Posts Tagged ‘Pervasive Development Disorder Not Otherwise Specified’
Round 3 of ADHD/autism treatment
Posted on: May 20, 2009
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.
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
It wasn’t too long after my son, Sage, was born in 2002 that his day care providers alerted my husband and me about delays in our son’s development.
He didn’t respond to sights and sounds like a typical 4-month-old. So we had his hearing (which was fine when tested right after birth) and sight checked, including a MRI to check for any abnormalities in his brain. The hearing and MRI results came back fine but it was discovered he had a small, gray optic nerve. He was diagnosed with optic nerve hypoplasia which can range from mild to debilitating.
Soon after, we were referred to an early intervention program through Kansas Infant-Toddler Services. Thus began my dread of evaluations. In my mind, my baby was just a little behind in some areas and everyone was blowing things out of proportion. In one of his evaluations at day care, a teacher’s assistant said he didn’t smile at people or show affection. Are you kidding me? He always smiled at me and was a cute, cuddly baby.
As the evaluations continued, so did my annoyance. At 13 months, his displayed skills of a 6-month-old. At 18 months, he was more like a 10-month-old. I felt once he finally learned how to walk, things would be fine. It just took him a little longer to learn things.
When we moved to Iowa in 2004 when Sage was 18 months old (and still not walking), we were referred to Grant Wood Area Education Agency for early childhood services. Within a couple months he started walking and I didn’t think Grant Wood’s services were longer needed. But they were. Sage still had delays in his speech as well as gross and fine motor skills. The fine folks at Grant Wood worked with him and made sure we knew about other available services.
A year later when Sage was diagnosed with Pervasive Development Disorder – Not Otherwise Specified on the autism spectrum, we weren’t all that surprised. Jolted, yes, but not surprised. The evaluations kept coming and kept breaking my heart. Now he wasn’t just months behind in certain areas, but years.
A year ago while preparing for Sage to enter kindergarten, my husband and I went through our first official IEP meeting. Mandated by the U.S. Department of Education, the Individualized Education Program is designed to fit the needs of each student in special education. There were five or six people at the table discussing my baby. All of these professionals are good, caring people but in that setting it seemed like I was sitting in front of a firing squad listening to everything that was needed for my son’s special needs.
Last week we met with almost the same group of people to discuss Sage’s progress in kindergarten and prepare his IEP for next year. I no longer felt like I was in front of a firing squad. I don’t know if that was because I knew everybody in the room or by now, I am getting used to these evaluations. I was pleased with his progress. He is at grade level academically but still behind socially and behaviorally. Since I am quite aware of the second part of that statement, I’ll focus on the first part. Grade level.
Trust me; I know these evaluations are tough. Nobody wants to hear their 5-year-old has the skill level of a 2-year-old in some areas. But if somebody is trying to tell you something about your child, listen. And then let them help you and your child. Because being at grade level by the time they are in first grade is a lot better than ignoring the problem or waiting too long.
- In: ADHD | Autism spectrum
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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.
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 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.
- In: ADHD | Autism spectrum | Parenting
- 2 Comments
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.
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.
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
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.
Frumpfighter 
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