Re: Macie update/

[Guest guest]

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

think 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 -----

>