Re: For the Newcomers

[Guest guest]

OK.... I'll start.

I'm Patti.... Katera is my 5 and a half year old daughter with ACC (Agenesis of the Corpus Callosum) and also microcephaly, global dev. delays. Seizure disorder started at 17 days of age with generalized tonic-clonic type seizures. Meds of various kinds either didn't work or made things worse. Went through 4 ped neuros until finding Dr. Schimschock in Portland, Oregon who suggested the diet. Katera started the Keto diet at age 4, 18 months ago. We had weaned all meds several months prior and saw almost immediate control. She has had an occasional seizure with fever since then.... I think six in all.... the last of which was in the first week of December '01 (knocking wood). She is currently on a 2:1 ratio and looking at beginning to wean the diet in August.

I have three older sons by a first marriage..... now 22 (married with one daughter age 2.5 and another baby girl due June 3rd), 19 and 14, youngest of which is the only one still living here with us. In terms of my current husband and I, Katera is our only child. We live in southwest Washington state. I'm home full time.... hubby sells medical gasses and welding supplies and manages the company warehouse.

Patti

PS, I'm also one of the list moderators

For the Newcomers

I wonder if for the sake of the newcomers (like me), if people would be willing to post an introduction about themselves? I try to keep people straight from the posts I read, but I think it would be easier if I had a better picture of who is who. (I know there is and and Jen and Jen and Jenn, some are moms and some are kids!!)Perhaps people could tell who they are, the name, age, and illness of their child, the history of the child's treatments, etc. Any other personal information that people would like to share (other children, location, occupation, etc) would be great! The fuller picture I have, the better my tiny little brain keeps things straight.Thanks for your consideration on this idea. "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]

Patti,

Thanks so much for your reply. Another suggestion I had is that

perhaps people could explain in a nutshell some of the terminology

that others of us may have to look up in a medical encyclopedia!

Thanks.

I'm putting these replys in my Info Select so I can refer back and

keep getting to know people.

I have to say, of all of the groups or bulletin boards I've ever

visited, this is the only that most feels like " one mind. " I

normally like to remain anonymous, but here I feel like we're all in

the same boat and on the same side.

>

[Guest guest]

Hi Patti,

thanks for sharing! I have a question (yet another!) about the weaning.

You said you weaned before you started the diet? I guess I don't quite

understand how that works because the meds are " supposed " to be

helping at least suppress the seizures. If the kids are weaned from them

then I would suspect that we'd see ALOT of seizure activity. I can

understand weaning once the Ketosis takes over but I don't get weaning

before. We asked to wean Conner from some of his meds while he was in the

NICU, because we questioned whether they were working at all, since he

was still having 100's of seizures a day.

Well they picked the perfect time to wean...right after he had

surgery for his g-button, nissen, and trach! They initially did it

because they had no way to give him his meds--he blew out his IV and they

couldn't get another one in.(They were supposed to put in a central line

during the surgery but forgot! )

At the same time they started feeding him three days sooner than he was

supposed to start for the very same reason. Needless to say it was not a

pretty picture. They finally put the meds in through the g-tube

prematurely but it worked, then a few days later attempted to wean

him from the phenobarb. Again not pretty. The whole thing scared us so

bad we have never wanted to try again and I guess I still feel bad that I

wasn't a better advocate for him although I really tried. The hospital

scene early on was just one that was so confusing and we so lost without

any support. Oh well, that is probably many peoples story early on

too.

Anyway, I am rambling. But I guess now where we are is really wanting to

wean him from the phenobarb and the lorezepam. But could it possibly be

realistic to try that before starting the diet? And what could we expect?

It seems from what I have read that the weaning process really is scary.

How do you know that you are truly weaning or just getting into deeper

waters? What is activity caused from the withdrawal versus what is

being shown about actual seizure activity that is just

" underneath " the medication. Do you follow me?

Your feedback (and others) would be appreciated. Hope this isn't too

much.

Thanks!

Maitri

p.s. DO you live near the Tri-cities? I used to live in Kennewick

(-:

At 03:13 PM 4/12/02 -0700, you wrote:

OK.... I'll start.

I'm Patti.... Katera is my 5 and a half year

old daughter with ACC (Agenesis of the Corpus Callosum) and also

microcephaly, global dev. delays. Seizure disorder started at 17 days of

age with generalized tonic-clonic type seizures. Meds of various kinds

either didn't work or made things worse. Went through 4 ped neuros until

finding Dr. Schimschock in Portland, Oregon who suggested the diet.

Katera started the Keto diet at age 4, 18 months ago. We had weaned all

meds several months prior and saw almost immediate control. She has had

an occasional seizure with fever since then.... I think six in all....

the last of which was in the first week of December '01 (knocking wood).

She is currently on a 2:1 ratio and looking at beginning to wean the diet

in August.

I have three older sons by a first

marriage..... now 22 (married with one daughter age 2.5 and another baby

girl due June 3rd), 19 and 14, youngest of which is the only one still

living here with us. In terms of my current husband and I, Katera is our

only child. We live in southwest Washington state. I'm home full time....

hubby sells medical gasses and welding supplies and manages the company

warehouse.

Patti

PS, I'm also one of the list moderators

For the Newcomers

I wonder if for the sake of the newcomers (like me), if people would be willing to post an introduction about themselves? I try to keep people straight from the posts I read, but I think it would be easier if I had a better picture of who is who. (I know there is and and Jen and Jen and Jenn, some are moms and some are kids!!)

Perhaps people could tell who they are, the name, age, and illness of their child, the history of the child's treatments, etc. Any other personal information that people would like to share (other children, location, occupation, etc) would be great! The fuller picture I have, the better my tiny little brain keeps things straight.

Thanks for your consideration on this idea.

" 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]

There's not a lot of consensus on this, but there are

some that feel that the meds actually exacerbate

seizures. There's also the reality that when the meds

aren't working, it doesn't necessarily mean you'd see

more seizures off them (in other words, if you have 10

seizures/day while on a med, it doesn't necessarily

equate that you'll have 100/day off them -- make

sense?) It's all individual, as is everything with

our kids. I'm pretty sure that Tegretol and Lamictal

increased seizures for our daughter -- Lamictal

brought on night terrors and night seizures. . .the

night seizures are still with us although not nearly

as frequent. As for telling the difference between

withdrawl and typical seizures -- that's a tough call.

For , the intensity was a little less and they

came at atypical times. I'm sure you'll get a lot of

responses on this one. . .if not, you may want to

repost with a new subject line. Good luck!--D

--- " Maitri (Conner)hisler "

wrote:

> about the weaning. You

> said you weaned before you started the diet? I guess

> I don't quite

> understand how that works because the meds are

> " supposed " to be helping at

> least suppress the seizures. If the kids are weaned

> from them then I would

> suspect that we'd see ALOT of seizure activity. I

__________________________________________________

[Guest guest]

Okay. . .here goes. . .

My name is DeEtte. My husband, Larry, and I live in

sdale, Arizona, with our two daughters, (7)

and (5) and have one on the way due mid-July.

has been on the diet since January 2001. Her

seizures are greatly reduced and she is med-free. She

tends to have night seizures every couple weeks --

although, as I posted earlier this week, she did have

a bad seizure on Monday -- likely from adding an oil

she's apparently sensitive to (black currant) and a

virus. Much of our success has been due to the diet,

but also to some other things we've done, most notably

homeopathy, digestive enzymes and Melatonin (although

I'm still a bit uncomfortable giving this to her).

She has always been slightly delayed - meeting

milestones on the outskirts of " normal. " She was the

healthiest child anyone had ever seen -- great eating

habits, no ear infections, rarely went to the ped,

except for well checks. We did start speech and OT

when she was 2 and when she was 3, we started an

auditory integration program using the Tomatis method

(Mozart on headphones, essentially). She was doing

very well and things looked quite promising (still do

-- it's just a lot has happened!).

When she was nearly 4, she got a virus and had her

first two seizures. She was put on Tegretol -- which

started the med merry-go-round we all know too well.

Her personality changed and she began having throwing

up episodes a few times a week. Still, she was

seizure-free until two weeks after her Hep A

vaccination. Then the nightmare really began and got

worse as they upped her meds. She ended up going

status and in the ICU -- the took her off Tegretol

cold-turkey because she was toxic and over the course

of that summer we tried three different meds -- all

with their corresponding horrible side effects. We

finally decided " enough " and began the diet. It's

been difficult, but she's a real trooper.

is in Kindergarten in a charter Montessori school

-- mainstream with OT and speech services. She had to

repeat Kindergarten because last year was such a haze

of seizures and meds. She's doing well -- still

behind -- but moving forward -- which is better than

standing still or moving backwards!

Now. . . . . . have you posted your story? :-)

__________________________________________________

[Guest guest]

Sorry to butt in here but if you decide to wean phenobarb - it is my

experience with my son that you should go very very very slowly. We had

problems and had to stop the wean - didnt have to go back up but couldnt

go down any further either - that was last summer. We are going to try

again after the dilantin is gone.

Jenn

" Maitri (Conner)hisler " wrote:

[Guest guest]

, Hannah is the youngest of our 4 children. Appeared to have no

health issues till age 3.5 she began falling out of the blue. I am

going to make this short and sweet. Her seizures come in clusters.

She will be absolutely " normal " for weeks and then a seizure cluster

will come (all atonic seizures) and that cluster can last between 2 -

4 weeks. When in a cluster she gets so bad that she cannot toilet,

bathe, eat at times, walk, etc. without constant help. After two

misdiagnosis and 9 mths of tests we fought our HMO insurance co and

got Hannah out to Cleveland Clinic. After one full year, she was

finally properly diagnosed and put on AED's (anti-epileptic )

depakote, lamictal and now trileptal. The did not stop the

seizure clusters so after another 11 mths. went by we said enough is

enough and we want to do the diet. (Mentioned it 6 mths earlier and

the dr. told us it was easier to give her a pill! Like an idiot we

said okay). Anyway, started the diet Jan 01, Hannah was 5.5 yrs. old.

She was seizure free for 8 months and then got a bowel impaction

which i believe brought on a two-week seizure cluster and had a mini-

cluster in Nov. We are now reducing her trileptal (the only she

is still on) and consider the diet a Godsend and a big SUCCESS!! Gail

[Guest guest]

My name is ! My hubby is Lloyd and I have 2 boys, CHristopher,4 and

,. 18 mos. We live in Indianapolis, IN.

was diagnosed with mild CP at 9 mos b/c he wasn't sitting and had

low tone. We suspected seizures from early on but weren't sure. He was a

little behind but not very far until he hit 2. At age 2, he just kinda stood

still. Getting him to develop past 2 has been difficult. He is now 4 in a

2-3 year old body. At 2, we noticed these head nods he was doing and I

started noticing them becoming more frequent. I would look in the rear view

mirror and see them or we'd be outside swinging or swimming and I'd see them.

I was pregnant at the time-it was the worst summer ever. Well, we started

video taping them and took them to the neuro. He said definately seizures

and ordered a 23 hr EEG. Well, he had like 3 of them in the hospital and

they said he had Lennox Gasteau and we about died. It is the most terrible

syndrome. It is progressive. I was told that he would get worse, get

severly retarded etc. We were devastated. We then had status for 3 days

(which we got no diastat for) and he ended up in the ER. We increased his

depakote to 6 125 mg per day and he ended up anorexia. Lost 14 pounds. So

we cut that back and added Topomax which made him a zombi, couldn't walk etc.

He was in a comatose state. I was 8 mos pregnant and we went to see a dev.

ped and he called our neuro and said ,what are you doing to this kid. So, he

cut that back and added Keppra, no luck, Zonegran, no luck, Lamictal, no

luck. We kept begging to do keto and our neuro said no that it was only for

gtube kids. Finally, we kept calling JHopkins and they took and

said he didn't have Lennox Gasteua and we put him on the diet (bad experience

there). Well, he got dehydrated from the anoriexia with depakote which got

worse so we had to pull him off. We did it again in Chicago 9 mos later and

he got anorexic again so we pulled him off. We gradually changed his diet

like the Atkins diet and he has been seizure free 99% except for a few food

incidents.

We are weaning depakote. We are down to 1 am 1 pm and on carnosine. He is

doing well but still struggling with behavior and moods. Attention is

better. All in all, better but still trying to get to the next level which

is happy child and less irritable.

Thats all. My other kiddo is perfectly fine, no problems and no vaccines

yet.

from IN

[Guest guest]

, if there's any term you want a definition for, just ask.... which ones have you stumped?

Patti

Re: For the Newcomers

Patti,Thanks so much for your reply. Another suggestion I had is that perhaps people could explain in a nutshell some of the terminology that others of us may have to look up in a medical encyclopedia! Thanks.

[Guest guest]

We also found out that when weaned the Phenobarbital that it is best to go

very slowly. Our daughter, , was on liquid Phenobarbital and found it

was best when we took away 1ml per week. We started off weaning 3ml every

four days, but we had withdrawal seizures. We kept taking away smaller

amounts and increasing the days between drops until we did not have a

withdrawal seizure.

Dan, father to , 4yrs, seizure free and med free

Re: For the Newcomers

Sorry to butt in here but if you decide to wean phenobarb - it is my

experience with my son that you should go very very very slowly. We had

problems and had to stop the wean - didnt have to go back up but couldnt

go down any further either - that was last summer. We are going to try

again after the dilantin is gone.

Jenn

" Maitri (Conner)hisler " wrote:

" 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 forgot to add that Rebekah was diagnosed as having cerebral palsy at about the age of 3...she is not spastic instead she is very hypotonal. LaVerna

For the Newcomers

My name is LaVerna, mom to ketokid(since July 01) Rebekah(7) and (14...an awesome sister....a big help). Both our children are adopted. We live in Regina, Sask.......one of the few Canadians.......my husband works as a computer technician at a Bible College and I am a full time Special Ed. teacher.

Rebekah was five weeks old when we got her....at that time she had been having 'breath holding' spells which we later discovered were hardly that...after a second EEG we knew she had seizure disorder due to brain injury, the conotations of which we would only knew as she grew older. At that time she began Depakene which later changed to Depakote which was easier for her stomach. She was developmentally delayed but mastered each stage, walking by age 2 but was weak and had difficulty with balance. Language was also delayed but she was making progress. When she was four she began having real difficulty with falling, a few months later we discovered she was having invisible seizures. She would be standing and baking with me and she'd just fall off of her stool for no reason. Shortly after we found this out, having decided to go on a drug study "Topirimate", she got chicken pox which landed her in the hospital with complications...a severe ear infection and mono.....she was just home from hospital recuperating about three weeks later, she was back on her feet, tottering around walking along furniture, trying to regain her independence when she fell leaving the supper table. We discovered several days later that she must have cracked her fimur during this fall, after seizures two days after one another she pulled her fimur right apart(we were told she had osteoporosis due to anticonvulsants and the immobility she had expereinced the previous few months).....in hospital, casted, sent home, seizured again due to constipation, back in hospital recasted because she had bent the screws....this time a body cast to prevent this happening again...she was immobilite for 11 weeks.....a nightmare...it was horrible. When the cast came off(she had started Topiramate while in cast) she could do NOTHING.....she just lay on the floor immobile.......we thought it was due to being casted for so long........several months later after trying to get her off of this drug......trying other drugs which caused more problems we demanded she be taken off of it cold turkey and back to depakote. Within a month off of this horrible drug she began to regain skills she had lost....she went from only being able to roll to sitting independently...her language started coming back....it was a flower blooming.....like Spring after a long Winter. Another year passed and we still didn't see the Rebekah we knew before the break so we began asking about the diet. Her seizures were in control but we wanted to see what a difference being off the meds would make for Rebekah, especially physically. We wanted to give her this chance to get back on her feet and walk again. We realized it was risky because of the osteoporosis but our neurologist assured us that with less meds she would be physically stronger and able to do the weight bearing so critical for building bone density. Rebekah has done incredibly well.....after three opinions from orthopedic specialists we decided to have the screws out of her hip this past January...unfortunately the surgeon who did it didn't do another xray beforehand...if he had he would have seen that her bones have not improved and the screws shouldn't have been taken out.......three weeks ago Rebekah broke the same hip and we also found out that the other hip is in worse condition...both had to be pinned. After the surgery in January the Dr. reassured us that it was fine for Rebekah to be back in her walker the next day....which we did but her bones were not able to withstand the activity......BUT Rebekah is doing very well....she is still in pain..today we took her for a walk in her wagon and tonight we will pay for that bumpy ride.....but because of the diet and being on half of the meds we started with last July....she is doing amazingly well. We are hoping to get her in for another bone density test soon and also see an endrocologist. I am so thankful for the help I have received from so many of you online....thank you and God bless you and your precious children!!!!!!!!!!

LaVerna "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]

Good luck tomorrow!

I'd likely say it's no coincidence that his decline

started after all those vaccines in one day. . . I

don't know why our society has us so programmed that

we have to doubt something like that. Sounds like

you're prette well connected out here in cyberspace --

I imagine you know that there's much you can do in the

name of reversing vaccine injury. In fact, I think on

the epilepsycured list someone posted a female doc in

New York who specializes in this. . .I might have that

info saved somewhere.

But. . .one thing at a time. Tomorrow you embark on a

new adventure. . .one with a lot of promise.

Do you have the meal planner downloaded? You don't

need to be scientifically or mathmatically oriented at

all -- it's very, very easy.

Keep us posted on how he does. Take care!-D

__________________________________________________

[Guest guest]

Do you vaccinate your children?

[Guest guest]

Thanks DeEtte!

I'd love to have the name of that doc in New York who specializes in reversing vaccine injury, if you still have it.

I do have the meal planner downloaded. With all that's happening, I just haven't had a chance to look at it yet -- much less figure it out.

I didn't know there was an epilepsy cured list. How great! How do you access it? THanks again, will keep you posted, Jane

-----Original Message-----From: sentto-467350-12025-1018847475-janepraeger=compuserve.com@... [mailto:sentto-467350-12025-1018847475-janepraeger=compuserve.com@...]On Behalf Of DeEtte PersonSent: Monday, April 15, 2002 1:11 AMTo: ketogenic Subject: RE: For the NewcomersGood luck tomorrow! I'd likely say it's no coincidence that his declinestarted after all those vaccines in one day. . . Idon't know why our society has us so programmed thatwe have to doubt something like that. Sounds likeyou're prette well connected out here in cyberspace --I imagine you know that there's much you can do in thename of reversing vaccine injury. In fact, I think onthe epilepsycured list someone posted a female doc inNew York who specializes in this. . .I might have thatinfo saved somewhere.But. . .one thing at a time. Tomorrow you embark on anew adventure. . .one with a lot of promise.Do you have the meal planner downloaded? You don'tneed to be scientifically or mathmatically oriented atall -- it's very, very easy.Keep us posted on how he does. Take care!-D__________________________________________________

[Guest guest]

,

Is this question for anyone in particular, or a general question?

> Do you vaccinate your children?

>

[Guest guest]

DeEtte,

Is there really a way to reverse a vaccine injury?

My son reacted to his 4 and 6 month immunization shot and has suffered seizures ever since.He has been on the diet for almost 2 years and it has helped but not completely.

Please if you have the name of that doctor that would be great. I live in Canada but if there is a way to help my son. I would do anything.

Thanks Kathy

you may e-mail me direct at klpasay@...

Is there hope after all for vaccine damaged kids? God I hope so.

RE: For the Newcomers

Good luck tomorrow! I'd likely say it's no coincidence that his declinestarted after all those vaccines in one day. . . Idon't know why our society has us so programmed thatwe have to doubt something like that. Sounds likeyou're prette well connected out here in cyberspace --I imagine you know that there's much you can do in thename of reversing vaccine injury. In fact, I think onthe epilepsycured list someone posted a female doc inNew York who specializes in this. . .I might have thatinfo saved somewhere.But. . .one thing at a time. Tomorrow you embark on anew adventure. . .one with a lot of promise.Do you have the meal planner downloaded? You don'tneed to be scientifically or mathmatically oriented atall -- it's very, very easy.Keep us posted on how he does. Take care!-D__________________________________________________