When kids with autism have problem behaviors, inattention, or sleep issues, many medical
and educational professionals and relatives and friends recommend medication.
Today, we're talking all about medication and I'll discuss supplements too.
Hi, I'm Dr. Mary Barbera, autism mom, board certified behavior analyst, registered nurse,
and the best-selling author of the Verbal Behavior Approach.
Each week I provide you with some of my ideas about turning autism around, so if you haven't
subscribed to my YouTube channel, you can do that now.
Since I'm both a nurse and a behavior analyst, as well as an autism mom, I have a strong
interest in the behavioral treatment of autism, but also the medical and biomedical treatments
that are often recommended and tried.
I have a few previous blogs on medical issues and pain that I did several months ago, so
you may want to check them out too.
Today, I'm going to tell you about my son Lucas's journey with supplements and medications.
This is my own personal story and nothing in this video blog should be considered medical
or behavioral advice, as only a medical and behavioral professional caring for your own
child can provide you with an individualized medical plan.
I also want to tell you that at the end of the video, after I tell you about Lucas's
journey, I am going to give you six general tips to consider before medicating your own
child or recommending medication to others.
When Lucas was diagnosed with autism one day before he was three, we asked the development
pediatrician if there were any medications used for autism.
Since I was and still am an RN and my husband is an emergency medicine physician, we approached
autism, at least in the beginning, from a total medical point of view.
The developmental pediatrician said that there were medications to treat kids with autism
and the various symptoms of autism, like medications to help with sleep, or medications to calm
kids down if they had severe problem behaviors, but that he did not recommend any medications
for Lucas until a good behavioral ABA program was in place.
Within a few months of his diagnosis, we had set up a 40 hour per week ABA program in our
home for Lucas, supplemented with a few hours each week at typical preschool with a shadow
and also he received some speech and OT sessions too.
Over the years, through recommendations of various doctors and health practitioners,
we tried several different supplements and medications for Lucas.
Supplements such as multivitamins and melatonin, as well as traditional meds to help with sleep
issues when Lucas was young.
We also tried a few traditional meds such as antipsychotics and antidepressants to see
if these improved Lucas's situation as he got a little older.
The vast majority of supplements and medications we tried for Lucas did not work.
Many of the traditional medications caused side effects such as weight gain.
Even some of the supplements caused issues too.
I remember when Lucas was young I tried a multivitamin and 30 minutes after I would
give him the vitamin, he'd get agitated and might even escalate to having a problem behavior.
After researching this further, I found that there was copper in the multivitamin and I
also learned that the zinc to copper ratio in many kids with autism is messed up and
that some kids need zinc supplements.
They also need to avoid copper.
We then got Lucas's zinc to copper ratio tested via standard blood test and we put him on
zinc and he continues to take zinc each day.
We also avoid copper, especially in multivitamins where copper could appear.
There are a few medications and supplements that did make a huge difference for Lucas
though.
The doctor who diagnosed Lucas with autism in '99 suggested we try an over the counter
supplement called melatonin for Lucas who had poor sleep.
The melatonin remains affective for Lucas to this day and he's 22 years old now.
In some kids, melatonin, and I've seen this with my own eyes, can backfire causing bad
dreams and an increase in nighttime weight gain.
But for Lucas, melatonin has been a positive.
When Lucas was six years old, he developed acute onset ticks, which later turned out
to be diagnosed as PANS, pediatric autoimmune neuropsychiatric syndrome, and I did a blog
on PANS and PANDAS a while back so you may want to check that out.
For PANS and PANDAS, for Lucas, antibiotics were a big factor in treating flares of PANS
for over a decade.
The physician who finally diagnosed Lucas with PANS when he was 14 years old ordered
a short-term steroid pack and a different antibiotic to clear up Lucas's ticks, which
at that point were burping ticks.
The antibiotics and the short-term steroid pack was also successful for Lucas.
The doctor who diagnosed Lucas with PANS also diagnosed chronic sinusitis, headaches, and
recommended allergy testing.
Shots, allergy shots, which initially started as once every week after the testing and then
went to once every two weeks, three weeks.
Lucas is now on year five of allergy shots, which he gets once a month and he also takes
allergy medication three times a day.
Because of this allergy treatment, Lucas's headaches and allergy symptoms are mostly
controlled now.
The medication that was added last was a very big positive for Lucas.
Despite getting these allergy shots and medication since he's been 14 or 15 years old, Lucas
continued to have some serious problem behaviors, like aggression towards others and self-injurious
behavior when he was in pain or when he was startled.
When he had a bad sinus headache, for example, or when he was in a startled situation such
as a fire drill he might engage in head hitting, knuckle biting, or aggression towards others.
This only happened once a month or so, always when he had a headache, or when he was startled.
I was on a wait list for 18 months and I finally got into a psychiatrist who diagnosed Lucas
with an autonomic nervous system dysfunction.
He explained that when Lucas was in pain, like a headache, or a distress after being
startled, like during a fire drill, he would go into fight mode.
There's that fight or flight reaction.
Unlike some people who would pass out from pain or stress and go into flight mode, Lucas
would become aggressive to himself or others when he was startled or in pain and he would
go into fight mode.
That was part of his autonomic nervous system dysfunction.
Luckily, the doctor had already treated 40 patients with autism who also had similar
nervous system issues and the treatment was, and still is, a cardiac med, a beta-blocker
to calm the nervous system down.
Lucas has been on this medication for three times a day for four years now and he's no
longer aggressive towards others and rarely engages in self-injurious behavior, only when
he's in pain pretty much or has an infection would he engage in SIB.
We have to be really careful about keeping track of all of this to prevent any serious
problem behaviors.
The doctor who ordered this beta-blocker medicine also ordered a genetic pharmacological swab
test through a company with the website Genomind.com.
This swab test which showed us all different medications, like pain medicine, antipsychotics,
anti-seizure medication, all the medication he could possibly be on and linked it to his
... Linked how Lucas would respond to each medication based on his unique DNA.
Through this test, which can be very expensive if it's not covered by insurance, but we made
sure it was covered by insurance.
We did the test, swab test, and now we have a record of pretty much any medication and
how Lucas would do.
Through this test, we learned that Lucas would do okay with older antipsychotics, but the
newer antipsychotics would cause side effects and issues, including weight gain.
This made a lot of sense, because when we tried the newer antipsychotics in the past,
like Risperdal and Abilify, it would always backfire.
Through his report, his DNA report, it showed that those kind of medications were in the
red zone.
This report is a green med, that's totally fine.
A yellow med, which needs to be used with caution.
Or a red med.
It's no wonder that Lucas had problem behaviors related to these newer antipsychotics.
Now that I told you about Lucas's medication journey, I have a few tips for you.
Number one, if you're not a physician specializing in pediatrics, autism, and/or mental health,
you shouldn't be telling parents to medicate their child.
Even though I'm a nurse and my husband's a physician and we were in a maze for many years,
until we found the right supplements and the right medications.
I kind of freak out when someone says, "His teachers said I should put him on meds."
Like the MD who diagnosed Lucas with autism recommended, ideally your child should be
receiving good behavioral treatment before starting any trials of medication.
That's my second point.
My third tip is medications and supplements should be added one at a time preferably so
you can check both the positive changes and any side effects.
To keep a close eye on these, I recommend keeping a dedicated calendar with problem
behaviors, new supplements or meds, changes in dosing.
I have years of calendars for Lucas and I continue to bring Lucas's calendar to his
doctor's appointments and this has been extremely helpful and important to getting Lucas on
the right track.
Number five, get out of the mindset that all biomedical supplements are pseudo science
and that all traditional medication is good.
Each child is different with different symptoms to treat and every supplement and traditional
medication could cause side effects.
Number six, ask your doctor about doing a swab test through Genomind.com or a similar
site.
There's a couple different companies that run these pharmacological tests.
This might help guide you and them in making better decisions, especially if your child
is currently on any medications, especially children who are on a cocktail of medication
if they're not doing well.
I would love it if you would leave me a comment, give me a thumbs up and share this video with
others who might benefit.
To download my free three step guide which details how to keep your own calendar data
and to learn more, go to MaryBarbera.com/join.
I hope to see you right here next week.