Glenda & keto weekend.

[Guest guest]

Glenda - Wow 21 seizure free months??? Just my .02 cents....... I'd beat

the fool out of this diet before looking elsewhere. Evidently, you had

the " right " combination during those months.....of course, figuring out

what that WAS is the hard part (I know, you are saying " tell me about

it! " ) And you are not crazy, every kid has " their " special place on the

ketones test strip. Some kids do better with lighter ketones and/or

lower ratios. does lots better around 3:1 than 4:1.

And I don't know what you all are talking about concerning a

" keto weekend " (I've had to do a lot of deleting lately), but if you are

getting together......I'd like to come! In fact, if lots of folks are

interested, maybe we could get the Epilepsy Foundation (and the local

affiliates in each of our areas) to help us. I bet we could get some

funding to help (Cyberonics would surely help -- we would just have to

endure one of their sales pitches!). Just a thought...... I work at our

local E.foundation, so let me know if you would like for me to check on

anything. Maybe then we could " poll the audience " to see how much

interest their is.

Kathy

On Thu, 11 Mar 2004 13:41:42 -0000 " Glenna Steele "

writes:

> Hi ,

> Thanks for your kind words as always....this will definitely be

>

> trial and error. We are hoping it will give Macie a big boost, but

>

> we'll see. We did discuss the acidity issues before, and I asked

> her

> about using Diamox. She said topomax and zonegran (I think that was

>

> the second one) do basically the same thing and are new versions. I

>

> tend to think Diamox may be a bit easier on the kiddos, but can't

> say

> that with any confidence! Anyway, Macie didn't do well at all on

> topomax, so I was prepared to push the Diamox issue more if needed.

>

> The first thing the neuro wanted to try was optimizing the diet,

> especially when we saw with the ketone machine that her ketones were

>

> not where they were supposed to be. She wanted to see where we were

>

> with high ketones.....we never really got there and stayed, though.

>

> We did have some good readings for a couple of days in a row, but

> they were basically up and down. Seems like she'd do well for a few

>

> days, then start regressing again. Macie eats pretty much the same

> 4

> or 5 meals right now, so I know at least that part was pretty

> consistent. Overall, though, she has been quite a bit better since

>

> the changes and the ketone meter, which is why I'll keep all of my

> stuff (scale included) very handy. I know there was still quite a

> bit of fine tuning that could have been done (we were at 3.5). We

> are probably completely wrong in our reasoning, but Macie did very

> best, seizure free for so long, at 3.2 with the ability to be very

> liberal. Now we've been so strict, she is on the lowest carb

> allotment she has ever had, and we still are seeing too much

> activity. We could have added a drug back with the diet still on

> board (and we may end up with that mix), but we still can't help but

>

> nk her quirky body needs a break. I think we needed to see what

> else is out there for her, especially her dad. I'm not satisfied

> with the control she has now either, and I just hope and pray this

> isn't as good as it is going to get. He keeps saying that we've

> been

> tinkering now for 7 months, and he thinks it is time to try

> something

> else for a while. As I've mentioned, I have her at home for

> schooling now, and we though the time was right to do some

> experimenting. Also, we now have a very good epilepsy center behind

>

> us to give us guidance and support.

> We are not being the model keto parents here, so I don't want to

>

> discourage or influence anyone else who might be reading this. For

>

> those who don't know, Macie was seizure free immediately on the diet

>

> and stayed that way for 21 months (med free for 18 months). She

> isn't the typical situation (although there are others here

> similar).

> We'll be weaning the diet over the next few weeks as her lamictal

> level rises, so maybe we'll see a happy ground in the middle along

> the way. We are just hoping the bottom doesn't fall out....if so,

> I'll just grab for the scale again!

> Thanks again for all of your kindness,

>

>

> Glenna

>

>

> -- In ketogenic , " & Hill "

> <rich.sue.hill@x> wrote:

> > Well good luck with it all Glenna, onwards...

> > Yeah, lamictal has been a baddie for a lot of kiddies, but - it

>

> has been a

> > goodie for some too, so as we all know - won't know till you

> try...If

> > someone had told me 5 mths ago that would be on topomax

> right now, I

> > probably would have gone into cardiac arrest at the thought -

> well,

> here he

> > is on it, he is doing fine, and I escaped the cardiac ward

> > Whatever works, I hope it turns out to be her answer, and if

> not,

> that

> > having a break from the diet will set her back on the right

> track.

> > Did you ever go down the acidity/alkalinity route with testing

> at

> this new

> > keto centre btw? Like any suggestion of maybe adding an acidifying

>

> agent in

> > case it is that aspect that she needs some 'help' with (much like

> I

> suspect

> > the topomax is playing a part with right now) ?

> >

> >

> >

> > ----- Original Message -----

> >

>

>

>

>