Re: Keto Diet Question

[Guest guest]

Hi, there!

If Caden's ketones are high, are they always high... all day? Does the strip

turn dark IMMEDIATELY after dipping it in urine? If so, his ketones are

probably too high and you will need to reduce the ratio down.

Meds can make the diet even stronger, as they interact with the ketosis.

Another question: Are you weaning one of the AEDs? That could cause seizures.

And yes, some children do not tolerate aspartame. Others do not tolerate the

other sweeteners. For my daughter, I mostly use stevia. It is a natural

sweetener, expensive but it goes a long long way, and she tolerates it.

Be sure your son is getting his allotted fluids.

Another cause could be constipation...?

My first concern would be that his ketones are too high. Does the strip

indicator turn dark immediately? If so, they are too high.

Others will have lots to add, but these are a few things to consider. .

vihairaffair2000 vihairaffair2000@...> wrote:

Hi my son Caden , has been on the diet about three weeks now, i

know were still early in the diet , but just wandering if anybody

else has seen this patteren with there child, Cade seizures have

gratly reduced even had a few seizure free days and then all of a

suden , bamm he will have 50 or 60 the next day and he is keeping

high keotones.He is on a 4:01 ratio, is this comen, does the

seizure control get better over time with the diet, i guess it

depends on the child, has anybody started off this way , and the

seizures have gotten better over time, and what about aspertame has

anybody have this affect ther child seizures, make them worse i was

just wandeing if this may be the problem, its so hard to tell with

this diet. Cade is on Depakote, clozepan, he is 5 years old with

L.G.S, Myoclonic, Partial-Tonic since 3 years old Thanks Caden,s

mom Viola.

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[Guest guest]

you sound just like me, we have been on the diet about 3 weeks, and

the first intial response was awesome almost 90% control then around

week 2 they started creeping back, I asked the dietician, and yes

constipation can be a key, we are on g-tube keto but he has

mycolonic,absence, tc's since 4mos ALL meds have failed or made him

worse. We are on phenobarb, keppra and zarontin. I was told that the

intial response is what can be achieved.With the fine tuning of the

diet. We are on a 3.7 to 1 ratio and seems to be helping we started

on a 3.5 to 1. I asked my dietician if lower ratios help and she

said if the babies or kids are chubby yes usually a lower ratio is

better b/c of the fat they already have. The AED's can make him

toxic for some reason the diet increases levels. And ofcourse to

ketonic, do you have a glucometer? I would think if he was to

ketonic he would have low sugar. Just a thought. You can email me,

since it seems like we started around the same time and have the

same issure. But rest assured the control you see can be achieved

again.

>

> Hi my son Caden , has been on the diet about three weeks now, i

> know were still early in the diet , but just wandering if anybody

> else has seen this patteren with there child, Cade seizures have

> gratly reduced even had a few seizure free days and then all of

a

> suden , bamm he will have 50 or 60 the next day and he is keeping

> high keotones.He is on a 4:01 ratio, is this comen, does the

> seizure control get better over time with the diet, i guess it

> depends on the child, has anybody started off this way , and the

> seizures have gotten better over time, and what about aspertame

has

> anybody have this affect ther child seizures, make them worse i

was

> just wandeing if this may be the problem, its so hard to tell with

> this diet. Cade is on Depakote, clozepan, he is 5 years old with

> L.G.S, Myoclonic, Partial-Tonic since 3 years old Thanks Caden,s

> mom Viola.

[Guest guest]

Early seizure control is a really good sign on the diet. My son had

early control, then the seizures came back. I don't remember for

sure, but they may have returned when we started the medicine wean

after just a few weeks on the diet. He continued to have seizures

as we weaned the meds. Three months into the diet he was off all

meds, and one month later he became seizure free. Perhaps most of

his seizures on the diet were withdrawal from medicine seizures. He

remains seizure free, today, 7 months after starting keto. So, hang

on to that hope. Do not give up. Many nueros say " the diet works

best without meds. "

>

> Hi my son Caden , has been on the diet about three weeks now, i

> know were still early in the diet , but just wandering if anybody

> else has seen this patteren with there child, Cade seizures have

> gratly reduced even had a few seizure free days and then all of

a

> suden , bamm he will have 50 or 60 the next day and he is keeping

> high keotones.He is on a 4:01 ratio, is this comen, does the

> seizure control get better over time with the diet, i guess it

> depends on the child, has anybody started off this way , and the

> seizures have gotten better over time, and what about aspertame

has

> anybody have this affect ther child seizures, make them worse i

was

> just wandeing if this may be the problem, its so hard to tell with

> this diet. Cade is on Depakote, clozepan, he is 5 years old with

> L.G.S, Myoclonic, Partial-Tonic since 3 years old Thanks Caden,s

> mom Viola.

[Guest guest]

If he is tolerating the diet, which seems to be the case, you can start

to slowly wean the medications. That may improve the situation.

Especially depakote is not recommended with the diet.

Then there are several things that you can do with fine-tuning. If you

had good control at the beginning, you have a very good chance of

getting back there. It will take some time and a lot of patience.

Bill

vihairaffair2000 wrote:

>

> Hi my son Caden , has been on the diet about three weeks now, i

> know were still early in the diet , but just wandering if anybody

> else has seen this patteren with there child, Cade seizures have

> gratly reduced even had a few seizure free days and then all of a

> suden , bamm he will have 50 or 60 the next day and he is keeping

> high keotones.He is on a 4:01 ratio, is this comen, does the

> seizure control get better over time with the diet, i guess it

> depends on the child, has anybody started off this way , and the

> seizures have gotten better over time, and what about aspertame has

> anybody have this affect ther child seizures, make them worse i was

> just wandeing if this may be the problem, its so hard to tell with

> this diet. Cade is on Depakote, clozepan, he is 5 years old with

> L.G.S, Myoclonic, Partial-Tonic since 3 years old Thanks Caden,s

> mom Viola.

>

>

>

>

>

>

[Guest guest]

Viola,

Have you seen the same seizure pattern since you started the diet or

were things much better at first and now have become worse? If

seizures were more controlled at first and then increased recently, I

would definitely suspect the meds. Caden is on. I might suspect them

anyway, though. Neither Depakote nor benzodiazepenes are usually

compatible with the diet. Depakote levels can actually rise to toxic

levels with the diet, so if you haven't done so, you might want to

check that. Benzodiazepenes (clonazepam, clobazam and others) can

also interfere with the workings of the diet.

If you had good control at first, it is likely that you can get it

back again. You have to be a detective. Aspartame is used

successfully by many kids but for some, it IS a problem. The only

way to know is to stop using it for a week or two and see things get

better. Make any changes slowly and allow about 2 wks. before making

another one. Keep a journal of everything you do, everything he

eats, what kinds of lotions, toothpaste, etc. you are using (looking

for hidden carbs, here).

Are you checking urine or blood ketone levels? How often? Are they

strong?

Cammie

>

> Hi my son Caden , has been on the diet about three weeks now, i

> know were still early in the diet , but just wandering if anybody

> else has seen this patteren with there child, Cade seizures have

> gratly reduced even had a few seizure free days and then all of a

> suden , bamm he will have 50 or 60 the next day and he is keeping

> high keotones.He is on a 4:01 ratio, is this comen, does the

> seizure control get better over time with the diet, i guess it

> depends on the child, has anybody started off this way , and the

> seizures have gotten better over time, and what about aspertame has

> anybody have this affect ther child seizures, make them worse i was

> just wandeing if this may be the problem, its so hard to tell with

> this diet. Cade is on Depakote, clozepan, he is 5 years old with

> L.G.S, Myoclonic, Partial-Tonic since 3 years old Thanks Caden,s

> mom Viola.