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My name is Eliana Silbermann. I was diagnosed with an extremely rare and severe seizure disorder called infantile spasms at 6 months old. I was put on a diet where 75% of my calories came from fat. AMA!
Here is my story used as a case history at John Hopkins Hospital. Written by my mother:
Eliana was diagnosed with Infantile Spasms at 6 months of age. She had not rolled over, was not using her hands, and was becoming increasingly stiff and spastic. She was losing the ability to hold her head up, and suffered violent jackknife spasms. We were told that she would probably grow up severely retarded with many physical problems.
The first drug we tried was ACTH. Ellie became withdrawn and irritable, and stopped making eye contact. She cried all day and all night, except while nursing. She had fits of uncontrollable rage so bad that another customer in a grocery store accused me of abusing her. Though the ACTH moderated her EEG somewhat, and the seizures were somewhat less violent, they did not decrease in frequency, and as she suffered from a half dozen illnesses at once due to her weakened immune system, her developmental skills dropped to nothing.
I left New Orleans and spent 13 weeks in Los Angeles looking for answers from one of the top researchers in infantile spasms. He put Ellie on a DOUBLE dose of ACTH. She didn't sleep, she didn't respond to anyone, she developed the extreme cushingoid features associated with the drug. She had thrush so bad from the lowered immunity, that the entire inside of her mouth, her neck and face was white with fungus. Double dosing did not work either. We considered brain surgery, but the PET scans were inconclusive (I can't believe we actually contemplated removing half of my daughter's brain). We then tried Tegretol. Ellie's seizures stopped for two months, and she began to develop, smiling again, learning to roll over and to sit up. Then, at one year (on my older daughter's third birthday) Ellie had a breakthrough seizure. Her seizures rapidly climbed back up to 20 a day. We were devastated. We experimented with dosage levels, but nothing worked.
Then someone on the Internet's epilepsy discussion group suggested that I read Seizures and Epilepsy in Childhood, which contained that wonderful chapter on the ketogenic diet. I had seen one brief reference to the diet in a medical paper when Ellie was first diagnosed, but when I brought it up to my pediatrician her response was "I would never put a growing child on this diet." End of story. But after reading the chapter in this book from Johns Hopkins, I went to the medical library and did some research on my own. Most of the references were in very old neurology texts and journals, but the more I read the more convinced I became that the diet was our answer. Felbamate was our only other option. In December of 1993 we had an appointment with her neurologist. She was reluctant to put her on Felbamate because she said that it hadn't been well tested in young children. I tentatively suggested the diet. After discussing it with her colleagues, she told us she was very willing to give it a try.
In January of 1994, Ellie was hospitalized to begin the diet. It took a month of fine tuning until she had a day free of seizures. At first,(the dietician mistakenly told us that protein did not need to be restricted, but upon re-reading the papers we phoned our neurologist who confirmed the error. Elimination of Tegretol also helped, because of its high sugar content.
My parents were visiting at the time and I remember very clearly the whole family was sitting watching TV when my father suddenly said, "I haven't seen Ellie have a seizure today, have you?" Not one person in the room had seen a seizure. We watched her carefully for a few more days, but she remained seizure-free. She has been seizure-free ever since (down from 50 seizures per day at her worst).
Last Monday, almost a year after starting the diet, she had an EEG. The neurologist said it was completely normal! This child's EEG went from wild hypsarrythmia to COMPLETELY NORMAL because of a diet! She is now 2.5 years old, bright and curious, with no physical handicaps. She appears to understand much of what we say, and is even talking. We have high hopes that she will be able to lead a normal life, despite the dismal odds we initially faced.
My Proof: http://www.charliefoundation.org/who-we-are/who-2/read-keto-stories/item/626-elianas-story http://imgur.com/a/h51LA
ketokidcured1 karma
lol. I eat ham and to me it looks like what I'd imagine human meat to look like. I've never seen human meat though.
ketokidcured24 karma
I eat a normal diet now. I was not on it for very long. I'm 23 now and it has been 2 decades since it was stopped.
A lot of heavy cream(usually put in a bottle instead of milk or formula), avocado, mayonnaise, eggs, coconut oil, cauliflower and other high fat foods like that. My parents told me they even gave me a stick of butter once but I wouldn't eat it.
Most kids eat a lot of bacon but my family are Orthodox Jewish so I did not.
ketokidcured1 karma
No it is very low in carbs but you can replace high carb foods with it.
For example pizza crust can be made with cauliflower instead of flour.
ketokidcured11 karma
Not it was idiopathic; doctors never found the cause.
At one point they thought they had the focal point found and were going to do a hemispherectomy (remove half of my brain) but they were wrong and never found that spot again. So I didn't do the surgery.
zampe2 karma
I'm a bit confused because the story says she is now 2.5 years old but the link says she is starting college now. I guess the story is pasted from an old source? Any information regarding life from 2.5 years old until now? Has there been any side effects of the Keto diet? I have read there can be hormonal issues for women who are on it.
ketokidcured17 karma
Oops sorry. the case study in the description was written in 1995. The story in my link was written when I was 19 which was the year 2011.
Now I am 23. I graduated college and am working in management although I'm applying for a phd in neuroscience.
I was completely cured. Even though I started speaking so late I caught up really quickly--with the help of a speech therapist. I don't think I have any long term side effects, but there are a lot during the diet. such as digestive issues, fatigue, irritability, chills and sweating, frequent urination etc. I actually did not know there were hormonal effects, but I'm haven't been on it for about 2 decades so I'm not sure it would affect me.
I was seizure free until about 16 when I developed very mild ones. The focal point is in my motor cortex and causes my left arm up to the elbow to become paralyzed for 30 seconds-2 minutes, and my fingers to painfully curl to my palm. After that the arm is really weak and a bit numb, but no other body part is affected. It has progressed to a grand mal about 3 times since I was 16 until now at 23. But my medicine is fine tuned and stops them completely.
sh3p12 karma
Hey,
I am currently doing keto and I believe it is one of the best things that I did for myself. I am always trying to learn more about it aside from the fact that it is great for weight loss.
My questions are: How long were you on keto? Do you think that the diet had any negative effects on you? Do you consider going back on keto?
ketokidcured1 karma
I was on keto for about 2 years total. I continued a bit after all the seizures stopped and gradually was weaned from it.
It definitely had short term effects while I was on it. Digestive issues, irritability etc. Long term I'm not sure. I doubt it.
My parents tried forcing me onto the keto diet but I ended up losing 20 lbs in a month so I stopped. My weight was already in the very low end of normal range, dropped below healthy weight, and my doctor during a regular checkup asked if I developed anorexia. So I stopped.
IGrapedGilbertGrape2 karma
With a diet like that, i must ask.. is there actually such a thing as too much bacon?
ketokidcured20 karma
I actually did not eat bacon because my family is Orthodox Jewish.
I eat bacon now though and it is amazing.
Sedawson741 karma
I hope you continue to have a seizure free life. You are seizure free right? Its interesting they went the route of the ketogenic diet, my son was diagnosed at 7 months with idiopathic infantile spasms. He passed away when he was 5 in 2009. It was a text book case. He presented with jack-knife seizures only once or twice a day, but after three days of observation they told us he was having hundreds a day. The adamantly refused to put him on the ketogenic diet, instead going with the ACTH and trileptal. All in all, his meds were close to 900 bucks a month. Have there ever been developmental delays? Or any autism like issues? One more for you, did your parents ever tell of the issues they may have encountered with hospital staff or others?
ketokidcured1 karma
Fist of all, I am genuinely sorry to hear of your loss.
At 16 I redeveloped seizures in a very mild form that originated in my motor cortex. They present as very brief paralysis with a single jerk only in my left arm to the elbow, along with painful curling of the fingers (like someone with severe arthritis but they straighten out again). Before that I did not have any at all.
I started speaking late, but caught up rapidly once I did so. I had speech therapy for pronunciation when I was in kindergarten. I am not sure if this is related but I also have a learning disability related to math. My brain doesn't process numbers correctly and they remain extremely abstract. I can't do arithmetic and often find it hard to see the difference between 100 and 1000 written out (or 10,000 and 1,000,000). I was very late to learn how to count. etc. But I work around it.
No autism issues although my dad has high functioning autism.
Yes they told me. They were very against the ketogenic diet. I was actually one of the first children put on it since the 1920s (I was born in 1992) along with Jim Abraham's son (the movie director). She talked a lot with Jim Abrahams, especially since we went to LA to get treated. The doctor was a huge asshole. My mother got tons of judgments from other parents and random people in general and accused of child abuse by some of them.
Condoggg1 karma
I have been on the keto diet (CKD) for over a year now! Not for any medical reasons just trying to get ripped. I have heard and experienced numerous benefits to this diet, but in the grand scheme of things its still relatively unknown or also looked at with disgust by those less knowledgeable than I on the subject. Could you ever see yourself going back on the diet?
ketokidcured1 karma
I was cured of IF but at 16 I developed very mild seizures originating in my motor cortex.
My parents tried forcing me onto the keto diet but I ended up losing 20 lbs in a month so I stopped. My weight was already in the very low end of normal range, and my doctor during a regular checkup asked if I developed anorexia. So I stopped.
Condoggg1 karma
Weight gain or loss is dependent on caloric intake, not whether it's from carbs/fat/protein. You were probably not eating enough.
ketokidcured1 karma
True but I found the diet made me full very easily. I didn't really want to be on it because my medication controls my current seizures well. They wanted me to do both though.
fooburger1 karma
I can appreciate that your parents would push for that. After all, it worked for you for IS, which is one of the more refractory epilepsy syndromes. I'm sure you know they mean well. Many of the epilepsy medications now are very well tested and have very limited side effects, even with long term usage. We don't have great data on the ketogenic diet, except for a whole lot from northern native american populations. There's some suspicion that those populations adapted to keto over many generations and thus may not serve as good comparisons for the rest of us on a long term basis.
ketokidcured1 karma
yeah I'm Lamictal and Gabapentin and after an adjustment period of being nauseous and dizzy a lot they don't have too many side effects.
Gabapentin sometimes makes me unable to walk properly for about 20 minutes after taking it. I basically just stumble around uncoordinated a lot and then I'm fine. Luckily it doesn't happen as often now.
havereddit1 karma
Hmmm...I'm guessing IGrapedGilbertGrape doesn't know the implications of a last name like Silbermann, right? Bacon's not such a friend?
ketokidcured1 karma
No, because it has barely any carbs and is an excellent replacement for rice and flour to use in recipes.
Tom_Waited1 karma
Have you considered medical cannabis? I know many kids with seizure disorders (Mito, LGS, Dravet) that cannabis has worked for.
ketokidcured1 karma
I do not have IS anymore. I have very mild seizures in my motor cortex that is controlled by Lamictal and Gabapentin plus Klonopin as needed.
Because they are in the motor cortex I could never get surgery if it came to that. So I would try medical cannabis if needed.
throwinitawaaay1 karma
What is your opinion on people using medical marijuana to treat seizure disorders?
ketokidcured1 karma
I fully support it.
I support limiting marijuana use to medical reasons but being very generous in what conditions warrant a prescription. This I feel will reduce stigma. I may wrong of course.
fooburger1 karma
In 1995, Vigabatrin (now a first line treatment option for IS) was not available in the US but was in Canada, Mexico, and the UK. Did you parents consider traveling abroad to treat you with it?
ketokidcured1 karma
They considered it but it was tough because that drug can cause blindness.
however they found specialists in LA who eventually let them try the keto diet. The side effects on the diet are not usually permanent and are less extreme.
ketokidcured1 karma
Checked? As in genetics? No. I don't think it was possible before 1992. As far as I know no one knows if there is a genetic component or how much there is.
My grandmother is an identical twin, so my dad's cousin is like a first cousin to me genetically. He has seizures but no one had IS.
[deleted]52 karma
Would you eat a redditor, considering they are on average 75% fat?
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