Re: Variations--long/sorry

September 12, 2005

I am not sure if I can answer all of your questions, but I will share some

of our experiences and success with SCD.

After trying rotation, Feingold, and GF/CF (and soy free) diets without

SUSTAINED success and increasing regressions, we stumbled on SCD while

frantically doing searches for diet-related seizures. Although it seemed

daunting to try (potato products, crackers, and mayonaise were all Dakota

would eat without bribery/rewards), I was stunned to see the progress so

quickly. Within the first few days, it was amazing, and then we had the

very common bouts of regression and/or stalls along the way while Dakota's

system adjusted and worked out getting the toxins out of his system. I find

the diet so much easier now--way less baking and a whole lot more of what we

call " real " foods now that Dakota eats them (fruits and veggies). Now that

Dakota is eating a huge range of foods now--there are no fruits and

vegetables that he will not eat nor has trouble tolerating, I no longer

worry about him getting the right amount of anything---food is our medicine

and we do very little supplementation. His carb intake is consistently

around 28% of his diet, and he has more energy than ever before. After

going through _years_ of trying to figure out why Dakota was degenerating so

quickly, our team of physicians (12+ due to two genetic disorders [NF and

Beckwith-Wideman Syndrome], autism/child disintegrative disorder, and

seizure disorder) could not believe this past May how healthy Dakota looked,

and they are now in complete support of the diet. He is by far the

healthiest looking kid in his class despite all the things he has to deal

with. Tumors have greatly reduced in size (and I attribute this primarily

to organic foods without growth hormones), and his seizures are amazingly

under control (several absent a day and a few complex partial a week rather

than hundreds of episodes a week).

We continue to use Depakote for seizure control which contains mild traces

of illegals. For us, the benefits outweighed the risk of the illegals.

However, slight traces of hidden things (corn especially) early on sent

Dakota into fits of rage that would scare the blazes out of the

faint-at-heart. I feel it is a personal decision, but by far it is better

to stay away from known illegals to know for sure that healing is occurring.

However, other than his Depakote, we avoid illegals.

Coincidentally, my youngest son (neurotypical) and I had a night out alone,

and he wanted to go to eat at a wonderful whole foods stir fry. All fresh

veggies and meats, no additives, all cooked right before you from items you

select. Normally we stay away from rice (we do the diet as a family).

However, Josh really wanted rice. Although we both only ate about a third

of cup, we were both sick as dogs the next morning (never happened there

before when we abstained from rice). The sweet thing was that gave

Dakota a big hug and was in tears saying, " Now I know how you felt for so

long and we MUST stay on the diet! " is now battling a yeast problem,

and I know it is from the rice. Sigh.....live and learn.

As far as casein, we do goat and sheep yogurt. We did try nut yogurt for

awhile, and I know that many people who worry about casein will use nut

yogurt instead. Dakota tolerated the nut yogurt very well, but others in

the family did not due to allergies to nuts. I have slipped in trace

amounts parmesan cheese, and this has been tolerated, but I do it very

infrequently. Staying casein free is not hard on SCD.

As far as sweeteners, we do honey, coconut milk (home made) and fruit juice

as sweeteners. We added honey in very slowly to avoid yeast issues. We

never did stevia (I hated the taste from years before), and I find the taste

of juice, coconut, and honey so much yummier. Coconut oil is a natural

antibacterial, as well. So, there are other foods out there that are legal

that will accomplish similar results.

Good luck, and it does get easier and more comfortable as time goes on. In

time, it truly becomes a way of life.

whole family SCD 2 years

Mom to Dakota (8--NF, BWS, CDD, and seizures)

and (5--happy, healthy, supportive little brother)

September 12, 2005