Professionals are emphasizing that medications act differently when tried by children within the autism spectrum, following research with regard to the effectiveness of SSRIs.
"Not all the SSRIs currently in use have undergone controlled trials for autistic spectrum disorders, but parents are often anxious to try treatments regardless of the lack of evidence..."It's important that doctors are open about the lack of evidence, and explain any risks fully, before prescribing these treatments," said Williams. (link)
Serotonin Reuptake Inhibitors (SSRIs) Include: fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil), citalopram (Celexa), escitalopram (Lexapro), fluvoxamine (Luvox). Some have been approved for use in children, but others have only been used off label.
Venlafaxine (Effexor), is closely related to SSRIs.
What has previously been known with regard to SSRIs is the fact that - a small subset of adolescents antidepressants may increase the risk for suicidal behaviors (link). Now, research into affects of SSRI on the younger autism spectrum population conclude: ...Overall, the researchers found no benefit in the five trials in children and some evidence of serious harm, including one child who suffered a prolonged seizure after taking citalopram. (link) It is not that there has not been an awareness in the medical community with regard to the overall complications that medicating presents in children, it is just that so many children are on them that better understanding has become an impreative for all the players involved - especially parents.
Paxil was tried on my severely autistic daughter Sarah when she was younger because a doctor suspected a behavior (that actually turned out to be associated with interstitial cystitis) was obsessive compulsive. The short term use of Paxil resulted in violence that had not been previously exhibited by my daughter. Fortunately, we were able to treat her for the interstitial cystitis and her behavior of going to the bathroom all the time ceased.
With regard to trying SSRIs, Katrina Williams of the School of Women's and Children's Health - University of New South Wales Sydney Children's Hospital says, "...decisions about the use of SSRIs for co-occurring obsessive-compulsive disorder, aggression, anxiety or depression in individuals with autism should be made on a case by case basis". (link) This reality has been known already, but the significant importance is that data from Katrina Williams authored study supports the conclusion that - in autism, medication trials needs to monitored quite carefully for a variety of reasons.
What might need to be more thoroughly considered by professionals, is the metabolization issues with regard to SSRIs. Sometimes competitive inhibition of enzymes is brought on by SSRIs, and this complicates an already difficult process - especially for those like my daughter who already don't have typical response to medications (SSRIs) that interact with the 2D6 enzyme. (See Medication Differences and or Sensitive Patients). She is a slow metabolizer of the 2D6 enzyme.
Many on the severe end of the autism spectrum end up trying more than one medication (polypharmacy) at a time and this in turn can create more issues to do with overall metabolization of the medications, in total. Below, the problem of combining a SSRI type medication (like Prozac) with a Trycyclic Antidepressant type medication (like seroquel) is thought through.
From Manual of Clinical Psychopharmacology: ...Most of the SSRIs are capable of inhibiting the 2D6 enzyme, leading to increased plasma levels of other agents. For example, fluoxetine (an SSRI, Prozac) may be associated with up to an eight fold increase in TCA (like Seroquel) plasma levels.
Given the above scenario, taking more than one medication at a time increases the risk of adverse side effects, doesn't it?
In the case of a slow metabolizer of the 2D6 enzyme due to genetics, like my daughter - 2D6 is already inhibited in her (and is not present due to utilization of a medication). Her lack in typical metabolization allows for the possibility of adverse side effects from Seroquel...err, which she actually had during one doctor's tries at medicating her for refractory presentation of autism and psychosis nos (schizophrenia like). While I could identify that a Seroquel trial was making her crazier during an inpatient encounter, it was hard for the doctors to know this - and they simply sent her home. Here is an example of how her already present psychosis intensified while on Seroquel...
The local consensus was that Sarah was a lost cause. They told me that no further medication adjustments needed to happen, and they seemed to hold little interest in my thoughts about her wellness. Since a cause is never over until someone fails to lead it, I made a request for help to Dr. Wells on the morning of March 25. I told him that Sarah was having episodes, and she was injuring herself through one of the behaviors. She started to throw chairs in the kitchen. She then grabbed a knife out of the kitchen, in order to stab holes in a certain area of the hall, ripping at the sheetrock as well. I took the knife and put it back and she tried to get it. I would not let her and so she started to attack me. She needed the knife to get rid of the wall. We learned that whatever the focus of a repetitive behavior was, in this case hitting or spitting at a certain area of a wall, she must get rid of it. That area of the wall offended her as a trigger and so she placed the blame there. I had seen the same with regard to movies that had become triggers. She pulled them out of the VHS player and ripped the tape out of the case. I was still making sense of the craziness. After all, when my brother had done some remodeling in our house, Sarah would watch as he cut into sheetrock, renovating to get rid of some offensive areas!
By the afternoon of March 25, my husband and I dropped a very combative Sarah off at the Mayo unit. A portion of the drive felt like hell on wheels, since Sarah ripped the car seats and tore Steve’s shirt completely off him. I ended up needing to drive, because for this particular time, Steve endured the full brunt of her discontent. Upon our arrival to the unit, we became joyful because we made it in one piece; Sarah actually took herself to the seclusion room.( Hello, Dr. Wells)
With my daughter, the culmination of every experience seemed to be that of not quite knowing every element in the battle, but always trying anyway; the professionals who made a difference for her represented such. She experienced trials of Paxil, Abilify, Buspar, Cogentin, Luvox, Strattera, Depakote, Geodon, Klonapin, Reminyl, Clonidine, Trileptal, and Seroquel over several years' refractory psychosis. The trials seemed to either make her worse, or not sustainably better. We did eventually identify treatment that alleviated her severe psychosis. She is doing so much better than the above description.
So as it is with the culminations of life events, the culmination of every discovery in medication seems to be that of not completely knowing every element of the medications affect, but with research and betterment in applications - we can always keep trying anyway.
It might be important for insurance companies and government agencies to stay away from global approval of generic medication as safe and equivalent as compared to brand medication. For those with metabolization issues, generic can deliver in a way that does harm due to the use of differing fillers that affect delivery of active ingredients. Generic medication is not the same as Brand for some and the FDA only requires testing on normal subjects for the safe and equivalent rating. The FDA does not require trials on the autism population before granting a safe and equivalent rating to generic medications. (See Medication Differences and or Sensitive Patients)