ranging from 6-12 years of age, who met full criteria for ADHD but who had not previously been treated with stimulant medications. Children in the study were divided into two groups and treated by a board-certified child psychiatrist with either methylphenidate (commercially available as Ritalin LA and Concerta) or with mixed amphetamine salts (Adderall and Adderall XR). Blood samples were taken before the medication was started to establish baseline values for the cytogenetic [chromosomal] measures that were analyzed in the study, and a second sample was collected after three months of continuous treatment. Forty-seven children completed the full three-month treatment schedule.

The researchers found no significant differences between the two groups of children with regard to age, gender, race, body weight, height, or ADHD subtype. The groups also showed very similar ADHD symptom levels at initial screening and children in both groups responded equally well to the medication.

The researchers looked at three standard indicators of chromosomal damage: structural chromosomal aberrations (breaks in chromosomes), micronuclei (small nuclei consisting of chromosome fragments produced by breakage or whole chromosomes lost from the main nucleus after the cell divides), and sister chromatid exchanges (exchanges of genetic material between a pair of identical chromosomes)

The study, researchers noted, is not to be taken as the final word on the long-term safety of using stimulant medications for treating ADHD in children. It is published in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP).

More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger, the November 18th New York Times reports. A panel of federal drug experts stated that medications like Risperdal are ” being used far too cavalierly in children” and that “federal drug regulators must do more to warn doctors of their substantial risks.”

Risperdal has been approved for treating irritability in autistic children. The New York Times notes that “in many cases, the drug was prescribed to treat attention deficit disorders,” for which it has not been approved for:

The meeting on Tuesday was scheduled to be a routine review of the pediatric safety of Risperdal and Zyprexa, popular antipsychotic medicines made, respectively, by Johnson & Johnson and Eli Lilly & Company. Food and Drug Administration officials proposed that the committee endorse the agency’s routine monitoring of the safety of the medicines in children and support its previous efforts to highlight the drugs’ risks.

But committee members unanimously rejected the agency’s proposals, saying that far more needed to be done to discourage the medicines’ growing use in children, particularly to treat conditions for which the medicines have not been approved.

“The data show there is a substantial amount of prescribing for attention deficit disorder, and I wonder if we have given enough weight to the adverse-event profile of the drug in light of this,” Dr. Daniel Notterman, a senior health policy analyst at Princeton University and a panel member, said when speaking about Risperdal.

The side effects of Risperdal are serious and include substantial weight gain, metabolic disorders, tardive dyskinesia and dystonia.

My son’s among those 389,000 children, and among those 240,000 children aged 12 and younger, who are taking Risperdal. He’s been taking Risperdal since the spring of 2004, at a time when his self-injurious behavior—head-banging—-was severe and he was on the verge of being removed from a public school special education classroom to an out-of-district placement. This is a more detailed account of what Charlie’s experience on Risperdal has been. The most difficult side effect has been the substantial increase in his appetite and the resulting wet gain; we’ve sought to address this by watching Charlie’s diet (and minimizing junk food, in particular) and by making sure he gets a lot of exercise.

I really didn’t want to put Charlie on medication. And truly, it’s not the “answer” in and of itself for addressing aggressive or “problem behaviors.” Even as he wrote the first prescription for Risperdal for Charlie, our pediatric neurologist told us sternly that Charlie also had to have behavior therapy; that we had to keep his education in mind first.

Charlie was 7 1/2 when he started taking Risperdal — since then, mostly via this post, I’ve heard of younger and younger children being prescribed Risperdal. The federal panel’s concern seems very much justified. The New York Times notes a few more reasons why, including the rise of the diagnosis of bipolar disorder in children; however:

The leading advocate for the bipolar diagnosis is Dr. Joseph Biederman, a child psychiatrist at Harvard University whose work is under a cloud after a Congressional investigation revealed that he had failed to report to his university at least $1.4 million in outside income from the makers of antipsychotic medicines.

In the past year, Risperdal prescriptions to patients 17 and younger increased 10 percent, while prescriptions among adults declined 5 percent. Most of the pediatric prescriptions were written by psychiatrists.

From 1993 through the first three months of 2008, 1,207 children given Risperdal suffered serious problems, including 31 who died. Among the deaths was a 9-year-old with attention deficit problems who suffered a fatal stroke 12 days after starting therapy with Risperdal.

At least 11 of the deaths were children whose treatment with Risperdal was unapproved by the F.D.A. Once the agency approves a medicine for a particular condition, doctors are free to prescribe it for other problems.

Panel members said they had for years been concerned about the effects of Risperdal and similar medicines, but F.D.A. officials said no studies had been done to test the drugs’ long-term safety.

No studies done to test the drugs’ long-term safety: It’s a phrase that keeps ringing in my ears; in any parents’ ears. Charlie can’t tell us how he feels taking the medications so it’s up to us and Charlie’s teachers to watch and observe, to adjust and alter. And to know that, medications can help, but they’re just on part of the picture, and a part that needs to be kept under very careful scrutiny.

A study from Minnesota look at how adults with Asperger’s Syndrome compare to others and offers a sense of hope. The study was done by Kim Klein, a pediatric neuropsychologist at the Fraser Center and Pat Pulice. From today’s CBS4.com:

“We’ve found that in some ways, this population is doing as well as their peers. They’ve been successful in obtaining employment. They’ve been successful in pursuing their hobbies,” said Pulice.

“Virtually all of the young adults with Asperger’s disorder graduated from high school, same as our control group,” said Klein. “Forty-five percent went on to college or some type of post-secondary education; identical rates to the control group.”

Klein and Pulice also noted that no one in the study with Asperger’s had reported problems with illegal drugs, alcohol or cigarettes; 25 percent of the other participants did. 69 percent of the participants with Asperger’s were found to be more likely to be treated with medication for depression, versus 39 percent of those who did not have Asperger’s. Much information about the study can be found on the Fraser Center’s website.

Autistic Teen To Violent to Handle: This is how the August 3rd Ottawa Sun describes 15-year-old Ian Reisch, who, his family fears, has recently become too violent in his behavior to remain at home. Ian’s caretaker, 26-year-old Jacob Weare, was left with a broken nose and was bruised and bloodied after Ian “lunged onto Weaver’s back.” Ian’s mother, Brenda Reisch, notes that “despite what she sees as an overwhelming and urgent situation, Ian is still at home, and she’s counting the days until he gets an inpatient assessment at the Children’s Hospital of Eastern Ontario.” Ian has also broken windows in the family’s van and car; his medication has been increased and he is taking it three or four times a day. Says his mother:

“What kind of a life is that, to be locked up in a house. We need a life. He needs a life, too. He needs help. I know this might mean he can’t live with us and that devastates me. I can’t tell you how many times I’ve been in tears.

“I love my son. He’s the most precious thing to me in the world. If this is what we have to do, it’s going to tear me apart, but I know he could potentially kill someone and I can’t put him in that situation.”

I know Charlie won’t, can’t, live with us forever, and I’d hope that when he does leave us, it would be because he’s an adult and it’s time for him move into a supported living environment or group home. Other of our friends with autistic children have placed their children in residential placements; Casdok and Susan Senator have both recently had their sons placed in such settings. Not an easy decision to make. So far we’ve been able to help Charlie at times when he’s been upset (really upset) and, lacking language to express himself, uses his whole body, it seems. I’m not sure what what will or could happen, and am thinking all the time about how important it is to make sure that we can provide the best kind of care and trained staff and living settings, and, too, to keep teaching Charlie to communicate when he’s upset, and to keep being open to ways to help him, and keep him and everyone around him safe and well.

And hoping that Ian Reisch’s family can get the help they need as soon as possible.

The decision to put an autistic child on medication is never easy for a parent to think about. When the medications in question are antipsychotics (like Risperdal) and antidepressants (like Zoloft), and when the child is disabled and has little or no language to explain how he feels while on the meds, a parent has to proceed with caution. Weight gain is a frequently reported side effect of taking Risperdal and a new study on the use of antipsychotic medications in children indicates that taking these drugs results in an almost immediate increases in body mass index (BMI) and triglyceride levels, as reported in the May 7th WedMD. John Newcomer, MD, the Washington University School of Medicine in St. Louis, presented preliminary research from a study of children taking Zyprexa, Risperdal, or Abilify at the annual meeting of the American Psychiatric Association:

So far, 50 children ages 7 to 18 have completed the 12-week study. The children suffer from a wide range of ailments, including autism and pervasive developmental disorder. They were prescribed one of three medications: Zyprexa, Risperdal, or Abilify.

“Virtually 100% of the kids exposed to the medications had some degree of increase in body fat,” Newcomer tells WebMD.

Specifically, the kids were in the 64th percentile of BMI for their age at the start of the study. By 12 weeks later, they were in the 77th percentile on the growth curve, he says. And their triglyceride levels shot up 20 points.

Preliminary results suggest Zyprexa causes the greatest changes in body fat and lipids, and Abilify the least.

Charlie started taking Zoloft for anxiety a few years ago, after we noted to his pediatric neurologist that he sometimes head-banged because he was anxious and fretful. A year later, Charlie started taking Risperdal, as his self-injurious and aggressive behaviors were increasing, and to the point that he was becoming dangerous to others, and to himself. Almost immediately after starting the Risperdal, Charlie’s appetite increased significantly and he gained a significant amount of weight, to the point that he was not able to swim as well and seemed sometimes to be physically uncomfortable from being heavier.

We went out of our way to make sure that Charlie got some physical exercise every day, such as swimming and biking, and made sure there were lots of fruits and vegetables around the house (Charlie developed his love of watermelon and frozen edamame around this time). We have been able to keep Charlie on low doses of both medications thanks to finding him a good school program, which has taught him to deal with his anxiety and worries in other ways besides self-aggression. An attempt to take Charlie off Zoloft resulted in an almost immediate increase in aggression and anxiety.

There really is no magic pill and things still happen out of the blue. For instance, yesterday morning, Jim was getting Charlie ready to catch the bus; Jim said something like “let’s put on this cool new sweatshirt” and it was bang bang bang, and I was running to get ice out of the freezer. Jim got Charlie down the stairs crying very loudly; I held the ice on his forehead and he knocked it out of my hand. We stowed the new, lightweight hooded sweatshirt from my mom in Charlie’s backpack and the bus pulled up.

“Transitioning out of the winter coat,” I said to the bus driver, who nodded (she’s noted that, despite the rising temperatures, Charlie has been insistent on wearing his heavy blue fleece coat with the hood pulled all the way over his head.)

When I got to work, I had an email from Charlie’s teacher: Red mark, crying crying. I wrote back about what had happened and another email came around 11.30: Rough day, Charlie would not seem to get something out of his mind.

As I drove home, I remembered: The night before, I had washed Charlie’s blue fleece coat. I had hung it over a kitchen chair to finish drying, which meant that the coat was not in its usual (reassuring) spot in the living room. Which meant that Charlie concluded, he no longer had his coat. I called Jim who immediately said, “Wow, I felt odd when I didn’t see the coat this morning!”

Charlie came off the bus wearing his new, lighter blue sweatshirt. I had placed his fleece coat on a chair and he went over to it and dropped it on the floor, just so. He quietly agreed to put on the new sweatshirt when we went for a walk. It has a kangaroo style pocket in the front and he walked with both hands in it, pulling down the sweatshirt so that the hood was right over his head, and his smiling face.

A study in the March 2008 volume of Pediatrics on psychotropic medication use among Medicaid-enrolled children with autism spectrum disorders noted that there is “ongoing debate” about the uses of psychotropic medications. Only Risperidone, an atypical neuroleptic, has received FDA approval to treat autistic children for aggression and irritability. The AAP study also noted that “medication use is common among children with ASDs and seems to be increasing.” The study sample included 60,641 children under the age of 21 with an autism spectrum disorder diagnosis or an Asperger syndrome diagnosis.

Most of the children in the study were 6-11 years old (45%); most were male (78%) and white (50%); and most were eligible for Medicaid because of disability (71%).

Of these children, 56% used at least 1 medication during 2001; among those who received any medication, 20% used 3 concurrently. The most commonly used medications were neuroleptic drugs (31%), then antidepressants (25%), stimulants (22%), mood stabilizers (21%), anxiolytic drugs (12%), and sedatives (3%).

While older children were more likely to take medications than younger children, it was noted that “use was quite common” in children aged 0 to 2 years (18%) and 3 to 5 years (32%). And,

Among 0- to 2-year-olds, sedatives were most common; among 3- to 5- and 6- to 11-year-olds, both neuroleptic drugs and stimulants were most common; and in the oldest 2 age groups, neuroleptic drugs were most common.

The researchers acknowledge certain limitations to their finds, due to the children all being enrolled in Medicaid:

Use among the Medicaid population may be higher than in the general ASD population because Medicaid typically has less restrictive formulary and copayments than private insurance. Also, Medicaid-eligible children may be more severely affected than the general population of children with ASDs; that 70% of children in this study qualified for Medicaid because of their disability provides some evidence of this.

As I have noted before, my son has been taking both Risperdal (Risperidone> and Zoloft (Sertraline) for a few years, to help him with aggressive and self-injurious behavior and anxiety. We tried Ritalin for a very few days; it did increase Charlie’s ability to focus, but it also made him haunted and nervous and completely suppressed his appetite. We have tried very hard to keep the dosages as low as possible and have only used these medications in combination with educational therapies. Prior to Charlie taking Risperdal and Zoloft, we tried giving him various nutritional supplements, whose effects were temporary at best in helping him with his most difficult behaviors. I consider the medications another tool to help Charlie, and one that we have to monitor very carefully, due to Charlie’s limited language and speech.

More than a few people have raised questions about the long-term effects of these medications on children and on giving a child more than one medication. I was surprised to see how many young children—-aged 0-2—are given some type of psychotropic medication. The researchers single out the “high levels of use of many different psychotropic agents, often in combination” as a concern, especially in these being given to young children “in whom the effects of these medications on development have not been well studied.” They also note a need for more studies in the use of sedatives for young children, and about the use of psychotropic medications in combination for children with autism. I would also appreciate studies about the long-term use of these medications in children—debate on this issue will indeed be going on for more than a little while.

Charlie has taken Zoloft—a selective serotonin reuptake inhibitor (SSRI), which works by inhibiting the uptake of serotonin, and thereby allows for more serotonin to be available to be taken up by other nerves—-for some years. He was prescribed it by his pediatric neurologist for anxiety that we linked to his head-banging and aggressive outbursts. Charlie is on a very low dose; an attempt to take him off the Zoloft led to immediate reports of increased nervousness and obsessiveness from his teachers. So I was curious about a recently reported study about “hyperserotonemia”—elevated levels of serotonin in the blood—in children with autism, from researchers at Vanderbilt University. From a press release:

[Researchers report that] a well-known protein found in blood platelets, integrin beta3, physically associates with and regulates the serotonin transporter (SERT), a protein that controls serotonin availability.

……. Serotonin has long been suspected to play a role in autism since elevated blood serotonin and genetic variations in the SERT have been linked to autism.

Alterations in brain serotonin have also been associated with anxiety, depression and alcoholism; antidepressants that block SERT (known as SSRIs, or selective serotonin reuptake inhibitors) block SERT’s ability to sweep synapses clean of serotonin.

Working in the lab of Randy Blakely, Ph.D., [Ana] Carneiro [Ph.D.] was searching for proteins that interact with SERT that might contribute to disorders where serotonin signaling is altered.

“Levels of SERT in the brain are actually quite low, so we decided to see what progress we could make with peripheral cells that have much higher quantities,” said Blakely, the Allan D. Bass Professor of Pharmacology and director of the Vanderbilt Center for Molecular Neuroscience. “This took us to platelets.”

In platelets, SERTs accumulate serotonin produced in the gut. SSRIs or genetic deletion of SERT in animals prevents serotonin uptake in the platelet.

“Prior research had fingered the integrin beta3 gene as a determinant of blood serotonin levels and, independently, as a risk factor for autism,” Blakely said.

In the current study, Carneiro identified a large set of proteins that “stick” to SERT, presuming they might control SERT activity. One of these turned out to be integrin beta3.

Once they confirmed a physical relationship between the two proteins, Blakely’s team investigated whether the interaction can change SERT activity. They found that cells lacking integrin beta3 exhibit reduced serotonin uptake and that integrin beta3 activation or a human integrin beta3 mutation greatly enhances serotonin uptake.

Researchers note that they don’t think it is the platelet itself that contributes to autism, but are looking at how integrin proteins (like integrin beta3) might control the brain’s serotonin transporter. Researchers also think that too much SERT activity—too much activity in the brain’s serotonin transmitter—imposed by the kind of abnormal integrin interactions noted above could restrict the availability of serotonin in the brain during a child’s development, as well as in that of an adult.

The study is published online in the Journal of Clinical Investigation by Ana Carneiro, Ph.D., and colleagues; its findings may have implications for treating cardiovascular disorders, hyperserotonemia, autism, and depression.

5-year-old Brandon Williams died on Wednesday night, March 21st, 2007. His mother, Diane L. Marsh, had given him six to seven Simply Sleeps, five to six Tylenol PMs, two chewable aspirin, and a tablespoon of Benadryl. When medics tried to revive him, they noticed signs of abuse on his wrists, ankles, and feet: It was found out that Marsh had been giving Brandon, who had autism, sleep-inducing medicine twice a day, and also been disciplining him by “tying him up, plunging his feet into scalding water and beating him with a wire hanger,” today’s Arizona Daily Star reports. An autopsy revealed that Brandon died of a skull fracture.

Marsh and another woman, Flower Nicole Tompson, 28, were arrested last year and charged with first-degree murder and multiple counts of child abuse. Thompson entered a plea agreement today in Pima County Superior Court and agreed to testify against Marsh; Thompson acknowledged that she never called authorities despite seeing Marsh abuse Brandon.

This is too sad and more than reminds me of why we need to focus on helping to improve the lives of autistic children and persons now, over and above sometimes contentious questions about what causes autism.

Children with special health care needs—-including autism, ADHD, asthma—are not consistently getting the care recommended by the government, and the care and services they receive varies from state to state. Go here to see state-by-state details of the National Survey of Children with Special Health Care Needs. From the February 28th Science Daily:

The survey is especially significant because it finds that more than 10 million American children have a special health care need – that amounts to one in five households with children younger than 18. [my emphasis] While states perform well in specific areas, no state is providing all of the recommended care to the majority of their children with special health care needs. …….

- While nearly all children with special health care needs have some type of health insurance, 3.3 million are underinsured. The health benefits packages for one-third of currently insured children with special health care needs do not adequately cover needed services or have reasonable co-pays.

- Only one-third of children with special needs who are Hispanic or who are living below the federal poverty level get coordinated and family-centered care from their health care providers.

- Out-of-pocket medical costs exceeded $1,000 for 1 in 5 children with special health care needs during 2005-06.

- Family members of nearly 2.5 million children with special health care needs had to cut back or stopped working because of their child’s health conditions.

Those last two points more than ring true for us.
I

Should Child Protective Services of San Diego have removed 17-year-old Nate Tseglin from his parents, Ilya and Riva Tseglin, after a teacher reported seeing self-inflicted scratches on Nate’s body and complaining about the doctor-approved arm restraints that his parents used? Nate has been in the Fairview Developmental Center (formerly Fairview State Hospital) in Costa Mesa, OC Register writer Steven Greenhut noted in a February 17th column, and has been given medication and suffered seizures; his parents fear that he may have suffered more.

Writes Fingerhut:

The forced removal came after the Tseglins came to loggerheads with the government over Nate’s proper treatment. The parents are opposed to the use of psychotropic drugs and argue that Nate has had strong negative reactions to them. They point to success they’ve had with an alternative, holistic approach that focuses on diet and psychiatric counseling. The government disagreed, so it took the boy away from home and initially placed him in a group home – where he had the same negative reaction to the drugs that his parents predicted would happen.
……..
The details are complicated and discouraging. But, essentially, the parents were cut out of any decision-making regarding their son. They were given only short visits with him. After he ran away from the group home, the government transferred Nate to a mental hospital. The Tseglins say the drugs the hospital gave Nate caused him to have a “grand mal” seizure, and his health has continued to deteriorate while he languishes in a government mental facility. When they visited him over the summer, they found his face swollen. He faded in and out of consciousness and was suffering from convulsions. They believe he has been beaten and are worried about sexual abuse, given that he is housed with the criminally insane.

The Tseglins claim Child Protective Services has told them they have the “wrong set of beliefs” and even threatened to force them to undergo court-ordered psychological evaluation. The agency at one point suspended the parents’ visitations as a way “to assist them in coming to grips regarding their son.” The Tseglins, as former citizens of the Soviet Union, have good reason to be fearful of the authorities. But they tell me that they experienced nothing of this sort in the former communist nation. If their descriptions are correct, then the Soviets weren’t the only ones who know how to create a totalitarian bureaucracy.

A few years ago, when my own son was having a lot of self-injurious and violent behaviors, we had been told to use a “basket hold” to prevent him from hurting himself; the teachers at school also used this. Sometimes the efforts to hang onto Charlie did result in bruises on his arms and it got to the point that everyone started to document when what restraint was used and what resulted, and that was before things got really ugly between us and the school district.

What happened to the Tseglins is a horrible scenario that more than a few parents have feared—–and what is happened to Nate Tseglin, separated from his family and his familiar environment, is beyond frightening.