February 3, 2016
Increased self-injurious behavior (SIB) in an autistic patient (my son) with seizures. Increased SIB began with an increase in seizure medication, Onfi, specifically with elevated doses BID: 10mg am and 15mg HS.
After increase we saw an atypical self-injurious behavior emerge:
The self-biting was so fierce he tore off an entire layer of skin from his left hand.
Worse, the pain from the self-biting caused more self-biting and more self-punching.
Wound care took 2-3 people to simply treat the area and attempt to bandage it. Meanwhile, he kept biting the bandages off, leaving the wound open to infection. We tried New Skin bandage. That tasted like crap when he went to bite his wound again, thus triggering more self-punching episodes. We then applied topical Lidocaine, in an attempt to soothe the "burning" or "stinging" of the wound, since the burning and stinging was the recurrent breakthrough pain antecedent to the continual self-biting and self-punching.
Apparently, Onfi can increase "irritability" and "aggression." Not a desirable effect for a person with autism, epilepsy AND self-injurious behavior.
We asked neurologist to reduce Onfi. Reduction in Onfi moderately decreased the increased self-injurious behavior.
Then the challenge remained how to effectively treat the open wounds caused by self-biting.
What we did to resolve this dilemma:
1. Asked primary care doc for PRN of Norco to get behind the pain, hopefully RAISING the pain threshold. The theory behind this being if we could raise the pain threshold for a few days, it could remove the constant antecedent pain to re-biting the same wound, giving it a chance to heal by NOT be so painful as to elicit more self-biting.
2. Vigilant wound care. Keeping wound clean and covered to the best of our ability. (At one point after we bandaged self-inflicted bite wounds, we put a thick sock over his hand to protect the treated area). Amazingly, he didn't try to rip off the sock with his teeth. That gave it a several hours to heal without the imminent threat of wound being re-opened with another self-biting behavioral meltdown.
3. Implemented more sensory-based interventions, such as frequent offering of sensory-chew tube and thick, damp towels to bite. Increased crunchy foods. Used more visual re-directions to keep his mind off wound. Increased physical activity (walking) and bath time therapy to keep his stress level down. Increased massage of legs to bring mental attention and comfort to another part of his body.
4. Increased staffing support to allow for prompt medical treatment of wound, protect from re-opening wound and from hurting himself during extreme self-injurious meltdowns during transitions from shower and bath and while getting undressed and dressed.
5. Increased music therapy. Nothing fancy here. Just turn on some favorite music.
6. When bandaging couldn't be kept on, applied intermittent sprays of Tea Tree Oil to facilitate quicker healing and prevent staph from breeding in and around open wounds.
7. Packed the wound with raw honey (the theory here was at least if he went to bite the same wound it would taste good and maybe he wouldn't be so pissed off and keep biting it).
February 1, 2016
How many children, teens and adults with autism have been subjected to medication trial nightmares? Answer: Too many.
How many parents of autistic children, teens and adults have nearly lost our marbles in the midst of medication trials and errors? Answer: Too many.
You know what I'm talking about. You're in constant crisis. That panic. That desperate search for medication that will activate, deactivate or modulate excitatory or/and inhibitory neurons.
That wrist-wringing worry over a drug or drugs that may cause extra pyramidal side effects, restless legs, headaches, increased seizures, tardive dyskinesia or a life-threatening rash.
You just want to make your child's life happier, safer and more productive for all involved.
And then you get the let's hope for the best drill: A doctor suggests a new medication, for no personalized or precision minded reason other than it's a psych med others have tried, and why not, let's give it a whirl. You're so exhausted you're brain can't think beyond what's going to happen in the next hour, so you agree. (My son's blessed to have doctors that listen to new ways to help and support better medical management).
Then comes a honeymoon period, where you think another new medication might just work.
You open new prescription, pull out pill. Outside, California Thrashers sing to the energy bursts of the sun's rays. It's a great day for new medication.
You administer drug. Days go by. Seems therapeutic. Then, as if a hawk strikes, the bird stops singing and the honeymoon period goes sideways. You notice your child's arched brows, facial grimaces, squinted eyes.
Then...get ready for it....Elbows fly. Legs thrash. Dinner plate crashes to floor, dogs competing for crumbs. Drink spills, draining juice on floor. High pitched screams. Medication bottle tips over. Thank God the top was on.
Behavioral meltdown goes on for hours. You find yourself on the floor, with another caretaker, restraining your child who is now trying to bite pieces of skin off his hands. Blood trickles. Sleeves soaked in red. Cortisol elevated. Sweat beads on foreheads. Everyone on verge of tears. What just happened? Is he on wrong dose? Wrong med? Wrong interaction with other meds on board? Did med give him stomach ache? Acute headache? Is it causing itching? Restless legs? Brain zaps?
What if there were a test your autistic child could take to pinpoint which medication could be more effective than others? Makes sense, right?
Amazingly, there is such a test.
It's called the Genecept Assay, used by some psychiatrists to help choose which pharmaceutical agents-- or in lay term-- medication(s)-- would be more biologically therapeutic in an individual patient. Precision medicine.
Genecept Assay is especially useful in non-verbal autistic patients who can't tell psychiatrist--or anyone else---if they are experience adverse side effects to the wrong medications.
According to the manufacturer of the Genecept Assay, the assay analyzes "genes that indicate the AFFECT a drug has on the body, subsequently informing drug candidate selection."
Parents of children, teens and adults with autism know well that any AFFECT a drug has on the body can trigger extreme behavioral meltdowns, leading to off-baseline self-injury, increased agitation, 911 emergency calls and hospitalizations.
Why more psychiatrists aren't using genetic assay to help patients with autism and severe behavioral issues is anybody's guess, given the historic failure of psychiatric drugs to address severe behaviors in autism.
Genecept Assay involves a psychiatrist simply ordering the assay (Medicaid and other insurances covers it), swabbing patients mouth, sending out results, reading results and applying new information to prescribe specific medications as per the autistic patients newly known pharmacodynamic genetic profile.
For instance, some children with autism are hyper-metabolizers (drug moves faster through their body) of certain medications. Others are hypo-metabolizers (drug moves slower through their body) of certain medications.
Nobody will ever know who is and isn't a hyper or hypo-metabolizer, until you do Genecept Assay.
Research shows autistic patients with severe behaviors typically blast through dozens of medications, changes in dosing and medication combinations, most of which ultimately fail and bring more harm than good.
How awesome would it be to have information from a Genecept Assay to guide treatment?
A psychiatrist can use information gained to choose specific drugs, increase or decrease medication and/or discontinue or add a specific medication based on assay results.
In short, all this collectively accepted-group-belief-let's-just-guess-and-hope-for-the-best-madness-while-we-pull-medications-out-of-a-rabbit's-hat that goes on in medical management of autistic patients, can be mitigated with a 400 dollar genetic test that is fast, simple and pain free.
The test isn't for everyone. It's indicated for patients who have treatment resistant conditions and have failed to respond to a plethora of medications.
Genecept Assay removes the mental torture of medication trials and errors, the physical torment of serious side-effects and the overall insanity of chronic ineffective pharmaceutical treatments in autism.
Genecept Assay should be a standard of care diagnostic tool in the psychiatric treatment for autistic patients with severe, chronic behavioral issues.