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 only about 8 years ago, and broke her femur. Another seizure caused her to break a hip, for which she required surgery. I would assume that her autistic self-injurious behaviors (aimed mostly at her poor little head) have culminated in her seizure activity, but that's just my guess, and the etiology of the seizures proably doesn't matter much in the long-run. Although she has been ambulatory for many years, her freedom for mobility has been severely curtailed due to the protocols put in place by her caregiving agency for safety concerns, i.e., when walking, she must have two caregivers in attendence and wear a belt that can be used to help break a fall. Understandably, her caregivers have plenty of other issues that need to be dealt with for her and all other residents of the home, and they don't always have time to help her stay ambulatory for any length of continuous time. We are looking into the possibility of having PT/OT professionals coming into the home to walk her for 30 to 45 minutes at a time several times a week. We are not only worried about her losing one of her very few skills, but she has now had three bowel obstructions; one surgically corrected, the others resolved without surgery, all occurred in the last seven months.
Yesterday, she had a 3.5 minute seizure. This is the 8th breakthrough seizure she has had since the beginning of the year. Today, she showed signs of bowel obstruction (copious emesis x4 in a two-hour period) and so we spent the better part of the day in a local emergency room. Luckily, there was no bowel obstruction today, but she did have a UTI that was initially treated with Levaquin to which she developed hives locally in the arm where the IV was, so that was DC'd and she was sent home on oral Macrodantin, which she has tolerated well in the past (she does have a long, distinguished list of meds to which she is allergic, lucky girl). We also learned that her Tegretol level was therapeutic, and her other lab values were wonderful, with the exception of a slightly-low potassium (from repeated vomiting?) and a slightly elevated glucose at 129 (no guesses here).
I know about ketogenic diets as possible relief for at least the frequency of seizures. However, my sister is lactose intolerant, so that might require some adjustments, as the ketogenic diet is heavy on dairy (as in relatively massive amounts of heavy whipped cream, etc.). She is also obviously prone now to bowel dysfunction to the point of obstruction, and requires Colace in any event to avoid the constipating effects of some of her meds and her more-sedentary lifestyle.
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 push the idea of the ketogenic diet with my Mom and my sister's caregivers and their superiors, but would first like some input from families and/or medical professionals 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, as well. She is only about 4 feet 8 inches tall and weighs somewhere around 89 pounds, so I also don't know if she should be on a pediatric regimen or an adult regimen. Obviously, we will have to have a registered dietitian make that decision, but I would like some input from people who have "been there, done that, got a T-shirt." Also, I have included below her med list, in the hopes that someone may see a red flag that hasn't been noted previously.
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 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 'deprivations' of the ketogenic diet.
Thank you in advance for any insight that any of you might be able to provide that could potentially add to my little sister's quality of life.
Mimi's big sis