*Photo at left is of Charlie Abrahams and Tim Indermittee - 2 seizure free kids, circa 1996.
When Charlie started the Ketogenic Diet and his seizures went away so dramatically at the end of 1993, I asked Dr. Freeman from Johns Hopkins three questions.
1) Why did we have to find the diet on our own?
2) Why didn't any of the pediatric neurologists we saw tell us about the diet?
3) Why, even when we learned of the diet as a treatment option, did they try to talk us out of it?
Although I didn't fully grasp the dark implications of his answer at the time, here's what Dr. Freeman said, "The Ketogenic Diet will never become popular again if you try raise awareness through traditional means of medical communication (meetings, papers, etc.). If you want to help restore the diet's rightful place as an early treatment option for children with seizures you need to circumvent the medical community and go straight to the public with this information."
Dateline NBC found out about Charlie as we were making our introductory video to the ketogenic diet and came to film his story.
In anticipation of what Dr. Freeman called "the deluge" from the huge public demand that would occur when the diet was revealed to the world on a national level, he and the Charlie Foundation held a conference at which directors from seven other epilepsy centers from around the country came to Hopkins with their dietitians to learn about the diet. Nonetheless, the public demand from the broadcast caught the medical community largely flat footed. Dr. Freeman said that his clinic alone got over 5,000 calls during the week following the broadcast.
I also tried to read as many of the thousands of letters and requests for information we received at The Charlie Foundation. They were incredible: grateful for hope, angry about lost years, heartbroken over potential unnecessarily damaged lives.
But one letter stood out as a new direction to reach the public. It was dated 10/27/94 and was kind of a stream of consciousness from Connie Indermittee, a Chicago area mom who had seen Dateline the previous night. The program had triggered memories of her experiences and feelings from the mid 1970's when she found the ketogenic diet for her son, Tim. Though in many details it was uniquely dramatic, in essence it was the story of all the families who have had to battle through epilepsy's costs, stigma, medical resistance, and ineffective and debilitating drug treatments to find diet therapy.
I read her letter and made three phone calls.
The first was to Connie to ask if I could come visit.
The second was to Dr. Freeman to share the story. (Tim had started the diet at Hopkins also).
The third was to Meryl Streep, who had helped us with the introductory video, to ask, "What do you think?
Please take the time to read the letter below from Connie Indermittee which ultimately provided the plot for the movie "First Do No Harm", written and directed by Jim Abrahams. We wanted to share this very special letter beacuse Connie's story represents the story of EVERYONE who at one point, may of felt helpless as a parent to find a treatment that works for their child or loved one. Thank you Connie and the entire Indermittee family for continuing to inspire everyone to never give up.
See transcribed letter below handwritten letter.
In April 1978 my 3 year old son had 1 gran mal seizure. We took him to the hospital and all the tests proved nothing. In the next 7 months, we took him to 6 other hospitals, 21 doctors, and 38 drugs. He had between 150 and 200 seizures a DAY. He spent the last 2 1/2 months at Pres-St. Lukes in Chic (Chicago) in intensive care. He was scheduled for exploratory brain surgery. I was almost praying Tom would die instead of living the rest of his life as a grossly retarded person with this problem.
I must stop for a minute and tell you, as I write this chills run down my spine. This was a nightmare that you relived for me on Dateline. I was going crazy trying to (self) cure my son. I went to the U of I Library and read - for weeks - from the time they opened to closing.
I got a copy of Sam Livingston's book. I read the Ketogenic Diet. I called Baltimore, They told me to come right away -
I tried to take Tim out of the hospital. I realized I'd LOST the custody of him. They would not let me transfer him from Pres-St. Lukes to John Hopkins. I stole him from the hospital. I had the help of 2 others to pull it off. He was on Valium IV 24 hour plus 8 other drugs.
I knew he could die. They knew he could die. He was seizing every 1/2 to 3/4 hour.
We had an ambulance come in the middle of the night. (at shift change) Took him to a commercial flight to Baltimore. Pulled the IV so we could board- wasn’t sure if he'd live to see Baltimore. We arrived - went to Livingston clinic - went to J.H. Hos. - 3 days starvation - went on the Ketogenic diet. A pure miracle -.
Tim is 19. He has not seized since that trip to Baltimore. He is a smart beautiful boy. He attended 1 year of college. He's a lucky kid, like yours.
Since, I tried to tell people about this method of treatment. The doctors here in the Midwest would not even consider its use. They would not admit that this is the cure for children with multi seizure.
If I had to do this all over again - I don’t know if I could. It financially devastated us. My husband lost his job. My other 2 children were virtually abandoned by my husband and I. We begged Fed Land Bank not to take the farm from us. The neighbors helped by taking the other kids, filling the freezer with food and most of all their prayers.
I stayed at Notre Dame Convent in Baltimore, as I had not any money for a motel. I stayed in the cloister as that was the only place there was to stay. All the sisters prayed a miracle would happen. It did. The Ketogenic diet saved my son.
The hospital taught me how to administer the diet. They were great. they wrote all the costs off as they knew we were totally financially broke.
For 2 years I followed the diet with Tim. We found that to be very hard, but we did it.
I have shopping bags full of medical records that would blow your mind showing the various treatments. I had doctors telling me they exhausted every treatment known, so just take him home and live with him seizuring - with no hope for any future for Tim.
As I write this, my heart is skipping. I remember like yesterday the ordeal we went through. I wish that NO ONE, ever. I tried so hard to tell my story to Readers Digest, local and larger news - media, and they weren't interested. Think how many children could have been saved.
Please write me. I may be of help to you and the awareness of this treatment. Keep it in mind that no doctor ever - in Chicago- had ever "tried" this diet. I begged them. They would not. When the tribune writer realized that I was bashing some of the most thought of doctors in the Midwest - they canned the whole story. To this day the pediatrician who first took care of Tim does not believe that is what cured Tim's seizure problem.
I almost hate all doctors now. They almost killed my son.
By the way - how we got to fly to Baltimore - My neighbor was a doctor and a pilot. He arranged the flight - the ambulance - the escape from Pres. St. Luke's. He could have been fired from his airline and lost his license to practice medicine. The risk he took was huge - the results were worth it.
Again please let me know you received this. I now realize someone else went thru the ordeal of this size.
Please excuse this poorly written letter. I shake when I think of those days - I forgot to slow down while writing - but it's readable, so I'm sending it. I kept a daily journal during those days and you relived them last night.
Please send me the video. thxs-"