The Charlie Foundation had its yearly symposium in Banff, Canada a few weeks ago and it reminded me just how much everyone on the Ketogenic diet owes this foundation for making this fringe form of treatment for epilepsy visible and available again. We want to personally thank The Charlie Foundation for opening the floodgates and raising awareness of the Ketogenic Diet as a treatment for not just epilepsy, but also for Glut1 DS and other metabolic and genetic disorders
Like Charlie Abrahams, my son Drake will be on the diet long term. He won’t be able to wean off of it after two or three years like the majority of epilepsy kids. This is it. Self denial will have to be a permanent facet of his personality. But we feel lucky that we are doing this “special diet” in 2016, twenty-two years after this Dateline Special.
This Dateline Special from 1994, of the Abrahams family, is the first time many people had heard of the Ketogenic diet. For the first time in four decades the Ketogenic diet had publicity!
It is amazing to me that if it wasn’t for the Abrahams, one lone doctor and his dedicated dietician, the Ketogenic diet wouldn’t exist as a treatment for Glut1 Deficiency or Epilepsy today! In the 90’s the Ketogenic diet was all but forgotten — an antiquated treatment that had been replaced by anticonvulsant drugs. Dr. John Freeman and his unwavering dietician Millicent Kelly (who by then was in her 70’s) were the only people who still practiced this diet in the world! and on only just a handful of patients at Hopkins.
John Hopkins Hospital was coincidently the first hospital in the 20’s and then the last hospital in the 90’s that still prescribed the Ketogenic diet to epilepsy patients. But by the 90s, it wasn’t an accepted treatment — perhaps because there were so many cutting edge seizure medications or perhaps it was seemingly too hard for kids to comply with (as if watching your kid have seizures, or in my case struggle with ataxia, is any easier!). Then Jim Abrahams, a Hollywood movie producer, re-discovered the diet as a last resort treatment for his son Charlie’s difficult to control epilepsy. After Charlie endured thousands of seizures, possible permanent cognitive delay, EEGs, MRIs, CAT scans, PET scan, medications, brain surgery, homeopathic treatments, faith healing and countless prayers, his parents started Charlie on the Ketogenic diet at Hopkins… and it immediately worked!
The Abrahams family was extremely angry and frustrated that they hadn’t been informed about this dietary treatment sooner — that the medical community promoted a fruitless brain surgery over a proven and effective treatment! And that they, along with other parents of Epilepsy kids, were actively discouraged from starting the Ketogenic diet once they had discovered it even existed! Why on earth would doctors keep prescribing anticonvulsant drug after anticonvulsant drug, when they know the likelihood of it helping decreases each time. Sadly, it is perhaps because there was no way a drug company could make this diet into a pill and make a profit off of it.
Alarmingly, when Charlie’s initial doctor was asked why he actively avoided the Ketogenic diet as a treatment, he said, “because I don’t think we had exhausted all of the medical approaches yet. There were actually other medications that we hadn’t tried yet.” Hindsight in this case tells us that the medical profession sometimes ignores food as medicine to the detriment of patients.
It took Ken and I three years to make our way to the correct diagnosis and treatment for Drake, and having this dietary treatment as the first form of treatment for Glut1 Deficiency is directly linked to the Charlie Foundations efforts. We wonder what Drake’s life would be like if we hadn’t started the Ketogenic diet 9 months ago. Drake thrives on this high-fat, low carb-diet, yet it is a mystery that Drake is cognitively and physically normal for a kid with Glut1. He does have mild delays, but perhaps Drake would have more delays or permanent brain damage if he hadn’t started the Ketogenic diet when he did. Maybe if he had started the Ketogenic diet sooner, he would be further along now — we will never know.
Hopefully the medical community can let other parents know about this diet sooner. Perhaps after two seizure meds fail, rather than three. And like I have said before, focusing on how hard the diet is misses the point and might set some parents up to fail! The medical community should take it’s cues from The Charlie Foundation and instead champion how much easier it is to have a dietary treatment that can have miraculous results for some kids with Glut1 Deficiency and Epilepsy. It’s not a cure, but it is so much better than watching your child suffer or take fruitless medications.
We do want to be clear, seizure medications in many cases provide good seizure control and can be very effective. I don’t know much about seizures or epilepsy, but I do feel lucky that when we did get Drake’s genetic test results, the Ketogenic diet was immediately offered and discussed with us.
Check out this link to read more about the history of the Ketogenic Diet.
I suspect that this decade and the next will provide more clear answers about the mechanisms of everything we put into our body and how our genes, body, and biome manifest as us – healthy or sick, or somewhere in between. Drugs in some cases are one ingredient of that mix to keep us thriving; but magic pills are unlikely to be the entire solution. Sometimes – this time –food is medicine. Thanks to Millicent Kelly, and the tenacity of other parents, my kitchen is the prescribed pharmacy that keeps Drake healthy, one chocolate-covered breakfast cookie at a time.