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Living with Autism


February 3, 2016

Analyzing why Onfi Caused Self-Biting Behavior in Autism

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                       Case Example:

Who: My autistic son.
What happened: Increased self-injurious behavior (SIB) caused by new seizure medication, ONFI (clobazam)

Increased SIB began a few weeks after increase in seizure medication, Onfi, Dose: BID: 10mg 0700 and 15mg 1900

Following administration of ONFI atypical self-injurious behavior emerged:

Self-biting was so fierce he tore off an entire layer of skin from his left hand.

Why would Onfi cause an increase in self-injury in an autistic person?

It's not so much the drug itself. For some, Onfi is a great drug, but for people with autism, they can have very different reactions to medications, depending on how they react or feel to side effects.

Let's look at some side effects of Onfi:

1. Trouble swallowing (would most likely agitate an autistic person)

2. Dizzy (would scare an autistic person)

3. Irritable  (Even non-autistic people get irritable when they can't swallow properly or feel dizzy after a new medication, so times that by 100, for the autistic person)

4. Aggression (may be a form of communication, not knowing how talk and tell people they're having trouble swallowing, feeling dizzy and weak)

5. Slow thinking (majority of people with autism do NOT respond well to any medication that slows thinking...usually Gaba (a) receptor agonists and other anxiolytics)

6. Feeling weak, general malaise  (would increase agitation in autistic people)

7. Insomnia (would create a domino effect of sleep deprivation, leading to increased irritability, leading to increased self-abuse or aggression, as form of communication they aren't feeling well, and are now exhausted).

As for any drug that slows down thinking: Most people with autism don't like to be sedated. It pisses them off. People with autism are highly intelligent, despite even a low functioning presentation. They hear, see and feel things very intensely. Taking in everything around them. It's not that their brain activity has to be "suppressed" or "slowed" with anxiolytics, etc...it's that their brain activity is experiencing a dysregulation of neurotransmitters.

Biggest challenge in treating autistic patients is investigating which drugs are compatible to their DNA. There are tests for that, which are rarely used to better treat patients with autism, but should be a standard of care test in any patient with special needs who can't communicate and who has failed to respond to multiple drug interventions. See: https://genomind.com/test-process/

Why an increase in self biting after Onfi?
Self-biting may be an attempt to "ground self."

Trouble swallowing. No doubt would cause extreme panic in an autistic person.

We asked neurologist to reduce Onfi.

*Reduction of Onfi only moderately decreased the recently increased self-injurious behavior (self-biting).

*This is always a challenge for parents of autistic children, teens and adults.

You start a new medication for a medical issue. It causes side effects that increase your child's behavior. Now what? So frustrating! Do you keep reducing or discontinue medication?

We kept him on Onfi because he was having increased seizures. We were hoping the self-biting would stop. Meanwhile....

the challenge remained how to effectively treat open wounds caused by this new 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. Use JUDICIOUSLY and with lots of fluids and non-binding fiber, as pain meds cause constipation, another trigger to self-abuse.

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). He tolerated the sock. Probably because it gave sensory support, mild compression, which many people with autism need when pain is elevated.

3. Offered sensory-chew tube and thick, damp towels to bite.

4. Increased crunchy foods.

5. Increased physical activity (walking) and bath time therapy to keep his stress level down.

6. Increased massage of legs to bring mental attention and comfort to another part of body, away from wound.

7. Increased staffing support to allow for prompt medical treatment of wound.

8. Music therapy. Nothing fancy here. Just turn on some favorite music.

9. 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 wound. Then quickly covered with SOCK.

10. Packed wound with raw honey (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).

When ONFI appeared to bring little relief to increase seizures the decision to DISCONTINUE ONFI was clear: GET RID OF IT.

It wouldn't make sense to keep our son on a new seizure medication that wasn't stopping increased seizures AND was produced side effects that caused him to bite himself. No brainer here.

Result: He eventually stopped self-biting. (Took several weeks post discontinuing ONFI and several ABA therapy sessions).

However, you would be shocked to know how many people with autism, across this country, are kept on drugs that aren't helping and actually causing MORE problems, simply because nobody in charge is analyzing the situation or paying attention.

Kim Oakley


February 1, 2016

How to Choose the Best Medication for Non-Verbal Autistic Person

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What if there were a simple test that your autistic child could take to pinpoint which medication could be more effective than others? Makes sense, right? Wouldn't that be a dream to the let's keep guessing which med may work nightmare?

Amazingly, there is such a test.

It's called the Genecept Assay, used by some psychiatrists to help choose which pharmaceutical agents-- would be more biologically therapeutic in an individual patient.

Aka: "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 medications.

According to manufacturer of 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 effect a drug has on the body can trigger extreme behavioral meltdowns, leading to off-baseline self-injury, increased agitation, 911 emergency calls and hospitalizations. Serious shit that can't be ignored.

Why more psychiatrists aren't using genetic assay to help more non-verbal patients with autism, given the historic failure of psychiatric drugs to address severe behaviors in autism, is anyone's guess.

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 the 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 specific meds. It would be nice to know this before it's prescribed and doesn't do crap. Or worse, causes more problems.

Other people are hypo-metabolizers (drug moves slower through their body) of certain medications. That wouldn't go well if it were a seizure medication, would it? Nope.

The fact is: Nobody knows who is and who isn't a hyper or hypo-metabolizer, until you do Genecept Assay. In essence, whatever med you're given, the doctor is guessing it will be a match for you.

Interestingly, 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? To better understand the person's pharma profile so everyone's happier and healthier? Is this too much to ask?

A psychiatrist can use Assay test information to choose specific drugs, increase or decrease medication and/or discontinue or add a specific medication based on assay results. Surely, this is practicing good medicine.

The test isn't for everyone. It's indicated for non-verbal patients who have failed to respond to a plethora of medications. Most of us can tell our doctors, fairly quickly, if a medication isn't working. Not so with vulnerable adults with autism who can't speak.

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 non-verbal autistic patients with severe, chronic behavioral issues.

Kim Oakley