When kids with autism have problem behaviors, inattention, or sleep issues, many medical and educational professionals, relatives, and friends recommend medication. Today, we’re talking all about autism medication and supplements.
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. 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 autism medication to others.
When Lucas was diagnosed with autism one day before he was 3, we asked the developmental pediatrician if there were any medications used for autism. Since I was and still am an RN and my husband is an emergency medical 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 but that he did not recommend any autism medication 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 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. We tried supplements such as multivitamins and melatonin, as well as traditional medications to help with sleep issues when Lucas was young. We also tried a few traditional medications 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 not correct 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 autism medications and supplements that did make a huge difference for Lucas though. The doctor who diagnosed Lucas with autism in 1999 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 can backfire causing bad dreams and an increase in nighttime weight gain. But for Lucas, melatonin has been a positive.
The doctor who diagnosed Lucas with PANS also diagnosed chronic sinusitis, headaches, and recommended allergy testing. Allergy shots initially started as once every week after the testing and then went to once every 2 weeks and then 3 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 allergy shots and autism 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 only 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 in distress after being startled, like during a fire drill, he would go into fight mode. 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 beta-blocker to calm the nervous system down. Lucas has been on this medication 3 times a day for 4 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. 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 showed us any autism medication he could possibly be on and linked it to how Lucas would respond to each medication based on his unique DNA. This test can be very expensive if it’s not covered by insurance, but we made sure it was covered by insurance. We did the 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.
His DNA report showed that those kinds of medications were in the red zone. In this report if it’s a green med, that’s totally fine. A yellow med would need to be used with caution. 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 1, 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, we were in a maze for many years, until we found the right supplements and the right autism medication.
I kind of freak out when someone says, “His teachers said I should put him on meds.” My second point is like the MD who diagnosed Lucas with autism recommended, ideally your child should be receiving good behavioral treatment before starting any trials of autism medication. 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, and 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.
Tip number 5 is to 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. Tip number 6 is 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 autism medication.
