Introduction

June 22, 2000

,

I'm sorry you've had a rough year. This group is so great. They can give

you so much support. I'm sure you will feel the same as well. If we have to

go through things like this, at least there is someone like Krista kind

enough to start a group to support us through it (Thanks, Krista!).

As far as some of us having been through more than one ectopic, and some are

going to do IVF, you should not feel weak bc of it. You are going through a

really rough time. We all did. But you can believe that we will be here to

help you get through it. I actually think I took the news of my second ep

much worse than I did the first. I resumed normal activities fairly quickly

the first time, whereas with the second I just laid on the sofa for a few

weeks. I think we have probably all done things differently in regards to

our losses, but the one thing that is the same is we all hurt, we all cried,

we all have the same fears, and we probably all had the exact same thoughts

going through our heads. I really hope that we can help you with your

feelings. We will definitely be here for you to vent/cry/scream to.

Amy

*CD 25, 8 dpo

*TTC 2 years

*Earth Angel, (6/18/97)

*Angel Babies, 6/98 and 7/99 (D & C and metho both times)

June 22, 2000

Hi lisa!

My heart goes out to you and your precious angels..All of us have been

down the same path, some roads more difficult than others. I just have a

quick question, are you seeing a specialist(reproductive

endocrinologist)....Maybe you should try an appointment w/ one before you

attempt to conceive again..I had an ectopic on 03/16/00 and I was treated w/

metho...It was my 1st pregnancy and I think that I need time to grieve for my

precious Bria Simone. You've found a great group and welcome to a wonderful

circle of friends. If you want to talk I'm Tq and we're all here for you

Tq

ep on 03/16/00

1st preg treated w/ metho

June 22, 2000

,

Welcome to the group. What terrible experiences for you to have. You

have a lot of strength. I had my ep last August. I recently switched

to an RE when my other dr didn't seem to be able to help me. I had a

HSG and a lap done. I have a tubal issue. We are going to ttc again

finally. Alot of the IVF etc.. are scary. But its unbelieveable were

you get the strength when you really want something. I think you will

really like this group.

Pam

June 23, 2000

I am really sorry for the pain you are feeling right now and the experiences

you have faced, its very difficult to deal with and to accept. I have had

two eps one in Feb 99 (8 weeks) and one in Dec 99 ( 5 weeks). I have

accepted my loss but there are nights when i cry for the children that i

have lost. I am really glad that you have joined the group, there are many

caring, loving and supportive women on this group and i have found great

strength and comfort from their friendship and understanding. It really does

help to talk to people who really know what you are going through.

I lost my left tube with the first ep and my right tube was repaired after

the second ep. I had a lap and the tube is OK. I am going to start my first

IUI, cycle next week(depending on whether i ovulate from the right side). So

that's where i am now.

The path in ttc is long and difficult and mine has had a lot of

frustrations, but it is important to be strong and never give up that dream

of being a mother.

Love

Shamiso

June 23, 2000

, I am so sorry for your losses and wish you much luck in the future.

The decision to ttc is very difficult after a lost and I can understand your

concern. I have never heard of the problem you have with your tube being

woobly. Hopefully one of the other woman can help you and give you advice. It

took a long time for me to get up the nerve to try again, but I am glad I

did. I think some days thats the only thing that keeps me going.. Best

wishes. Chrissy

June 23, 2000

J,

I'm so sorry for your losses. I am happy that you have found us. These

ladies here have been through so much and through so many procedures that any

question you have will be answered or they will find an answer to.

We're all here to support each other and I'm happy that you are now a part of

that.

Take care,

June 24, 2000

,

Sorry I haven't welcomed you before this, just wanted to say sorry

for your losses and hope you can find the comfort & friendships I

have w/these wonderful women. It is nice to have others to talk to

who truly understand, unfortunately the list just keeps growing &

growing. If ever you need support this is the place to come, these

women are truly women of strength and knowledge. Welcome!

cd ?

ttc 2 1/2yrs.

Mommy to Jack (3)

ep 1/3/00 lap

October 3, 2001

--- don_gal wrote:

> Please allow me to introduce my daughter and myself.

> My 5 1/2 year old daughter, , has been having

> seizures since she turned three, secondary to her

> Rett syndrome. She has not shown improvement in

> seizure control from any of the meds she has tried.

>

> Our neurologist has been asking us to consider the

> ketogenic diet for for over a year now. He

> tells us that the diet will be easier to administer

> to her than to an oral eater, as she is g-tube fed.

Ariana is gtube fed and the diet has been a miracle in

her life, since she started in November, 1999. It

certainly makes administration of the diet easier.

> I will admit that I am terrified at the idea of high

> fats because her digestion is so delicate.

The high fats are nothing to be concerned according to

our experience. It seems like the change from high

sugar to high fat changes the metabolism and the mis

firing in the brain is reduced. Ariana's been seizure

free for over a year on the diet. Thank God she

doesn't have to take the Pheno, Depakene,

Prednisolone, and Dilantin the neuro had her on before

the diet.

He told

> us that she could have fundoplication surgery to

> adress reflux issues before we start the diet, but

> this seems like a drastic measure without knowing if

> the diet will be effective in controlling seizures

> for her. Right now she has excellent reflux control

> with Prilosec and her current diet.

Ariana, has a fundoplocation and this helps eliminate

reflux without medication. We find about 3 times a

week, about a couple of hours after a feeding we vent

her tummy, by connecting the mic-key and letting the

gas bubble to let excess gas escape. Otherwise no

complications for us.

>

> has also had an extremely low threshold for

> gastric discomfort in the past, although I am

> praying that she may have outgrown this somewhat.

> When she was younger, gas pains and constipation

> sent her over the edge and she was unable to

> function during times of digestive distress. Her

> current non-keto diet and hydration has addressed

> these issues fully, and I am worried about rocking

> the boat.

>

> But we are also running out of options for seizure

> control. Reading posts over the last couple days on

> the keto list has been reassuring. Knowing that

> there are parents who understand the nuances of the

> diet and are just a mouse click away is very

> helpful. We want so badly to hope the keto diet may

> be helpful for seizure control--drugs certainly have

> not been, and the host of side-effects have been

> unbearable--but I am so worried about being

> able to tolerate the formula. She would be taking

> Ross Carb-Free. Are there pointers people can offer

> about the types of additives (microlipids, MCT) that

> balance out the g-tube keto diet?

Ariana is now 22 pounds at 3.5 years of age. We use

the Ross RCF formula, with Microlipids, 5 cc's of

Spectrum Essential Oil Mix, 1/2 of an Adult Vitamin

tablet, 1/2 of a capsule of Calcium blend daily.

If this is too

> much bother, can someone direct me to some good key

> words to look up in the archived posts?

>

> Thanks so much for allowing us to learn from you,

> Rose-Marie,

> wife to Don,

> mom to , (5 1/2 yrs)

> and Becky (3 1/2 yrs)

> North Bend, WA, USA

> don_gal@...

>

__________________________________________________

November 10, 2001

Hi Emma,

Welcome to the group! I am sorry you have to

be here, but you will find very supportive women

here and hopefully also information that will

help you. I am 46 and was recently diagnoised with

Vulvodynia, Vestibulitis and also have atrophic

vaginitis and possible LS or LP. I had some biopsies

done yesterday that hopefully will shed some light

on my situation. So many of us here have seen a lot

of doctors trying to find one that can help. Emma,

have you found a good vulvodynia specialists? I hope

so. Take care and welcome again.

Hugs, Pam

November 11, 2001

Hi there,

Welcome to the group, sorry you have to be hear though. Alright lets see if

I can tell you about myself and be brief.

My name is O'Brien, Bunny is my nickname (or Bunny).

I'm 26, married for 4 years, no children. I work part time, and live in an

appartment with my husband, 2 cats and of course a bunny.

My vulvodynia symptoms became noticable when I first became sexually active.

I have been suffering with this for about 8 years. Last year I was

diagnosed with vulvar vestibulitis and began treatment with a specialist in

Milwaukee WI. I had a compleate vulvar vestibulectomy in May of this year.

I am now in PT and fighting with a chronic yeast infection from some

antibiotics I had to take a month or so ago. The doctor has me on Difflucan

for 6 months for that (God I hope I dont get sick again this year! and YES

I got my flu shot).

I live in MN and I am the contact person for the NVA in the Twin Cities

area. I have support meetings at my church every month with a couple of the

gals I met on this group that live near me, as well as a couple on the LS

group.

I enjoy art and crafty things and I teach sunday school with my husband

(first and second grade).

Bunny /| |\

. .

( ! )

Reply-To: VulvarDisorders

To: VulvarDisorders

Subject: Introduction

Date: Sat, 10 Nov 2001 06:55:24 -0800 (PST)

Hello everyone, my name is Emma. I am 26 and after 3

years of marriage, I just found out what my problem

actually is and that this problem exist in others. I

have never been a part of a support group so I am

quite new at this. Since I am new, I would love to

know a little about you guys. I hope to hear from you soon.

__________________________________________________

January 9, 2002

Melinda,

Where in Texas do you live?

--- Melinda wrote:

> Hello girls,

> My name is Melinda, 22 yrs old,newly wed,married

> last March, from Texas.

> I am hoping to find out some treatment for the

> vulvar burning I have been

> having. I was given this group from the lady that

> started GYNGALS,which is

> a similar group for any gyn problem, primarily

> vulvar cancer is the focus.

> My burning in the vulva/vagina started in Oct 2000,

> at which time my dr

> thought it was a yeast infection, so I was treated

> with diflucan and then

> the cream none of which worked. Then they thougth it

> was BV-bacteria

> vaginosis, gave me metrogel, didn't work, then an

> oral pill, still didn't

> work. My dr didn't know what else to do so referred

> me to a specialist 3 hrs

> away. At that time it was hard to go 3 hrs to see a

> Dr, so I went for a

> second oppinion, which didn't help either. This Dr

> insisted it was BV, and

> gave me Metrogel and told me to use it for longer

> period of time, still not

> better. This dr did find a wart at the tip of my

> urethra. I treated it with

> Aldara and it went away, but the burning was still

> there.

> BTW-didn't mention that the burning is pretty much

> every day, some days more

> painful than others, uncomfortable to wear a tampon,

> haven't worn one since

> all this mess started.

> I finally went back to my original Dr and decided to

> go to the specialist he

> referred me to . What a joke. This guy insisted it

> was some rare yeast and

> when none showed up 2wks later, said they would

> allow more time to grow and

> none was ever found. SO he told my Dr to have me

> douche with baking soda, if

> that didn't work, which it didn't use

> Cleocin,vaginal suppositories for 2

> wks, which I just finished doing and it didn't help

> either. Next step is

> some steroid cream, I need to call Dr back to get

> it.

> In the meantime after seeing the specialist in July,

> I saw these weird

> bumps, which I pointed out to him and he said they

> weren't anything. WRONG!

> I showed my Dr and he did a biopsy and it came back

> moderate to severe

> dyslpasia. I was scared! I had to have a partial

> vulvectomy 2 wks later, in

> Sept '01. My dr could not believe it either, he said

> they just looked like

> warts. My dr thougth they could have been causing

> the pain, but it didn't

> get better after the surgery like I had hoped.

> Anyways, sorry to get so in depth.

> Hopefully someone here can help me as my Dr doesn't

> know what else to do. He

> mentioned it could be vestibulius, but is sounds

> more like Vulvodynia since

> the pain is all the time rather than when touched or

> during sex.

> Please let me know of any suggestion.

> thanks,

> Melinda

>

_________________________________________________________________

> Chat with friends online, try MSN Messenger:

> http://messenger.msn.com

>

__________________________________________________

January 9, 2002

, I live in Tyler.

>

>Reply-To: VulvarDisorders

>To: VulvarDisorders

>Subject: Re: Introduction

>Date: Wed, 9 Jan 2002 08:58:39 -0800 (PST)

>

>Melinda,

>

>Where in Texas do you live?

>

>--- Melinda wrote:

> > Hello girls,

> > My name is Melinda, 22 yrs old,newly wed,married

> > last March, from Texas.

> > I am hoping to find out some treatment for the

> > vulvar burning I have been

> > having. I was given this group from the lady that

> > started GYNGALS,which is

> > a similar group for any gyn problem, primarily

> > vulvar cancer is the focus.

> > My burning in the vulva/vagina started in Oct 2000,

> > at which time my dr

> > thought it was a yeast infection, so I was treated

> > with diflucan and then

> > the cream none of which worked. Then they thougth it

> > was BV-bacteria

> > vaginosis, gave me metrogel, didn't work, then an

> > oral pill, still didn't

> > work. My dr didn't know what else to do so referred

> > me to a specialist 3 hrs

> > away. At that time it was hard to go 3 hrs to see a

> > Dr, so I went for a

> > second oppinion, which didn't help either. This Dr

> > insisted it was BV, and

> > gave me Metrogel and told me to use it for longer

> > period of time, still not

> > better. This dr did find a wart at the tip of my

> > urethra. I treated it with

> > Aldara and it went away, but the burning was still

> > there.

> > BTW-didn't mention that the burning is pretty much

> > every day, some days more

> > painful than others, uncomfortable to wear a tampon,

> > haven't worn one since

> > all this mess started.

> > I finally went back to my original Dr and decided to

> > go to the specialist he

> > referred me to . What a joke. This guy insisted it

> > was some rare yeast and

> > when none showed up 2wks later, said they would

> > allow more time to grow and

> > none was ever found. SO he told my Dr to have me

> > douche with baking soda, if

> > that didn't work, which it didn't use

> > Cleocin,vaginal suppositories for 2

> > wks, which I just finished doing and it didn't help

> > either. Next step is

> > some steroid cream, I need to call Dr back to get

> > it.

> > In the meantime after seeing the specialist in July,

> > I saw these weird

> > bumps, which I pointed out to him and he said they

> > weren't anything. WRONG!

> > I showed my Dr and he did a biopsy and it came back

> > moderate to severe

> > dyslpasia. I was scared! I had to have a partial

> > vulvectomy 2 wks later, in

> > Sept '01. My dr could not believe it either, he said

> > they just looked like

> > warts. My dr thougth they could have been causing

> > the pain, but it didn't

> > get better after the surgery like I had hoped.

> > Anyways, sorry to get so in depth.

> > Hopefully someone here can help me as my Dr doesn't

> > know what else to do. He

> > mentioned it could be vestibulius, but is sounds

> > more like Vulvodynia since

> > the pain is all the time rather than when touched or

> > during sex.

> > Please let me know of any suggestion.

> > thanks,

> > Melinda

> >

>_________________________________________________________________

> > Chat with friends online, try MSN Messenger:

> > http://messenger.msn.com

> >

>

>__________________________________________________

>

January 13, 2002

Welcome Tracie! I sure wish I would have known about this site when I got home from the hospital! Get ready for a rough couple of weeks, but it does get much better!!!! Tina , Mom to Ethie, 3yrs old on Keto diet since 6/18/01

January 13, 2002

Welcome Tracie and Saje! You will find a great

resource here -- much knowledge and support. Feel

free to ask away when you're ready. I looked back in

our notebook today and realized that our 6-year-old

daughter had her first keto meal one year ago

today. We worked into the diet slowly at home -- so

it took about two weeks to get into ketosis, where

we've been solidly ever since! is off all meds

--which is a huge blessing and her seizures are

greatly reduced, although not 100% controlled. She

still has night seizures about 2-3 times a month.

Working on getting rid of those using some alternative

medicine techniques. Again, welcome!--DeEtte, Mom to

and with one more on the way, sdale, AZ

__________________________________________________

January 13, 2002

Happy keto-anniversary to you

Happy keto-anniversary dear

Happy keto-anniversary to you!!

Love

and

DeEtte Person wrote:

Welcome Tracie and Saje! You will

find a great

resource here -- much knowledge and support. Feel

free to ask away when you're ready. I looked back in

our notebook today and realized that our 6-year-old

daughter had her first keto meal one year ago

today. We worked into the diet slowly at home -- so

it took about two weeks to get into ketosis, where

we've been solidly ever since! is off all meds

--which is a huge blessing and her seizures are

greatly reduced, although not 100% controlled. She

still has night seizures about 2-3 times a month.

Working on getting rid of those using some alternative

medicine techniques. Again, welcome!--DeEtte, Mom to

and with one more on the way, sdale, AZ

January 14, 2002

Hi Carolyn,

We have a little boy called , whose seizures started at 3 yrs, 7 mths,

perfectly okay prior to this. He is now 5, started the diet in Sep'00 with a

lot of success. Drugs had made him worse as well, we are patiently trying to

get him off them, currently he has no day seizures any more,still struggling

with some night ones though.

Your daughter sounds very similar to , he too has a normal background

rhythm on the EEG when not in status or heavily medicated. His diagnosis is

'Myoclonic Astatic Epilepsy of Early Childhood' or Doose Syndrome. He

started with a tonic clonic seizure, then rapidly developed drop attacks and

absences, with myoclonic jerks thrown in for good measure! There is a very

fine line between atypical absences, and 'absences accompanied by myoclonic

twitches', in fact some papers do not differentiate between the two. In

's syndrome, these are most evident when in non convulsive status, the

EEG can give the atypical absence spike and wave, characteristic of Lennox

Gastaut Syndrome. The difference as far as I can make out, is that when not

having seizures, the EEG doesn't have this spike and wave, unlike with LGS.

Has the MAE diagnosis been suggested? May be completely on the wrong track,

but this syndrome does have a reportedly favourable response to the

ketogenic diet (as a lot of others syndromes do as well), touch wood, it has

so far with . He too had periods of more seizures per day than I could

count. Only wish we could have tried the diet sooner, 15 months is a long

time to watch your child go through a seizure nightmare, never mind the AED

complications as well.

Best of luck,

Hill, mother to , 5, , 7, and , 21 mths, in NZ

Introduction

> Hi everyone - my name is Carolyn and I'm new to the group. My 3.5 y/o

daughter, , will be starting the diet at s Hopkins in February,

so I thought I'd introduce us and say that if anyone has any pre-diet

advice, we'd be happy to receive it! A little bit about us: is a

beautiful, intelligent little girl who only had a history of febrile

seizures until September 5th, 2001, 4:15 pm - that is the moment when our

lives changes forever. After a non-febrile clonic seizure, and another 15

minute long one 5 days later, Jess literally developed atypical absence and

atonic head drop seizures overnight. Within a matter of weeks, she was

and still is) having hundreds per day (how in the world does that

happen???) Pheno and Topamax were tried twice, until is was proven that they

actually made her seizures increase in frequency and power. Ditto for

Tranxene (an horrendous experience!) Zarontin did nothing, and now she's

been on Depakote (750 mg) for the past 3 months with only marginal

improvements here and there. Her MRI and CT scan are both normal, and

they've run test after test - tons of blood and urine tests and have come up

with zilch - no diagnosis and no way to stop the seizures. She has no

developmental delays, no loss of skills--in between seizures, she's a

perfectly normal little girl. The more we research, the more terrified we

become with the realization that atypical absences do not typically appear

unless there's damage--can they ever be idiopathic? Hers sometimes have a

bit of myoclonic characteristics, according to her neuro. Her last EEG was

described as " chaotic. " Yet, background rhythm is normal.

>

> We are praying that the diet can give us even a tiny bit of seizure

reduction so that Jess can go back to preschool. Any sucess stories with

head drops and atypical absences?

>

> We also have a beautiful blonde-haired, blue-eyed baby boy, 6 months old,

named Cade, and we pray every day that he will never ever have a single

seizure.

>

> I'm sure you'll be hearing from me as we embark on the diet! Thanks for

listening!

>

> " 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

>

January 15, 2002

Hi Carolyn,

Your story sounds very similar to many of us on this list. We have a son

who just turned 4. Right at his 2nd birthday, we started seeing

what we called head nods. He would just nod his head down for a second and

then come back up. also has normal MRI and CT scan and his EEG

was chaotic. He was diagnosed once with Lennox Gasteau but has had 6 EEGS

since that showed no signs of the Lennox Gasteau. We have tried Depakote,

Topomax, Keppra, Zonegran and Lamictal. We have had moderate control with

the Depakote (went from about 100 day at worst) to 3-4 a day at best.

In November, we tried the keto diet for a 2nd time this year. We went to

Hopkins earlier in 2001 to initiate it. We ran into some problems and

had to discontinue. Anyways, we started the diet again at Lake Forest in

Chicago and we had problems again. gets into ketosis fast and

deep then he gets dehydrated and won't eat. Now, we have him on the Atkins

diet ver restricted version 20 g per day of carbs and 1100 cals and he hasn't

had a seizure in 7 weeks. He is doing great.

Unlike your daughter, had other delays prior to the diet with his

muscle tone low and his speech delayed. He is now developing more rapidly

than ever and won't stop talking.

I really believe that there is a neurological connection with diet and

seizures. I hope you find success as many of us here have.

Any questions-fire away.

from IN

January 15, 2002

Hello Carolyn,

My name is and I have a little girl named Sydney.She is four now.

She too started having seizures out of the blue. She had her first one on

Dec. 1, 2000. From there they just snowballed into a night mare. She was

having aroung 100 head drops and drop seizures a day. She had an EEG that

scared two neurologist into transferring us somwhere else. She saw three

doctors who all said there was nothing they could do for her. " You should

get her a helment and just keep her home " was one suggestion.None of the

meds worked they all made things worse if anything. She had no delays and

still doesnt but we could see that she could not fight through the seizures

for much longer. The docs said she was having abscence seizures every 2

seconds and atonic about every two minutes. We were loosing our little girl

and everyone around us was ready to give up on her.(in the medical field) We

had ask about the diet but always were told it was not for her. They also

said she could not do the diet it would be too hard for a three year old.

That makes me sick to this day. I mean whats harder for a three year old a

thousand seizures a day or a diet change.Well anyway we found a doctor in

houston TX who admitted sydney on the diet. With Gods help and this

wonderful treatment Sydneys seizures stopped instantly. About 24 hours into

the fast we saw her last head nod. Still knowing God is ultimatly incontrol

she is still seizure free four months later. She is back in preschool and

taking ballet. It is so hard to get started on this diet. I wanted to give

up everyday for the first month. If there is anything I can do Email or you

may call me .Email me privatly and Ill give you my telephone number.

kate@...

Praying for you,

( Sydneys mom 4 years old, keto kid 4 months, seizure and med free)

Louisiana