Weaning - LONG

[Guest guest]

Here is the complete text of the message I saved some years ago from the

Keto Klub newsletter. My apolopies for the plagarism. I don't know the

original source of the information. I wish that Jim Abrams and others

who have weaned successfully will put more information in the next

edition of the diet book.

After about 2 years of complete or partial success on the diet, we wean

as follows: AT LEAST 3 mos. on 3:1 ratio (assuming child was on 4:1), AT

LEAST 3 mos. on 2:1 ratio. 3.5:1 and 2.5:1 ratios can be used if the

child is sensitive to change. Usually at some time between the 3:1 and

2:1 ratios, we try adding a small daily snack, usually around 100

calories, for about 3 months. We can then see if the child will be able

to tolerate an increase in calories BEFORE complete weaning. Then, while

still on the 2:1 ratio, we start " cheating " as follows: we have the

child (age permitting) chew sugarless gum, and switch back to his

regular toothpaste. After a couple weeks, we start weaning milk into the

meal, such as, if the child gets 60 gm. cream, we give 50 gm. cream, 10

gm. milk, for 3 or 4 days, then increase milk to 20 gm., decrease cream

to 40 gm., etc. After a couple weeks of this, we tell them to add 1/4

piece of toast to breakfast, increasing to 1/2 piece after about a week.

At the same time, they can increase the protein in one meal/day, usually

supper, by about 50%. Assuming the child continues to do well with all

this, we continue to increase the cheating by, for example, telling the

parents to stop weighing the meat, allow the child as much as he wants,

and to increase the carbo (veg or fruit) portion. By this time, the

child is off all cream (which is a lot of the fat in the meal) and the

ketones are usually trace to zero. We get them to the point where no

meals are being weighed, the child is eating pretty much as much as he

wants (except watch for the weight gain. About 5 lbs is a " normal "

weight gain but then it should stabilize and be watched - too much too

fast is not good.) For a couple months then, we keep to " keto " foods but

the child is eating the quantity he wants, and can even have snacks

between meals if desired (sugar-free popsicles are low in carbos). If

all is well, the parents then SLOWLY introduce higher carbo foods

(gravy, potatoes, small pieces of cake, ice cream, etc.) We make the

transition time very long. Slow always seems to work better.

During weaning (as well as any time during the diet), if a child has

problems maintaining ketosis in the morning, a higher ratio supper can

help. For example, if the child is on a 3:1 ratio and doing well, but

suffering seizures in the early morning, the child can be given

breakfast and lunch at 3:1, keeping the dinner at the 4:1 ratio. If the

child is on a 2:1 ratio, perhaps the dinner should at 3:1. Any

combination of ratios can be used, as long as the calories are

maintained. Or if the child has a snack calculated into the allotted

calories/day, perhaps the snack can be at a higher ratio.

Some people think it's okay to look for low carbo foods and add fat to

the meal. Once you're in the last stages of weaning, this is counter

productive. Because the child is in trace or negative ketones by this

time, adding fat will only cause the body to store the fat while it

burns the sugar for energy, thereby causing weight gain. Once the state

of ketosis is broken, normal good eating habits should begin.

If at any time the child's seizures reappear (or increase), we stop

where we are and wait about a month. Sometimes the seizures will again

stop or decrease and then the weaning can continue. If the seizures do

not stop or continue to increase, we go back where we were right before

the seizures started and stay there about 3 months before trying again.

TESTING DURING WEANING

Unless the child is on anti-epileptic medication, no blood tests are

necessary during the weaning process. If the doctor or parents are

concerned about cholesterol, however, a blood test can be taken a couple

months after being completely off the diet to confirm that the levels

have returned to a more normal or acceptable range.

If the child is on AEDs, blood tests may be necessary, as always the

case with AEDs, to watch the drug levels which may be affected during

weaning. Adjustments in medication are not made unless the child is

suffering increased seizures which have not subsided during the waiting

period or if the drug reaches toxic levels or the child is showing

symptoms of toxicity.

Neurologists differ in their protocol for EEGs. Here, we prefer the

following schedule for EEGs during/after weaning from the diet:

1. before weaning begins

2. at the end of complete weaning (no ketosis)

3. 3 months after complete weaning

4. 9 months after complete weaning

5. 21 months after complete weaning

Fluid allotment does not change with ratio changes. However, fluid

allotment does change when calorie adjustments are made.

Ketone levels in the urine continue to be measured daily (in the

evening) by the parents until ketones are negative and the child is no

longer eating ketogenic meals.

In summary, the weaning process off the Ketogenic Diet is slow and

methodical, much like weaning off any AED. Good record-keeping by the

parents is encouraged. It appears that most children retain whatever

level of seizure control gained on the diet after being off it.

Remember, each person is an individual and decisions must be made on an

individual basis.

Also, this diet is mostly " art " versus " science " and good common sense

is necessary.