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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


1 comment:

Kristin Winter said...

Dear Mrs. Oakley:

Hello, I’m Kristin. I’m thirty-one years old and I live in the suburbs of Chicago with my parents and my twin sister who has special needs. I have a disability myself. I was born with Hydracephalus and an Encephalocele, which led to a visual perceptual problem. I have a shunt and Obsessive Compulsive Disorder.

I went to Elmhurst College and was in a program called the «Emhurst Learning and Success Academy,» which is for people with any type of disability. The program ran for four years and it emphasized Academics and Career Exploration, Independent Living Skills and Social and Recreational Skills. I commuted four days a week, but I took classes over the summer and was able to live in a dorm during the last week of the program. I received a Certificate of Completion and I sometimes attend graduate seminars twice a month.

I have two part-time jobs. I work at Starbucks Coffee on Saturday mornings and the Ashland Addison Florist on Tuesdays and Wednesdays. I received them from two different Employment Agencies that help people with Disabilities seek employment.

I create and sell jewelry. I showcase my art at events/fundraisers that benefit people with disabilities and donate a portion of the proceeds.

I do acupuncture twice a month. Its relaxing and it calms me down.

I participate in various activities with SEASPAR (South East Association for Special Parks and Recreation.) I’ve been to a few parties/dances and have taken exercise, art and jewelry making classes. I’m involved with Kiwanis Aktion Club every other week. The club holds fundraisers and raises money for local charities and performs various service learning projects. We basically help people in need.

I have read your blog and watched your youtube videos. They’re really interesting. I can relate to them because I’m going through some of the same things that you and your son are; the reality of living with or raising someone with a disability, every day life, hardships, struggle, etc. My mother was a Special Education major at the University of Wyoming. She works as a teachers aid and helps people with disabilities.

Kristin Winter

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