Re: Re: hydro.......

[Guest guest]

Laverna

Sorry for taking so long to respond, I have good intentions but

sometimes.....

> ...of course the Dr.'s comment was " well seizures is not a

> side effect, never heard of anyone having seizures from it...... " so

> we

> aren't so stupid after all.

I don't believe it directly causes seizures, at least thats now it

worked for Jess, but it counters the acidity of the diet, making the

blood more alkaline. And if you need acidity for seizure

control.........not a good plan!

> Thank goodness we quit giving it to her......so

> chances are even if she is off the diet she'll seizure from it?

Well my geuss would be if you are off the diet you will lose acidity and

lose seizure control, so using the diuretic then won't make any

difference (seizure wize) cuz I expect she will be seizing anyway,

unless of course you find a med that works. We went through six meds

pre-diet, and none of them worked, the only med that has helped at all

is diamox but it mimics the diet and causes acidity. Are you following

me?

> I was

> hoping if we were back on meds maybe we could give it to her. Have you

> ever

> explored giving Jess a natural diuretic? How do we know it is

> working???

Hydrochlorothiazide (yeah, the name got seared into my head after two

weeks of seizures, lots of agony, arguments with the nephrologist and

lots of my own research to prove him wrong) is I believe the only

" calcium sparing " diuretic, meaning the other diuretics would make you

pee out more calcium. So you wouldn't be accomplishing anything for the

calcium/bone issue with another diuretic, natural or not.

> Anyway we have begun increasing her meds and taking her off. I have NO

>

> confidence in anyone in the professional field right now and with

> Rebekah

> having had so many fractures this past year we have to do something.

> I

> guess if things get really bad seizure wise we know that 4:1 ratio

> works for

> her and we can go back on. But I'm wasted from this experience

> especially

> since there isn't the support needed to make this diet safe for her.

> I'd

> like to get her back onto a regular diet with high calcium foods and

> see if

> we can't get these bones fixed. We have her name in at the

> Shriners.....if

> they come through we will fly her to whereever and see some real

> professionals!!!!!(Do I sound bitter?) In the end it will take a

> miracle!

> As always! We have a bone density test scheduled for Dec. 16(first

> one

> since her break in March!!!!)

I know, it really sucks. I feel like we are caught btn a rock and a hard

place, one of my biggest fears being that we will someday end up where

you are. Actually right now our neuro is away on sabbatical and

dietican is on leave of abscence. There are subs in for both of course,

but I spent our last appointment with stand in neuro arguing with her -

the only she wanted to talk about was why Jess should come off the diet.

And she has her info all wrong, both as to what kind of control we have

had on diet and what is causing Jess to pee out all the calcium right

now - nephrologist is clear that at the moment its the diamox, not the

diet - but she is not letting a little thing like the facts stand in her

way. I feel like we have no support at all at the moment, if Jess

started seizing or had some diet-related problems, I wouldn't want to go

near them at the moment!

> How long has Jess been on the diet?

Will be four years in Feb, another error - in her letter to family dr,

stand in neuro said Jess has been on diet at least four and a half

years, should have been three and a half years......

> I need to thank you for sharing your experience regarding the hydro....since

> you informed us that your daughter had the same experience I started giving

> Bek a bedtime snack and decreased the seizure meds I had given to compensate

> for the seizures.....no more seizures. We now know it wasn't changing the

> ratio but the new meds!!!!! Rebekah is back to her happy self in the

> mornings thanks to you! Have a good day!

>

Okay, not 100% sure how I helped, but glad I did!!

I do think the important thing you likely learned from this is that

Rebekah needs acidity for seizure control, just like jess. Good luck,

let me know how it goes

, 's mom

[Guest guest]

Thanks ,

Rebekah is still struggling with night seizures so increased her clobozam a

bit and she slept better again last night. Thanks for explaining the

acidity issues, it really helped me to understand what happened. I agree the

diuretic wasn't the source of the seizure, but I was thinking it was causing

her discomfort(abdominal pain???) and that was making her restless all night

and eventually she seized from that. The acidity issues make much more sense

and helps explain why her ketones were down. Soooo much to learn!

LaVerna, mom to Rebekah

p.s. interesting thing is that our dieticians don't know about this

reaction...I checked with ours before I continued with the med earlier in

October....she said it wouldn't be a problem!

[Guest guest]

wes moreland wrote:

> LaVerna, mom to Rebekah

> p.s. interesting thing is that our dieticians don't know about this

> reaction...I checked with ours before I continued with the med earlier

> in

> October....she said it wouldn't be a problem!

>

Know what?? I don't think any of them want to know. The nephrologist

(kidney dr) is the one who should know about its effect on blood ph, in

our case, he didn't believe that acidity was 's key to seizure

control so whacked her over and over again with alkalizing drugs. And

for most kids on the diet, it wouldn't be a problem cuz most don't seem

to need acidity for seizure control. But there will always be a few who

make their own rules........if only I could get to read the

book, maybe she would follow it LOL

Good luck