[Ketogenic] Efficacy of Ketogenic Diet for Drug-resistant childhood epilepsies

KarenB

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Some random studies I came across recently:

Refractory Epilepsy (of all sorts)
Study of 35 children at Siriraj Hospital, Bangkok, Thailand, 2001 = Classic 4:1 ratio
67% had 90% seizure reduction after 12 months on diet
http://www.ncbi.nlm.nih.gov/pubmed/11759962

Study of 20 chidren at Siriraj Hospital, Bangkok, Thailand, 2004
13 in the cohort had generalized seizures. Children were put on 4.4:1 or 4.5:1 ratio
Results after 6 months:
25% seizure free
50% more than 90% seizure reduction (75% when including seizure free kids)
19% more than 50% seizure reduction (94% when including seizure free and >90%)
6% less than 50% seizure reduction
http://www.si.mahidol.ac.th/Th/publication/2004/Vol87_No4_432.pdf

Lennox-Gastaut
Study done at Johns Hopkins

51% more than 50% reduction in seizures
23% more than 90% reduction in seizures
1% seizure free
http://www.ncbi.nlm.nih.gov/pubmed/22443637

Doose Syndrome and Infantile Spasms
Included in study of 31 children at Qilu Hospital, Shandong, China, 4:1 ratio
2 children with Doose syndrome – both became seizure free

16 children with Infantile Spasms
56% became seizure free
81% efficacy rate for all children w/ Infantile Spasms

Of all children (with drug-resistant epilepsy), 71% efficacy at 3 months
http://www.ncbi.nlm.nih.gov/pubmed/23404539

Dravet Syndrome
Study done with 20 children w/ Dravet at Hospital de Pediatria, Buenos Aires, Argentina
After 1 year, 13 children remained on diet. Of these, 100% had at least 50% reduction in seizures, and all were able to reduce their medications:
15% were seizure free
62% had more than 75% decrease in seizures
23% had more than 50% decrease in seizures

http://www.ncbi.nlm.nih.gov/pubmed/16146451

Myoclonic-Astatic Epilepsy
Study done w/ 11 children at Hospital de Pediatria, Buenos Aires, Argentina, 2006
After 18 months, 6 children remained on the diet (4 dropped out because the diet didn’t work for them, and 1 because of persistent vomiting). All of the remaining 6 children (54%) had at least a 50% seizure reduction, and 2 became seizure free and medication free.
Of the original 11 children, at 18 months:
18% seizure free
18% had 75% decrease in seizures
18% had more than 50% decrease in seizures
 

Nakamova

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Wonder if there a comparable number of studies done with adults on the Modified Atkins Diet, or if it's still too "new" to generate enough data.
 

KarenB

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OK, I found it on the John Hopkin's site:

Study on Modified Atkins Diet w/ Adults, 2008
30 adults who had failed at least 2 meds, and had an average of 10 seizures per week.
About half of adults on diet had achieved 50% or more seizure reduction in first month
10 of the adults dropped out by the 3rd month because they couldn't stick with the diet
14 of the adults continued on the diet after the study ended at 6 months, as they were experiencing good results.
Side effects (cholesterol, triglycerides) mild
http://www.hopkinsmedicine.org/news...ins_Diet_Can_Cut_Epileptic_Seizures_in_Adults
 

KarenB

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Johns Hopkins is currently doing a new study with adults on the MAD (Modified Atkins Diet).

Here's the results of a small study of the MAD with children at Johns Hopkins
20 children with between 4 to 470 (!) seizures a week that did not respond to meds
16 of the 20 completed the 6 month study.
4 kids (20%) became seizure free
7 kids (35%) had more than 90% reduction of seizures
13 (65%)of the kids had more than 50% reduction in seizures
1/3 of the kids did not respond to the diet

These numbers correlate pretty well to the results Johns Hopkins has been seeing with kids on the Classic Ketogenic diet. I think the kids are just as restricted in carbs, but don't have to keep such strict calculations on other foods. (However, I remember our Nutritionist tell us that she thought it was just as difficult)

I noticed that the kids in the Thai studies had a higher success rate than the kids in Johns Hopkins studies on the classic Ketogenic diet. I think this may be for 2 reasons:
1) The Thai studies had the kids on a 4:1 or 4.5:1 ratio, while the American kids are sometimes at 3:1 -- not as strict
2) I have talked with the doctors who did the Thai study, and they said they used coconut milk as one of the primary fat sources, because this was already part of the Thai diet and inexpensive here and that a lot of Thai couldn't tolerate the milk fats. The interesting thing about coconut fat is that it is high in Medium Chain Triglycerides (MCT) -- MCT oil derived from coconut oil is often as a supplement with kids on the Ketogenic diet to increase ketones (the body digests it differently than other oils.
 

KarenB

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This is a testimonial from a Mom named Fay -- you can meet her over at the Charlie Foundation website. She gave me permission to share her son's story:

My son, Scott, had 3 tonic clonic seizures in a row without warning at 3 1/2 years old.

We had no idea that the "baby startles" he never outgrew were actually infantile spasms until we saw the pediatric Neuro a couple of weeks later when he witnessed a cluster of them. We also found out that day that Scott was not extremely clumsy and wasn't tripping over his feet like we thought but was having drop seizures. He also wasn't ignoring us or tuning us out (he was diagnosed with Autism at age 2) but was having other types of seizures too.

He was immediately started on seizure meds. Within a few months the infantile spasms stopped but all the LGS seizures had started popping up like popcorn and our nightmare was only getting worse. The meds caused behavior problems, he had life threatening allergic reaction to a few of them or the meds simply didn't work.

Within 4 months of being diagnosed with "severe epilepsy" he was diagnosed with Lennox Gastaut Syndrome (the EEG showed the specific brain wave pattern) and was pretty much confined to a wheelchair because the seizures were so bad. He was also having serious behavior problems when the seizures weren't so bad. We tried all the meds and combo of meds but nothing worked for long plus he kept going into nonstop seizures a lot too.

At age 6 we started the ketogenic diet for the 1st time. It took about 1 1/2 years to get the right keto script to get the seizures stopped and took about another 1/2 year to get him off the seizure meds. We were off all but 1/2 pill away from being seizure med free when he had a severe asthma attack that we couldn't get under control without daily high doses of steroids. The steroids interfered with the diet and caused him to go out of ketosis which in turn sent him into nonstop siezures regardless of how we adjusted the diet or the meds.

So at age 9 we had to come off the diet and were back at square one with hundreds of seizures a day and meds not working. He had to have a g-tube placed shortly after having the VNS implanted. The LGS specific brain wave pattern and all the horrible seizures were back worse than ever. At age 15 Scott was confined to a wheelchair having hundreds of seizures a day, was fed 22 hours a day by a feeding pump via a g-tube, was in pull ups during the day and diapers at night, went into nonstop seizures so often we were in the hospital more than we were home and there were no more meds or med combo's to try. He was on oxygen, suction and was experiencing heart and lung problems that several pediatric specialists thought were caused by the seizures and the seizure meds.

Because his asthma had been stable and he hadn't required steriods in over 2 years, I asked our Neuro if we could try the ketogenic diet again and he agreed! So at age 15 1/2 we started the classic ketogenic diet again.

Scott's seizures stopped on the 3rd day of being on the diet- just like a snap of the finger!

A 48 hour EEG confirmed Scott was seizure free 4 months later so we started weaning meds thinking they were causing the lung and heart problems.

Once he was completely medication free we quickly realized the VNS was causing the heart and lung problems so the VNS was removed and within hours those problems resolved and so far have not came back (thank God!).

We were on the diet for exactly 6 years 3 days and were extremely blessed with more than a few miracles.

Today Scott is 23 1/2 years old. He is 100% seizure free, 100% seizure medication free, 100% behavior problem free, 100% behavior medication free, 100% g-tube free (eat and drinks a perfectly normal adult male diet completely by mouth by himself), 100% wheelchair free, 100% oxygen free, 100% pull up and diaper free, 100% padded furniture free, 100% helmet free, 100% elbow and knee pad free, 100% suction free, 100% pulse oximeter free and continues to do things we never thought possible!

The last EEG that was done in Sept 2012 was perfectly normal! No signs of seizures or LGS at all!

We would be 100% Neurologist free too but Scott suffers from Migraine headaches so we want to make sure we have a Neuro in case the migraines gets worse. Our Neuro said he would have a very hard time believing our story if he hadn't been Scott's Neuro and been part of our Keto team since Scott was 5 years old.

Scott went completely from one medical extreme to the other thanks to the ketogenic diet. He reads as well as a normal adult, cooks and can follow recipes, has won several art contests with his drawings, plays Special Olympics Baseball, loves surfing the internet, playing computer games and facebook chatting with family and friends. He loves going fishing, camping and spending a few days off with his adult siblings and his friends. He is mildly mentally challenged and still has mild autism but he loves learning, he is thriving and is very happy in spite of what he has been through.

By looking at him and talking to him you would never know what his life had been like before the ketogenic diet.

I would insist on being on the ketogenic diet (don't just "try it", DO IT!) before meds, regardless if you have the specific brain wave pattern for LGS or not. If your child is having seizures, then your child could possibly become completely seizure free and never experience the side effects seizure meds cause or go through the horrors most of us have watched our child go through.

I PROMISE YOU that if the diet works, every second being on the diet will be well worth the miracles you get if the diet works! We've been off the diet for slightly over 2 years and I still get goose bumps and cry thinking about how medically fragile Scott was and how close those seizures came to killing him before Keto and how normal and medically stable he is now.
 

Nakamova

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Scott's seizures stopped on the 3rd day of being on the diet- just like a snap of the finger!
Amazing!
 

KarenB

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Yes, some kids have dramatic results like this, and with other kids it takes some time to get everything tweaked. Actually, in Scott's case, the first time he was on the diet, it took awhile to get seizure freedom -- they had to keep "putting the pieces of the puzzle together" -- as Fay likes to say -- but the 2nd time worked the miracle.

Fay was a great encouragement to me when we went through our rough patch last Fall.
 

KarenB

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http://www.epilepsy.com/epilepsy/keto_news_may13?utm_source=Epilepsy Therapy Project

This is a new article by Dr. Kossof of Johns Hopkins about cholesteral and the ketogenic diet. While cholosterol rates do rise in some children when they first initiate the diet, the rates usually go back down to normal after a couple years on the diet.

Toronto Children's Hospital did a small study with a cohort of 12 children who started the diet with higher than normal cholesterol levels. All of these children saw a drop in total cholesterol levels immediately after initiating the diet, and all of the children had normal cholesterol levels by 6 months on the diet. 75% of the children attained normal triglyceride levels after 1 year on the diet.

These 12 children were placed on a version of the diet that featured the healthier fats(some were on MCT oil).
 

KarenB

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Honest Medicine

http://www.alternativemedicine.com/alternative-medicine/features/ketogenic-diet

"This diet was first developed for the treatment of epilepsy at the Mayo Clinic in the 1920s and went on to be championed at Johns Hopkins in Baltimore. It cured tens of thousands of children of their seizures for over 90 years at Johns Hopkins and other prominent medical institutions. However, in the 1940s, with the advent of antiseizure medications, its use declined considerably."

"John Freeman, MD, the physician who ran the ketogenic diet program at Johns Hopkins for many years, puts it this way in an article titled “Epilepsy’s Big Fat Answer,” in the February 2013 issue of Cerebrum:

The hallmark feature of the diet is the production of ketones (beta-hydroxybutyrate, or BOHB), the residues left when fats are burned in the absence of sufficient glucose. Glucose is an important source of the brain’s energy, but, contrary to popular belief, it is not the only potential source. Ketones are, in fact, a more efficient energy source for the brain and, for unknown reasons, make the ketogenic diet—high in fat, low in carbohydrates—more effective than current anticonvulsant medications in curbing difficult-to- control seizures."

"The ketogenic diet costs significantly less than the majority of antiseizure medications. Average oral anticonvulsant medication can cost anywhere from $14 to $866 a month. At the other end of the spectrum is ACTH, an injectable steroid used—until quite recently—to control infantile spasms, at a cost of approximately $240,000 a month. Many of these antiseizure medications have to be taken for the rest of the child’s life. The ketogenic diet is different in that children usually only need to be on it for about two years. After that, most can eat a regular diet and still maintain seizure control with less medication or none at all. Abrahams estimates that Charlie’s food while he was on the diet cost no more or less than the food for the other members of his family."

"The ketogenic diet has been found to improve 67 percent of the thousands of children with epilepsy who have had access to it since the 1920s. When appropriately supervised, its adverse effects are minimal, and the positive effects—in addition to improved seizure control and even a cure for epilepsy—include increased cognitive abilities and improved disposition and development."
 

KarenB

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http://globalnews.ca/news/737124/high-fat-diet-helps-epilepsy-sufferers/

"Today, things are very different. Denver is seizure-free, full of energy and off all medications thanks to the ketogenic diet."

"The diet was first developed jointly at the Mayo Clinic in Rochester, New York and Johns Hopkins Hospital in Baltimore in 1921."

"With a typical diet the body burns through glucose from carbohydrates for energy. On a ketogenic diet, the body burns a chemical called ketone bodies produced by the liver. Research has shown the ketone bodies may actually protect brain cells from damage during disease states.

Dr. Rho says the diet’s therapeutic potential may be larger than epilepsy.

“The components of the ketogenic diet may be effective for patients with alzheimers,” he explains. “There is interesting literature on brain cancer being a positive responder to the diet and we’ve done work here looking at autism as well.”
 

jejrrlq

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Wow. Even though my sons seizures are controlled with medication- his behavior is completely out of control on medication. No one will correlate the two. Have I read correctly that this diet must be started inpatient?
 

Nakamova

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Have I read correctly that this diet must be started inpatient?
The keto diet can be started in an outpatient setting (unless the child is <1 yr old) but there needs to be close monitoring by the neurologist and nutritionist throughout the process.
 

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The keto diet can be started in an outpatient setting (unless the child is <1 yr old) but there needs to be close monitoring by the neurologist and nutritionist throughout the process.
You would of course needs to follow your medical care team's procedures. AFAIK the keto diet is usually started in the hospital where you can be closely monitored.
 

KarenB

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With the classic Ketogenic diet, most children are initiated in the hospital (about a 3 day stay) -- where their blood sugar levels are closely monitored, and adjustment to the diet. Many kids experience "flu" like symptoms (like the Atkins "flu" that hits on about day 3) when the body switches from burning glucose to burning ketones for energy. Some hospitals start with a 24 hour fast, but that is falling out of favor. When our son started, he started out with a 1:1 ratio (fat to protein/carbs) for 2 meals, then 2:1, then 3:1 and finally 4:1 before being discharged. He didn't have any problems at all (no "flu") but that was probably because his dietician had already taken him off sugar and been increasing his fat intake (he was actually in light ketosis when we got to the hospital).

As far as behavior problems - -yes -- a number of the seizure meds can trigger behavior issues in children. Keppra is famous for this (in both kids and adults), but some of the other seizure meds that are also used to treat bipolar disease (for instance, Trileptal) can cause a "paradoxical" reaction in children -- i.e. -- normal kids start exhibiting bipolar characteristics when taking the med (our neurologist told this AFTER our son was almost expelled from school after one month on Trileptal). Diazepam also caused behavior issues for us (another paradoxical reaction, because benzodiazepines are used to calm people, normally). If you look at the side effects of most seizure meds, you will see that behavior issues, irrititability, mood swings, can be a side effect of many. However, I should note that seizures themselves (esp. temporal lobe seizures and seizures involving the hypothalamus) can also cause behavior issues.
 

cmackd

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Hi
Any experience of the Modified Atkins Diet?

We're 1 week in with our 2 year old.
We have had 1 seizure free day, bliss, but the seizures have returned.

How long does it take to be effective?
What to do if full seizure or other activity occurs ie up the day?
Can you overdo the fat on the MAD diet?

Thanks
 

KarenB

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I don't have personal experience with the MAD diet, but there's a Facebook page called "Ketogenic Parents Rock" -- you can request to join and there's some MAD diet people there who can share some tips. Also, the Matthew's Friends forum has some parents with kids on MAD.

As far as how long it takes to work -- some children get immediate seizure freedom, and for some children it takes awhile. It our case, it took 6 weeks to get seizure freedom -- he started out well for the first week, then had seizures again, and then had a really bad cluster of seizures (due to a sinus infection) and had to go into ICU, and then after being released he was seizure free for a whole year! Normally, you will see some changes (if it's going to work for your child) in the first 3 months. If you see some improvement, but not complete seizure freedom, you might want to try making some changes.

Whether on the MAD diet or the classic Ketogenic, you really should be doing it with the assistance of an experienced dietician. You need to have labs drawn on occasion to check your child's lipid levels (cholesterol, ect.) and electrolytes (esp. the C02 levels for acidosis) and blood ketone levels. Because, yes, you can overdo the fat, and your child can go into too deep ketosis, or into acidosis, which can be dangerous. You can check your child's ketone levels with the urine test strips you get at the pharmacy, and if it's over 160 (goes dark purple or black immediate, rather than in 15 to 20 seconds) -- -then that's an indication that ketones are too high. On the other hand, if the strip is very light pink (40 or less) then your child is probably not in deep enough ketosis to be effective. However, remember that the test strips can be affected by hydration levels (if she's a bit dehydrated, the test strips will be darker).
 

cmackd

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Thanks for your response. I will review ketone test as she is always very dark, the second darkest colour on ketostix strip.

We have been consulting with and visiting a forcialist dietician privately who claims yo have experience of ketogenic diet, not foevufuxslky MAD, but she seems happy to let us just go at it alone sn didn't concerned about any testing or screening. We've had her measurements and milestones checked as a baseline but no other tests. Our Neuro consultant said we would have to wait a long time got support for the diet due to waiting list and lack of resources but that patents can review resources online and many go it alone... So here we see trying!
 
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