Ketogenic diet/lactose intolerance

[mimisbigsis]

My younger sister is 41 years old, but is profoundly mentally retarded and functions at about a 13-14 month old level.

She had her first grand mal seizure about 8 years ago, and broke her femur. Another seizure caused her to break a hip, for which she required surgery. The etiology of the seizures is unclear, but she’s had countless head injuries from autistic behaviors. She also has now had three bowel obstructions; one surgically corrected, the others resolved without surgery, all occurred in the last seven months. We are looking into further PT/OT to increase her mobility/ambulation.

A few days ago, she had a 3.5 minute seizure. This is the 8th breakthrough seizure she has had since the beginning of the year. Her Tegretol level was therapeutic.

I know about ketogenic diets as possible relief for at least the frequency of seizures, however my sister is lactose intolerant, and I understand that the ketogenic diet is heavy on dairy products. She is also obviously prone now to bowel dysfunction to the point of obstruction, and already requires Colace on a daily basis.

With her already-limited communication skills (she is nonverbal), I think it would be preferable to try something like the ketogenic diet versus adding yet another medication that might be further sedating, thus robbing her of motivation to communicate at all.

I would like to introduce the idea of the ketogenic diet to our Mom and my sister's caregivers and nursing staff, but would first like some input from health professionals and/or families who have had to deal with lactose intolerance and the ketogenic diet, and also perhaps some bowel obstruction problems and how that might be averted on a ketogenic diet, as well. She is only about 4 feet 10 inches tall and weighs somewhere around 90 pounds, so I also wonder about pediatric regimen versus adult regimen of the diet. Obviously, we will eventually have a health professional to make that decision, but I would like a little knowledge beforehand.

Her med list consists of (in no particular order): Tegretol 400 mg b.i.d., K-phos t.i.d., medroxyprogesterone q. three months, Zoloft 100 mg q.a.m., a multivitamin daily, Colace 100 mg a day, oyster-shell calcium 500 mg b.i.d., omeprazole 40 mg daily, vitamin C (?buffered or rose hips) 500 mg daily, Ensure one can b.i.d., fexofenadine 180 mg daily, fluticasone 50 mcg b.i.d. prn, Fortical daily, Tylenol 500 mg daily prn. She is also on a lactose-free diet.

I don't think preparing a ketogenic diet would be a real hardship on her caregivers, as she is the only one of five residents in her home that isn't tube fed, and although she likes sweets, she really just kind of shovels food in and swallows it, so I think as long as her tummy is full, she'll be okay with the 'sweet deprivations' of the ketogenic diet.

So my questions are these:
1. Can a ketogenic diet modified for lactose intolerance still be effective?
2. Would further stool softeners/laxatives to help prevent bowel obstruction have a negative effect regarding achieving a state of ketosis?
3. Could such a diet cause apathy or dull the senses (further)?
4. Would the additional problem of autism preclude the use of this type of diet? (I guess I’m thinking along the lines of carbohydrates having a soothing effect for many of us, and if carbs are suddenly drastically reduced, can that escalate autistic behaviors?)

Thank you in advance for any insight that you might be able to provide that could potentially add to my little sister's quality of life.

Sincerely,
Mimi's big sis

[clinicalguru3]

Well a ketogenic diet could certainly help in this situation...another non-medical option is a vagal nerve stimulator.

In terms of lactose intolerance, this should not affect the possibility of doing this, however it should be done through an epilepsy specialist and a dietician connected to an epilepsy center with experience in ketogenic diets and should not be attempted without this kind of guidance.

Let us know how it goes!