- keto diet / surgery

[Guest guest]

Hi

I hope you dont mind, but I just wanted to try and explain some things about the

ketogenic diet.

Seizure control with the diet is not guaranteed, as I am sure you are aware.

Many people gain full control, many more gain only partial control, and many

find it does not help at all for a variety of reasons. Personally, I think that

meds, in many cases (ours for example), dont give any better control than the

diet. I notice that is on three drugs, which I assume are not giving the

control you would like for her, so I could say - what have you got to lose, from

a seizure control point of view? The diet gives a lot of flexibilty for fine

tuning meds, doses, calories, fat/protein/carbohydrate intakes, supplements,

ketone levels ........ the list goes on. All these things, and more, can affect

seizures, so to have some control over them is an advantage.

Let me comment on the things you mentioned.

1. Drug toxicity - Some drugs are metabolised differently when the diet is used,

and they can be stored in the body tissues in higher amounts, thus causing

toxicity. A particular dose might be okay without the diet but, when on the

diet, that same dose may cause toxic levels of the drug in the body. This will

not necessarily be dangerous in the short term, but is obviously something to be

addressed as soon as possible. The good thing about the diet in this situation

is that the drug dose can be lowered, the toxicity overcome, and the side

effects of the drug itself reduced. Its as if the diet allows less of the drug

to acheive the same effect, and that has to be a plus. In many cases, the drug

doses can be reduced dramatically, and maybe even weaned entirely. Our Hannah

was able to come off 200mg of Lamictal per day because of the control given to

her by the keto diet, and as a result she became more alert and responsive.

2. Ketones too high/ too low - Ketosis is not a natural state for the body under

normal circumstances, so, to be safe, that is why the diet must be done under

strict dietary and medical supervision. Having too high a ketone level is not an

immediate risk, as long as it is monitored carefully. There are side effects of

high ketones which are quite obvious, and which alert us that we need to alter

something about the diet. Changes are easily made to adjust ketone levels, and

results are usually seen within a day or two. Parents are very alert to the

subtle changes in their children and usually pick up small changes and act on

them quickly. Depending on what else is happening in the childs body (other

meds, dose changes, different foods, illness, etc...) the ketone levels may

fluctuate, but once you've done the diet long enough you get a feel for what is

a suitable level of ketosis for your child, and you can make adjustments early.

The bottom line is how well seizures are controlled. Most kids get their best

control when ketones are high, some only when they are moderate, and some only

when low. Too high or too low, just means that it is so for your individual

child. It is not a danger and is easily remedied.

3. Pancreatitis - the ketogenic diet has not been found to have caused this in

Hannah. In fact, there is only one documented case of the diet actually CAUSING

pancreatitis. We are taking Hannah off the diet as a precaution only, due to the

possible, but not certain, risk of the pancreatitis worsening. After all, a high

fat diet, no matter how safe or for what reason it is used, is only going to

aggravate an already inflamed pancreas. When all is settled, I fully intend to

explore the option of putting Hannah back on the diet.

I hope my meagre explanations are helpful . I'd hate anyone to miss out on

the potential that the keto diet has to offer those for whom meds are

ineffective in gaining seizure control.

Best wishes to you and

(Hannah's mum, unhappily weaning the keto diet)