Help re: Insurance Coverage

[Guest guest]

Our insurance company, United Healthcare (PPO) has denied the keto

formula from coverage. Wondering if anyone has suggestions on how to

effectively word the appeal?

Our doctor has spoken with the insurance company, as has our nurse and

dietician. They have also sent in two letters.

Even though they understand that the keto diet is a treatment for

Epilepsy, United has denied the claim because they do not cover

" nutrition " . The plan states that they do NOT cover:

1) Megavitamin and nutrition-based therapy

2) Nutritional counseling

3) Enteral feedings and other nutritional and electrolyte supplements,

including infant formula and donor breast milk

Any suggestions? Our daughter is 10 months old and is on all

liquids...the RCF, microlipids and moducal are very expensive.

Thanks!!

Mom to Camille, 10 months old

Dx with Infantile Spasms

Nissen Fundoplication, MIC-Key G-tube

Ketogenic diet started July 2004

~~~~~~~~~~~~~~

Kim DesJardins

Re: Strong Hosp./-

Sorry to " jump in " . Do you mean Strong Hospital in Rochester, NY? My

husband is from Rochester.

Re: Strong Hosp./-

Hi -

It was wonderful to hear from you - I just sent a

global thank you for the words of encouragement which

certainly turned my day around (to say the least) but

just wanted to send you a side note to let you know

that we are going to Strong (and have an apt. w/Dr.

Wong - 's neuro, right?). Bad news is, our apt.

was scheduled for the end of Aug. and then

called me this week saying the Dr. wouldn't be

available and she needed to reschedule for the end of

Sept. I was so bummed! We are so close to being

seizure free (down to night time seizures now) and was

interested to see how they may suggest fine tuning to

get the night time seizures down. But... at least we

have the apt. and all the paperwork is done and sent.

I'll be sure to let you know how things go once we

FINALLY get in.

That's great news that is doing so well - I

often think about that little guy - again, very

encouraging to hear that he is making bigger strides

in development and talking more. That's SOOOO cool

that he is now med free, too, I'm sure a HUGE load off

your minds! Always scary thinking of weaning and then

pulling the medication, never knowing how he'd

respond. WOW!!!! I don't think it is out of the

question to discuss the possibility of weaning after

you hit the one year mark. Especially since has

been seizure free from the time of initiation (or

close enough). Though you were probably hoping for an

EEG this time, it might be more insightful to have it

done in Nov. - if it's clear/normal at that time, I'm

sure it will give the Drs. more info. to go by. I

know what you mean though, it would have been

encouraging to see a normal EEG NOW.

Hug that little guy for me! I haven't seen you post

much lately so am especially glad to hear 's

continuing to do so well!

(mom to )

--- Macko jasonsmom001@...> wrote:

> -

> I'm so sorry about your recent appt. with the local

> neuro. What a jerk! I agree with 's

> reply...you can't predict the future and if you

> believe is going to be ok and you ARE seeing

> strides in development, that is definitely a

> positive! And the no talking thing... is

> starting to say more words slowly but surely. I

> think it takes awhile for these kids to get their

> bearings once off all meds...there's so much more

> for their little brains to take in! And they need

> to comprehend things before they can be expected to

> express themselves! We have a friend that is a

> counselor who didn't speak till he was 3 and he is

> about one of the smartest men I know!

> I have been meaning to write since I saw you were

> back from vacation. It seems that is doing

> TONS better! That's great. We had an appt. today

> with our neuro. at Strong...just a 6 month check, no

> eeg till Nov. I was kind of hoping for one today

> though, since he is now off all meds and doing even

> better. By then though he will have been on the

> diet a year and I'm wondering if we will start to

> lower the ratio at all.

> I thought you mentioned in a previous post that you

> had an appt. this month with a new keto team? Was

> just wondering if you were going to Rochester or if

> it was a new team in NYC.

> Anyway, glad to see that things are going well for

> (despite that jerky neuro.) Big hugs to him!

> - mom to 2 and 1/2, ketokid since 10/03,

> seizure free since 11/03, med free since 7/04

>

> " M. " mcpitza@...> wrote:

> ,

> You have to keep " kicking against the pricks " . My

> sons Neuro told me

> the same thing several years back. This year he just

> completed the

> second grade and his teacher advised us that he is

> the best reader in

> her class (which btw is a regular grade school

> non-special ed. class

> in a private school that happens to have a great

> teacher/student

> ratio). You can't buy into what they are saying or

> you will lower the

> bar for your child. You will know what your child is

> capable of

> doing. Trust yourself and lean on the sustaining

> infinite.

>

>

>

>

>

> " 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]

Hi ,

Our daughter Hannah is 7 months old and recently started the ketocal. Prior to

that she was on a 2:1 ratio which I made out of a cocktail of oils, etc. We are

having the same trouble gettinghte ketocal covered by our insurance. We have

both primary (guardian) and secondary (medicaid disbility, also known as a

Deeming Waiver or Becket) Our Ketocal was also denied. We were told to try

to get WIC to pay for it. In " The Ketogenic Diet, A Treatment for Epilepsy " by

Dr. Freeman, there is a great form letter you can use. Let me know if you

need it and I will send it to you. Please feel free to contact me on my personal

email: stephanie_shapiro@...

Good Luck!

Re: Strong Hosp./-

Hi -

It was wonderful to hear from you - I just sent a

global thank you for the words of encouragement which

certainly turned my day around (to say the least) but

just wanted to send you a side note to let you know

that we are going to Strong (and have an apt. w/Dr.

Wong - 's neuro, right?). Bad news is, our apt.

was scheduled for the end of Aug. and then

called me this week saying the Dr. wouldn't be

available and she needed to reschedule for the end of

Sept. I was so bummed! We are so close to being

seizure free (down to night time seizures now) and was

interested to see how they may suggest fine tuning to

get the night time seizures down. But... at least we

have the apt. and all the paperwork is done and sent.

I'll be sure to let you know how things go once we

FINALLY get in.

That's great news that is doing so well - I

often think about that little guy - again, very

encouraging to hear that he is making bigger strides

in development and talking more. That's SOOOO cool

that he is now med free, too, I'm sure a HUGE load off

your minds! Always scary thinking of weaning and then

pulling the medication, never knowing how he'd

respond. WOW!!!! I don't think it is out of the

question to discuss the possibility of weaning after

you hit the one year mark. Especially since has

been seizure free from the time of initiation (or

close enough). Though you were probably hoping for an

EEG this time, it might be more insightful to have it

done in Nov. - if it's clear/normal at that time, I'm

sure it will give the Drs. more info. to go by. I

know what you mean though, it would have been

encouraging to see a normal EEG NOW.

Hug that little guy for me! I haven't seen you post

much lately so am especially glad to hear 's

continuing to do so well!

(mom to )

--- Macko jasonsmom001@...> wrote:

> -

> I'm so sorry about your recent appt. with the local

> neuro. What a jerk! I agree with 's

> reply...you can't predict the future and if you

> believe is going to be ok and you ARE seeing

> strides in development, that is definitely a

> positive! And the no talking thing... is

> starting to say more words slowly but surely. I

> think it takes awhile for these kids to get their

> bearings once off all meds...there's so much more

> for their little brains to take in! And they need

> to comprehend things before they can be expected to

> express themselves! We have a friend that is a

> counselor who didn't speak till he was 3 and he is

> about one of the smartest men I know!

> I have been meaning to write since I saw you were

> back from vacation. It seems that is doing

> TONS better! That's great. We had an appt. today

> with our neuro. at Strong...just a 6 month check, no

> eeg till Nov. I was kind of hoping for one today

> though, since he is now off all meds and doing even

> better. By then though he will have been on the

> diet a year and I'm wondering if we will start to

> lower the ratio at all.

> I thought you mentioned in a previous post that you

> had an appt. this month with a new keto team? Was

> just wondering if you were going to Rochester or if

> it was a new team in NYC.

> Anyway, glad to see that things are going well for

> (despite that jerky neuro.) Big hugs to him!

> - mom to 2 and 1/2, ketokid since 10/03,

> seizure free since 11/03, med free since 7/04

>

> " M. " mcpitza@...> wrote:

> ,

> You have to keep " kicking against the pricks " . My

> sons Neuro told me

> the same thing several years back. This year he just

> completed the

> second grade and his teacher advised us that he is

> the best reader in

> her class (which btw is a regular grade school

> non-special ed. class

> in a private school that happens to have a great

> teacher/student

> ratio). You can't buy into what they are saying or

> you will lower the

> bar for your child. You will know what your child is

> capable of

> doing. Trust yourself and lean on the sustaining

> infinite.

>

>

>

>

>

> " 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]

Can you get a prescription and get it through your pharmacy and just pay

your Rx Co Pay? This is probably what you are trying now.

OR What about Home Health Care?

We have a $10,000 a year max coverage for Home Health Care. We get ours

under the Home Health Care category and have it delivered.

Sounds like you need a letter from your neuro stating that it is a

medication not a nutritional supplement.

Good Luck,

Jim

Re: Strong Hosp./-

Sorry to " jump in " . Do you mean Strong Hospital in Rochester, NY? My

husband is from Rochester.

Re: Strong Hosp./-

Hi -

It was wonderful to hear from you - I just sent a

global thank you for the words of encouragement which

certainly turned my day around (to say the least) but

just wanted to send you a side note to let you know

that we are going to Strong (and have an apt. w/Dr.

Wong - 's neuro, right?). Bad news is, our apt.

was scheduled for the end of Aug. and then

called me this week saying the Dr. wouldn't be

available and she needed to reschedule for the end of

Sept. I was so bummed! We are so close to being

seizure free (down to night time seizures now) and was

interested to see how they may suggest fine tuning to

get the night time seizures down. But... at least we

have the apt. and all the paperwork is done and sent.

I'll be sure to let you know how things go once we

FINALLY get in.

That's great news that is doing so well - I

often think about that little guy - again, very

encouraging to hear that he is making bigger strides

in development and talking more. That's SOOOO cool

that he is now med free, too, I'm sure a HUGE load off

your minds! Always scary thinking of weaning and then

pulling the medication, never knowing how he'd

respond. WOW!!!! I don't think it is out of the

question to discuss the possibility of weaning after

you hit the one year mark. Especially since has

been seizure free from the time of initiation (or

close enough). Though you were probably hoping for an

EEG this time, it might be more insightful to have it

done in Nov. - if it's clear/normal at that time, I'm

sure it will give the Drs. more info. to go by. I

know what you mean though, it would have been

encouraging to see a normal EEG NOW.

Hug that little guy for me! I haven't seen you post

much lately so am especially glad to hear 's

continuing to do so well!

(mom to )

--- Macko jasonsmom001@...> wrote:

> -

> I'm so sorry about your recent appt. with the local

> neuro. What a jerk! I agree with 's

> reply...you can't predict the future and if you

> believe is going to be ok and you ARE seeing

> strides in development, that is definitely a

> positive! And the no talking thing... is

> starting to say more words slowly but surely. I

> think it takes awhile for these kids to get their

> bearings once off all meds...there's so much more

> for their little brains to take in! And they need

> to comprehend things before they can be expected to

> express themselves! We have a friend that is a

> counselor who didn't speak till he was 3 and he is

> about one of the smartest men I know!

> I have been meaning to write since I saw you were

> back from vacation. It seems that is doing

> TONS better! That's great. We had an appt. today

> with our neuro. at Strong...just a 6 month check, no

> eeg till Nov. I was kind of hoping for one today

> though, since he is now off all meds and doing even

> better. By then though he will have been on the

> diet a year and I'm wondering if we will start to

> lower the ratio at all.

> I thought you mentioned in a previous post that you

> had an appt. this month with a new keto team? Was

> just wondering if you were going to Rochester or if

> it was a new team in NYC.

> Anyway, glad to see that things are going well for

> (despite that jerky neuro.) Big hugs to him!

> - mom to 2 and 1/2, ketokid since 10/03,

> seizure free since 11/03, med free since 7/04

>

> " M. " mcpitza@...> wrote:

> ,

> You have to keep " kicking against the pricks " . My

> sons Neuro told me

> the same thing several years back. This year he just

> completed the

> second grade and his teacher advised us that he is

> the best reader in

> her class (which btw is a regular grade school

> non-special ed. class

> in a private school that happens to have a great

> teacher/student

> ratio). You can't buy into what they are saying or

> you will lower the

> bar for your child. You will know what your child is

> capable of

> doing. Trust yourself and lean on the sustaining

> infinite.

>

>

>

>

>

> " 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 have been fighting insurance companies off and on since was born.

Couple of thoughts...

1) Get copies of everything you can find on the ketogenic formula and how it

isn't a supplement. Get copies of both letters from the doc and the

neutritianist. Get copies of medical files from your kiddo and how you tried

other things but this is what is keeping the seizures back. Pages and pages

of the stuff. Get it all together and send them a letter of your own on top

about why your kiddo needs it and what it will save them in the long run

(med costs, hospitalizations etc). Put it all in a big box and send it to

the appeals section of the insurance company return reciept requested. They

typically have 30 days to reply with a yes or no (sdepends on the state) but

they have to answer everything you put in it. Usually they see the mountain

of paper and find it easier to say yes than to hire the doctor to dispute

it.

2) Get the human resources guy at work involved. When the HR guys start

calling the insurance company tends to listen a bit better.

It's very inportant that they understand that the keto formula is not a

supplement or formula. Heck don't even call it that! Explain to them about

the situation and how it's a medication. have a doctor write in his letter

specifically that it's a med. Good luck

Ally

Re: Strong Hosp./-

>

>

> Hi -

> It was wonderful to hear from you - I just sent a

> global thank you for the words of encouragement which

> certainly turned my day around (to say the least) but

> just wanted to send you a side note to let you know

> that we are going to Strong (and have an apt. w/Dr.

> Wong - 's neuro, right?). Bad news is, our apt.

> was scheduled for the end of Aug. and then

> called me this week saying the Dr. wouldn't be

> available and she needed to reschedule for the end of

> Sept. I was so bummed! We are so close to being

> seizure free (down to night time seizures now) and was

> interested to see how they may suggest fine tuning to

> get the night time seizures down. But... at least we

> have the apt. and all the paperwork is done and sent.

> I'll be sure to let you know how things go once we

> FINALLY get in.

>

> That's great news that is doing so well - I

> often think about that little guy - again, very

> encouraging to hear that he is making bigger strides

> in development and talking more. That's SOOOO cool

> that he is now med free, too, I'm sure a HUGE load off

> your minds! Always scary thinking of weaning and then

> pulling the medication, never knowing how he'd

> respond. WOW!!!! I don't think it is out of the

> question to discuss the possibility of weaning after

> you hit the one year mark. Especially since has

> been seizure free from the time of initiation (or

> close enough). Though you were probably hoping for an

> EEG this time, it might be more insightful to have it

> done in Nov. - if it's clear/normal at that time, I'm

> sure it will give the Drs. more info. to go by. I

> know what you mean though, it would have been

> encouraging to see a normal EEG NOW.

>

> Hug that little guy for me! I haven't seen you post

> much lately so am especially glad to hear 's

> continuing to do so well!

>

> (mom to )

> --- Macko jasonsmom001@...> wrote:

>

> > -

> > I'm so sorry about your recent appt. with the local

> > neuro. What a jerk! I agree with 's

> > reply...you can't predict the future and if you

> > believe is going to be ok and you ARE seeing

> > strides in development, that is definitely a

> > positive! And the no talking thing... is

> > starting to say more words slowly but surely. I

> > think it takes awhile for these kids to get their

> > bearings once off all meds...there's so much more

> > for their little brains to take in! And they need

> > to comprehend things before they can be expected to

> > express themselves! We have a friend that is a

> > counselor who didn't speak till he was 3 and he is

> > about one of the smartest men I know!

> > I have been meaning to write since I saw you were

> > back from vacation. It seems that is doing

> > TONS better! That's great. We had an appt. today

> > with our neuro. at Strong...just a 6 month check, no

> > eeg till Nov. I was kind of hoping for one today

> > though, since he is now off all meds and doing even

> > better. By then though he will have been on the

> > diet a year and I'm wondering if we will start to

> > lower the ratio at all.

> > I thought you mentioned in a previous post that you

> > had an appt. this month with a new keto team? Was

> > just wondering if you were going to Rochester or if

> > it was a new team in NYC.

> > Anyway, glad to see that things are going well for

> > (despite that jerky neuro.) Big hugs to him!

> > - mom to 2 and 1/2, ketokid since 10/03,

> > seizure free since 11/03, med free since 7/04

> >

> > " M. " mcpitza@...> wrote:

> > ,

> > You have to keep " kicking against the pricks " . My

> > sons Neuro told me

> > the same thing several years back. This year he just

> > completed the

> > second grade and his teacher advised us that he is

> > the best reader in

> > her class (which btw is a regular grade school

> > non-special ed. class

> > in a private school that happens to have a great

> > teacher/student

> > ratio). You can't buy into what they are saying or

> > you will lower the

> > bar for your child. You will know what your child is

> > capable of

> > doing. Trust yourself and lean on the sustaining

> > infinite.

> >

> >

> >

> >

> >

> > " 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]

Thanks for the very detailed suggestions! I love the advice...

: )

~~~~~~~~~~~~~~

Kim DesJardins

Re: Help re: Insurance Coverage

I have been fighting insurance companies off and on since was

born.

Couple of thoughts...

1) Get copies of everything you can find on the ketogenic formula and

how it

isn't a supplement. Get copies of both letters from the doc and the

neutritianist. Get copies of medical files from your kiddo and how you

tried

other things but this is what is keeping the seizures back. Pages and

pages

of the stuff. Get it all together and send them a letter of your own on

top

about why your kiddo needs it and what it will save them in the long run

(med costs, hospitalizations etc). Put it all in a big box and send it

to

the appeals section of the insurance company return reciept requested.

They

typically have 30 days to reply with a yes or no (sdepends on the state)

but

they have to answer everything you put in it. Usually they see the

mountain

of paper and find it easier to say yes than to hire the doctor to

dispute

it.

2) Get the human resources guy at work involved. When the HR guys start

calling the insurance company tends to listen a bit better.

It's very inportant that they understand that the keto formula is not a

supplement or formula. Heck don't even call it that! Explain to them

about

the situation and how it's a medication. have a doctor write in his

letter

specifically that it's a med. Good luck

Ally

Re: Strong Hosp./-

>

>

> Hi -

> It was wonderful to hear from you - I just sent a

> global thank you for the words of encouragement which

> certainly turned my day around (to say the least) but

> just wanted to send you a side note to let you know

> that we are going to Strong (and have an apt. w/Dr.

> Wong - 's neuro, right?). Bad news is, our apt.

> was scheduled for the end of Aug. and then

> called me this week saying the Dr. wouldn't be

> available and she needed to reschedule for the end of

> Sept. I was so bummed! We are so close to being

> seizure free (down to night time seizures now) and was

> interested to see how they may suggest fine tuning to

> get the night time seizures down. But... at least we

> have the apt. and all the paperwork is done and sent.

> I'll be sure to let you know how things go once we

> FINALLY get in.

>

> That's great news that is doing so well - I

> often think about that little guy - again, very

> encouraging to hear that he is making bigger strides

> in development and talking more. That's SOOOO cool

> that he is now med free, too, I'm sure a HUGE load off

> your minds! Always scary thinking of weaning and then

> pulling the medication, never knowing how he'd

> respond. WOW!!!! I don't think it is out of the

> question to discuss the possibility of weaning after

> you hit the one year mark. Especially since has

> been seizure free from the time of initiation (or

> close enough). Though you were probably hoping for an

> EEG this time, it might be more insightful to have it

> done in Nov. - if it's clear/normal at that time, I'm

> sure it will give the Drs. more info. to go by. I

> know what you mean though, it would have been

> encouraging to see a normal EEG NOW.

>

> Hug that little guy for me! I haven't seen you post

> much lately so am especially glad to hear 's

> continuing to do so well!

>

> (mom to )

> --- Macko jasonsmom001@...> wrote:

>

> > -

> > I'm so sorry about your recent appt. with the local

> > neuro. What a jerk! I agree with 's

> > reply...you can't predict the future and if you

> > believe is going to be ok and you ARE seeing

> > strides in development, that is definitely a

> > positive! And the no talking thing... is

> > starting to say more words slowly but surely. I

> > think it takes awhile for these kids to get their

> > bearings once off all meds...there's so much more

> > for their little brains to take in! And they need

> > to comprehend things before they can be expected to

> > express themselves! We have a friend that is a

> > counselor who didn't speak till he was 3 and he is

> > about one of the smartest men I know!

> > I have been meaning to write since I saw you were

> > back from vacation. It seems that is doing

> > TONS better! That's great. We had an appt. today

> > with our neuro. at Strong...just a 6 month check, no

> > eeg till Nov. I was kind of hoping for one today

> > though, since he is now off all meds and doing even

> > better. By then though he will have been on the

> > diet a year and I'm wondering if we will start to

> > lower the ratio at all.

> > I thought you mentioned in a previous post that you

> > had an appt. this month with a new keto team? Was

> > just wondering if you were going to Rochester or if

> > it was a new team in NYC.

> > Anyway, glad to see that things are going well for

> > (despite that jerky neuro.) Big hugs to him!

> > - mom to 2 and 1/2, ketokid since 10/03,

> > seizure free since 11/03, med free since 7/04

> >

> > " M. " mcpitza@...> wrote:

> > ,

> > You have to keep " kicking against the pricks " . My

> > sons Neuro told me

> > the same thing several years back. This year he just

> > completed the

> > second grade and his teacher advised us that he is

> > the best reader in

> > her class (which btw is a regular grade school

> > non-special ed. class

> > in a private school that happens to have a great

> > teacher/student

> > ratio). You can't buy into what they are saying or

> > you will lower the

> > bar for your child. You will know what your child is

> > capable of

> > doing. Trust yourself and lean on the sustaining

> > infinite.

> >

> >

> >

> >

> >

> > " 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]

,

Wonderful suggestion! I have a copy of the book and didn't even realize

the letter was there. I will try it!

: )

~~~~~~~~~~~~~~

Kim DesJardins

Re: Help re: Insurance Coverage

Hi ,

Our daughter Hannah is 7 months old and recently started the ketocal.

Prior to that she was on a 2:1 ratio which I made out of a cocktail of

oils, etc. We are having the same trouble gettinghte ketocal covered by

our insurance. We have both primary (guardian) and secondary (medicaid

disbility, also known as a Deeming Waiver or Becket) Our Ketocal

was also denied. We were told to try to get WIC to pay for it. In " The

Ketogenic Diet, A Treatment for Epilepsy " by Dr. Freeman, there is

a great form letter you can use. Let me know if you need it and I will

send it to you. Please feel free to contact me on my personal email:

stephanie_shapiro@...

Good Luck!

Re: Strong Hosp./-

Hi -

It was wonderful to hear from you - I just sent a

global thank you for the words of encouragement which

certainly turned my day around (to say the least) but

just wanted to send you a side note to let you know

that we are going to Strong (and have an apt. w/Dr.

Wong - 's neuro, right?). Bad news is, our apt.

was scheduled for the end of Aug. and then

called me this week saying the Dr. wouldn't be

available and she needed to reschedule for the end of

Sept. I was so bummed! We are so close to being

seizure free (down to night time seizures now) and was

interested to see how they may suggest fine tuning to

get the night time seizures down. But... at least we

have the apt. and all the paperwork is done and sent.

I'll be sure to let you know how things go once we

FINALLY get in.

That's great news that is doing so well - I

often think about that little guy - again, very

encouraging to hear that he is making bigger strides

in development and talking more. That's SOOOO cool

that he is now med free, too, I'm sure a HUGE load off

your minds! Always scary thinking of weaning and then

pulling the medication, never knowing how he'd

respond. WOW!!!! I don't think it is out of the

question to discuss the possibility of weaning after

you hit the one year mark. Especially since has

been seizure free from the time of initiation (or

close enough). Though you were probably hoping for an

EEG this time, it might be more insightful to have it

done in Nov. - if it's clear/normal at that time, I'm

sure it will give the Drs. more info. to go by. I

know what you mean though, it would have been

encouraging to see a normal EEG NOW.

Hug that little guy for me! I haven't seen you post

much lately so am especially glad to hear 's

continuing to do so well!

(mom to )

--- Macko jasonsmom001@...> wrote:

> -

> I'm so sorry about your recent appt. with the local

> neuro. What a jerk! I agree with 's

> reply...you can't predict the future and if you

> believe is going to be ok and you ARE seeing

> strides in development, that is definitely a

> positive! And the no talking thing... is

> starting to say more words slowly but surely. I

> think it takes awhile for these kids to get their

> bearings once off all meds...there's so much more

> for their little brains to take in! And they need

> to comprehend things before they can be expected to

> express themselves! We have a friend that is a

> counselor who didn't speak till he was 3 and he is

> about one of the smartest men I know!

> I have been meaning to write since I saw you were

> back from vacation. It seems that is doing

> TONS better! That's great. We had an appt. today

> with our neuro. at Strong...just a 6 month check, no

> eeg till Nov. I was kind of hoping for one today

> though, since he is now off all meds and doing even

> better. By then though he will have been on the

> diet a year and I'm wondering if we will start to

> lower the ratio at all.

> I thought you mentioned in a previous post that you

> had an appt. this month with a new keto team? Was

> just wondering if you were going to Rochester or if

> it was a new team in NYC.

> Anyway, glad to see that things are going well for

> (despite that jerky neuro.) Big hugs to him!

> - mom to 2 and 1/2, ketokid since 10/03,

> seizure free since 11/03, med free since 7/04

>

> " M. " mcpitza@...> wrote:

> ,

> You have to keep " kicking against the pricks " . My

> sons Neuro told me

> the same thing several years back. This year he just

> completed the

> second grade and his teacher advised us that he is

> the best reader in

> her class (which btw is a regular grade school

> non-special ed. class

> in a private school that happens to have a great

> teacher/student

> ratio). You can't buy into what they are saying or

> you will lower the

> bar for your child. You will know what your child is

> capable of

> doing. Trust yourself and lean on the sustaining

> infinite.

>

>

>

>

>

> " 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]

Thanks so much Jim -- I hadn't tried getting an Rx for it!

~~~~~~~~~~~~~~

Kim DesJardins

Re: Strong Hosp./-

Sorry to " jump in " . Do you mean Strong Hospital in Rochester, NY? My

husband is from Rochester.

Re: Strong Hosp./-

Hi -

It was wonderful to hear from you - I just sent a

global thank you for the words of encouragement which

certainly turned my day around (to say the least) but

just wanted to send you a side note to let you know

that we are going to Strong (and have an apt. w/Dr.

Wong - 's neuro, right?). Bad news is, our apt.

was scheduled for the end of Aug. and then

called me this week saying the Dr. wouldn't be

available and she needed to reschedule for the end of

Sept. I was so bummed! We are so close to being

seizure free (down to night time seizures now) and was

interested to see how they may suggest fine tuning to

get the night time seizures down. But... at least we

have the apt. and all the paperwork is done and sent.

I'll be sure to let you know how things go once we

FINALLY get in.

That's great news that is doing so well - I

often think about that little guy - again, very

encouraging to hear that he is making bigger strides

in development and talking more. That's SOOOO cool

that he is now med free, too, I'm sure a HUGE load off

your minds! Always scary thinking of weaning and then

pulling the medication, never knowing how he'd

respond. WOW!!!! I don't think it is out of the

question to discuss the possibility of weaning after

you hit the one year mark. Especially since has

been seizure free from the time of initiation (or

close enough). Though you were probably hoping for an

EEG this time, it might be more insightful to have it

done in Nov. - if it's clear/normal at that time, I'm

sure it will give the Drs. more info. to go by. I

know what you mean though, it would have been

encouraging to see a normal EEG NOW.

Hug that little guy for me! I haven't seen you post

much lately so am especially glad to hear 's

continuing to do so well!

(mom to )

--- Macko jasonsmom001@...> wrote:

> -

> I'm so sorry about your recent appt. with the local

> neuro. What a jerk! I agree with 's

> reply...you can't predict the future and if you

> believe is going to be ok and you ARE seeing

> strides in development, that is definitely a

> positive! And the no talking thing... is

> starting to say more words slowly but surely. I

> think it takes awhile for these kids to get their

> bearings once off all meds...there's so much more

> for their little brains to take in! And they need

> to comprehend things before they can be expected to

> express themselves! We have a friend that is a

> counselor who didn't speak till he was 3 and he is

> about one of the smartest men I know!

> I have been meaning to write since I saw you were

> back from vacation. It seems that is doing

> TONS better! That's great. We had an appt. today

> with our neuro. at Strong...just a 6 month check, no

> eeg till Nov. I was kind of hoping for one today

> though, since he is now off all meds and doing even

> better. By then though he will have been on the

> diet a year and I'm wondering if we will start to

> lower the ratio at all.

> I thought you mentioned in a previous post that you

> had an appt. this month with a new keto team? Was

> just wondering if you were going to Rochester or if

> it was a new team in NYC.

> Anyway, glad to see that things are going well for

> (despite that jerky neuro.) Big hugs to him!

> - mom to 2 and 1/2, ketokid since 10/03,

> seizure free since 11/03, med free since 7/04

>

> " M. " mcpitza@...> wrote:

> ,

> You have to keep " kicking against the pricks " . My

> sons Neuro told me

> the same thing several years back. This year he just

> completed the

> second grade and his teacher advised us that he is

> the best reader in

> her class (which btw is a regular grade school

> non-special ed. class

> in a private school that happens to have a great

> teacher/student

> ratio). You can't buy into what they are saying or

> you will lower the

> bar for your child. You will know what your child is

> capable of

> doing. Trust yourself and lean on the sustaining

> infinite.

>

>

>

>

>

> " 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 had a RX and it didn't help. Sorry,

Re: Strong Hosp./-

Hi -

It was wonderful to hear from you - I just sent a

global thank you for the words of encouragement which

certainly turned my day around (to say the least) but

just wanted to send you a side note to let you know

that we are going to Strong (and have an apt. w/Dr.

Wong - 's neuro, right?). Bad news is, our apt.

was scheduled for the end of Aug. and then

called me this week saying the Dr. wouldn't be

available and she needed to reschedule for the end of

Sept. I was so bummed! We are so close to being

seizure free (down to night time seizures now) and was

interested to see how they may suggest fine tuning to

get the night time seizures down. But... at least we

have the apt. and all the paperwork is done and sent.

I'll be sure to let you know how things go once we

FINALLY get in.

That's great news that is doing so well - I

often think about that little guy - again, very

encouraging to hear that he is making bigger strides

in development and talking more. That's SOOOO cool

that he is now med free, too, I'm sure a HUGE load off

your minds! Always scary thinking of weaning and then

pulling the medication, never knowing how he'd

respond. WOW!!!! I don't think it is out of the

question to discuss the possibility of weaning after

you hit the one year mark. Especially since has

been seizure free from the time of initiation (or

close enough). Though you were probably hoping for an

EEG this time, it might be more insightful to have it

done in Nov. - if it's clear/normal at that time, I'm

sure it will give the Drs. more info. to go by. I

know what you mean though, it would have been

encouraging to see a normal EEG NOW.

Hug that little guy for me! I haven't seen you post

much lately so am especially glad to hear 's

continuing to do so well!

(mom to )

--- Macko jasonsmom001@...> wrote:

> -

> I'm so sorry about your recent appt. with the local

> neuro. What a jerk! I agree with 's

> reply...you can't predict the future and if you

> believe is going to be ok and you ARE seeing

> strides in development, that is definitely a

> positive! And the no talking thing... is

> starting to say more words slowly but surely. I

> think it takes awhile for these kids to get their

> bearings once off all meds...there's so much more

> for their little brains to take in! And they need

> to comprehend things before they can be expected to

> express themselves! We have a friend that is a

> counselor who didn't speak till he was 3 and he is

> about one of the smartest men I know!

> I have been meaning to write since I saw you were

> back from vacation. It seems that is doing

> TONS better! That's great. We had an appt. today

> with our neuro. at Strong...just a 6 month check, no

> eeg till Nov. I was kind of hoping for one today

> though, since he is now off all meds and doing even

> better. By then though he will have been on the

> diet a year and I'm wondering if we will start to

> lower the ratio at all.

> I thought you mentioned in a previous post that you

> had an appt. this month with a new keto team? Was

> just wondering if you were going to Rochester or if

> it was a new team in NYC.

> Anyway, glad to see that things are going well for

> (despite that jerky neuro.) Big hugs to him!

> - mom to 2 and 1/2, ketokid since 10/03,

> seizure free since 11/03, med free since 7/04

>

> " M. " mcpitza@...> wrote:

> ,

> You have to keep " kicking against the pricks " . My

> sons Neuro told me

> the same thing several years back. This year he just

> completed the

> second grade and his teacher advised us that he is

> the best reader in

> her class (which btw is a regular grade school

> non-special ed. class

> in a private school that happens to have a great

> teacher/student

> ratio). You can't buy into what they are saying or

> you will lower the

> bar for your child. You will know what your child is

> capable of

> doing. Trust yourself and lean on the sustaining

> infinite.

>

>

>

>

>

> " 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

>

>

>

>

>