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

1) Read all you can about your child’s medication.  Educate yourself, read the literature and reviews from other patients.
2) This brings us to lesson #2 – so you can monitor closely your child’s response to the medication.  If you see any “new” unwanted effects, check in with the doctor. Do not let them dismiss, desuade or convince you that it’s not a side effect / reaction if it’s serious.
3) Do not let doctors intimidate you.  Doctors are not gods.  They use general rule of thumb and if your child is like mine, he might be the one kid with a reaction not listed on any literature. It is unnatural to ask questions and most doctors do not like questions or being challenged. But when your child is sick you must overcome what’s natural and do what’s necessary. Be bold, be shameless.
4) If they intimidate you, get another doctor. (Don’t worry about the pedigree of the doctor.  An ivy league training does not make one a better doctor)
5) Every child is different. There is no protocol for treating autism. Keep an open mind and be willing to try different medications and doctors – while remembering lesson 1-4!
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Kate M

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

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