update

[Guest guest]

Hi to everybody!

Me and my wife are doing fine at the moment. Actually quite good. We had

an ultrasound on tuesday (10w2d) which showed a baby alive and well! The

nurse who did the ultrasound didn't know how to interpret the whereabouts

of the septum - and probably it wouldn't even show in the US, because

during the last pregnancy it was not noticed in the US, although it was

very large. Of course, the real 'test' for us is probably ahead.

Hopefully everything is going smoothly with all of you.

Regards,

Marko

[Guest guest]

Okay, thanks. ly, I'm kinds of glad I'm not taking the urine of

pregnant mares. Yuck! Just kidding. Doc didn't mention it. I'll

have my follow up in a week and a half. I'll ask him what his

thoughts are on the subject then.

I stopped bleeding Thursday night! I can't believe it!

Aimee

>

> > What's Premarin??

>

> It's a conjugated estrogen made from the urine of pregnant mares.

Among

> other things, doctors prescribe it to help the uterine lining grow

over the

> cut area of the septum. I took it for 2 cycles after my first

septoplasty

> and had the deluge period of my life.

>

> Estrogen therapy after a septoplasty is nice, but optional. In a

month's

> time your uterine cavity should look normal.

>

> Beth

> --

> The Congenital Uterine Anomalies Home Page

> http://www.wegrokit.com/uterineanomalies/

[Guest guest]

<<She said if I am only 8-10weeks, they can SEE the heartbeat but not hear

it.>>

Very true! I think it's nothing alarming to not be able to find the

heartbeat with a doppler device up until 14 weeks.

<<Anyway, just trying to stay positive until the US. I am starting to get

paranoid since some of my symptoms have almost entirely abated over the past

4 or 5 days. Does anyone know if this is normal, to have breast

pain/swelling fluctuate like that?>>

Yes, it is. Breast swelling and pain can even fluctuate within the day, and

it is entirely normal.

When is the next US for you? I will keep you in my thoughts.

Beth

[Guest guest]

> On my end, I finally saw a doctor two days ago.  She tried to listen for

> the baby's heartbeat, but she couldn't.  I was pretty upset, but she said

> that I might not be as far along as I had originally thought.  She

> ordered an ultrasound and I go on May 14.  She said if I am only

> 8-10weeks, they can SEE the heartbeat but not hear it.  She tried to make

> me feel better by saying these things, but I was really hoping to just

> hear something to know all was okay.  Anyway, just trying to stay

> positive until the US.  I am starting to get paranoid since some of my

> symptoms have almost entirely abated over the past 4 or 5 days.  Does

> anyone know if this is normal, to have breast pain/swelling fluctuate

> like that? 

>

I think that symptoms disappearing may well be normal, we actually

had that also. And for the heartbeat, I think that during the first

ten weeks it is not at all unusual not to HEAR heartbeat. Cut from some

internet site,

-----

Your healthcare practitioner may be able to hear your baby's heartbeat as

early as 10-12 weeks since your LMP by using a small ultrasound audio

device called a Doppler.

Don't be upset if you can't hear the heartbeat quite that early -- your

dates may be off, the baby may be too far away or a layer of fat may

muffle the sound. Your healthcare provider may try again on the next

appointment or may check the baby's development via ultrasound.

-----

I hope that all is well.

Marko

[Guest guest]

Dear , When I was pregnant my doctor took blood samples for three weeks

to check my progesterone/hcg levels. If there is a problem with the

pregnancy, the hormone levels drop fast. A simple test like that might

relieve you until the US date (which must seem like an eternity) rolls round.

I know how tough it is to wait. My heart goes out to you.

[Guest guest]

Thanks, Marko, for the positive words. They always help. How is your wife

doing?

[Guest guest]

...

Could it be that with the Diamox and increased acidity that you could lower

the ratio? I know in the past you've encountered troubles lowering the

ratio, but maybe it was because the lower ratio dropped the acidity that

Jess needs? That should take care of the gagging episodes and give her more

of her beloved starches. Glad to hear you made it through MAY...what a

triumph! I know what you mean about the diet getting you things. I get 6

hours a day help for Sev due to the diet and his eating concerns...it makes

life so much more wonderful for all involved! Nan

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

...

Could it be that with the Diamox and increased acidity that you could lower

the ratio? I know in the past you've encountered troubles lowering the

ratio, but maybe it was because the lower ratio dropped the acidity that

Jess needs? That should take care of the gagging episodes and give her more

of her beloved starches. Glad to hear you made it through MAY...what a

triumph! I know what you mean about the diet getting you things. I get 6

hours a day help for Sev due to the diet and his eating concerns...it makes

life so much more wonderful for all involved! Nan

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

----- Original Message -----

> About once every couple of weeks now she gets gaggy and starts

> vomitting. Saw it coming again today, she hadn't drank as much as usual

> and started gagging at supper and either threw up or spit out some of

> her " ice cream " . She was as black as could be on the stix after supper

> and since diamox is a diuretic it makes your urine more diluted meaning

> she would be even darker in ketones than she looked. I really pushed the

> fluids all evening and hopefully she will be okay tonight.

- could you not give some juice, or something similar, to lower the

ketones just a little? Or does that change seizure control too much, for the

worse?

Is that what you mean by -:

> So it seems at the moment the price we pay for seizrue control is

intermittent nausea and vomitting.<

I suppose we all get the point where we are juggling the pro's and con's of

the diet, but I feel for you having to face either seizures or nausea in

. I hope you can find a solution though. When Hannah was almost black

stix and vomiting recently, I gave her as little as 10ml of cordial and the

problem resolved. Just wish I'd thought to test the next nappy to see where

ketones were at after the nausea and red cheeks disappeared.

Cheers

(Hannah's mum, Australia)

[Guest guest]

Dear :

I do understand your statement about is it worth what we do to keep them

away.

But I know on the otherhand that you will say YES it is worth it-Seizures

are almost intollerable. They break your heart.

I am actually looking very forward to the summer holidays when I can keep

away from other children who eat tons of junk. The better he feels

the tougher a time he gives me to keep going with the diet. We spend many a

night in his bed talking (actually me talking) and him crying saying he

would rather die than not eat all of the goodies around him. I think it is

very psychological.

We try to follow the diet as closely as we can and have removed all junk and

sugar from our house. But when we get company bearing bags of junk food of

delicious looking goodies that don't fit into our lives. Or if we try to go

to a hockey game and every-one around you is eating all of these goodies

that make Dwayne and I crazy never mind Jordan, Josh, and Hanna.

I know they say to not change your life style-well that would not work for

us. I could never take near a restaurant never mind into one and eat

whatever I please and let him eat his food.

We went on a field trip on Friday. The teachers bought all of the kids

candy. was destroyed so I went into the store and spent $ 30.00 on

these 2 cheap little toys and then all of the kids in his class were

jealous. But there was Josh trying to trade his toy for the candy.

I feel like we are freaks-we probablly appear to be to the average person.

But I am happy being a freak to obtain seizure freedom.

-sorry that was so long.............but I am praying that Jess will

obtain that-seizure freedom and that all of this will be some long ago

forgotten (HA< HA< HA) nightmare.

Hugs

Diane, Jordan 9, 7 seizure free 96 days, and Hanna 5

update

> Haven't updated on the Jessie monster lately so in case anyone is

> interested....

> Jess has been on the diet since Feb 98, immediately went almost two

> years seizure free but developed kidney stones. Tried to treat kidney

> stone and calcium loss issue with drugss and each time messed up seizure

> control. After over a year of that struggle it seemed like even without

> any drug or supplment her body had learned to fight the acidity of the

> diet (and acidity appears key to her seizure control) so the diet was no

> longer working. In desperation we added diamox to the diet, which they

> don't usually use with diet cuz it tends to make kids too acidic, but

> thats what we were looking for.

> Well its been a bit of a rocky ride. Diamox seemed to be working a

> little too well, she immediately got very acidic as measured by blood

> gasses and was vomitting and quite sick. Cut back on the dose and it

> seems we are relativley stable although I have to keep a very close eye

> on her. About once every couple of weeks now she gets gaggy and starts

> vomitting. Saw it coming again today, she hadn't drank as much as usual

> and started gagging at supper and either threw up or spit out some of

> her " ice cream " . She was as black as could be on the stix after supper

> and since diamox is a diuretic it makes your urine more diluted meaning

> she would be even darker in ketones than she looked. I really pushed the

> fluids all evening and hopefully she will be okay tonight.

> But the good news is we made it through a seizure month (May) without

> any seizrures. 's seizures are very predictable (she takes week

> long clusters but only in certain months of the year) so when you hit a

> seizure month you find out very quickly whether what you are doing is

> working or not.

> So it seems at the moment the price we pay for seizrue control is

> intermittent nauseau and vomitting. Which doesn't sound too bad

> unless/until you add in the other issues - calcium loss (possible

> osteoporosis) and kidney stones. But for the moment I will leave well

> enough alone - at least the diet has guaranteed her a full time aide at

> school

> So thats where we are, I am happy to have the seizures gone (providing

> they stay away) but am seriously wondering at this point whether its

> worth what we do to her to keep them away

> , 's mom

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

Dear :

I do understand your statement about is it worth what we do to keep them

away.

But I know on the otherhand that you will say YES it is worth it-Seizures

are almost intollerable. They break your heart.

I am actually looking very forward to the summer holidays when I can keep

away from other children who eat tons of junk. The better he feels

the tougher a time he gives me to keep going with the diet. We spend many a

night in his bed talking (actually me talking) and him crying saying he

would rather die than not eat all of the goodies around him. I think it is

very psychological.

We try to follow the diet as closely as we can and have removed all junk and

sugar from our house. But when we get company bearing bags of junk food of

delicious looking goodies that don't fit into our lives. Or if we try to go

to a hockey game and every-one around you is eating all of these goodies

that make Dwayne and I crazy never mind Jordan, Josh, and Hanna.

I know they say to not change your life style-well that would not work for

us. I could never take near a restaurant never mind into one and eat

whatever I please and let him eat his food.

We went on a field trip on Friday. The teachers bought all of the kids

candy. was destroyed so I went into the store and spent $ 30.00 on

these 2 cheap little toys and then all of the kids in his class were

jealous. But there was Josh trying to trade his toy for the candy.

I feel like we are freaks-we probablly appear to be to the average person.

But I am happy being a freak to obtain seizure freedom.

-sorry that was so long.............but I am praying that Jess will

obtain that-seizure freedom and that all of this will be some long ago

forgotten (HA< HA< HA) nightmare.

Hugs

Diane, Jordan 9, 7 seizure free 96 days, and Hanna 5

update

> Haven't updated on the Jessie monster lately so in case anyone is

> interested....

> Jess has been on the diet since Feb 98, immediately went almost two

> years seizure free but developed kidney stones. Tried to treat kidney

> stone and calcium loss issue with drugss and each time messed up seizure

> control. After over a year of that struggle it seemed like even without

> any drug or supplment her body had learned to fight the acidity of the

> diet (and acidity appears key to her seizure control) so the diet was no

> longer working. In desperation we added diamox to the diet, which they

> don't usually use with diet cuz it tends to make kids too acidic, but

> thats what we were looking for.

> Well its been a bit of a rocky ride. Diamox seemed to be working a

> little too well, she immediately got very acidic as measured by blood

> gasses and was vomitting and quite sick. Cut back on the dose and it

> seems we are relativley stable although I have to keep a very close eye

> on her. About once every couple of weeks now she gets gaggy and starts

> vomitting. Saw it coming again today, she hadn't drank as much as usual

> and started gagging at supper and either threw up or spit out some of

> her " ice cream " . She was as black as could be on the stix after supper

> and since diamox is a diuretic it makes your urine more diluted meaning

> she would be even darker in ketones than she looked. I really pushed the

> fluids all evening and hopefully she will be okay tonight.

> But the good news is we made it through a seizure month (May) without

> any seizrures. 's seizures are very predictable (she takes week

> long clusters but only in certain months of the year) so when you hit a

> seizure month you find out very quickly whether what you are doing is

> working or not.

> So it seems at the moment the price we pay for seizrue control is

> intermittent nauseau and vomitting. Which doesn't sound too bad

> unless/until you add in the other issues - calcium loss (possible

> osteoporosis) and kidney stones. But for the moment I will leave well

> enough alone - at least the diet has guaranteed her a full time aide at

> school

> So thats where we are, I am happy to have the seizures gone (providing

> they stay away) but am seriously wondering at this point whether its

> worth what we do to her to keep them away

> , 's mom

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hi ,

<br>So glad avoided the 'May sz'. It's funny

<br>about the acid thing. I have a feeling Rohan needs

<br>to be a bit alkaline - I don't know whether it makes

<br>sense. Usually his pH is around 6 but on certain days

<br>it has been about 7 or slightly more and those have

<br>been fairly sz-free. Thinking about these things is

<br>making my head spin!

<br>Hope Jess has continued success.

<br>Saro....Rohan's mum

<br> & nbsp;

<br> & nbsp;</html>

[Guest guest]

> But the good news is we made it through a seizure month (May) without

> any seizrures. 's seizures are very predictable

Hey MMC, that's GREAT news. Very happy to hear that!

> So thats where we are, I am happy to have the seizures gone (providing

> they stay away) but am seriously wondering at this point whether its

> worth what we do to her to keep them away

I think we all wonder that ...I know I do all the time. Hang in

there.

Barb and Jake Swoyer

[Guest guest]

" GAVAN J. CANAVAN " wrote:

> - could you not give some juice, or something similar, to lower the

> ketones just a little? Or does that change seizure control too much, for the

> worse?

Thanks , actually that is what I usually do when she gets really bad, I was

hoping

(and apparently it worked) that just fluids would do it if I caught it quick

enough.

I geuss the problem is that I see that as a bandaid solution (which I am

grateful to

have) but its just a temporary fix, doesn't solve the underlying problem. Jess

loves it

though, then she keeps asking for juice for days and days afterwards lOL

[Guest guest]

nanett prausa wrote:

> ...

>

> Could it be that with the Diamox and increased acidity that you could lower

> the ratio? I know in the past you've encountered troubles lowering the

> ratio, but maybe it was because the lower ratio dropped the acidity that

> Jess needs? That should take care of the gagging episodes and give her more

> of her beloved starches.

Great minds must think alicke - but the neuro begs to differ! I suggested that

just

before we dropped the dose but he wanted to lower the drug and not the ratio. He

said

diamox was never a very good anticonvulsant and he didn't want to be relying on

it as the

main medication. So I geuss he sees the diet as the drug of choice and the

diamox as an

add on (which certainly on one level is fine with me).

> Glad to hear you made it through MAY...what a

> triumph! I know what you mean about the diet getting you things. I get 6

> hours a day help for Sev due to the diet and his eating concerns...it makes

> life so much more wonderful for all involved! Nan

>

Yep, thing is I know I can't let the goofy school board influence a medical

decision.

Well it we ever get there I will just have to take them to court, least I am

getting lots

of practice with helping other parents, by the time Jess needs me, it should be

old hat

LOL

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

I understand exactly what you mean.........and I cling to the hope that this

*may not* be forever. Or that it might get to the point where it's

manageable, more like a diabetic's diet. I have known some kids with severe

juvenile diabetes..........it's very hard, but their diets are looser than

this, at least in my experience.

One thing which has really helped us is being able to lower the ratio. Nate

is lucky, that he does better around 40 ketones, and he's able to maintain

that on 2.3 to 1 (for now!) and he gets so many calories, that he actually

gets 32 grams of carbs a day, rather than the 9 we started with. Gives us a

lot of room to play. Once in a while, I do a meal with no fruit, so that he

can have those carbs in something else.....he went to the movies with

friends the other day, and his yogurt meal included 2 cups (more or less) of

popcorn!!

This may get easier with time............or you will be seizure-free long

enough to stop altogether..........hang on to hope, and remember, you're not

alone, and pour out all that frustration here, we understand. Love, Deb

> Dear :

>

> I do understand your statement about is it worth what we do to keep them

> away.

>

> But I know on the otherhand that you will say YES it is worth it-Seizures

> are almost intollerable. They break your heart.

>

> I am actually looking very forward to the summer holidays when I can keep

> away from other children who eat tons of junk. The better he feels

> the tougher a time he gives me to keep going with the diet. We spend many

a

> night in his bed talking (actually me talking) and him crying saying he

> would rather die than not eat all of the goodies around him. I think it

is

> very psychological.

>

> We try to follow the diet as closely as we can and have removed all junk

and

> sugar from our house. But when we get company bearing bags of junk food

of

> delicious looking goodies that don't fit into our lives. Or if we try to

go

> to a hockey game and every-one around you is eating all of these goodies

> that make Dwayne and I crazy never mind Jordan, Josh, and Hanna.

>

> I know they say to not change your life style-well that would not work for

> us. I could never take near a restaurant never mind into one and

eat

> whatever I please and let him eat his food.

>

> We went on a field trip on Friday. The teachers bought all of the kids

> candy. was destroyed so I went into the store and spent $ 30.00 on

> these 2 cheap little toys and then all of the kids in his class were

> jealous. But there was Josh trying to trade his toy for the candy.

>

> I feel like we are freaks-we probablly appear to be to the average person.

> But I am happy being a freak to obtain seizure freedom.

>

> -sorry that was so long.............but I am praying that Jess

will

> obtain that-seizure freedom and that all of this will be some long ago

> forgotten (HA< HA< HA) nightmare.

>

> Hugs

> Diane, Jordan 9, 7 seizure free 96 days, and Hanna 5

> update

>

>

> > Haven't updated on the Jessie monster lately so in case anyone is

> > interested....

> > Jess has been on the diet since Feb 98, immediately went almost two

> > years seizure free but developed kidney stones. Tried to treat kidney

> > stone and calcium loss issue with drugss and each time messed up seizure

> > control. After over a year of that struggle it seemed like even without

> > any drug or supplment her body had learned to fight the acidity of the

> > diet (and acidity appears key to her seizure control) so the diet was no

> > longer working. In desperation we added diamox to the diet, which they

> > don't usually use with diet cuz it tends to make kids too acidic, but

> > thats what we were looking for.

> > Well its been a bit of a rocky ride. Diamox seemed to be working a

> > little too well, she immediately got very acidic as measured by blood

> > gasses and was vomitting and quite sick. Cut back on the dose and it

> > seems we are relativley stable although I have to keep a very close eye

> > on her. About once every couple of weeks now she gets gaggy and starts

> > vomitting. Saw it coming again today, she hadn't drank as much as usual

> > and started gagging at supper and either threw up or spit out some of

> > her " ice cream " . She was as black as could be on the stix after supper

> > and since diamox is a diuretic it makes your urine more diluted meaning

> > she would be even darker in ketones than she looked. I really pushed the

> > fluids all evening and hopefully she will be okay tonight.

> > But the good news is we made it through a seizure month (May) without

> > any seizrures. 's seizures are very predictable (she takes week

> > long clusters but only in certain months of the year) so when you hit a

> > seizure month you find out very quickly whether what you are doing is

> > working or not.

> > So it seems at the moment the price we pay for seizrue control is

> > intermittent nauseau and vomitting. Which doesn't sound too bad

> > unless/until you add in the other issues - calcium loss (possible

> > osteoporosis) and kidney stones. But for the moment I will leave well

> > enough alone - at least the diet has guaranteed her a full time aide at

> > school

> > So thats where we are, I am happy to have the seizures gone (providing

> > they stay away) but am seriously wondering at this point whether its

> > worth what we do to her to keep them away

> > , 's mom

> >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

professional

> keto team!

> > Subscribe: ketogenic-subscribe

> > Unsubscribe: ketogenic-unsubscribe

> >

> >

> >

> >

[Guest guest]

I understand exactly what you mean.........and I cling to the hope that this

*may not* be forever. Or that it might get to the point where it's

manageable, more like a diabetic's diet. I have known some kids with severe

juvenile diabetes..........it's very hard, but their diets are looser than

this, at least in my experience.

One thing which has really helped us is being able to lower the ratio. Nate

is lucky, that he does better around 40 ketones, and he's able to maintain

that on 2.3 to 1 (for now!) and he gets so many calories, that he actually

gets 32 grams of carbs a day, rather than the 9 we started with. Gives us a

lot of room to play. Once in a while, I do a meal with no fruit, so that he

can have those carbs in something else.....he went to the movies with

friends the other day, and his yogurt meal included 2 cups (more or less) of

popcorn!!

This may get easier with time............or you will be seizure-free long

enough to stop altogether..........hang on to hope, and remember, you're not

alone, and pour out all that frustration here, we understand. Love, Deb

> Dear :

>

> I do understand your statement about is it worth what we do to keep them

> away.

>

> But I know on the otherhand that you will say YES it is worth it-Seizures

> are almost intollerable. They break your heart.

>

> I am actually looking very forward to the summer holidays when I can keep

> away from other children who eat tons of junk. The better he feels

> the tougher a time he gives me to keep going with the diet. We spend many

a

> night in his bed talking (actually me talking) and him crying saying he

> would rather die than not eat all of the goodies around him. I think it

is

> very psychological.

>

> We try to follow the diet as closely as we can and have removed all junk

and

> sugar from our house. But when we get company bearing bags of junk food

of

> delicious looking goodies that don't fit into our lives. Or if we try to

go

> to a hockey game and every-one around you is eating all of these goodies

> that make Dwayne and I crazy never mind Jordan, Josh, and Hanna.

>

> I know they say to not change your life style-well that would not work for

> us. I could never take near a restaurant never mind into one and

eat

> whatever I please and let him eat his food.

>

> We went on a field trip on Friday. The teachers bought all of the kids

> candy. was destroyed so I went into the store and spent $ 30.00 on

> these 2 cheap little toys and then all of the kids in his class were

> jealous. But there was Josh trying to trade his toy for the candy.

>

> I feel like we are freaks-we probablly appear to be to the average person.

> But I am happy being a freak to obtain seizure freedom.

>

> -sorry that was so long.............but I am praying that Jess

will

> obtain that-seizure freedom and that all of this will be some long ago

> forgotten (HA< HA< HA) nightmare.

>

> Hugs

> Diane, Jordan 9, 7 seizure free 96 days, and Hanna 5

> update

>

>

> > Haven't updated on the Jessie monster lately so in case anyone is

> > interested....

> > Jess has been on the diet since Feb 98, immediately went almost two

> > years seizure free but developed kidney stones. Tried to treat kidney

> > stone and calcium loss issue with drugss and each time messed up seizure

> > control. After over a year of that struggle it seemed like even without

> > any drug or supplment her body had learned to fight the acidity of the

> > diet (and acidity appears key to her seizure control) so the diet was no

> > longer working. In desperation we added diamox to the diet, which they

> > don't usually use with diet cuz it tends to make kids too acidic, but

> > thats what we were looking for.

> > Well its been a bit of a rocky ride. Diamox seemed to be working a

> > little too well, she immediately got very acidic as measured by blood

> > gasses and was vomitting and quite sick. Cut back on the dose and it

> > seems we are relativley stable although I have to keep a very close eye

> > on her. About once every couple of weeks now she gets gaggy and starts

> > vomitting. Saw it coming again today, she hadn't drank as much as usual

> > and started gagging at supper and either threw up or spit out some of

> > her " ice cream " . She was as black as could be on the stix after supper

> > and since diamox is a diuretic it makes your urine more diluted meaning

> > she would be even darker in ketones than she looked. I really pushed the

> > fluids all evening and hopefully she will be okay tonight.

> > But the good news is we made it through a seizure month (May) without

> > any seizrures. 's seizures are very predictable (she takes week

> > long clusters but only in certain months of the year) so when you hit a

> > seizure month you find out very quickly whether what you are doing is

> > working or not.

> > So it seems at the moment the price we pay for seizrue control is

> > intermittent nauseau and vomitting. Which doesn't sound too bad

> > unless/until you add in the other issues - calcium loss (possible

> > osteoporosis) and kidney stones. But for the moment I will leave well

> > enough alone - at least the diet has guaranteed her a full time aide at

> > school

> > So thats where we are, I am happy to have the seizures gone (providing

> > they stay away) but am seriously wondering at this point whether its

> > worth what we do to her to keep them away

> > , 's mom

> >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

professional

> keto team!

> > Subscribe: ketogenic-subscribe

> > Unsubscribe: ketogenic-unsubscribe

> >

> >

> >

> >

[Guest guest]

GO Jess!!! Put a big fat smile on the month of May!!!!!!!!!

Kathy in Tennessee

Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced

Mom to 'lil sis, a - 3

" Even to your old age and gray hairs I am He, I am He who will sustain

you. I have made you and I will carry you; I will sustain you and I will

rescue you. "

Isaiah 46:4

On Sun, 10 Jun 2001 20:02:46 +0000 m.coole@... writes:

> Haven't updated on the Jessie monster lately so in case anyone is

> interested....

> Jess has been on the diet since Feb 98, immediately went almost two

> years seizure free but developed kidney stones. Tried to treat

> kidney

> stone and calcium loss issue with drugss and each time messed up

> seizure

> control. After over a year of that struggle it seemed like even

> without

> any drug or supplment her body had learned to fight the acidity of

> the

> diet (and acidity appears key to her seizure control) so the diet

> was no

> longer working. In desperation we added diamox to the diet, which

> they

> don't usually use with diet cuz it tends to make kids too acidic,

> but

> thats what we were looking for.

> Well its been a bit of a rocky ride. Diamox seemed to be working a

> little too well, she immediately got very acidic as measured by

> blood

> gasses and was vomitting and quite sick. Cut back on the dose and it

> seems we are relativley stable although I have to keep a very close

> eye

> on her. About once every couple of weeks now she gets gaggy and

> starts

> vomitting. Saw it coming again today, she hadn't drank as much as

> usual

> and started gagging at supper and either threw up or spit out some

> of

> her " ice cream " . She was as black as could be on the stix after

> supper

> and since diamox is a diuretic it makes your urine more diluted

> meaning

> she would be even darker in ketones than she looked. I really pushed

> the

> fluids all evening and hopefully she will be okay tonight.

> But the good news is we made it through a seizure month (May)

> without

> any seizrures. 's seizures are very predictable (she takes

> week

> long clusters but only in certain months of the year) so when you

> hit a

> seizure month you find out very quickly whether what you are doing

> is

> working or not.

> So it seems at the moment the price we pay for seizrue control is

> intermittent nauseau and vomitting. Which doesn't sound too bad

> unless/until you add in the other issues - calcium loss (possible

> osteoporosis) and kidney stones. But for the moment I will leave

> well

> enough alone - at least the diet has guaranteed her a full time

> aide at

> school

> So thats where we are, I am happy to have the seizures gone

> (providing

> they stay away) but am seriously wondering at this point whether its

> worth what we do to her to keep them away

> , 's mom

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

Dear :

Sorry 's EEG wasn't perfect. That is such a dream each of the

Mother's and Father's on the list hold in their heart.

Was this EEG better than his EEG's prior to the diet? If it is you have

climbed half way up that mountian-may-be three-quarters of the way.

It is so very difficult when your dreams get crushed. You are a " Great Mom "

and you need to gather your strength and keep on going.

Hugs

Diane

Update

> Hi everyone! It has been a really long time since I have posted.

> will have been on the Diet med free and seizure free for 2

> Years on sept, 1st 2001. We just had our EEG done (to see if we can

> get off the diet) and it turns out is still having " activity "

> at night while sleeping. So the doctor said that he will have to stay

> on the diet for another year! I am very sad although not as sad as I

> was when he was having 50 drop seizures a day. Has anyone ever been

> in my boat? Do you think another year will change the EEG? I only

> heard this news breifly over the phone. We see the doctor on the 8th

> and I hope to have all my questions ready then. I also finally have a

> picture of . Where can I post it? Can you attach a file here-

> , 's mom

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

I haven't posted in quite a while, but have been keeping up with the

e-mails.

I had my 20 week about 2 weeks ago (UD; first pregnancy). We found out we

are having a boy!! And, then we got our first " baby scare. " They told us

that they thought he had a congenital heart defect. Needless to say, I

spent the entire weekend crying off & on. And, on Monday, we had a fetal

echocardiogram done. They said that everything seemed fine. And, they felt

that the problems seen on the US were due to the UD & the positioning of the

baby, as the echo was also difficult to conduct (but, they were able to get

good pictures of the heart after flipping me every which way).

During the US, my husband & I were both surprised that the baby was head

down - but, we'll see if he stays that way!! I remember reading one article

that said 84% of the women in the study had to have c-sections. But, that

was just one study... We'll have to see what our statistics say.

About the genetic discussion, I also read in an article that estimated that

2.7% of first degree relatives of someone with a MA also have a MA. I'm

pretty sure that this was one of the articles up on the Mullerian Anomalies

website - but I am not 100% sure.

Best wishes to everyone.

Tammy

UD; EDD 1/30/02

[Guest guest]

> I haven't posted in quite a while, but have been keeping up with the

> e-mails.

>

> I had my 20 week about 2 weeks ago (UD; first pregnancy). We found

out we

> are having a boy!!

Congratulations, Tammy! I'm so glad the heart scare was just that.

With US, you just never can be sure if a problem is an artifact or

what.

> About the genetic discussion, I also read in an article that

estimated that

> 2.7% of first degree relatives of someone with a MA also have a

MA. I'm

> pretty sure that this was one of the articles up on the Mullerian

Anomalies

> website - but I am not 100% sure.

Yes, that is from the great article by Beth Egan on the Hygeia

website. (IIRC)

2.7 percent suggests that most of us should heave a big sigh of

relief! :-)

Beth

>

> Best wishes to everyone.

>

> Tammy

> UD; EDD 1/30/02

[Guest guest]

>

> I had my 20 week about 2 weeks ago (UD; first pregnancy). We found out we> are

having a boy!!

Congrats -- and whew! on his healthy heart. This will not be the first time he

makes your own heart skip a beat! Get ready for the most vulnerable feelings

you'll ever have. Hope and prayers for a safe 2nd half!

Kate

[Guest guest]

In a message dated 1/11/2002 1:58:21 PM Central Standard Time,

crystal@... writes:

> To me this is one of those things you hear about happening

> to others, but you never think it will happen to you. I was so upset

> about this yesterday. It is so discouraging. However, the doctor

> said that this should be considered a little encouraging just

> because I know my body is trying to conceive & is capable( I have a

> 6 year old daughter). Now it is just a matter of timing. He said if

> I did not get pregnant in a couple of months then we will talk about

> getting on clomid or something.

>

Crystal sorry to hear about what happened. This has happened to me more than

I care to count. Who knows why. I don't believe it had anything to do with my

MA, I will never know for sure though.

Kim2

[Guest guest]

In a message dated 1/11/2002 1:58:21 PM Central Standard Time,

crystal@... writes:

> To me this is one of those things you hear about happening

> to others, but you never think it will happen to you. I was so upset

> about this yesterday. It is so discouraging. However, the doctor

> said that this should be considered a little encouraging just

> because I know my body is trying to conceive & is capable( I have a

> 6 year old daughter). Now it is just a matter of timing. He said if

> I did not get pregnant in a couple of months then we will talk about

> getting on clomid or something.

>

Crystal sorry to hear about what happened. This has happened to me more than

I care to count. Who knows why. I don't believe it had anything to do with my

MA, I will never know for sure though.

Kim2

[Guest guest]

Crystal,

I am so so so sorry. I'm glad you found out before the 28th though.

Please take good care of yourself and allow yourself to grieve.

I will be thinking of you.

Tara

> Hello Ladies. I went to the doctor today & found out that my

> pregnancy failed. The doctor said that the HCG level of 36 was

> normal for an early pregnancy (It was done on CD 26), but that

> conception fails in approximately 50% of pregnancies & most women

> never even know that their body tried to conceive. My body was

> trying to conceive, but it just did not work. He also said that it

> was like a miscarrage of cells rather than an actual embryo. In

> other words, the embryo never formed. In case you are wondering,

the

> reason I went to the doctor was because I started cramping &

> bleeding. If that had not occurred I would have been scheduled to

go

> for a vist on Jan 28 for a 7 week US. I cannot believe this has

> happened. To me this is one of those things you hear about

happening

> to others, but you never think it will happen to you. I was so

upset

> about this yesterday. It is so discouraging. However, the doctor

> said that this should be considered a little encouraging just

> because I know my body is trying to conceive & is capable( I have a

> 6 year old daughter). Now it is just a matter of timing. He said if

> I did not get pregnant in a couple of months then we will talk

about

> getting on clomid or something.

>

> Crystal UU