Frumpfighter

Posts Tagged ‘autism

Ritalin – strike one; Strattera – strike two; and now on to Risperidone to try to tone down my son’s anxiety, Attention Deficit Hyperactivity Disorder and autistic tendencies.

My son, Sage, had a big week losing a front tooth and getting his first buzz haircut. Here he is with his Daddy, my husband, Jeff.

My son, Sage, had a big week losing a front tooth and getting his first buzz haircut. Here he is with his Daddy, my husband, Jeff.

After explaining to the child psychiatrist that the Strattera (atomoxetine) did somewhat lessen Sage’s hyperactivity but altered his personality, she immediately said to discontinue its use. When we first decided to use Strattera in early March, the doctor said the side effects may include depression, insecurity and mood swings so we needed to closely monitor him.

Sure enough, shortly after Sage started the doses, his kindergarten teachers began to recognize he was more argumentative and just not his sweet, happy self most of the time.  At home, he started crying for no reason. We thought he just needed to adjust to the new medication. But after two months, and one dosage increase, we knew it wasn’t the right treatment for him.

A little to our surprise, the doctor readily agreed. She said the typical steps of treating ADHD and autism spectrum disorders include first trying stimulants like Ritalin and then antidepressants like Straterra. If those don’t work or have negative side effects (Ritalin use was stopped after a couple of days due to aggression), the next step is Risperidone or Risperdal.

Risperdal is an atypical antipsychotic drug used to treat bipolar disorder in adults and autistic disorders in children. The doctor explained that it is used in children with Pervasive Development Disorder-Not Otherwise Specified, or PDD-NOS. Sage was diagnosed with PDD-NOS in 2005 when he was 3 ½ and the child psychiatrist he is seeing now recently reaffirmed the diagnosis.

All these medical terms get confusing to me, to the point while I was asking the doctor questions, I confused her. She explained that patients with PDD-NOS have characteristics of those with classic autism, but not all. Impulsivity and hyperactivity are common characteristics. I did know that.

What I remained confused about was why Sage was not diagnosed with Asperger’s Syndrome, a high-functioning disorder similar to autism. In 2005, specialists at the University of Iowa Children’s Hospital could not diagnose him with Asperger’s because he was not verbal enough at the time. I assumed that was still the case, but his current doctor said he was too communicative to have Asperger’s. He can carry on a conversation and look you in the eye – which is typically lacking in those with Asperger’s or classic autism. That was good to know.

So tonight we begin the new regimen. The biggest side effect is drowsiness so we will give him a small dose with supper. After a week, we will add a morning dose to the evening one and see how that goes.

Do you have experience with Risperdal or Risperidone? Please e-mail me at ajh1109@mchsi.com

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Today was as heartbreaking as any I’ve had in the 6 1/2 years I’ve been a parent. My son, Sage, has had his share of doctor’s appointments, therapy and difficult moments in the journey of being autistic and recently diagnosed with ADHD and anxiety.

He does have awkward social skills and tends to run from one place to another so quickly, you have to wonder what is going on that brilliant, yet busy, mind of his. But he is a sweetheart and loves all people without prejudice.

This morning when I saw his little neighbor friend outside, I told him to go out and play with him. After a long winter of being cooped up in the house, he was excited to see his friend again. Last fall the boy, who is probably 4 or 5 years old, and Sage were the best of buds.

But over the winter, the boy changed and Sage remained the same. His little friend is now buds with his older brother and his friend, who just last fall ignored him. Now it seems the threesome is a little too cool to play with Sage. Don’t get me wrong, I understand Sage can be difficult to play with as he tends to be in his own world sometimes.

But that does not make him devoid of feelings and the need for friendship. Each time Sage approached the boys today, they told him to go away. Even his best bud from last fall. Happy-go-lucky as he is, Sage went and rode his bike in the neighbor’s driveway.

I’m sure I am taking his rejection much worse than he is. I know this type of behavior is part of growing up, whether you are autistic or not, but I am worried that someday his cheerful spirit will be crushed. While the other boys have obviously changed, I hope Sage will not.

Here is a column my husband wrote about what is “normal” after he spoke to a class about Sage: http://watchingwheels.wordpress.com/

It was almost three years ago my son Sage was diagnosed with Pervasive Development Disorder – Not Otherwise Specified, which falls somewhere on the higher functioning end of the autism spectrum.

Sage learning how to walk at 20 months.

Sage learning how to walk at 20 months.

Then 3 ½ years old, Sage had always shown signs of developmental delays. He didn’t roll over or sit up the same time as other infants did, he couldn’t feed himself on his first birthday as his daycare-mates easily used forks and spoons to devour the cake I made, he didn’t walk until he was 20 months old and only said a few words by his second birthday.

By the time he was 3, it was evident his behavior was different than his peers and his social skills were awkward.  After a series of tests at University of Iowa Children’s Hospital, the doctors determined he had PDD-NOS. They said his case couldn’t be classified as Asperger’s because his speech was so delayed. This irritated me because what did they know about him or his speech after only a few hours?

Although I was in denial, I did agree to speech and occupational therapy. My husband, Jeff, has always been better equipped to handle Sage’s issues (he’ll be a great special education teacher once he complete his master’s degree this fall). It took quite a bit of persuasion from Jeff for me to agree to put Sage in special education preschool in 2007. In my mind, he was just a little behind and didn’t belong in that class.

But the individualized attention was good for him and now he is in kindergarten – on schedule. He is mainstreamed with several special education teachers working with him throughout the day. He is extremely intelligent – he has known his letters and numbers for some time now and can tell you the capital of any state. However, his inability to focus is detrimental to him and his classmates.

A couple of months ago we took him to our general practitioner for an evaluation. It is obvious to anyone that Sage has Attention Deficit Hyperactivity Disorder. One of the most common treatments for ADHD is Ritalin, a stimulant. After three days and a minor increase in the dose, Sage became aggressive, hitting his head against the wall and taking swings at teachers and us. The Ritalin was stopped immediately.

Today, at the referral of our general practitioner, we took Sage to a child psychiatrist for further evaluation. Doctor appointments or any activity that requires waiting are always a challenge because of Sage’s hyperactivity. He is usually the loudest, most active child in the room and today was no different. I do get tired of the perceived dirty looks but I realize I’m probably more sensitive to it than I need to be.

Once in the doctor’s office (yes, there was a black leather couch), I was still tense about Sage bouncing off the walls and touching everything. He was in full throttle, which was good for observation. The doctor asked us questions and watched Sage play. At one point, Sage stopped what he was doing and realized we were talking about him. The look on his face nearly broke my heart.  He may be autistic, be he is very sensitive and empathetic.

Sage playing piano at Grandmas at Christmas 2008.

Sage playing piano at Grandma's at Christmas 2008.

The doctor concluded that yes, he does have PDD-NOS and is still not verbal enough to have Asperger’s. He also has ADHD like we suspected. But because he also has anxiety, she said, stimulants like Ritalin have an undesired affect on him. She suggested Strattera for his ADHD. She also suggested eventually putting him on Prozac, an anti-depressant. Again, my heart sank.  I have been diagnosed with clinical depression and have been on a form of Prozac for nearly 10 years. Did I do this to him? When I was pregnant, all I was hoping not to give him was my crazy curly hair. Now he has my anxiety?

We told her about Sage’s intelligence and his love for music, especially the piano. She could tell he is a funny, sweet young boy who, with continued therapy, has great potential.

With time he should develop more skills and learn to focus on pace with his peers. When I asked her about eventual independence, she said that wasn’t outside the realm of possibility. That was music to my ears.

Children of all abilities were given a boost Thursday when a special court ruled that parents claiming certain vaccinations caused their children to be autistic are not entitled to compensation.  

There has been a belief among a large segment of those affected by autism (and their lawyers) that the MMR (measles, mumps and rubella) vaccines and thimerosal-containing vaccines can combine to cause autism. This has caught fire with celebrities like Jenny McCarthy speaking out on the topic.

Don’t get me wrong, Jenny McCarthy is a wonderful advocate for autism awareness. The dedication to improving her son’s life is inspiring. But it has been a concern among some of us with autistic children that all the publicity surrounding the vaccine debate would cause parents to forgo necessary vaccinations.

When my son, Sage, first starting showing developmental delays when he was an infant, I was convinced it was because I took Prozac and thyroid medication while I was pregnant. He was also born five weeks before his due date and had a rough delivery. The umbilical cord was wrapped around his neck and his first Apgar score was 1. He was immediately put on oxygen and his score increased to 9 within minutes.

My doctors then and now have told (not necessarily convinced) me that none of these factors are related to Sage’s delays. He has received all of his vaccinations on schedule and I have never believed they caused him to be on the autism spectrum. His father and I are not sure why our son has always been developmentally delayed or why his social skills have put him on the autism spectrum. We are more focused on getting him therapy and preparing him to function in the real world.

According to an Associated Press story, here are some points in the ruling:

  • The judges in the cases said the evidence was overwhelmingly contrary to the parents’ claims – and backed years of science that found no risk.
  • “It was abundantly clear that petitioners’ theories of causation were speculative and unpersuasive,” the court concluded in one of a trio of cases ruled on Thursday.
  • The ruling was anxiously awaited by health authorities and families who began presenting evidence nearly two years ago. More than 5,500 claims have been filed by families seeking compensation through the government’s Vaccine Injury Compensation Program. The claims are reviewed by special masters serving on the U.S. Court of Claims.
  • “Hopefully, the determination by the special masters will help reassure parents that vaccines do not cause autism,” the Department of Health and Human Services said in a statement.
  • To win, the families’ attorneys had to show that it was more likely than not that the autism symptoms in the children were directly related to a combination of the measles-mumps-rubella shots and other shots that at the time carried a mercury-containing preservative called thimerosal.
  • “The petitioners have failed to demonstrate that thimerosal-containing vaccines can contribute to causing immune dysfunction,” a judge wrote about one theory that the families proposed to explain how autism might be linked.

This issue is certainly not going to go away with this ruling. There are people passionate about it on both sides. What do you think? Please comment or e-mail me at ajh1109@mchsi.com

Before I became a parent I was one of those who questioned others’ parenting skills and had no patience for less than little angels. All children were created equal weren’t they?

I also jumped on the bandwagon that diagnoses like Attention Deficit Hyperactivity Disorder, better known as ADHD, were just a crock and cop out for bad kids.  And prescription drugs like Ritalin were just a way for pharmaceutical companies to make a buck. I fell into all of the one-sided arguments about lazy parents who couldn’t handle their little brats so they sedated them.

My beautiful baby a day after he was born.

My beautiful baby a day after he was born.

And then in November 2002, five weeks before my due date, I became a mother. Sage Jeffory Holmes was the most beautiful baby I had ever seen. Yes, he was a little yellow-orange due to jaundice and had a minor eye infection, but he was perfect in every way to me.

 Within a few months it became evident he wasn’t developing on pace with children his age. Eventually, he rolled over, sat up, talked and walked. All of these milestones were way behind, but it was a major accomplishment when each one finally happened.  

When we took him to events like Easter egg hunts, kids’ events in the park and even trick-or-treating, it became more evident he didn’t have the same interest or abilities as other children. He liked to do his own thing. Rather than playing with the other kids, he would rather look at the air conditioner. When he got stuck on something, it became an obsession – like air conditioners or fans.  He didn’t engage in conversation, but rather talked about his current obsession.

After testing and evaluation at the University of Iowa Children’s Hospital in 2006, he was diagnosed with Pervasive Development Disorder – Not Otherwise Specified, or PDD-NOS, which falls on the autism spectrum. I’ll never forget when we were leaving the clinic after a long day of testing, one of the nurses said to me, “He’s a handful. Good luck, you’ll need it.” Gee, thanks.  I was hoping for help, not luck.

Through all of his developmental delays and social difficulties, it has been evident he is a sweet, intelligent young boy. He learned his letters and numbers at a rapid rate. He memorized all the states and capitals and could point out any of them on a map. Even Montana. He loves music and has taught himself how to play piano. Once he hears a song, he plunks it out on one of his electric keyboards.

Sage composing a song on one of his keyboards.

Sage composing a song on one of his keyboards.

So, it was never a question of whether he would attend school on schedule. Last year, he was in special education preschool and continued to learn basic skills. This year he is mainstreamed into kindergarten with the help of several special education teachers. He is still learning at a strong pace, but his inability to focus and stay on task is interrupting his class and his own learning.

We took him to the doctor last week for another evaluation and we all agree he more than likely has ADHD. The doctor explained to us how Ritalin works, possible side effects, and the possibility it might not be effective given his other delays. But we’re going to give a shot. If it will help him focus and have a more productive life, we can’t deny him that because we might be criticized because Ritalin is not popular with everyone. Because in the end, it is not about everyone else or his teachers or parents. It’s about him.

It’s amazing how some people are the perfect parents – of somebody else’s child. That kind of thinking has been going on since the beginning of time but has only been exacerbated with the Internet and its endless stream of information.   

I’ll admit when I heard John Travolta and Kelly Preston’s son, Jett, died suddenly last week, I did a search on the family. I wasn’t aware of Jett’s medical problems and immediately became sucked into the comment sections of articles on them. Many of the entries and comments had varying versions of how Jett became ill as a toddler. His parents said he contracted Kawasaki disease – an illness that causes inflammation of the blood vessels – from exposure to carpet cleaner.

Others, however, said Jett had autism, a development disorder that affects the ability to communicate. This is where the story gets complicated. The Church of Scientology, of which John and Kelly are devout members, doesn’t recognize autism or any other “mental illness”, therefore they never had their son treated for autism.

When my son, Sage, was 3 months old, we had his hearing and vision tested due to concerns from his day care providers. His hearing was fine but he was eventually diagnosed with optic nerve hypoplasia – basically a genetically small optic nerve. As the next few months went by, it became obvious he wasn’t developing like other infants his age. He was signed up for infant/toddler services and was in therapy. Over the next several years, doctors had suspected everything from poor vision to cerebral palsy.

After a series of tests in the summer of 2006, when Sage was 3, the University of Iowa Children’s Hospital diagnosed him with Pervasive Development Disorder – Not Otherwise Specified. Depending on where you look, autism is a part of this category or it falls on the autism spectrum. Although it was not really a surprise, and we had been dealing with Sage’s developmental delays since he was a baby, the diagnosis was still devastating. So many questions, so many worries for the future.

 Autism is difficult for society to understand. Many afflicted with it look as normal as any other child – Sage is one of the most beautiful children I have ever seen. Jenny McCarthy summed it up perfectly in the forward of her book “Louder Than Words” (Penguin Group):

“When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support. When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle.”

My husband and I have had plenty of unsolicited suggestions on how to deal with our son. Discipline him more. Take him to more specialists. Put him on a different diet. And the perennial favorite, “If he were my child…”

I’m not rock solid about a lot of things in life, but I will guarantee that nobody loves that child or cares about his well being more than his father and me. I would like to think most parents, including John Travolta and Kelly Preston, feel the same way about their children.

Sage, my beautiful boy

Sage, my beautiful boy

I’m not going to comment on Scientology other to say that early intervention and therapy have helped my child tremendously in the past three years. But to those making comments about Jett Travolta’s death and the way he was raised, take a moment to think how you would feel if you lost a child. I, for one, can’t even imagine the pain.

It’s no accident that one of the most honorable fictional characters is Atticus Finch from Harper Lee’s “To Kill A Mockingbird.”  His line, “You never really understand a person until you consider things from his point of view, until you climb inside of his skin and walk around in it,” is one that most students learn in junior high or high school. You learn it for a reason. Follow it.


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