Antiviral and Antifungal Medications and Die-off
by Marcia Hinds – Megan and Ryan’s mom
My son is now recovered and an aerospace engineer. For him, antiviral and antifungal medications were life-changing. When I first looked up the side effects of these prescription drugs, I was terrified. But I soon realized that if my son is going to have a chance at a typical life, I needed to do something.
About ten days after Ryan first started to take an antifungal medication, he acted more autistic than ever before. I couldn’t understand why he became such a mess. I immediately called his doctor. Dr. Baker apologized, and told me he forgot to tell me this regression might happen. He described what was happening as really great news. Ryan was going through die-off. The antifungal medication was killing the excessive yeast in Ryan’s body, and as the yeast died-off, it dumped toxins into his system.
That’s when Ryan’s physician went on to explain that it was going to take a week or two for die-off to be over. And after that happened his lack of focus would be much improved. After I hung up the telephone, I questioned what kinds of drugs this doctor was on, in addition to the drugs he had Ryan on. This all seemed as crazy as Ryan’s current behavior.
I had been so encouraged after our first appointment, but now Ryan was going backwards at breakneck speed and rapidly regressing. The doctor’s explanation might have been great news if I hadn’t had to deal with my son’s deranged behavior. In addition to making noises, hand-flapping and grinding his teeth, he seemed almost drunk acting silly and laughing inappropriately at the wrong times. He was all high energy at one moment and had no energy the next. I began to have serious doubts whether we were doing the right thing. Instead of getting better like I expected after starting these medicines that were supposed to help his condition, Ryan got worse.
In time, I came to learn that regression is part of recovery too. But regression is scary! It was always hard to watch, and difficult to understand. Why did my kid act more autistic when we were doing all these medical treatments to make him less autistic? My gut reaction was to stop any new prescription when it seemed like it was making things worse. But, eventually I came to understand that Ryan’s body needed time to adjust to the medication changes and we needed to stick with it before it became necessary to regroup or make a U-turn.
It was hard keep going and not stop these medications that were making my son so ill and seemed to increase his autism symptoms times twenty. But after the die-off was finally over, we saw a more focused and alert kid. That’s when it finally became “possible” for Ryan to learn what he couldn’t before. Ryan experienced die-off with both the antifungal medication to fight his overgrowth of yeast and again after the antiviral medication was added to treat his hidden Epstein Barr and HHV6 viruses.
But medical treatment alone was not enough to help my son. It only made learning possible and made it so Ryan could focus. We still needed to catch him up on all the things he couldn’t learn before starting these medications.
We used our own version of ABA we did ourselves and used what my son loved to motivate him. For Ryan, that meant every lesson had to include one of the following: Elevators, cars, computers, technology, sharks, electric plugs, or light switches. We also had to remember that all children love hugs and praise, even though my son couldn’t yet show us that was true.
In the beginning, an intensive rehab program is still needed to catch our children up on all they missed. At first everything must be directly taught until our children start to learn like other kids.
Any program you chose works when the medical issues have been addressed and you stick with it. It is also important to note that it takes time to teach them all they missed. Some parents think that once treated, our children will immediately start talking in full sentences. But it doesn’t work that way. It takes a typical kid almost three years to learn language.
And just so you know every time we experienced die-off or a backwards step it was hard not to panic. Regression was always scary! I worried constantly. I was like Chicken Little and sure the sky was falling. What if he kept going downhill? What if he didn’t come out of it this time? Recovery was not always an uphill climb. It was ten steps forward and two steps back. Sometimes it was impossible to tell if any deterioration in Ryan’s behavior resulted from a change in medication, a problem at school he couldn’t tell me about, or if my son was about to come down with some illness.
Many children are able to stop these prescriptions once their immune systems start working again. As of yet, my son isn’t one of them. Ryan has been on an antifungal prescription continuously since he was about 5 and an antiviral since he was 10. At 28, he still takes antivirals and antifungal medication along with a few others to keep his immune system working properly. However, each of our children are different and need medical treatment tailored to them. When Ryan tried to stop the antifungal medication, he didn’t feel well. Ryan said he felt tired and felt the compulsion to talk to himself out loud. He decided to go back on the meds and things returned to normal.
Ryan still alternates between several medicines to make sure they remain effective. When one stops working, he switches to another. A few of our doctors and pioneers who changed the face of autism, don’t seem to understand this piece of the puzzle. They don’t give these medications at a high enough dose or for long enough to be effective. They also sometimes don’t realize the meds need to be rotated after a tolerance to a medication occurs.
I long for the day when someone gives the world a “cure” for autism. But for now, we just manage it. It helps me to think of as a treatment and not a cure. I compare it to the way a diabetic needs insulin to make their systems work properly. When Ryan was in middle school, I just wanted him to hold a job at McDonald’s and maybe live independently. But I wasn’t sure that was possible back then. Today he is an aerospace engineer at a major company. I never saw that one coming when he was still severely affected by autism. So never give up and keep going until you find the answers to help your child.
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom :
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions. To preview my book, “I Know You’re In There – winning our war against autism” click on http://a.co/a5GWrpM
Contact info for Marcia: