We are ten years into our healing journey, and we have made significant and substantial progress. My child is doing very, very well, but I am still helping him heal from autism, and there is definitely hope.
Regression into Autism After Fever
Ashton was born in 2012. He was typically developing. He was your regular kid, regular baby. And, at 19 months old, he got strep, and he also had an upper respiratory infection. He had mycoplasma at the same time, which is like a walking pneumonia.
He had a really high fever for a couple of days, a 104-degree fever, and we lost everything at the end of that week. He had a severe regression, and he lost the ability to look at people. His auditory system was messed up.
He lost all language, and he was really in a lot of discomfort. He was running and screaming, and it was just this nonstop mess that we were in, just immediately following this illness.
The Missing Clue
We actually got some answers when he was 11 years old as to a major, major part of the puzzle, Ashton actually has a condition that should have been flagged in the newborn screening, but was missed. He has methylmalonic acidemia, which is an inborn error of metabolism.
The thing with that condition is when you have a really high fever, they have to check the ketones. If your ketones are high, you’re at really big risk of a major metabolic issue, a crisis, regression, and such. We had no idea that he had methylmalonic acidemia.
Improvement After FRAT Test and Treatment
It was Dr. Heather Tallman Ruhm who did the FRAT test, the test for folate receptor antibodies. He was about two-and-a-half years old. I would go to four neurologists and sixteen doctors with this piece of paper that said we have folate receptor antibodies blocking.
It was either “I don’t feel comfortable treating that” or “We’re not treating that. Nah.” There was every excuse in the book. Dr. Gaitanis saw the paper and he said, “Oh, do you want a script?” This was life changing because we were sixteen doctors into this. I don’t know how much was lost that, in those two years, we missed treatment within weeks of being on leucovorin.
Ashton went from single words to three phrases at a time. We had a lot of language happening.
Most Impactful Treatments
I don’t think that any single one treatment would have done it on its own. I’m gonna say that. I don’t think that any one single therapy or medical treatment would have done it on its own. It’s a puzzle, and you’re putting pieces in a jigsaw puzzle.
And you’re trying to find these, and it’s a needle in a haystack. You’re looking for all of these ways to help your child. We’re treating things still to this day.
The combination of leucovorin, levocarnitine, and vitamin B12, though, would be the things that stopped that cascade downhill, stabilized, and allowed things to open up.
Practicing Independence
My child is going to be independent when he grows up, and we work on that all the time. We work on that in doing chores. He is a kid who got lost. He got separated because he bolted when he was eight.
He bolted in Connecticut. He ended up 30 seconds from a major highway. He is lucky to be alive. But what we did after that was we practiced. What do you do when you get lost? We practiced over and over and over again. I took him to big stores like Sam’s, and I’m like, “You’re gonna be right here. Okay? I’m gonna be close by. Now you’re gonna pretend you’re lost, and I’m gonna call you.” And it’d be like, “Oh, hi, mom. I’m here.” He’d hang up on me.
Now I know what we need to work on. When you’re lost, you say, “Hey, mom. I’m next to the _____, and you’re gonna read whatever you’re next to.” And we practiced.
The Lowest Low
When he regressed overnight, questioning myself about not going and getting a second opinion and not going to the emergency room, that’s a hard one to live with because it has impacted him for his whole life.
It really has. I don’t know if that would have uncovered that condition, the methylmalonic acidemia. It may have. But it certainly would have gotten him IVs, which is one of the treatments he required in order to keep things stable.
Just that knowing that everything was different at that point after basically a week of illness and it was a really rough week of illness. And then just realizing that there is no turning back.
Keep Looking
You have to keep looking, and I have a lot of parents who reach out to me and say, “What was it that you did for your kid?” Here’s the deal. My kid is impacted in different ways than your kid. So what works for my kid may not work for your kid. It may, it may not. Go with your mom gut because it’s just what your kid needs and know where to look.
It is a very, very, very tedious process. I know the one thing I hear a lot of the time is, “But I don’t have the money.” You need to think about later, and I know we all do. Not figuring this out now is going to have profound implications later on.
The Highest High
We got involved with Berklee School of Music, and I started seeing his amazing talents. He has perfect pitch.
He’s a kid who sort of flash reads the music but doesn’t read it while he’s playing. It’s just like that, and then it’s there. If he misses a beat, he knows where to come back in, and he really, very much understands music on a level that most people don’t. Just seeing his success and his happiness with music has been just such a highlight.
Learn the Top Five Things Ashton’s Mom Did
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Sources & References
Elamin, N.E, et al. Brain autoantibodies in autism spectrum disorder. Biomark Med. 2014;8(3):345-52.
Frye, R.E., et al. Blocking and Binding Folate Receptor Alpha Autoantibodies Identify Novel Autism Spectrum Disorder Subgroups. Front Neurosci. 2016 Mar 9;10:80.
Frye, R.E., et al. Cerebral folate receptor autoantibodies in autism spectrum disorder. Mol Psychiatry. 2013 Mar;18(3):369-81.
Frye, R.E., et al. Treatment of Folate Metabolism Abnormalities in Autism Spectrum Disorder. Semin Pediatr Neurol. 2020 Oct:35:100835.
Mader, S., et al. The Role of Brain-Reactive Autoantibodies in Brain Pathology and Cognitive Impairment. Front Immunol. 2017; 8: 1101.
Phunsawat, P., et al. Folate receptor alpha autoantibodies in children with autism spectrum disorder. Biomarkers. 2022 Dec;27(8):715-719.
Quadros, E.V., et al. Folate receptor autoantibodies are prevalent in children diagnosed with autism spectrum disorder, their normal siblings and parents. Autism Res. 2018 May;11(5):707-712.
Rossigonal, D.A., et al. Cerebral Folate Deficiency, Folate Receptor Alpha Autoantibodies and Leucovorin (Folinic Acid) Treatment in Autism Spectrum Disorders: A Systematic Review and Meta-Analysis. J Pers Med. 2021 Nov 3;11(11):1141.
Wells, L., et al. Folate Receptor Alpha Autoantibodies in the Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) Population. J Pers Med. 2024 Jan 31;14(2):166.
