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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Should my Child Take a Vacation from Medication?

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Ah, the joyous sounds of summer: giggling, splashing pool water, crickets chirping, and the snoring of exhausted children. Unfortunately, we’ve also experienced: the bickering among siblings, meltdowns due to late night playing, and frustrating outbursts when schedules are unpredictable. So, how do we prevent the latter? Do we maintain medication rituals or take a temporary break during the summer? Having an ADHD child myself, I have had to make this decision more than once.

I think we need to consider the reasons why we would consider having our children abstain from medication. Here are a few:

1. We feel guilty that they take medication. Most of us have received unsolicited (and often unhelpful) advice that we shouldn’t have our children on medication. Well-meaning friends and family are not usually educated about ADHD and spectrum children, their needs, and possible treatments. It’s easy to feel guilty in this world of “green” and “whole foods.” Of course we’d rather not have our children on medications, but if the medication is HELPING, we need to do our best to ignore ignorant comments.

2. Our children are losing weight. A common side effect of stimulants is weight loss. Our family has dealt with this issue. We now give our child an Ensure every night before bed. We also allow him to eat snacks after dinner once the stimulant has worn off. If your doctor is concerned about weight loss, and your child is not growing, then under your doctor’s supervision, a consideration of going off medication is absolutely understandable and recommended. Otherwise, if you can maintain your child’s weight and growth, medication can be a lifesaver.

3. The medication doesn’t really help. There are certainly children, and adults alike, that cannot tolerate medication. Some people try every medication available, but to no avail. If the medication doesn’t work, then definitely don’t force the issue! When the medication helps, it is obvious in your child’s behavior, and the harmony in your family. If not, ditch it! (By the way, if you are frustrated with the medication, talk with your doctor. If your doctor isn’t helpful, maybe it’s time to find a new one.)

4. Your child is not in school, so why would they need the medication? The ADHD brain has an altered frontal cortex, which regulates such things as organization. The frontal cortex is slow and needs to be stimulated in order to function properly. Stimulants (and other medications like anti-depressants) can help children focus, remain, calm, stay socially interactive, and learn the ability to organize. They need these functions throughout the year, not just during school. You could consider lowering the medication, but your child still needs to be able to function and interact at home, summer camps, and with family and friends.

I have focused on stimulants, as they are commonly used for ADHD. Other medications like anti-depressants and mood stabilizers should NOT be altered without the supervision of your doctor. These medications were not intended to be temporarily decreased over the summer, and you need to be extremely careful in altering the dosage. Always consult your doctor before making any decision.

Whether you decide to have your child stay on their medication, or take a temporary break, YOU know what is best for your child. When judgmental people make comments, confidently state that you are happy with your choice and the success of your child is evidence that you’ve made the right decision. What can they say to that? (And frankly, why should we care what they think?)

Enjoy your summer, and stay true to your own child’s needs and your parental decisions. You are capable of knowing what brings the most happiness to your family.

Also Read : Lessons from Summer of 2012

Cassandra Nelson

Cassandra is a stay-at-home mom that lives in San Diego with her husband and children. In 2000, she received her Master's Degree in Marriage, Family, and Child Counseling. Other than spending time with her family, she is passionate about protecting children and women. She recently became a Life Coach as her goal is to help people find a rewarding life focus and happiness. www.sandiegolifecoach.blogspot.com

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BBC Documentary on America’s Medicated Kids

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This BBC (British Broadcasting Corporation) documentary produced by Louis Thereoux puts a spotlight on ‘America’s Medicated Kids’. It is a full length documentary, but worth the time if you can watch it in its entirety.

Here, the camera goes into the homes of several families to give us a sense of what it is to raise a child who’s “Autistic”, “ADHD”, “bi polar” or suffers from some form of mental disorder. We learn about ten year old Hugh and other kids, how the families came to the decision to medicate, and how they live, day by day with a child with this condition.

I felt less alone, but not any more comforted.

Also Read :

 

Kate M

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

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Study on Complementary and Alternative Treatments

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Parents of children with autism spectrum disorder (ASD) will try just about anything that might help their child, much like a hiker desperately seeking water in the desert.  I must have tried just about everything I hear that has worked for another child : vitamins, amino acids, neurofeedback, psychotherapy, diet changes, natural cures, allergy elimination etc etc.  Often, these are based on recommendations and personal research, generally not supported by most psychiatrists. Imagine my excitement when a guest blogger, whose husband is a psychiatrist, shared this article with me, about complementary and alternative treatments (CATs) from the March 2013 issue of Psychiatric Times. This is a medical trade publication written for an audience involved in the profession of psychiatry, distributed to about 50,000 psychiatrists monthly.

Not all of the information is new, but it offers “scientific evidence for 19 CATs” from experts leading the review.

Here are excerpts from the article:

“CATs considered “acceptable” for trial were vitamin B6 and magnesium, folic acid, omega-3, L-carnosine, probiotics and GI medication (as needed), iron supplementation (as needed), and chelation (on confirmation of heavy metal toxicity from reliable testing). Acceptable externally administered CATs included acupuncture, exercise, music therapy, and animal-assisted therapy.”

The authors recommended a thorough diagnostic evaluation before administering treatment.

Some other orally ingested CATs included melatonin for its sedating effect, and Omega-3s which “are thought to have a neuroprotective effect and help neurons grow in a healthier way.” The study cited results from a random trial for Omega-3 fatty acids.

The authors also noted that since evidence suggests that ASD kids with autism seem to have low levels of Vitamin D, that “it is worth checking those levels and giving them 2000IU/d” which could possibly “improve the core symptoms of autism, including sociability, eye contact, anger outburts and sleep”.

There were CATs that were not recommended because “they failed to show positive effects across several randomized control trials”

Read the full story on http://www.psychiatrictimes.com/autism/complementary-and-alternative-treatments-autism-spectrum-disorder If you get a pop up window, just close it.  Because this is a back issue in March, you will need to do a Search for “complementary and alternative treatments for autism spectrum disorder”. This will pull up the complete article, which is worth reading.

Also Read : Neurofeedback Treatment : Myth or Medicine?

Kate M

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

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Neurofeedback Treatment (Part 1) : Myth or Medicine?

This is the first in a three-part series of personal perspectives on bio-medical interventions we have tried. Read: Neurofeedback Treatment – Part 2 | Part 3

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First Hand!

We are one of those parents who believe that we should try anything and everything that can help our son. Probably not unlike most other parents with kids on the spectrum. Even if something does not cure him, if it just helps in one area, in some small percent, that the sum would make him whole.

Neurofeedback was one of those treatments, and it’s the first of a series of bio medical interventions that I’d like to share simply because it’s the most expensive. Hopefully, this is one datapoint that you can use with your research to decide if this is right for your child. We had a total of 130 sessions which makes me quite qualified to offer an opinion!

There are two questions you must ask : is this effective and if it is, who should I go to.  I somewhat researched the first, but not the second since I thought all companies provided the same service, but that’s not the case. Not all neurofeedback are created equal as it’s as much a science as it is an art.

What is Neurofeedback

We looked to neurofeedback as it’s non-invasive, painless and does not require medication. It made sense to me based on the premise that the brain can be “taught” and “programmed”. Neurofeedback teaches your brain to focus better, relax and improve your moods, and claims to have numerous applications for helping a broad spectrum of disorders from autism, anxiety to ADD/ADHD, bipolar, epileptic seizures to even enhancing sports performance.

It Begins with a Brain Mapping or QEEG

A brain mapping called a QEEG (Quantitative Electroencephalogram) is first done to analyze brainwave patterns before treatment begins.  This typically costs a couple of hundred dollars or low one thousand.  There are four different brain wave patterns – delta, theta, alpha, beta – each associated with different functions like sleeping, day dreaming, relaxation and anxiety. The QEEG identifies any abnormal brain wave patterns and then a protocol is set up for therapy to correct those patterns.

For example, in a typical ADD child, there will be too many slow alpha brain waves so the therapy would target those brain waves and speed them up to improve concentration.  It uses special computer software to measure and train the brainwave to correct imbalances in order to get the brain to perform better. Conversely, it could have too many beta brainwaves which cause anxiety, which will need to be slowed down.  After repeated intense training and practice targeting brain waves that are underperforming or overactive, the brain will adapt and achieve the desired level of brainwave activity.

Part 2: Neurofeedback Treatment – Jumping In With Both Feet

Kate M

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

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Neurofeedback Treatment (Part 2) : Jumping in with Both Feet

This is the second in a three-part series of personal perspectives on bio-medical interventions we have tried. Read: Neurofeedback Treatment – Part 1 | Part 3

autism-brain-scan

Actual QEEG for “Jack”

 

So, we jumped in with both feet — and signed up for 70 hours of treatment —

The first treatment we did for our son was with an institute based in Irvine. Neurofeedback seemed like a medically-sound approach and is the only one that uses some kind of objective measurement to evaluate the patient’s condition.  We liked the possibilities and the “before” and “after” mapping to monitor the results of the treatment.  As with many parents who jump at the promise of a cure, we immediately signed up with them after our first meeting with its director who’s an MD.  That lent more credence to both the Institute and the treatment.

After the initial meeting and closing the “sale” with us, we never saw the good doctor again.  And I mean it in the literal sense of the word!  As soon as the deal was closed, we were passed on to his team of technicians and counsellors, who assured us that though we do not meet with him, he personally reviews the treatment and protocol to decide what settings my son should be getting.  (The technicians operate the computer system where my son would sit for 40 min each session, and the counsellor is really a marriage and family therapist who would review the case every couple of weeks with us)  Not once did the doctor meet my son.  That should have sent a red flag, but we chose to squash those doubts because when you are desperate you want to believe that there’s going to be a good outcome so you push aside fears and negative thoughts.

We went into it, hoping for some results, not expecting a miracle. Even if it partially addressed one of two problems we would’ve been quite ecstatic.   It did not address the two major concerns we were were trying to alter : 1) attention and 2) anxiety. After logging 9,000 miles in four months – three to four times a week for 4-5 months, 120 mile round trip from San Diego to Irvine each visit, for 75 visits, and some $10,000 poorer, there was no significant, no, make that discernible difference with Jack’s problems.

We had wasted the summer of 2009, dispirited because nothing’s changed.

Part 3: Neurofeedback Treatment – Like A Drowning Man Grasping At Straw

Kate M

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

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