Medicating Autism – Looking for a Cure

So, I think I had the best news from my son’s psychiatrist- he “discharged” us! Four doctors and six years later, my son’s doctor has deemed him medically untreatable. My husband wants to go doctor shopping so we can get some prescription, any prescription to treat just one, any one of his disorders. Dr Aldous is the first and only doctor who has the integrity and honesty to tell us there is no magic pill to treat my son’s myriad complex problems.
 Jack had his first prescription – Fluoxetine (generic name Prozac) when he was about ten. It was to treat his anxiety which was preventing him from learning, doing basic activities like participating in birthday parties, going to the movies and all the typical things a boy enjoys doing.  Today still, Anxiety, like an unseen big cloud grips and cripples him. His first psychiatrist, a highly qualified Stanford trained doctor prescribed 10mg of Fluoxetine explaining that it’s a very safe drug which has been in the market for many years. And as an intern in Stanford some thirty years ago, he had used it on very young children, crushing the pills and putting in apple sauce. He said treat the anxiety first, and then the ADHD. We liked his approach except for one small problem. Within three weeks of taking the medication, Jack had multiple reactions – first he became aggressive and suicidal – climbing up a twenty feet fence and threatening to jump down when he was bullied in an after school program. Then he had seizures, I called the doctor and was told to increase the dosage. Since it felt counter intuitive as these problems did not exist before the medication, I disobeyed doctor’s orders. Then a day or two later he was writhing and screaming in pain from a terrible erection. Dr J assured me that none of these is from the medication as he has been prescribing it for years without any such side effects. Days later, Jack had unexplained bruises on his thighs. Dr J asked that we bring Jack to the hospital immediately to get him tested for blood disorder for the bruises. It wasn’t the medication, he insisted, just continue and increase the frequency to twice a day.
Two ER doctors in Rady’s Children’s Hospital examined Jack and both agreed it was not a blood disorder, and suggested we stopped the Fluoxetine and see if the bruises went away. And yes, almost immediately, all of those pharmaceutically induced problems went away. We never went back to Dr J again.

Three years later, Jack by now thirteen, added new problems to his existing ones : Tourettes and mood and anger issues stemming from a combination of PTSD and growing pains, (The prevalent disease among entitled teens.) Dr M prescribed Guanfacine (Tenex) a blood pressure medication commonly used to treat anxiety which he thought could be causing the Tourettes. What a relief when Jack didn’t have any reaction to it. It didn’t help the Tourettes, even when the dosage was doubled, but we continued as we felt he needed some kind of medication as not medicating was not helping him. To treat the mood and anger, Jack was prescribed Serotonin, supposedly to calm him down. When I questioned Dr M about the dosage – why a 100lb teen was prescribed such a heavy dose – double the dosage than his 210lb father. Dr M was offended by my question, practically yelled at me for questioning him as he “doesn’t make mistakes” and walked me to the door.  It is intimidating asking a doctor questions and I meekly explained that as a mother, and with Jack’s previous reactions, I needed to understand the risks and benefits of these psychotic drugs. This is not ibuprofen but potentially mind altering drugs.  In any case, it was short lived as Jack suffered side effects – chest pain and tightening of his throat causing breathing difficulty. So what is a doctor to do? Well, let’s try more powerful drugs. So Dr M prescribed Risperidone, an atypical antipsychotic, used to treat schizophrenia, bipolar disorder and irritability.  This caused Jack’s vitiligo to break out on his face and sun sensitivity. A month later, with no perceivable improvement in mood or behavior, we read about a class lawsuit against the pharmaceutical company which manufactures Risperdal. Young boys and adolescents on the medication were developing breasts.  Defeated, we stopped the medication and stopped visiting Dr M. On top of all his issues, it’s probably not a good idea for my son to grow breasts.

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Meanwhile, Jacks behavior escalated and we were recommended a Developmental Pediatrician, Dr D. First thing we learned from Dr D was that Fluoxetine and Serotonin are both SSRI (Selective Serotonin Reuptake Inhibitor.) In simple terms, if someone has a reaction from Fluoxetine, he should not be prescribed Serotonin! Dr M who never made mistakes had made a mistake.  So, Dr D suggested Ritalin to control the ADHD because if he can focus and stay on task, maybe he will be less impulsive, anxious, angry if he felt his world is not spinning out of control. Unfortunately, the Ritalin didn’t help his ADHD and worsened his Tourettes. I did mention that none of his conditions have improved with the medications, they only got worse, and new ones got added. Dr D then proposed Abilify, another atypical antipsychotic drug, which I was uncomfortable with given Jack’s history with meds, but nonetheless agreed. What else could we do? After a month, we saw no difference with Jack and when we were told it wasnt covered by our new insurance, that it would be $890 for refill for a month’s supply of 30 pills, (Obamacare is overrated and could have killed my son if he had needed the drug for his illness,) I made the decision to discontinue the Abilify. If my son had to be on powerful mind altering drugs, the benefits must outweigh the risks. And costs. We were still living with an escalating pattern of mood, anxiety and anger issues coupled with Oppositional Defiance Disorder. We stopped seeing Dr D when she lectured me about my use of the term “side effects”. They are not to be used interchangeably and please do not call “reactions” side effects. I wonder if my son developed breasts, bruises, seizures, vitiligo, what term should I use? Side effects or Reactions?

 Then came Dr Aldous. He was different- first, instead of his own private practice, he works with patients referred by the county through a family and youth services agency. This means he didn’t have a fancy office in an expensive zip code with mood lighting, leather couches, artwork and plants. He was free to us, paid by the county, and I am sure he wasn’t billing them $300 an hour. He worked in a bare bones office in a not-so-nice part of town, to be close to his patients. Second, he was the only doctor who truly read my son’s files and notes, citing information from it during our consultations and third, we had conversations. He probed, allowed me to ask questions, and carefully and patiently addressed my questions and concerns. For the first time I felt someone listened. All other doctors were keen to to put pen to pad, try the next drug on the list, give us their bill, and move along to their next patient. With Dr Aldous he listened first – to Jack’s history, our challenges, and reactions to all the meds he’s taken. He was treating him by understanding all of his problems, not just write another prescription in the hope it works. After several visits and months of consultation, he finally determined Jack’s problems to be more behavior related, which required other approaches like therapies and parenting coaching etc.  Since there is no meds to treat his behavior we were discharged. It somehow didn’t feel satisfactory since we are still looking for a cure, but that cure does not exist in a bottle for my son. At least not for now.

 

Lessons About Docs and Drugs

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Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

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The 40 year journey

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Moses probably has as much name recognition as Taylor Swift, across all continents and varying demographics.  That’s where the similarity ends.  He does not command her stratospheric popularity, fortune, and beauty, though some 3,000 years after his death movies are still made about his life.  The story of Moses’ life saved my life.  The drama, forces of good versus evil, fight for liberty all make for box office movie material.  But it is the one about God’s resounding goodness and greatness that speaks to me deeply.

It is hard to think about God’s goodness when raising a child on the autism spectrum.  It seems like an unrelenting journey, and as a parent, I am terrified that the window is closing in as he is nearing adulthood yet not nearly as independent as he should be.

My faith certainly offered some comfort, though intermittently, it didn’t offer answers so I stopped asking the questions. And at some point, I stopped praying as it seemed pointless.  Because all experts and medical professionals will tell you there is no cure for autism.  And God seems to agree with them.

It wasn’t until I studied the life of Moses in the Old Testament that I found hope, relief and yes, yes, yes, answers!  These are not the same as “answered prayers” – the way I had prayed for things to turn out.  I don’t care what popular culture has to say about religion or authenticity of the story.  I found hope and answers where no worldly doctors, (we went to psychiatrists, developmental pediatricians) therapists, psychologists (we tried psychotherapy, cognitive therapy) or gurus could offer. And it is my blog, so I get to say anything I want.

When the Jews fled Egypt, the most direct route from Egypt to Canaan (God’s Promised Land) was along the coast, along what is today called the Gaza strip.  It could have taken days or weeks, but God led the Hebrews a long way that took them 40 years after they had already spent 400 years as slaves in Egypt.  That is somewhat more than a generation, there must have been many who never saw freedom, who lived their whole lives as slaves, wandering what happened to God’s promise to Abraham, Isaac and Jacob. My first lesson is that God is taking me on a 40 year journey.  I am one of the Jews, and like them, God is using our hardships to work powerfully on our behalf.

It is estimated that there were 2 million people including women and children who left Egypt.  It was a terrible, difficult journey, way larger than the Donner party. We are talking a whole race of people and their livestock.  There was no humanitarian aid and human rights group advocating for them when they were pursued and slaughtered by enemies.  It was an exodus of a nation, on a scale unmatched by anything we are seeing today. They were counting on Moses, whose faith was being tested, as much as that of the people he led.  Yet on EVERY occasion God provided, He heard Moses’ prayers and his people’s desperate cries.  At Marah, where the water was bitter and undrinkable, God gave a decree: “if you listen carefully to the Lord your God and do what is right in his eyes…I will not bring on you any of the diseases I brought on the Egyptians for I am (Yahweh-Ropheka), the Lord, who heals you.” He made bitter waters sweet, he led them to Elim, where there were twelve springs and seventy palm trees.  It reminds me that even when I seem to be “in the desert,” God provides green pastures and sweet relief.  He wipes away the tears from my eyes.  The lesson for me is that the burden of my life’s journey is not on me, but on God.

I need to stop thinking about my destination, but live and trust daily.  My life has not gone as planned.  It doesn’t mean there is no plan.  Raising Jack is my 40 year journey, adventure – and God’s plan.

Follow me as I figure out what God’s doing with our lives —

 

Footnote: some information taken from Bible Study Fellowship notes

 

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

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Taming the Worry Monster

frightened-childIt was my son’s psychotherapist who first identified Anxiety as Jack’s biggest problem when he was in second grade.  He disagreed with the teachers that Jack was ADHD, explaining that one of the reasons he couldn’t focus in school and was acting out when the smallest, seemingly inconsequential thing went wrong was that he is constantly living on the edge, his mind filled with fear.

 

In Kindergarten we should’ve seen the early signs when he was afraid to get up from the automated flush toilet because the noise frightened him.  In first grade, he was punished for constantly munching on some cereal which he would hide in his pockets, (we later learned that the munching was for self soothing), he had to be forewarned about fire drills and put on his noise cancelling head phones.  At birthday parties at Chuck e Cheese, my boy was crawling under the table screaming when Chuck E came around and sang happy birthday.  It was embarassing and worrying for us that my little boy was crying when other kids were having fun… His life was a constant, unrelenting stream of problems all linked to his anxiety which we didn’t understand at that time.  He travelled everywhere with his security “blanket”- the Star Wars and GI Joe figures were cute, and quite normal, but these were replaced by a spatula which he carried everywhere, even on 20 hour flights to Asia where it (literally) never left his side.  God forbid he were to lose that spatula, so that humble spatula became as important as our passports, safeguarded by two very vigilant adults.

I first read this article a year ago, written by an adult with autism.  http://www.psychologytoday.com/blog/worrier-warrior/201404/first-person-perspective-anxiety-and-autism

Dr Catherine Alvarez is a mathematician, and founder of Math Wizard, student of psychology, blogger, and homeschooling mom of two great kids.  She discusses anxiety in Autism, where she explains that anxiety can be consuming and handicapping, preventing a person from learning or even trying.  Before all else, comes the Acceptance.  I wished someone had told me this twelve years ago, as there was too much pain, heartbreak and judgement that could have been avoided.  

“It’s so important to deal with anxiety before trying to address other issues or expect someone to respond to teaching.”
 
Look beyond the child’s behaviors which often seem irrational, embarassing, inexplicable, socially unacceptable, and remember that you have a frightened child, unable to explain what is troubling him.  You can’t cajole or punish away his anxieties, but you can work with him to tame those worry monsters, slowly, one at a time.  You won’t be  able to tame all of them, but every tiny little monster you can tame brings them a little bit of comfort and safety, which then frees them to learn.
 

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

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My Brother Andrew

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I am 17 years old, and a junior in high school. I live with my brother, Andrew, who is 21 years old. Andrew is autistic.  Watching him grow up has been great because I have seen him grow physically and mentally. There are times where you think the situation will not change, such as occasional fits, then he grows out of it.

I was inspired to make this video because of the person Andrew is. He is a good person, Autism or not. He is who he is partially because of his Autism, It should be motivational to others because you can see his growth, and that should give hope to those who have a loved one with Autism, knowing they will grow up and mature.

It made me very happy to put this video together and get it into the eyes of others. Not so they know just who Andrew is, so they know how Autism affects people. Autistic people are not less than anyone else, just different. It can be challenging for me and my family sometimes to watch him struggle but we motivate him to overcome his obstacles. Having a sibling with Autism can be difficult, but it made me the person I am. He has helped me become a very patient and understanding person. I made this video just over a year ago. It happened to be Autism Awareness month. I was not assigned to make this as a school project, I simply wanted to educate people about what Autism is.

People should be aware that people with Autism are still people, and can grow and overcome challenges just as much as anyone else. They just need a push in the right direction, and push them as much as they can take it. If they want to improve, it will happen.

The challenge for me in producing this video was how I was going to get the message across. This was the first video I have made about Autism. This is for Andrew, and everybody else with an “andrew” in their lives.

Also Read: 10 Things Every Child with Autism Wants You to Know

Evan Gering

Evan is 17, a junior in high school, and lives in California. This was the first video he has made about Autism. He's had experience editing at the Motion Picture Television Fund's Channel 22, having spent over 400 hours there, learning about video production. This is his first video production, using the skills he had acquired while volunteering there.

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Prominent Genetic Scientist and Pediatrician shares Findings on Causes for Autism

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There is so much information about autism that it’s often overwhelming, so I try to post content that I think are differentiated, and not likely found on other autism websites.  This presentation made by Dr Wendy Chung at a recent TED 2014 conference, offers the clearest, best explanation yet on a complex subject : What Causes Autism?

Dr Chung, pediatrician, geneticist and researcher, is Director of the Clinical Genetics Program at Columbia University Medical Center in New York as well as the university’s fellowship program in clinical and molecular genetics. She is the principal investigator of the Simons Variation in Individuals Project (VIP), launched by the Simons Foundation, SFARI.org’s parent organization. The project aims to identify and study individuals with an autism-associated deletion or duplication on chromosome 16p11.2.  Of her impressive bio, https://sfari.org/news-and-opinion/investigator-profiles/2011/wendy-chung-genetic-sleuth-is-advocate-for-families the descriptor I like best is “genetic sleuth” as here, she articulates scientific findings in layman terms on what causes autism.

“Autism isn’t a single condition. It’s actually a spectrum of disorders,” says Chung. “And like it is a spectrum of disorders, it has a spectrum of causes.” For a summary, check out this link http://blog.ted.com/2014/03/20/what-we-know-about-autism-wendy-chung-at-ted2014/

This is a MUST VIEW video for not just parents of ASD kids, but anyone who seeks to understand children with this condition, because most likely, you would know such a child.  Each of us can make a more tolerant and helpful environment for them.  Within my own tiny social circle, I know of ten boys/ young men, and the number keeps growing, because yesterday there were nine.

Also Read : Temple Grandin : The World Needs All Kinds of Minds

 

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

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10 Things Every Child with Autism Wants You to Know

 

canstockphoto18170887Someone sent this to me, unfortunately, I don’t know the source to credit this.  In any case, I hope you can share it, learn it, and embrace the child living it. GetInline

 

Also Read :

 

 

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

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