Looking for alternative therapy for seizures

[dseideman]

I am new to this forum, but I have a 2 year old son who has had seizures on a fairly regular basis for a year. He has a couple of neurological conditions that cause them. We are on the highest dose of Keppra for his size and they want to add Trileptal. I am looking into options before adding a second med.

Does anyone know anything about cord blood for seizure disorders? We have started Feldenkris (Anat Baniel Method) and it has helped somewhat, but a lot with this gross motor skills! Also looking into implementing the "Sugar Buster" diet.

Thank you!

 

[Nakamova]

Hi dseideman, welcome to CWE!

Haven't heard of the use of cord blood for seizures. Different folks have had varying amounts of success with the dietary approaches such as the Ketogenic Diet or Modified Atkins. More info here: http://www.atkinsforseizures.com/

Best,
Nakamova

 

[KarenB]

The Ketogenic Diet can be helpful for many types of childhood seizures. It either cures or reduces seizures in roughly 50% of the kids who go on it (and these are usually kids who are considered to have "intractible epilepsy" -- having failed at least 3 meds). It usually isn't tried until a child has failed several meds, because it takes a lot of commitment; however, if you ask any parent of a "keto" kid -- they'll probably tell you they wish they had initiated earlier -- for many reasons -- not the least being all the developmental loss going on while trying to find the medicine that will work.

Our nutritionist says that many seizures can be reduced or even eliminated through changes to diet without going as extreme as the Ketogenic Diet. She recommends removing sugar and gluten from the diet, and seeing if that helps. Gluten is in wheat products. You have to be careful for "hidden" sugar in stuff like ketchup, BBQ sauce, and Chinese food.

If you try this, and find that it reduces seizures, but doesn't eliminate them, then your child might be a good candidate for the keto diet. For more info on that, you can go to the Charlie Foundation website.

Our son failed 5 meds (Keppra, Topomax, Lamictal, Trileptal and Depakote) prior to initiating the diet. The diet kept him seizure free for 11 months, and he was able to be weaned off all meds. Unfortunately, the seizures have returned recently, but it seems to be attributed to issues going on with thyroid and early puberty. His doctor thinks they should be able to be controlled with thyroid meds, and a very low dose of seizure med along with the diet.

 

[KarenB]

Also, you might hear that the Ketogenic diet is "unhealthy" for children. Well, it isn't exactly "healthy," but it is far healthier with fewer side effects than ANY seizure medication out there. The good news is that many kids are able to significantly reduce or even eliminate seizure meds when on the diet. Some kids are able to become seizure free and medication free, and eventually (after 2 or 3 years) wean from the diet. So...it isn't necessarily a lifetime of unhealthy eating.

The two biggest health issues with keto kids is high cholesterol levels and slowing down of growth. Johns Hopkins did a study a couple years ago, and found that even though cholesterol levels do go up, they return to normal when children go off the diet, and long range tracking of keto kids hasn't revealed long term health issues in adulthood.

In our personal experience, after one year of being on the keto diet, Jon's overall cholesterol levels was 165, his HDL was 47, and his LDL was 104. These are all within healthy limits. So...the diet did not cause cholesterol problems. However, this might be because many keto kids get most of their fats from dairy -- cream, butter, and cheese. In our case, about 70% of Jon's fats come from vegetable fats -- canola and olive oil, nuts, olives, and avocado. We also squeeze as many veggies in there as possible. So...it seems that it may not be the high fat that causes the high cholesterol, but perhaps the high amount of animal fat and lack of vegetables.

The other issue is growth -- many keto kids slow down in growth. We did not experience this in the first year that Jon was on the diet -- he gain height and weight as evenly as he did prior to initiating. However, in the past 6 months, we have been seeing a bit of a flatline -- but that may be due to hypothyrodism just diagnosed.

The classic ketogenic diet has a ratio of 4 grams of fat for every 1 gram of protein OR carbohydrate. The protein and carbs are supposed to be balanced. But a lot of parents tend to make meals that are higher in carbs and lower in protein, and I think that the lack of protein is probably contributing to the slowing in growth.