Re: just had neuro appt...Patti

[Guest guest]

Hi Patti,

I have some more info for you...

I have bought stevia and I am going to try to eliminate pop

first. Thank you for the substitute ideas.

Ally is on 3.75:1 and 1000 calories. She is 36 lbs. She

eats chicken, turkey, fruit, veggies, butter and cream, and

occassionally tuna and mayo. I once tried flax oil, but she

seemed worse. Before her breakthrough episodes a few weeks

ago, I started walnut oil and I think she was okay, so I

want to add that back in. She doesn't eat processed foods

or other flavorings, etc.

Do you think dropping the pop can help her acidity? Is the

only other way to lower acidity to decrease the ratio?

Thank you so much for your 2 cents!

, mom to Ally, 4 1/2

--- Patti wrote:

> ,

>

> Adding my 2 cents..... I think there's some things you

> can do to tweak this diet before consenting to add more

> medications. The first thing would be to dump the

> Nutrasweet. Alternatives she

> might find just as satisfying might be plain Koolaid

> powder (lemon-lime and black cherry are the two truly

> Keto friendly flavors, although I've used the plain

> lemonade Koolaid for Katera for the past year with no

> problems), sweetened with Stevia.... which is a totally

> natural, carb-free, calorie-free, Keto-friendly sweetener

> that is available in natural foods stores. If she really

> wants the bubbles..... maybe you could add some plain

> club soda (which also helps with acidity for lots of the

> kids).

>

> I didn't see what ratio she was on.... so don't know what

> to say about that. Are there any other processed foods,

> additives, colorings, etc, that you might be able to

> eliminate.... just to see? Are you using any oils, or

> just cream and butter?

>

> I know you mentioned maybe wanting to wean the

> phenobarb.... but just thought I'd point out that

> there've been a few kids here that have had some dandy

> withdrawal seizures right at the end of weaning that

> one..... probably not uncommon to see that with other

> meds, too but I just remember that. We weaned Phenobarb

> way before the diet and didn't have any troubles but we

> sure did with Tegretol.

>

> I'm sorry to hear you didn't have a better EEG report. I

> really have to agree with some of the others on saying

> that you might just not get really good seizure control

> until the meds are gone. It sounds like your neuro is not

> too open to that approach but wouldn't it be great to be

> able to see what she was like on JUST the diet? Wish

> there was a way to do that without going through the

> dreadful weans.... I don't know.... the idea of adding

> another med to what she's already on just seems wrong

> somehow to me.

>

> Just for the sake of another example of how EEGs don't

> paint the whole picture, Katera had one right before

> starting the diet that was clear..... no

> abnormalities.... but she was having several 3 or 4

> minute long generalized tonic-clonics every day. Go

> figure. The only explanation I have for that is that she

> had been off all meds for about 8 months at that point

> (we just kept Diastat on hand in case they went

> longer)..... and all of her past EEGs were way abnormal

> but she was either actively seizing or was on a lot of

> meds at the time.

>

> good luck with sorting it all out.....

> Patti, mom to Katera, age 5

> just had neuro appt...

>

>

> Hi Everyone,

> Ally (4 1/2) just had her ped neuro appt w/EEG

> yesterday,

> and I am saddened. On the diet, she has less seizures

> (usually only while asleep now), but her EEG showed a

> large

> amount of epileptiform activity. Her neuro is concerned

> that this puts her at risk for future status, problems,

> etc.(she has spent 2 weeks in hospital in nonconvulsive

> status). Two weeks ago, she had breakthrough seizures,

> but

> this was probably due to an infection or antibiotics.

> He wants to add Keppra to the mix. She is already on

> Topamax (275mg) and phenobarb (60mg). I just don't know

> what to do. I was hoping to DECREASE meds, not add a

> new

> one. Ally has very large mood swings, and the neuro

> thinks

> this may be all of the abnormal brainwave activity. I

> thought it was either acidosis, too high ketosis, or

> generally not feeling well.

> He offered other options, such as dextromothorphan (a

> shot

> in the dark, basically) or testing for creatine

> deficiency.

> Here's my thoughts...

> 1.She drinks diet pop, so I thought to stop that (altho

> she'll be VERY unhappy)

> 2. start EEG biofeedback, wait to add Keppra and see if

> this helps

> 3. reduce ratio in case she is too ketotic (I'm having

> trouble deciding); her blood ketones were " moderate "

> 4. make no changes and wait to see if increased EEG

> activity is " leftover " from breakthrough seizures, it

> took

> her 8 days to stop twitching (I don't know if this is a

> possibility, but I am hopeful)

> Help! What are your thoughts???

> Thank you for being here

> , mom to Ally and Lexi

>

> __________________________________________________

>