Ketogenic Diet Classic 4:1

[KarenB]

What types of seizures (and how frequent) were you experiencing before starting the alternative treatment?

Our son had seizure disorder from age 1 to when he initiated the diet at age 7. He typically had night seizures (or upon awakening) grand mal (tonic/clonic), lasting about 3 minutes, about 1 every month or 2. But 6 months prior to initiating the diet, his seizures changed to screaming out and fixed stare for several minutes. These he began to have several times a week, sometimes several times in one day. He had a pattern where he would be seizure free for about 4 days, then have 3 days of seizures. He also still had the Grand Mal seizures, but not as often.

What anti-epileptic drugs (medications) had you tried prior to the alternative treatment?

Keppra (failed), Topomax (worked for 3 1/2 years, but then failed. Caused loss of speech), Trileptal (failed and caused psychotic and autistic like symptoms), Lamictal (had allergic reaction on initiation), Depakote (was on at time of diet initiation. Later weaned off due to liver issues).

How long did you try the alternative treatment? (Not applicable to Lobectomy or Gamma Knife)

He is still on the diet. It's been 1 year and a half now.

If the treatment requires active participation, how diligent were you in applying it?

This diet involves a lot of commitment and a parent who is sort of a control freak and very organized. That's me. I spend about 10 to 15 minutes extra time in the kitchen for each meal. If we go out, I have to prepare his meal, and pack it in the lunch box to take with us to restaurant. If we travel, I have to plan ahead and figure out what to take and how to pack it.

What changes (improvements or otherwise) occured with your seizure control with the alternative treatment?

For the first 6 weeks, no change. In fact, he got worse, went into status epilelepticus, and ended up in ICU in hospital. But after several days in hospital his siezures stopped, and they released him, and he then went 11 months with no seizures at all, and normal EEG. After being seizure free for 11 months, he got a bad stomach virus, and lost a lot of weight. His nutritionist changed the diet for him to gain weight and increased his carbohydrates. This caused him to start having seizures again, and even though we went back to the old diet with fewer carbs, haven't been able to regain the control that he had before. Still working on getting control back.

What (if any) adverse effects/events did you experience with the alternative treatment?

Medically speaking, none, except when he had the stomach virus, we couldn't put him on the BRAT diet, and the high fat caused that illness to be prolonged. From a social, practical standpoint, it has limited doing things on the spur of the moment.

How much did it cost you to implement the alternative treatment?

I think the original visit to the nutritionist was around $300 or $400, but it was covered by insurance (many insurance plans don't cover). Our insurance has covered everything, but even if we were paying out of pocket, the medical expenses are minimal compared to what we were spending on meds.

We have to spend a little more on groceries -- buying things like heavy whipping cream and avocados and fruit and veggies that are permitted on diet. Maybe $10 more a week.

 

[Bernard]

Thank you Karen for sharing your experience. I'm sorry that it didn't work out after the stomach virus. Maybe one day Paolo's ALAC supplement will become more available.

 

[KarenB]

Well, we're sticking with the diet for now, in hopes that the seizures will go back into remission. We really haven't any other options anyway. He is not a candidate for brain surgery, and we've been told by his neurologist and epileptologist that the chances of another medication working for him is about 2%. They weaned him off his Depakote, which was his last med. So, right now, he's med free, which is a good thing, cognitively speaking. The only thing left is the vagus nerve stimulator. But we're working with tweaking the diet to see if that will work. One option is MCT oils, which we haven't used yet, because our son has a tendency to have diarrhea, and MCT oils make that worse. But if we change other aspects of his diet, we might be able to add in the MCT oils without the stomach issues. Another option is to adjust the ratio of fat to carbs & protein.

 

[MonkeyBoy]

KarenB I commend you for continuing the fight. It is so easy to just give up and allow the world to dictate the terms. I hope you read through all of RobinN's posts and learn from her experiences. What supplements have you tried so far with your son? There are some critical ones that have proven to make a difference. Diet and Lifestyle modifications in the right direction have the possibility of yielding very positive results.......

 

[KarenB]

The only supplements he gets is Carnitene, which is in his Nutrivene vitamins

As far as lifestyle changes, we have found that TV has a marked effect on his autistic like symptoms (and when he gets into a really wound up autistic like state, that often precedes a seizure). We've cut out TV watching for him altogether (he's permitted one hour of very gentle music DVDs that are educational in nature). We limit our own TV watching to things like sports or nature or sitcom shows until his bedtime (hold off on high action shows til he goes to bed) as the loud noisy shows, especially with violence are disturbing to him and get him overstimulated, which will sometimes trigger seizures. We also play soft classical music in his bedroom before he drifts off -- the idea is to calm his brain down and music really has a marked effect.

 

[KarenB]

Thought I'd post an update. Jonathan's nocturnal seizures grew worse in the past week, to the point where he's been having several tonic or tonic/clonic seizures every night. So, after numerous doctor visits and testing, have discovered he is hypothyroid, which, in itself, wouldn't cause seizures. However, his nutrionist pointed out that metabolism is strongly affected by thyroid, and if his levels are low, he may not be absorbing fats and nutrients as well, which would skew the effects of the diet.

So...today -- 3 new meds -- 1) Thyroxin (for thyroid), 2) Zonegran (for seizures), and 3) Diazepam (to help wean him off the Clonazepam that he's been getting every night for the last week as rescue med). I'm still a bit confused about the Diazepam -- if it's purpose is to wean him off of Clonazepam, what happens when it's time to wean the Diazepam -- which is also addictive?

Anyway, we'll see if this cocktail works. I'm not a fan of polytherapy, but the neuro assures us that the diazepam is just temporary to get the seizures stopped and to wean him off the Clonazepam, and once he is stable, he should be able to maintain on the diet and with a low dose of the Zonegran. So...we start all this tonight and tomorrow morning and see what happens. Go back to neuro in one week.

 

[KarenB]

Another update:
An finetooth comb analysis of Jon's seizure log (in which I'd entered everything including diet ratio, medications, vitamins, etc., along with things going on in his life like lack of sleep) -- anyway, discovered that his seizures suddenly got worse when I cut his vitamin/supplement dose in half (in a misguided attempt of decrease the carbs in his diet).

We added those back in, and the very next night he was seizure free, and since then (early days yet), has had 77% reduction in all seizures.

Have also just added in MCT (medium chain triglycerides) oil -- starting really small and working up. This is supposed to enhance the keto diet because of the way these fats are absorbed and utilized. Will report on how that's working -- will probably take a few weeks.

The meds brought the tonic clonics under control, but had absolutely no effect on the number of the tonics he was having. The vitamins/supplements have decreased the number of tonics by 2/3, and also decreased length and severity.

***
Other areas that will be looking into (don't want to add everything at one time, because want to find out what is really working) are Omega 3 oils (he gets some of that now in his flaxseed meal), and more magnesium, and also maybe the anti-inflammatory diet (which can be done in conjunction with the keto diet).

 

[KarenB]

Oh, I did make an error several postings up when I said the only supplement he gets is Carnitene. I looked at the ingredients of his Nutrivene D, and along with multivitamins, it also includes Taurine, Selenium, Magnesium, and a whole bunch of other supplements that are antioxident in nature.

The idea is to reduce the effects of oxidative stress on the brain == this is apparently more of an issue with people with Down Syndrome, but there's some research that points to the link between epilepsy and oxidative stress, both as a consequence of seizures, as well as a possible cause of seizures. Oxidative stress is toxic to the brain -- produces peroxide and free radicals that actually damage brain cells, which can lead to cognitive loss as well as progression of epilepsy disease.