Re: Strong Hosp./

[Guest guest]

Hi -

Yup, Strong in Rochester. We are from Syracuse, my brother-in-law lives in

Rochester though.

- mom to

Shapiro stephanie_shapiro@...> wrote:

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 -

Yip - we are talking about Strong Hospital in

Rochester. We live in Corning, NY which is about 1.5

hours from Rochester.

--- Shapiro stephanie_shapiro@...>

wrote:

> 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

> >

> >

> >

> >

> >