Re: Intro and advice requested

[Guest guest]

.. I was wondering if anyone on the list made the decision to just try the diet to avoid medicine completely, or just turned to the diet because medicines weren't working or the side effects of the medicines were too great.

I didn't but sure wish I did!

Elaine

[Guest guest]

,

I know there are MANY of us who wish we had had the opportunity to try the diet first. Of course, meds may work fine for many kids..... obviously, those of us who now have Keto Kids are mostly those whose kids did NOT do well on them. I don't think many docs out there offer the diet as a first choice but I sure think they should. Most meds do have side effects, but it's hard to know how your child will be affected. How supportive of the diet is your neuro?? That would be a major factor. Starting the diet med free would sure be optimal. We had bad experiences (and no control) with two different meds with our daughter (now almost 5 yrs old.... seizures started shortly after birth) but were fortunate to have had the opportunity to wean her from all drugs (keeping emergency meds on hand at all times, in case one of her generalized seizures went status) and started the diet after she had been med-free for six months. We had almost instant success on the diet. In ten months time, she has had only four seizures.... only with fever.... only one at a time..... usually short and mild.... and have only used emergency meds once. She has now been seizure free since May and has run one fever since then with no seizures. I am sure there are a number of parents on this list who really, really wish they could have started the diet under the same conditions we did..... and had not had to wean medications while on the diet. The combination of doing both can be a real challenge. If I were you..... and if you are ready to make a big commitment to give this a good six months and stick with us, 'cause you will learn a tremendous amount about fine-tuning the diet..... I would fight tooth and nail to try the diet first. If your neuro is not supportive, I would try to find one that is. The drugs will always be there. This diet is a lot of work but it's a PICNIC compared to the experiences we had with seizure drugs.

Patti, mom to Katera (partial ACC, microcephaly, global delays), Keto Kid since 10-10-2000.

Intro and advice requested

Hi -

I'm new here, and most likely the most ignorant on the list! My soon-to-be 3 year old son was just diagnosed with having seizures. We weren't even sure he was really having them. Sometimes he just stares, and we weren't sure if he was daydreaming or if it was a seizure. The episodes don't seem to happen very often, and just for a few seconds. The EEG did display seizure activity (widespread, not partial) both asleep and awake. He also had a minor abnormality in white matter on his brain MRI. This was possibly due to a minor brain bleed before/during/shortly after birth. He was born a month early and small, just over 3 1/2 pounds.

We're now being advised by the pediatric neurologist to start on valporic acid (depakoate) due to the EEG results. I was wondering if anyone on the list made the decision to just try the diet to avoid medicine completely, or just turned to the diet because medicines weren't working or the side effects of the medicines were too great.

I know many of you are dealing with greater seizure disorders and other health problems than we are facing; my son's seem quite mild at this point. However, I just want to be very cautious and make sure we are doing the right thing ... we lost his baby brother last November shortly after birth (complications from a serious heart defect), so we take nothing lightly.

Thanks so much for any advice.

Mom to Josh and angel "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 am so sorry to hear that you have lost a child.

Remember that everything has side-effects, including the diet. If we could have found a medication that worked for , we would have been thrilled. We tried all of the medications our doctor suggested, but none of them worked. Some of them worsened the seizures. We did not know that was having seizures until he had a major one when he was four. 's seizures are a result of problems at his birth.

At times I wish we had tried the diet right away instead of wasting time on the medications. But what if one of them had worked?! The diet has worked wonderfully for , but the price is that he is always tired, he can't eat the same things as the other children so he feels different, it is difficult for us to always be fixing meals ahead of time (his father and I both work full time), it has affected his lipids, and the list goes on. It is worth it to us because we know that right now it is the only thing that works. If we heard of a new medication today that would definitely control his seizures without too many devastating side-effects, we would be off the diet and on medication in a heart beat! And that is from a mom who has adjusted well to the diet, and whose son is doing well. I just know how much happier he would be if he could still be healthy and off the diet.

also does not have as many challenges as some of the kids on this list. What I have learned is that it doesn't help to compare our situations. How can any of us compare grief and fear and hope and despair. All we can do is support each other.

Intro and advice requested

Hi -

I'm new here, and most likely the most ignorant on the list! My soon-to-be 3 year old son was just diagnosed with having seizures. We weren't even sure he was really having them. Sometimes he just stares, and we weren't sure if he was daydreaming or if it was a seizure. The episodes don't seem to happen very often, and just for a few seconds. The EEG did display seizure activity (widespread, not partial) both asleep and awake. He also had a minor abnormality in white matter on his brain MRI. This was possibly due to a minor brain bleed before/during/shortly after birth. He was born a month early and small, just over 3 1/2 pounds.

We're now being advised by the pediatric neurologist to start on valporic acid (depakoate) due to the EEG results. I was wondering if anyone on the list made the decision to just try the diet to avoid medicine completely, or just turned to the diet because medicines weren't working or the side effects of the medicines were too great.

I know many of you are dealing with greater seizure disorders and other health problems than we are facing; my son's seem quite mild at this point. However, I just want to be very cautious and make sure we are doing the right thing ... we lost his baby brother last November shortly after birth (complications from a serious heart defect), so we take nothing lightly.

Thanks so much for any advice.

Mom to Josh and angel "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]

-- Welcome to the list. So very sorry to hear

about your loss -- I'm sure it makes Josh's life all

the more precious.

We tried four AEDs before finally demanding the diet.

All of them had horrible side effects -- although, as

I've learned on this list, all children are different

in their reaction to the meds. It's likely your son

would have some side effects but tough to determine

what they would be.

Looking back, I was always told the diet was way too

difficult and that it was a last resort. After two

and a half years (the last six on the diet and the

last six weeks med free) I can tell you I wish I would

have tried it much earlier. It's not easy --

especially since my daughter is not seizure free.

But, her seizures are far better controlled than they

ever were on meds and we get more and more hope every

day and more hopeful signs that our little girl is

coming back.

The meds turned my very calm, focused little girl into

a restless, sometimes agressive child with almost

animalistic tendencies. Tegretol made her very sad,

almost like she was pushing the world away. Depakote

made her throw up all the time and very disoriented.

Topomax rendered her to almost an infantile state.

And, Lamictal made her aggressive and restless. I say

this not to scare you, but just to give you an idea of

the types of things that can happen. In each case,

our neuro told me these things were not side effects.

Best of luck with your decision and please know that

there is a lot of knowledge on this list -- the

biggest thing you'll learn is that you can have

control -- you can make decisions to do the best

possible for your son. . .but you need to trust your

gut first and foremost. Take care and keep us posted.--D

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. "

__________________________________________________

[Guest guest]

Thank you to everyone who has responded ... I know so little about the diet, but also worry about the drugs. My guys is just so sweet, polite and mild mannered. He loves to sit and read books, loves to 'help' me with just about everything. I'd just hate to see his personality or learning ability affected by drugs. I've left my job as a software engineer to be a SAHM, so I have the advantage of being around all the time. I think that would help with the diet - more time to prepare food and observe him. I've requested some books (one of which is the Freeman book - is this the best one?) from interlibrary loan to read more; hope they are in soon.

I don't know at this point if the neurologist is open to trying keto or not (am I getting the lingo right?). Actually, we've only seen him once so far. I think he's a resident. Our hometown clinic happens to be Mayo Clinic. It's a great place, but since it's a teaching institution as well, there are lots of residents around. I want to read all I can in the next couple of days and bounce this idea off of the neurologist and pediatrician.

Do you guys think he's need to be hospitilized to start the diet if we're not weaning off meds? Just so many questions and so much to learn. I wish there was an obvious 'right' decision.

Rob & Bestgen

[Guest guest]

> In each case,

> our neuro told me these things were not side effects.

>

DeEtte:

I'm interested in this statement you made.

Please bear with me, as I usually just lurk here. We have not tried

the KGD yet, but instead are implementing other nutritional

strategies first, still seeing the KGD as something we can try

later.

Did your neuro tell you the behavioral, psychological, and

physiological changes you observed were due to the seizures

themselves? Did he just deny that the drugs were responsible without

giving you an alternative explanation?

Our biggest problem with the mainstream neurologists and

epileptologists we have been involved with is that they just seem to

be way too willing to say, " ...I'm sorry; we just don't know... " .

This creates what is perhaps a catch-22 for them in relating to me,

or a parent like me. I want honesty from the docs. If they don't

know, I want them to tell me they don't know. BUT, [...and this is a

very big but... :_)] I also DON'T want to hear " I don't know... " as a

copout, or as a terminal diagnosis. " I don't know... " should be

accompanied by an attitude reflecting a zeal to learn more; its not

an answer to EVER be satisfied with.

Tim

[Guest guest]

> In each case,

> our neuro told me these things were not side effects.

>

DeEtte:

I'm interested in this statement you made.

Please bear with me, as I usually just lurk here. We have not tried

the KGD yet, but instead are implementing other nutritional

strategies first, still seeing the KGD as something we can try

later.

Did your neuro tell you the behavioral, psychological, and

physiological changes you observed were due to the seizures

themselves? Did he just deny that the drugs were responsible without

giving you an alternative explanation?

Our biggest problem with the mainstream neurologists and

epileptologists we have been involved with is that they just seem to

be way too willing to say, " ...I'm sorry; we just don't know... " .

This creates what is perhaps a catch-22 for them in relating to me,

or a parent like me. I want honesty from the docs. If they don't

know, I want them to tell me they don't know. BUT, [...and this is a

very big but... :_)] I also DON'T want to hear " I don't know... " as a

copout, or as a terminal diagnosis. " I don't know... " should be

accompanied by an attitude reflecting a zeal to learn more; its not

an answer to EVER be satisfied with.

Tim

[Guest guest]

> In each case,

> our neuro told me these things were not side effects.

>

DeEtte:

I'm interested in this statement you made.

Please bear with me, as I usually just lurk here. We have not tried

the KGD yet, but instead are implementing other nutritional

strategies first, still seeing the KGD as something we can try

later.

Did your neuro tell you the behavioral, psychological, and

physiological changes you observed were due to the seizures

themselves? Did he just deny that the drugs were responsible without

giving you an alternative explanation?

Our biggest problem with the mainstream neurologists and

epileptologists we have been involved with is that they just seem to

be way too willing to say, " ...I'm sorry; we just don't know... " .

This creates what is perhaps a catch-22 for them in relating to me,

or a parent like me. I want honesty from the docs. If they don't

know, I want them to tell me they don't know. BUT, [...and this is a

very big but... :_)] I also DON'T want to hear " I don't know... " as a

copout, or as a terminal diagnosis. " I don't know... " should be

accompanied by an attitude reflecting a zeal to learn more; its not

an answer to EVER be satisfied with.

Tim

[Guest guest]

> Our hometown clinic happens to be Mayo Clinic.

Dr. Gumnit at MINCEP is supposed to be one of the best, and I

believe he is a hearty supporter of the KGD. You may try contacting

him. He was very helpful to me in locating level IV Comprehensive

Epilepsy Centers. He has served as president of the NAEC (Nat'l

Assoc. of Epilepsy Centers), the organization which wrote the CEC

rating guidelines. He has also authored and co-authored a couple of

books on epilepsy.

Here is the contact info I received from an email inquiry. I did

speak with both he and his assistant per phone. They are quite

accomodating.

*****************************************************************

" ...he does not correspond by email. Would you please give me (his

assistant) a call and I will set up a phone conference between you

and Dr. Gumnit at a convenient time for both of you. I can be

reached at . "

Vernice Sequira

Assistant to Dr. Gumnit

MINCEP Epilepsy Care

5775 Wayzata Boulevard

St. Louis Park, MN 55416

[Guest guest]

Dear :

I am so sorry for the loss of your son.

The diet has been a miracle for Rosemary after trying 5 different drugs

alone and in combination. The only thing I wish I had known was that if the

first drug doesn't work for you, there is only a 15% chance that any drug

will, no matter what it is. There is a 65% chance the diet will work for

you. i would never have gone beyond the first failed drug if I'd known.

Good luck with your decision.

mom to Rose ketokid 8/00

[Guest guest]

,

Some of the side effects from the medication for changed his personality. With tegretol he had rage seizures. With depakote he had difficulty focusing and was lethargic. The others increased his seizures as soon as we started them.

Before the seizures was a loving, cooperative little boy who loved to run and play and read books with me, help cook, and who talked and laughed with everyone. He was a very patient child. That changed with the medications. Now that he is on the diet, we have our child back. There have been changes and he has now been diagnosed with learning disabilities. I think that some of them were probably there before the recognized seizures, and were the result of the problems at his birth. Some of the LD's were definitly caused by the seizures themselves. I can only wonder if some werre caused by his severe reactions to some of the medications. But now, has the same personality that he had when he was three!

The diet can be great. For some kids, the medications can be great. There is not a right or wrong answer in this. The good thing about the diet is that the parent is more in control. Of course, for us it has also meant many more doctors to treat the side effects of the diet. I worry about keeping on the diet long term. He has lost so much muscle tone, which two dieticians and his neurologist and his lipids disorder specialist and his occupational therapist are all working on.

Go into this with your eyes open. Yes, the meds have side effects, but so does the diet. Seeing fail on the meds has helped us to be completely compliant with the diet. Because knows what it feels like not to do well, he knows how improved he is on the diet. In 15 months, he has not once cheated on the diet! is now eight years old and is in a regular fourth grade classroom.

I'm off for vacation for a week now with all four kids and my husband! Yeah! Five days on the Oregon coast!

Re: Intro and advice requested

Thank you to everyone who has responded ... I know so little about the diet, but also worry about the drugs. My guys is just so sweet, polite and mild mannered. He loves to sit and read books, loves to 'help' me with just about everything. I'd just hate to see his personality or learning ability affected by drugs. I've left my job as a software engineer to be a SAHM, so I have the advantage of being around all the time. I think that would help with the diet - more time to prepare food and observe him. I've requested some books (one of which is the Freeman book - is this the best one?) from interlibrary loan to read more; hope they are in soon.

I don't know at this point if the neurologist is open to trying keto or not (am I getting the lingo right?). Actually, we've only seen him once so far. I think he's a resident. Our hometown clinic happens to be Mayo Clinic. It's a great place, but since it's a teaching institution as well, there are lots of residents around. I want to read all I can in the next couple of days and bounce this idea off of the neurologist and pediatrician.

Do you guys think he's need to be hospitilized to start the diet if we're not weaning off meds? Just so many questions and so much to learn. I wish there was an obvious 'right' decision.

Rob & Bestgen "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]

,

Some of the side effects from the medication for changed his personality. With tegretol he had rage seizures. With depakote he had difficulty focusing and was lethargic. The others increased his seizures as soon as we started them.

Before the seizures was a loving, cooperative little boy who loved to run and play and read books with me, help cook, and who talked and laughed with everyone. He was a very patient child. That changed with the medications. Now that he is on the diet, we have our child back. There have been changes and he has now been diagnosed with learning disabilities. I think that some of them were probably there before the recognized seizures, and were the result of the problems at his birth. Some of the LD's were definitly caused by the seizures themselves. I can only wonder if some werre caused by his severe reactions to some of the medications. But now, has the same personality that he had when he was three!

The diet can be great. For some kids, the medications can be great. There is not a right or wrong answer in this. The good thing about the diet is that the parent is more in control. Of course, for us it has also meant many more doctors to treat the side effects of the diet. I worry about keeping on the diet long term. He has lost so much muscle tone, which two dieticians and his neurologist and his lipids disorder specialist and his occupational therapist are all working on.

Go into this with your eyes open. Yes, the meds have side effects, but so does the diet. Seeing fail on the meds has helped us to be completely compliant with the diet. Because knows what it feels like not to do well, he knows how improved he is on the diet. In 15 months, he has not once cheated on the diet! is now eight years old and is in a regular fourth grade classroom.

I'm off for vacation for a week now with all four kids and my husband! Yeah! Five days on the Oregon coast!

Re: Intro and advice requested

Thank you to everyone who has responded ... I know so little about the diet, but also worry about the drugs. My guys is just so sweet, polite and mild mannered. He loves to sit and read books, loves to 'help' me with just about everything. I'd just hate to see his personality or learning ability affected by drugs. I've left my job as a software engineer to be a SAHM, so I have the advantage of being around all the time. I think that would help with the diet - more time to prepare food and observe him. I've requested some books (one of which is the Freeman book - is this the best one?) from interlibrary loan to read more; hope they are in soon.

I don't know at this point if the neurologist is open to trying keto or not (am I getting the lingo right?). Actually, we've only seen him once so far. I think he's a resident. Our hometown clinic happens to be Mayo Clinic. It's a great place, but since it's a teaching institution as well, there are lots of residents around. I want to read all I can in the next couple of days and bounce this idea off of the neurologist and pediatrician.

Do you guys think he's need to be hospitilized to start the diet if we're not weaning off meds? Just so many questions and so much to learn. I wish there was an obvious 'right' decision.

Rob & Bestgen "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]

,

Some of the side effects from the medication for changed his personality. With tegretol he had rage seizures. With depakote he had difficulty focusing and was lethargic. The others increased his seizures as soon as we started them.

Before the seizures was a loving, cooperative little boy who loved to run and play and read books with me, help cook, and who talked and laughed with everyone. He was a very patient child. That changed with the medications. Now that he is on the diet, we have our child back. There have been changes and he has now been diagnosed with learning disabilities. I think that some of them were probably there before the recognized seizures, and were the result of the problems at his birth. Some of the LD's were definitly caused by the seizures themselves. I can only wonder if some werre caused by his severe reactions to some of the medications. But now, has the same personality that he had when he was three!

The diet can be great. For some kids, the medications can be great. There is not a right or wrong answer in this. The good thing about the diet is that the parent is more in control. Of course, for us it has also meant many more doctors to treat the side effects of the diet. I worry about keeping on the diet long term. He has lost so much muscle tone, which two dieticians and his neurologist and his lipids disorder specialist and his occupational therapist are all working on.

Go into this with your eyes open. Yes, the meds have side effects, but so does the diet. Seeing fail on the meds has helped us to be completely compliant with the diet. Because knows what it feels like not to do well, he knows how improved he is on the diet. In 15 months, he has not once cheated on the diet! is now eight years old and is in a regular fourth grade classroom.

I'm off for vacation for a week now with all four kids and my husband! Yeah! Five days on the Oregon coast!

Re: Intro and advice requested

Thank you to everyone who has responded ... I know so little about the diet, but also worry about the drugs. My guys is just so sweet, polite and mild mannered. He loves to sit and read books, loves to 'help' me with just about everything. I'd just hate to see his personality or learning ability affected by drugs. I've left my job as a software engineer to be a SAHM, so I have the advantage of being around all the time. I think that would help with the diet - more time to prepare food and observe him. I've requested some books (one of which is the Freeman book - is this the best one?) from interlibrary loan to read more; hope they are in soon.

I don't know at this point if the neurologist is open to trying keto or not (am I getting the lingo right?). Actually, we've only seen him once so far. I think he's a resident. Our hometown clinic happens to be Mayo Clinic. It's a great place, but since it's a teaching institution as well, there are lots of residents around. I want to read all I can in the next couple of days and bounce this idea off of the neurologist and pediatrician.

Do you guys think he's need to be hospitilized to start the diet if we're not weaning off meds? Just so many questions and so much to learn. I wish there was an obvious 'right' decision.

Rob & Bestgen "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]

If I had it all to do over again I believe I would try one drug. If it wasn't

successful

(or the side effects were too bad), then I would go to the diet. In one sense I

am a

little suprised to see myself writing this because I am a huge diet advocate and

when it

works it truly is a gift from God, but bottom line is it still is much easier

both for

the child and the family to pop a pill.

But beware the trap of this one doesn't work so we will try another one, and

another one

and maybe if we add this one to the first one they will work together......four

years and

six drugs later we had not put the slightest dent in the seizures and I had a

child who

went from being a " normal little girl " at age 1 to the label of " behaviour

disorder " , who

was more like an animal than a child when we registered her for Grade Primary.

Once the

drugs disappeared, the label disappeared. We still have behaviour issues but

nothing like

we use to.

I also think you would have incredible trouble finding a doc willing to do the

diet

without having tried the drugs. Not saying it can't be done, just be prepared

for a

battle. I think they would tell you that you have to do at least two drugs (and

they

would want you to do a lot more) before they would even consider it. But that

being said

you are the parents and you are the bosses. Always remember that

All the best

, mom of (8), ketokid since 2/98

myketokid@... wrote:

> ,

> You described yourself as the " most ignorant on the list " but I am

SUPER

> impressed that you have the foresight to look into the diet as a first

> option. When was first diagnosed, I took him to the doc " to get

> some medicine to stop the seizures. " I had NO IDEA that there were

> options. Well, after 3 years and 8 medicines, we found ourselves studing

> this " crazy sounding " diet. The seizures medicines do have side effects.

> I work at a pharmacy & have told hundreds of people that when they read

> medicine inserts (on the stock bottles) that they have to read them " with

> a grain of salt " because any of them could scare you to death. WELL,

> I've learned in a BIG way to take them seriously. It seems as if

> experienced all the bad side effects of all the medicines. We watched

> our happy child slip into a trap of medicine. Oh, how I wish I could

> roll back the clock and try the diet first. I can't imagine how more

> advanced developmentally he would be today. If it sounds like I'm a

> " diet pusher " it is because it has been a miracle for us. From one

> mother to another, you'll not regret trying the diet. If you try the

> diet, remember, the pills will always be there waiting. If my healthy 3

> year old had a seizure today, she would start the diet tomorrow & the

> drugs would be last resort.

> The Freeman book is where I started my research. Hang around our list

> also. Sure, some of it will be Greek at first, but you will learn TONS!

> I still learn from these EXCEPTIONAL parents every day. Jointly, we've

> all been through just about all you can go through with this epilepsy

> thing. I will pray for you and your family. Losing a child has to be

> the hardest thing anyone can go through. My heart aches for the pain you

> must feel everyday. Take care & I wish you well on your research.

> 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, 12 Aug 2001 20:05:59 -0500 " Bestgen "

> writes:

> > Hi -

> >

> > I'm new here, and most likely the most ignorant on the list! My

> > soon-to-be 3 year old son was just diagnosed with having seizures.

> > We weren't even sure he was really having them. Sometimes he just

> > stares, and we weren't sure if he was daydreaming or if it was a

> > seizure. The episodes don't seem to happen very often, and just

> > for a few seconds. The EEG did display seizure activity

> > (widespread, not partial) both asleep and awake. He also had a

> > minor abnormality in white matter on his brain MRI. This was

> > possibly due to a minor brain bleed before/during/shortly after

> > birth. He was born a month early and small, just over 3 1/2

> > pounds.

> >

> > We're now being advised by the pediatric neurologist to start on

> > valporic acid (depakoate) due to the EEG results. I was wondering

> > if anyone on the list made the decision to just try the diet to

> > avoid medicine completely, or just turned to the diet because

> > medicines weren't working or the side effects of the medicines were

> > too great.

> >

> > I know many of you are dealing with greater seizure disorders and

> > other health problems than we are facing; my son's seem quite mild

> > at this point. However, I just want to be very cautious and make

> > sure we are doing the right thing ... we lost his baby brother last

> > November shortly after birth (complications from a serious heart

> > defect), so we take nothing lightly.

> >

> > Thanks so much for any advice.

> >

> >

> > Mom to Josh and angel

> >

>

> ________________________________________________________________

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>

> " 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]

,

You described yourself as the " most ignorant on the list " but I am SUPER

impressed that you have the foresight to look into the diet as a first

option. When was first diagnosed, I took him to the doc " to get

some medicine to stop the seizures. " I had NO IDEA that there were

options. Well, after 3 years and 8 medicines, we found ourselves studing

this " crazy sounding " diet. The seizures medicines do have side effects.

I work at a pharmacy & have told hundreds of people that when they read

medicine inserts (on the stock bottles) that they have to read them " with

a grain of salt " because any of them could scare you to death. WELL,

I've learned in a BIG way to take them seriously. It seems as if

experienced all the bad side effects of all the medicines. We watched

our happy child slip into a trap of medicine. Oh, how I wish I could

roll back the clock and try the diet first. I can't imagine how more

advanced developmentally he would be today. If it sounds like I'm a

" diet pusher " it is because it has been a miracle for us. From one

mother to another, you'll not regret trying the diet. If you try the

diet, remember, the pills will always be there waiting. If my healthy 3

year old had a seizure today, she would start the diet tomorrow & the

drugs would be last resort.

The Freeman book is where I started my research. Hang around our list

also. Sure, some of it will be Greek at first, but you will learn TONS!

I still learn from these EXCEPTIONAL parents every day. Jointly, we've

all been through just about all you can go through with this epilepsy

thing. I will pray for you and your family. Losing a child has to be

the hardest thing anyone can go through. My heart aches for the pain you

must feel everyday. Take care & I wish you well on your research.

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, 12 Aug 2001 20:05:59 -0500 " Bestgen "

writes:

> Hi -

>

> I'm new here, and most likely the most ignorant on the list! My

> soon-to-be 3 year old son was just diagnosed with having seizures.

> We weren't even sure he was really having them. Sometimes he just

> stares, and we weren't sure if he was daydreaming or if it was a

> seizure. The episodes don't seem to happen very often, and just

> for a few seconds. The EEG did display seizure activity

> (widespread, not partial) both asleep and awake. He also had a

> minor abnormality in white matter on his brain MRI. This was

> possibly due to a minor brain bleed before/during/shortly after

> birth. He was born a month early and small, just over 3 1/2

> pounds.

>

> We're now being advised by the pediatric neurologist to start on

> valporic acid (depakoate) due to the EEG results. I was wondering

> if anyone on the list made the decision to just try the diet to

> avoid medicine completely, or just turned to the diet because

> medicines weren't working or the side effects of the medicines were

> too great.

>

> I know many of you are dealing with greater seizure disorders and

> other health problems than we are facing; my son's seem quite mild

> at this point. However, I just want to be very cautious and make

> sure we are doing the right thing ... we lost his baby brother last

> November shortly after birth (complications from a serious heart

> defect), so we take nothing lightly.

>

> Thanks so much for any advice.

>

>

> Mom to Josh and angel

>

________________________________________________________________

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[Guest guest]

You'll get lots of opinions on the hospitalization

issue. And, a lot depends on your neuro's advice.

Ours let us initiate at home. We went very slowly --

going keto for breakfast and then dinner and then

lunch. Others have upped the ratio until they were

keto. My personal opinion is that it's far gentler to

the child to do this at home and not jolt the system

-- but there are others who prefer the security of the

hospital, plus those who feel that the " jolt " is what

helps the diet work.--D

***

--- Bestgen wrote:

> Do you guys think he's need to be hospitilized to

> start the diet if we're not weaning off meds?

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. "

__________________________________________________

[Guest guest]

, we are one of the ones who started the diet because 6 meds had not given good enough control. The diet gave a better result than any of the meds ever had, and we've been able to totally wean one Lamictal. Hannah started the diet while using lamictal, topamax and clonazepam, and is now only on the last two. I do wish it had been presented to us in a better light much earlier. All the things I'd heard about it were negative, so I never pursued it until we were desperate for a better treatment option.

Certainly consider the diet as early as you can, and I'd say there are a few people here who would say dont touch depakote. Be careful about the seizure drugs, as many have horrible side effects that the medical community wont acknowledge, and our kids end up being guinea pigs, and we teach by dreadful example what these drugs can do. Research as much as you can before going down the drug path. Cant comment on whether to try the diet as a first option. Have not heard of that happening but would not be surprised if some families pushed for that. Read the book by Freeman about the diet (can someone fill in the title here? my memory has failed me again!).

Best wishes for some solutions to Josh's seizures.

(Hannah's mum, Australia)

[Guest guest]

, we are one of the ones who started the diet because 6 meds had not given good enough control. The diet gave a better result than any of the meds ever had, and we've been able to totally wean one Lamictal. Hannah started the diet while using lamictal, topamax and clonazepam, and is now only on the last two. I do wish it had been presented to us in a better light much earlier. All the things I'd heard about it were negative, so I never pursued it until we were desperate for a better treatment option.

Certainly consider the diet as early as you can, and I'd say there are a few people here who would say dont touch depakote. Be careful about the seizure drugs, as many have horrible side effects that the medical community wont acknowledge, and our kids end up being guinea pigs, and we teach by dreadful example what these drugs can do. Research as much as you can before going down the drug path. Cant comment on whether to try the diet as a first option. Have not heard of that happening but would not be surprised if some families pushed for that. Read the book by Freeman about the diet (can someone fill in the title here? my memory has failed me again!).

Best wishes for some solutions to Josh's seizures.

(Hannah's mum, Australia)

[Guest guest]

>

> I don't know at this point if the neurologist is open to trying

keto

or not (am I getting the lingo right?).

if not find one who will support you.

Our hometown clinic happens to be Mayo Clinic.

I think you are in luck. Our neuro was there & has written a paper on

starting the diet without fasting. If she is so familiar with the

diet others there should be too.

I want to read all I can in the next couple of days and bounce this

idea off of the neurologist and pediatrician.

You may have to be very insistant as they are all pro drugs as that

is their training. >

> Do you guys think he's need to be hospitilized to start the diet if

we're not weaning off meds?

I don't think so but finding a neuro to agree will be hard -I have had

no success.

Joan-Jens Mom

[Guest guest]

:

One more thought on neuros & the diet. If you find a neuro outside a clinic

who is willing to go the diet route, make sure the dietician is experienced

as well. She is a very key player.

I met our dietician because Rose was malnourished from depakote (loss of

appetite is a known side effect). She had done the KGD in a hospital before

moving to New England. So I told my neuro that I had someone to manage the

diet for me. How about it? My neuro has not been part of a keto team in

over 12 yrs! and the dietician has all the keto experience.

This list will give you lots of support but a good dietician can save you

lots of headaches!

mom to Rose ketokid 8/00

[Guest guest]

- Just wanted to give you my input on drugs early on vs. diet. My daughter started having seizures out of the blue last Halloween. We did try her on Tegretol but she continued to get worse and we decided to put her on the diet instead of trying more drugs. We are so glad we did - she had no withdrawal seizures from the drugs and has been seizure free since we started the diet. That being said- 70 -80% of kids with epilepsy will be controlled with the first drug they try. Certainly easier then the diet for most kids ( and families) but if the first drug fails there is only about a 10% chance that the next drug will work. To me it does seem worth it to try one drug but after that you need to think long and hard before trying another. Just my opinion though, I know others have different ones. Good luck with whatever you decide !

- mom to Brittany

[Guest guest]

- Just wanted to give you my input on drugs early on vs. diet. My daughter started having seizures out of the blue last Halloween. We did try her on Tegretol but she continued to get worse and we decided to put her on the diet instead of trying more drugs. We are so glad we did - she had no withdrawal seizures from the drugs and has been seizure free since we started the diet. That being said- 70 -80% of kids with epilepsy will be controlled with the first drug they try. Certainly easier then the diet for most kids ( and families) but if the first drug fails there is only about a 10% chance that the next drug will work. To me it does seem worth it to try one drug but after that you need to think long and hard before trying another. Just my opinion though, I know others have different ones. Good luck with whatever you decide !

- mom to Brittany

[Guest guest]

Hi ,

Welcome to the list. I had been on holiday and have only

just seen your post. I don't want to worry you because your

son's case might be quite different, but just wanted to tell you

our experience incase it helps.

My son Rohan started having 'stares' at about 4 1/4 yrs of age.

Until then he had no problems. These episodes quickly developed

to complex partial seizures. His MRI showed loss of white matter

on one side of the brain (this is in the same area as where he hit

his head on the floor when accidentally dropped by a nurse at one

week old). Depakote was the 2nd drug he was on and was used

again about four yrs later when he was running out of drugs to try.

For over 7 yrs he was on various combinations of AEDs (10 in all)

with some helping for a couple of weeks or so. Then he seemed

to get used to it and it didn't help anymore. With all these AEDs

there were awful side-effects and they didn't even help the epilepsy,

which got progressively worse.

He has been on the KGD for about 1 1/2 years now, and I would

continue it just for being free of the drugs. We haven't had much

success being sz-free except in the last couple of weeks (scared

to even say so!) Knowing what I know now, If I had a child who

started sz today, I'd try the diet first instead of after several yrs.

of drugs. If you decide to try the diet, there is a lot of help on

this

list.

Having rambled on, I must say some people respond well to an

AED and your son may be one of those and you won't know till

you try it. If however the first drug doesn't work, I'd definitely

try the diet. Depakote is not one that works well with the diet

and it might be an idea to discuss it with your neuro, if you are

thinking of it at sometime.

Best of luck

Saro.....Rohan's mum

[Guest guest]

Hi ,

Welcome to the list. I had been on holiday and have only

just seen your post. I don't want to worry you because your

son's case might be quite different, but just wanted to tell you

our experience incase it helps.

My son Rohan started having 'stares' at about 4 1/4 yrs of age.

Until then he had no problems. These episodes quickly developed

to complex partial seizures. His MRI showed loss of white matter

on one side of the brain (this is in the same area as where he hit

his head on the floor when accidentally dropped by a nurse at one

week old). Depakote was the 2nd drug he was on and was used

again about four yrs later when he was running out of drugs to try.

For over 7 yrs he was on various combinations of AEDs (10 in all)

with some helping for a couple of weeks or so. Then he seemed

to get used to it and it didn't help anymore. With all these AEDs

there were awful side-effects and they didn't even help the epilepsy,

which got progressively worse.

He has been on the KGD for about 1 1/2 years now, and I would

continue it just for being free of the drugs. We haven't had much

success being sz-free except in the last couple of weeks (scared

to even say so!) Knowing what I know now, If I had a child who

started sz today, I'd try the diet first instead of after several yrs.

of drugs. If you decide to try the diet, there is a lot of help on

this

list.

Having rambled on, I must say some people respond well to an

AED and your son may be one of those and you won't know till

you try it. If however the first drug doesn't work, I'd definitely

try the diet. Depakote is not one that works well with the diet

and it might be an idea to discuss it with your neuro, if you are

thinking of it at sometime.

Best of luck

Saro.....Rohan's mum

[Guest guest]

Hi ,

Welcome to the list. I had been on holiday and have only

just seen your post. I don't want to worry you because your

son's case might be quite different, but just wanted to tell you

our experience incase it helps.

My son Rohan started having 'stares' at about 4 1/4 yrs of age.

Until then he had no problems. These episodes quickly developed

to complex partial seizures. His MRI showed loss of white matter

on one side of the brain (this is in the same area as where he hit

his head on the floor when accidentally dropped by a nurse at one

week old). Depakote was the 2nd drug he was on and was used

again about four yrs later when he was running out of drugs to try.

For over 7 yrs he was on various combinations of AEDs (10 in all)

with some helping for a couple of weeks or so. Then he seemed

to get used to it and it didn't help anymore. With all these AEDs

there were awful side-effects and they didn't even help the epilepsy,

which got progressively worse.

He has been on the KGD for about 1 1/2 years now, and I would

continue it just for being free of the drugs. We haven't had much

success being sz-free except in the last couple of weeks (scared

to even say so!) Knowing what I know now, If I had a child who

started sz today, I'd try the diet first instead of after several yrs.

of drugs. If you decide to try the diet, there is a lot of help on

this

list.

Having rambled on, I must say some people respond well to an

AED and your son may be one of those and you won't know till

you try it. If however the first drug doesn't work, I'd definitely

try the diet. Depakote is not one that works well with the diet

and it might be an idea to discuss it with your neuro, if you are

thinking of it at sometime.

Best of luck

Saro.....Rohan's mum