Re: joshua

[Guest guest]

Hi ,

We are reducing the klonapin by 1/4 tablet every Thursday till it is gone. This

Thursday we take the morning dose away completely. Then next week we take away

the evening dose away completely. We go tomorrow to University of Michigan for

a doctor visit. I will be bringing up what you said about the wean problem. I

have cut out all of the free foods and have actually been really strict about

all of his fats with his meals. He is at a 4:1 ratio with no dairy or starch.

This is a very hard diet to do with two other boys that are constantly eating.

Also I have noticed that his breath does not have that fruity smell like it did

before. That is kinda strange..that was one way to tell that he was in ketosis.

I am really having a hard time with all of this. We were doing so well for

about a week and then we are back to the beginning again. Now that school is

going to be out for the summer, now I have to deal with the other two kids. I

hope summer will be kind and be very nice.

in Michigan - mom of 3 1/2

Re: joshua

Hi ,

With a definite reason like ketones that low (1+ would rarely be enough for

seizure control) on the diet, you guys are still doing good (!) It is

obviously not pleasant to see a seizure when has not had any for a

while, but the fact that you have a reason for the breakthrough seizures,

and that it is something 'fixable', means he will still probably be ok, when

you get his ketones back up a bit higher.

In the beginning stages of the diet, free foods are very risky, you need a

longer period than 2 weeks to accurately assess his calorie needs. The

hunger is common in the first few weeks, this usually does fade away, as

their tummie's get used to the smaller food portions. If it doesn't, and his

weight reflects a calorie shortage as well, then maybe the dietician will

have to relook at his plan, but for now, if he was seizure free on the

existing cal level, I would do anything and everything to stick to what has

been set by your keto-team.

Yes, it is one of the hardest things, depriving your child of food when he

says he is hungry, but not as hard as watching previously uncontrolled

seizures, try and remember that every time he cries for food, it will help

you through this tricky first few weeks.

Distraction was our ploy with in the early stages, with little

'non-food' treats, outings etc. He was 4 and a half, so a little bit older

than , but not quite old enough then to truly understand why he

couldn't eat what he wanted when he wanted.

Hill

> Hi everyone,

>

> We were doing very good on the diet, until yesterday. He had a

> grand mal and he also had one today. Both of them in the morning.

> I checked his keo levels and they were low, only 1+. He is usually

> at around 4+. I talked to the dietician and she said it is probably

> the free foods that I am giving him in between his regular snacks

> and meals. She wants me to cut them out and just stick to the

> original diet. Has anyone else had this problem in the beginning.

> We have only been on this for two weeks today. My hardest thing is

> that he comes to me about 15 - 20 minutes after he has eaten either

> a meal or a snack and says that he is hungry. I can't give him

> anything. That is the hardest thing I have ever done!!! He then

> cries and yells at me which I know he is only 3 1/2 and that is the

> perfect age for that emotion. I just need to know that someone else

> has gone through this....Thanks for listening.

>

> cindy, mom to josh 3 1/2 on diet for 2 weeks

[Guest guest]

Hi - do you plan to stick to the reduction on Thurs even if he is

still having a lot of seizures? Or have they eased off a bit now? Your

schedule does sound a bit fast, esp for klonipin, but the benzos scare the

h*** out of me, so maybe I am just super cautious with them after our long

grotty experience with them.

Once down to low low levels, I actually read that it was better to split the

reduction over both doses, as otherwise a 24 hr period till the next dose

(ie - if he is on evening dose only after Thurs) can play havoc with the med

blood level - may give you more problems than even the dose reduction

itself. Just a thought.

You are using urine ketone sticks to check his ketone level I presume? What

sort of levels are you seeing?

> Hi ,

>

> We are reducing the klonapin by 1/4 tablet every Thursday till it is gone.

This Thursday we take the morning dose away completely. Then next week we

take away the evening dose away completely. We go tomorrow to University of

Michigan for a doctor visit. I will be bringing up what you said about the

wean problem. I have cut out all of the free foods and have actually been

really strict about all of his fats with his meals. He is at a 4:1 ratio

with no dairy or starch. This is a very hard diet to do with two other boys

that are constantly eating. Also I have noticed that his breath does not

have that fruity smell like it did before. That is kinda strange..that was

one way to tell that he was in ketosis. I am really having a hard time with

all of this. We were doing so well for about a week and then we are back to

the beginning again. Now that school is going to be out for the summer, now

I have to deal with the other two kids. I hope summer will be kind and be

very nice.