Need to share some good news!

[Guest guest]

I'm so afraid to jinx anything, but I really have to share my son

's experience on the diet thus far.

First a brief history. Nate is 15 months old, very delayed in his

motor skills, and has myoclonic epilepsy of unknown origin. He

was having 100+ seizures/day at his most. He's been resistant

to all the meds we've tried over the past six months, and we

started the diet on March 24.

In the hospital for the diet initiation, the start was horrible. He

started seizing more and was soooo irritable. Then, after about

two weeks at home, we started seeing somewhat of a

decrease--down to less than 20 seizures a day. At that point he

was on a 3:1 ratio.

Last week, we went in for our two-week follow-up visit, and the

neuro was " pleased " with the progress, but wanted to fine-tune

to see if we could get even better seizure control. So, on Friday,

we went to a 3.5:1 ratio. The results are AMAZING!!! 's still

having seizures, but they're less than 10 a day! He's more alert,

he's connecting with us, and started rolling again!! We haven't

seen that in months, and the neuros were afraid he was

regressing!

All along, our hope was that all the seizing was interfering with

the development, and it wasn't the " unknown disease " causing

him to regress. We just wanted to clear his mind and see what

he was capable of.

I just can't believe that my little boy is actually in there trying to get

out! I can see comprehension in his eyes; he reacts to words I

say, songs I sing, and is even giving us high fives!!! Although I'm

sure this sounds pretty immature for the average 15-month old,

it's truly amazing for us!

The next step is reducing the meds, the first being klonopin. I'm

so nervous about that, because we tried it once before (when

Nate wasn't on the diet), and it was HORRENDOUS. The

withdrawal seizures were unbearable. I reminded the neuro of

this, and she compromised and said we'd start in two weeks,

and that we " deserved a status quo " period. So, we'll see how it

goes, but for now, I'm just enjoying this little person who's finally

able to express himself; and we're finally getting to know each

other.

Meredith

Mom to Nate

[Guest guest]

GREAT news Meredith! Savor every minute and look toward even better

days down the road!

Glenna

> Meredith,

> This is so wonderful to hear. We had to wean klonopin too soon

after

> initiation. We did a painfully slow wean, 10% reduction every 2

weeks. On

> day 3 or 4, Lynden would have the fallout......... increased drops,

toxicity

> symptoms, vomiting, nausea. This would last a couple of days and

then her

> drops would improve over the next week.

>

> Less than 10 a day?!! Yipee!!!!!!!!

>

> Best wishes,

> Ann Shepard

>

> Need to share some good news!

>

> I'm so afraid to jinx anything, but I really have to share my son

> 's experience on the diet thus far.

>

> First a brief history. Nate is 15 months old, very delayed in his

> motor skills, and has myoclonic epilepsy of unknown origin. He

> was having 100+ seizures/day at his most. He's been resistant

> to all the meds we've tried over the past six months, and we

> started the diet on March 24.

>

> In the hospital for the diet initiation, the start was horrible. He

> started seizing more and was soooo irritable. Then, after about

> two weeks at home, we started seeing somewhat of a

> decrease--down to less than 20 seizures a day. At that point he

> was on a 3:1 ratio.

>

> Last week, we went in for our two-week follow-up visit, and the

> neuro was " pleased " with the progress, but wanted to fine-tune

> to see if we could get even better seizure control. So, on Friday,

> we went to a 3.5:1 ratio. The results are AMAZING!!! 's still

> having seizures, but they're less than 10 a day! He's more alert,

> he's connecting with us, and started rolling again!! We haven't

> seen that in months, and the neuros were afraid he was

> regressing!

>

> All along, our hope was that all the seizing was interfering with

> the development, and it wasn't the " unknown disease " causing

> him to regress. We just wanted to clear his mind and see what

> he was capable of.

>

> I just can't believe that my little boy is actually in there trying

to get

> out! I can see comprehension in his eyes; he reacts to words I

> say, songs I sing, and is even giving us high fives!!! Although I'm

> sure this sounds pretty immature for the average 15-month old,

> it's truly amazing for us!

>

> The next step is reducing the meds, the first being klonopin. I'm

> so nervous about that, because we tried it once before (when

> Nate wasn't on the diet), and it was HORRENDOUS. The

> withdrawal seizures were unbearable. I reminded the neuro of

> this, and she compromised and said we'd start in two weeks,

> and that we " deserved a status quo " period. So, we'll see how it

> goes, but for now, I'm just enjoying this little person who's

finally

> able to express himself; and we're finally getting to know each

> other.

>

> Meredith

> Mom to Nate

>

>

>

>

> " 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 ,

The neuro wants to start reducing by .1 mg a week, I believe (or

maybe even .1 mg every two weeks). He's currently on .8 mgs a day.

I've been wondering all along if this med has been hindering his

development, since we stopped seeing developmental progress after

starting it. Of course, that's also when the seizures first started

so who knows, really?

He's also on keppra, zonegran, and a B6 supplement. He was on

topomax, too, but we weaned that before the diet and it wasn't pretty!

Of course, right after I posted that message, I started seeing more

seizures. Isn't that always the way?? His ketones are lower now, too,

so I'll have to start doing some detective work. We gave him Miralax

the other night, and I'm wondering if that's part of the problem.

Gotta put a call in to the dietician, I guess.

Take care,

Meredith

> Great news Meredith, lovely to hear words like 'finally getting

to know

> each other', you must be on cloud 9. Long may it continue, and

here's hoping

> he keeps on improving till the seizures have all gone

> Hopefully the ketosis will help with any withdrawal fallout from

the

> klonipin wean, you are so right about these benzo weans being

horrendous,

> but I'm sure with each reduction you will see even more of

the 'real' Nate

> start to come out. These meds are so very dulling, it really is

quite

> amazing to see what is 'underneath' once they have gone, as we have

been

> finding out for ourselves over the past few months following the

ditching of

> a benzo after 3 long yrs.

> I think you are wise to agree to a stabilising period first,

though do

> keep an eye out for any signs that the continuing state of ketosis

is not

> raising the klonipin level, as toxicity induced seizures, if they

were to

> come calling, could cloud the whole issue and possibly make you

wonder about

> the wisdom of weaning. By keeping an eye out I mean watch for any

toxicity

> signs (like vomiting or drunkedness etc as med doses peak) which

usually

> appear shortly before the toxicity induced seizures - well this is

what used

> to happen to anyhow, so thought it was worth mentioning.

> What sort of tapering schedule is your neuro looking at? Is the

klonipin

> the only med he is on?

>

>

>

>

> ----- Original Message -----

> From: " mootz_y " <nhgertzes@m...>

>

> > I just can't believe that my little boy is actually in there

trying to

> get

> > out! I can see comprehension in his eyes; he reacts to words I

> > say, songs I sing, and is even giving us high fives!!! Although

I'm

> > sure this sounds pretty immature for the average 15-month old,

> > it's truly amazing for us!

> >

> > The next step is reducing the meds, the first being klonopin.

I'm

> > so nervous about that, because we tried it once before (when

> > Nate wasn't on the diet), and it was HORRENDOUS. The

> > withdrawal seizures were unbearable. I reminded the neuro of

> > this, and she compromised and said we'd start in two weeks,

> > and that we " deserved a status quo " period. So, we'll see how

it

> > goes, but for now, I'm just enjoying this little person who's

finally

> > able to express himself; and we're finally getting to know each

> > other.

> >

> > Meredith

> > Mom to Nate

[Guest guest]

Hi ,

The neuro wants to start reducing by .1 mg a week, I believe (or

maybe even .1 mg every two weeks). He's currently on .8 mgs a day.

I've been wondering all along if this med has been hindering his

development, since we stopped seeing developmental progress after

starting it. Of course, that's also when the seizures first started

so who knows, really?

He's also on keppra, zonegran, and a B6 supplement. He was on

topomax, too, but we weaned that before the diet and it wasn't pretty!

Of course, right after I posted that message, I started seeing more

seizures. Isn't that always the way?? His ketones are lower now, too,

so I'll have to start doing some detective work. We gave him Miralax

the other night, and I'm wondering if that's part of the problem.

Gotta put a call in to the dietician, I guess.

Take care,

Meredith

> Great news Meredith, lovely to hear words like 'finally getting

to know

> each other', you must be on cloud 9. Long may it continue, and

here's hoping

> he keeps on improving till the seizures have all gone

> Hopefully the ketosis will help with any withdrawal fallout from

the

> klonipin wean, you are so right about these benzo weans being

horrendous,

> but I'm sure with each reduction you will see even more of

the 'real' Nate

> start to come out. These meds are so very dulling, it really is

quite

> amazing to see what is 'underneath' once they have gone, as we have

been

> finding out for ourselves over the past few months following the

ditching of

> a benzo after 3 long yrs.

> I think you are wise to agree to a stabilising period first,

though do

> keep an eye out for any signs that the continuing state of ketosis

is not

> raising the klonipin level, as toxicity induced seizures, if they

were to

> come calling, could cloud the whole issue and possibly make you

wonder about

> the wisdom of weaning. By keeping an eye out I mean watch for any

toxicity

> signs (like vomiting or drunkedness etc as med doses peak) which

usually

> appear shortly before the toxicity induced seizures - well this is

what used

> to happen to anyhow, so thought it was worth mentioning.

> What sort of tapering schedule is your neuro looking at? Is the

klonipin

> the only med he is on?

>

>

>

>

> ----- Original Message -----

> From: " mootz_y " <nhgertzes@m...>

>

> > I just can't believe that my little boy is actually in there

trying to

> get

> > out! I can see comprehension in his eyes; he reacts to words I

> > say, songs I sing, and is even giving us high fives!!! Although

I'm

> > sure this sounds pretty immature for the average 15-month old,

> > it's truly amazing for us!

> >

> > The next step is reducing the meds, the first being klonopin.

I'm

> > so nervous about that, because we tried it once before (when

> > Nate wasn't on the diet), and it was HORRENDOUS. The

> > withdrawal seizures were unbearable. I reminded the neuro of

> > this, and she compromised and said we'd start in two weeks,

> > and that we " deserved a status quo " period. So, we'll see how

it

> > goes, but for now, I'm just enjoying this little person who's

finally

> > able to express himself; and we're finally getting to know each

> > other.

> >

> > Meredith

> > Mom to Nate