Grrr... now her ketones are small! I'm so frustrated!

[Guest guest]

I am having such a frustrating time with this diet, I think I just need to vent!

At

first, we had to go up twice on my daughter's ratio because we couldn't get her

ketones high. Then we weaned her Depakote and her ketones were always

the largest (dark purple), and last week she started vomitting.

We dropped her ratio once, and she was still having very high ketones/

vomiting. We gave her a little more orange juice and went back to the

original level (3:1) and I just tested her and her ketones were small. We've

been fine tuning this for almost two months, now, and still can't get it right.

Plus she's tired, constipated, miserable and has lost too much weight (she

was under the fifth percentile to begin with, now she's lost another pound and

a half). She hasn't grown at all since we started and I'm getting worried.

Will

we ever get to a comfortable place with this diet? I really feel like just

giving

up, right now.

The only positive thing is that she's not having seizures, but that may be

because of a new medicine we had to add when we weaned the Depakote

(up until starting this med she was having seizures).

I'm just really not sure what to do right now. If you have any advice or

encouragement, I think I really need it. Sorry for venting.

(mom to Daphne, 10 months old with Infantile Spasms)

[Guest guest]

Hi ...I can relate with the diet. It's so incredibly hard most of the

time for me also! I can't get it right and when I think I can get her to

eat something that will work, it will last a day and then I have to

re-invent something else! I do like to hear that the depakote is making

the ketones higher for your daughter, though. I can't seem to get my

daughters high enough. That's why we are taking her off it. Today is the

first day in 2 years to be off it. She turned 6 last week. It's been a

long 2 years. I just want her back and happy again. Sometimes she's so

confused and it breaks my heart. I wish I could take it all away!

Please feel free to vent to me anytime because I know your pain. Some days

are good and some are not. It's a day to day process and there are people

out there with some great news that hopefully we will also get to say. It

just may take us a bit longer, but we'll get there. Vent, my dear...I

know it helps me sometimes!

....Sheridan's Mom

At 12:58 PM 8/16/2004, you wrote:

>I am having such a frustrating time with this diet, I think I just need to

>vent! At

>first, we had to go up twice on my daughter's ratio because we couldn't

>get her

>ketones high. Then we weaned her Depakote and her ketones were always

>the largest (dark purple), and last week she started vomitting.

>

>We dropped her ratio once, and she was still having very high ketones/

>vomiting. We gave her a little more orange juice and went back to the

>original level (3:1) and I just tested her and her ketones were

>small. We've

>been fine tuning this for almost two months, now, and still can't get it

>right.

>Plus she's tired, constipated, miserable and has lost too much weight (she

>was under the fifth percentile to begin with, now she's lost another pound

>and

>a half). She hasn't grown at all since we started and I'm getting

>worried. Will

>we ever get to a comfortable place with this diet? I really feel like

>just giving

>up, right now.

>

>The only positive thing is that she's not having seizures, but that may be

>because of a new medicine we had to add when we weaned the Depakote

>(up until starting this med she was having seizures).

>

>I'm just really not sure what to do right now. If you have any advice or

>encouragement, I think I really need it. Sorry for venting.

>

> (mom to Daphne, 10 months old with Infantile Spasms)

>

>

>

> " 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 & all our other frustrated Mommies, Daddies, Grandparents, etc,

Hannah and Daphne have so much in common. Hannah is on a 4:1 ratio and not

spilling ketones. Her only " food " is the ketocal...yes, very expensive, and she

is only getting 16OZ a day...still seizing. SO, I am stalking her nutritionist

in hopes she will agree with me to up Hannah's ratio to 4.5:1. We have already

started weaning her from the Phenobarbital. She now takes 250mg/day Keppra and

45mg/day Phenobarbital. Her skin biopsy came back clear, so far her muscle

biopsy from 3 1/2 weeks ago has also come back with no abnormalities. We have

been advocating for little Hannah since day 1. She has spent more time in the

hospital than out. well meaning family and friends keep asking how the diet is

going and what the tests results are. They continue to ask me how far behind I

think Hannah is and if she will ever catch up. My mother in law consistently

reminds me of the things her friend's grand daughter can do that Hannah can't.

I remind them the lesson Hannah is teaching us in faith and patience. Well, my

patience is wearing thin. I want results and answers. My husband has virtually

" checked out... " working 13 hours a day, golfing on the weekend, and now

coaching basketball 2 nights a week. I keep waiting for my " breakdown, " but it

doesn't come. Who then would hold it all together? I try to be positive, but

some days are harder than others.

....mom to Hannah, 7 months, infantile seizures & a mystery to her many

doctors.

Grrr... now her ketones are small! I'm so frustrated!

I am having such a frustrating time with this diet, I think I just need to

vent! At

first, we had to go up twice on my daughter's ratio because we couldn't get

her

ketones high. Then we weaned her Depakote and her ketones were always

the largest (dark purple), and last week she started vomitting.

We dropped her ratio once, and she was still having very high ketones/

vomiting. We gave her a little more orange juice and went back to the

original level (3:1) and I just tested her and her ketones were small.

We've

been fine tuning this for almost two months, now, and still can't get it

right.

Plus she's tired, constipated, miserable and has lost too much weight (she

was under the fifth percentile to begin with, now she's lost another pound and

a half). She hasn't grown at all since we started and I'm getting worried.

Will

we ever get to a comfortable place with this diet? I really feel like just

giving

up, right now.

The only positive thing is that she's not having seizures, but that may be

because of a new medicine we had to add when we weaned the Depakote

(up until starting this med she was having seizures).

I'm just really not sure what to do right now. If you have any advice or

encouragement, I think I really need it. Sorry for venting.

(mom to Daphne, 10 months old with Infantile Spasms)

" 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, . Yes, weaning the Depakote seemed to make a HUGE

difference. Before she'd start out every day small and only get up to large in

the late evening, no matter what ratio. Within two days of weaning, they were

always in the large range.

I hope your daughter has the same response (although hopefully not the

bouncing too high and then too low, like we're having). Thanks for listening

to my vent!

> >I am having such a frustrating time with this diet, I think I just need to

> >vent! At

> >first, we had to go up twice on my daughter's ratio because we couldn't

> >get her

> >ketones high. Then we weaned her Depakote and her ketones were

always

> >the largest (dark purple), and last week she started vomitting.

> >

> >We dropped her ratio once, and she was still having very high ketones/

> >vomiting. We gave her a little more orange juice and went back to the

> >original level (3:1) and I just tested her and her ketones were

> >small. We've

> >been fine tuning this for almost two months, now, and still can't get it

> >right.

> >Plus she's tired, constipated, miserable and has lost too much weight (she

> >was under the fifth percentile to begin with, now she's lost another pound

> >and

> >a half). She hasn't grown at all since we started and I'm getting

> >worried. Will

> >we ever get to a comfortable place with this diet? I really feel like

> >just giving

> >up, right now.

> >

> >The only positive thing is that she's not having seizures, but that may be

> >because of a new medicine we had to add when we weaned the Depakote

> >(up until starting this med she was having seizures).

> >

> >I'm just really not sure what to do right now. If you have any advice or

> >encouragement, I think I really need it. Sorry for venting.

> >

> > (mom to Daphne, 10 months old with Infantile Spasms)

> >

> >

> >

> > " 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 & all our other frustrated Mommies, Daddies, Grandparents, etc,

Hannah and Daphne have so much in common. Hannah is on a 4:1 ratio and not

spilling ketones. Her only " food " is the ketocal...yes, very expensive, and she

is only getting 16OZ a day...still seizing. SO, I am stalking her nutritionist

in hopes she will agree with me to up Hannah's ratio to 4.5:1. We have already

started weaning her from the Phenobarbital. She now takes 250mg/day Keppra and

45mg/day Phenobarbital. Her skin biopsy came back clear, so far her muscle

biopsy from 3 1/2 weeks ago has also come back with no abnormalities. We have

been advocating for little Hannah since day 1. She has spent more time in the

hospital than out. well meaning family and friends keep asking how the diet is

going and what the tests results are. They continue to ask me how far behind I

think Hannah is and if she will ever catch up. My mother in law consistently

reminds me of the things her friend's grand daughter can do that Hannah can't.

I remind them the lesson Hannah is teaching us in faith and patience. Well, my

patience is wearing thin. I want results and answers. My husband has virtually

" checked out... " working 13 hours a day, golfing on the weekend, and now

coaching basketball 2 nights a week. I keep waiting for my " breakdown, " but it

doesn't come. Who then would hold it all together? I try to be positive, but

some days are harder than others.

....mom to Hannah, 7 months, infantile seizures & a mystery to her many

doctors.

Grrr... now her ketones are small! I'm so frustrated!

I am having such a frustrating time with this diet, I think I just need to

vent! At

first, we had to go up twice on my daughter's ratio because we couldn't get

her

ketones high. Then we weaned her Depakote and her ketones were always

the largest (dark purple), and last week she started vomitting.

We dropped her ratio once, and she was still having very high ketones/

vomiting. We gave her a little more orange juice and went back to the

original level (3:1) and I just tested her and her ketones were small.

We've

been fine tuning this for almost two months, now, and still can't get it

right.

Plus she's tired, constipated, miserable and has lost too much weight (she

was under the fifth percentile to begin with, now she's lost another pound and

a half). She hasn't grown at all since we started and I'm getting worried.

Will

we ever get to a comfortable place with this diet? I really feel like just

giving

up, right now.

The only positive thing is that she's not having seizures, but that may be

because of a new medicine we had to add when we weaned the Depakote

(up until starting this med she was having seizures).

I'm just really not sure what to do right now. If you have any advice or

encouragement, I think I really need it. Sorry for venting.

(mom to Daphne, 10 months old with Infantile Spasms)

" 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 am glad, at least, that Hanna's biopsies look normal. That's the next step in

Daphne's testing and I am not looking forward to it, to put it mildly.

Sorry she's having so much trouble with the diet. At least we know we're not

the only ones, though. If nothing else it's nice to know there's a place where

you can talk to others who are going through the same things.

I know what you mean about relatives asking questions. I guess they mean

well, but I am so tired of hearing " has Daphne started rolling, yet? " Beleive

me, when she does, the whole world will know

It is really hard when you aren't getting support, though. That's a shame you

feel like you are in this on your own. Does Hannah get nursing care? That's

something Daphne's pediatrician has looked into for us, and under our

insurance we qualify for a nurse to come out a few hours a week to give me

some respite. We're still in the process of applying to insurance, but I am

looking forward to getting a little break.

Remember you can always email me if you ever need to talk, vent, whatever.

(mom to Daphne, 10 months old with Infantile Spasms)

>

>

> Hi & all our other frustrated Mommies, Daddies, Grandparents, etc,

> Hannah and Daphne have so much in common. Hannah is on a 4:1 ratio

and not spilling ketones. Her only " food " is the ketocal...yes, very expensive,

and she is only getting 16OZ a day...still seizing. SO, I am stalking her

nutritionist in hopes she will agree with me to up Hannah's ratio to 4.5:1. We

have already started weaning her from the Phenobarbital. She now takes

250mg/day Keppra and 45mg/day Phenobarbital. Her skin biopsy came back

clear, so far her muscle biopsy from 3 1/2 weeks ago has also come back with

no abnormalities. We have been advocating for little Hannah since day 1. She

has spent more time in the hospital than out. well meaning family and friends

keep asking how the diet is going and what the tests results are. They

continue to ask me how far behind I think Hannah is and if she will ever catch

up. My mother in law consistently reminds me of the things her friend's grand

daughter can do that Hannah can't. I remind them the lesson Hannah is

teaching us in faith and patience. Well, my patience is wearing thin. I want

results and answers. My husband has virtually " checked out... " working 13

hours a day, golfing on the weekend, and now coaching basketball 2 nights a

week. I keep waiting for my " breakdown, " but it doesn't come. Who then would

hold it all together? I try to be positive, but some days are harder than

others.

>

> ....mom to Hannah, 7 months, infantile seizures & a mystery to her

many doctors.

> Grrr... now her ketones are small! I'm so frustrated!

>

>

> I am having such a frustrating time with this diet, I think I just need to

vent!

At

> first, we had to go up twice on my daughter's ratio because we couldn't get

her

> ketones high. Then we weaned her Depakote and her ketones were

always

> the largest (dark purple), and last week she started vomitting.

>

> We dropped her ratio once, and she was still having very high ketones/

> vomiting. We gave her a little more orange juice and went back to the

> original level (3:1) and I just tested her and her ketones were small.

We've

> been fine tuning this for almost two months, now, and still can't get it

right.

> Plus she's tired, constipated, miserable and has lost too much weight (she

> was under the fifth percentile to begin with, now she's lost another pound

and

> a half). She hasn't grown at all since we started and I'm getting worried.

Will

> we ever get to a comfortable place with this diet? I really feel like just

giving

> up, right now.

>

> The only positive thing is that she's not having seizures, but that may be

> because of a new medicine we had to add when we weaned the Depakote

> (up until starting this med she was having seizures).

>

> I'm just really not sure what to do right now. If you have any advice or

> encouragement, I think I really need it. Sorry for venting.

>

> (mom to Daphne, 10 months old with Infantile Spasms)

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto

team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

& ,

There are so many of us in this group who feel exactly the same way.

That's why this group is so comforting to so many of us. You are not

the only one going through this! Hang in there....My son, , has

also been diagnosed with infantile seizures, except that he is 5

years old. He also is very delayed. He has been on the ketogenic

diet since 1/27/04 with great success.... for only 3 weeks. I have

tried everything under the sun to make the diet work. Finally 3 days

ago, we put him on Vigabatrin. So far, he is doing much better.

However, it is way too soon to get too excited. Has your doctor

talked to you about Vigabatrin? It is not FDA approved for good

reason. It can harm eyesight, but we are very desparate. Hang in

there... we are all in this together!

Ann

> Hi & all our other frustrated Mommies, Daddies, Grandparents,

etc,

> Hannah and Daphne have so much in common. Hannah is on a 4:1 ratio

and not spilling ketones. Her only " food " is the ketocal...yes, very

expensive, and she is only getting 16OZ a day...still seizing. SO, I

am stalking her nutritionist in hopes she will agree with me to up

Hannah's ratio to 4.5:1. We have already started weaning her from the

Phenobarbital. She now takes 250mg/day Keppra and 45mg/day

Phenobarbital. Her skin biopsy came back clear, so far her muscle

biopsy from 3 1/2 weeks ago has also come back with no abnormalities.

We have been advocating for little Hannah since day 1. She has spent

more time in the hospital than out. well meaning family and friends

keep asking how the diet is going and what the tests results are.

They continue to ask me how far behind I think Hannah is and if she

will ever catch up. My mother in law consistently reminds me of the

things her friend's grand daughter can do that Hannah can't. I

remind them the lesson Hannah is teaching us in faith and patience.

Well, my patience is wearing thin. I want results and answers. My

husband has virtually " checked out... " working 13 hours a day,

golfing on the weekend, and now coaching basketball 2 nights a week.

I keep waiting for my " breakdown, " but it doesn't come. Who then

would hold it all together? I try to be positive, but some days are

harder than others.

>

> ....mom to Hannah, 7 months, infantile seizures & a

mystery to her many doctors.

> Grrr... now her ketones are small! I'm so

frustrated!

>

>

> I am having such a frustrating time with this diet, I think I

just need to vent! At

> first, we had to go up twice on my daughter's ratio because we

couldn't get her

> ketones high. Then we weaned her Depakote and her ketones were

always

> the largest (dark purple), and last week she started vomitting.

>

> We dropped her ratio once, and she was still having very high

ketones/

> vomiting. We gave her a little more orange juice and went back

to the

> original level (3:1) and I just tested her and her ketones were

small. We've

> been fine tuning this for almost two months, now, and still

can't get it right.

> Plus she's tired, constipated, miserable and has lost too much

weight (she

> was under the fifth percentile to begin with, now she's lost

another pound and

> a half). She hasn't grown at all since we started and I'm

getting worried. Will

> we ever get to a comfortable place with this diet? I really

feel like just giving

> up, right now.

>

> The only positive thing is that she's not having seizures, but

that may be

> because of a new medicine we had to add when we weaned the

Depakote

> (up until starting this med she was having seizures).

>

> I'm just really not sure what to do right now. If you have any

advice or

> encouragement, I think I really need it. Sorry for venting.

>

> (mom to Daphne, 10 months old with Infantile Spasms)

>

>

>

> " 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]

,

To me, it sounds like you are doing great and have terrific success. You

have no seizures and were able to wean that awful Depakote! We were

lucky in that Depakote was not one of the meds we used, but I have read

lots of stories here about it that made my skin crawl, especially when

combined with the diet.

My only advice would be to keep up the good work and be patient.

You should make sure that your vitamin and mineral supplement is

adequate. That is very important. Being tired and constipated and

miserable might be a sign of needing better supplementation. Losing

weight is normally a sign that the calories should be increased. Go very

slowly if you think that is needed as it can also change the ketones and

cause seizures. Even 25 calories a day can make a difference.

We are still fine-tuning after 3 and a half years. It never ends. We try

to make changes no more than every 2 months now that we are weaning.

Bill

wrote:

> I am having such a frustrating time with this diet, I think I just need to

vent! At

> first, we had to go up twice on my daughter's ratio because we couldn't get

her

> ketones high. Then we weaned her Depakote and her ketones were always

> the largest (dark purple), and last week she started vomitting.

>

> We dropped her ratio once, and she was still having very high ketones/

> vomiting. We gave her a little more orange juice and went back to the

> original level (3:1) and I just tested her and her ketones were small.

We've

> been fine tuning this for almost two months, now, and still can't get it

right.

> Plus she's tired, constipated, miserable and has lost too much weight (she

> was under the fifth percentile to begin with, now she's lost another pound and

> a half). She hasn't grown at all since we started and I'm getting worried.

Will

> we ever get to a comfortable place with this diet? I really feel like just

giving

> up, right now.

>

> The only positive thing is that she's not having seizures, but that may be

> because of a new medicine we had to add when we weaned the Depakote

> (up until starting this med she was having seizures).

>

> I'm just really not sure what to do right now. If you have any advice or

> encouragement, I think I really need it. Sorry for venting.

>

> (mom to Daphne, 10 months old with Infantile Spasms)

>

>

>

>

[Guest guest]

Have you checked glucose levels ? If she is continuing to lose weight,

she might now be breaking down muscle mass to give her extra fuel, this will

usually in turn lower ketones down.

Ditching the depakote may have taken away the 'dep/diet' interaction that

occur ( ie - both compete in fatty acid metabolism pathways, and dep often wins

the battle) so that is prob why her ketones shot up as a result...but what may

also have happened, is her metabolism may now be a lot quicker now. Dep often

causes weight gain as a side effect, one of the main reasons being it makes

everything quite sluggish, so taking it away may mean her calorie needs have now

changed, ie - she may now need more to keep the balance right.

Sooooo if you keep seeing a trend of weight loss, this may be what is going

on. Especially if she is tired with it all, lack of energy etc could be pointing

to insufficient cals as well.

Re the constipation - this prob will make her miserable, do you use cal/mag

supplements? They are the only thing that has ever worked for , even one

day with not enough mag supplement sees constipation creeping back in here. He

is on the capsules with a 1:1 ratio - ie - same cal as mag dose per day.

He needs between 500-600 mgs per day, but every kiddie will be diff as to what

their own needs are.

Having no seizures through this all IS a positive - a huge one, part of me

would actually be swayng towards the thought that it may well be the new med

added (was it vigabitrin?) doing the trick, as if she has gone catabolic in any

way, diet wise this is when you would poss be seeing seizures. I guess the only

way to know for sure would be to allow her to go out of ketosis and keep the med

the same, but there is always the risk of having seizures break through - either

because it is the diet working for her, or because she needs the diet and the

med in combination...

Yep, it can be very frustrating, and yep, venting is a neccessary

----- Original Message -----

From:

I am having such a frustrating time with this diet, I think I just need to

vent! At

first, we had to go up twice on my daughter's ratio because we couldn't get

her

ketones high. Then we weaned her Depakote and her ketones were always

the largest (dark purple), and last week she started vomitting.

We dropped her ratio once, and she was still having very high ketones/

vomiting. We gave her a little more orange juice and went back to the

original level (3:1) and I just tested her and her ketones were small.

We've

been fine tuning this for almost two months, now, and still can't get it

right.

Plus she's tired, constipated, miserable and has lost too much weight (she

was under the fifth percentile to begin with, now she's lost another pound

and

a half). She hasn't grown at all since we started and I'm getting worried.

Will

we ever get to a comfortable place with this diet? I really feel like just

giving

up, right now.

The only positive thing is that she's not having seizures, but that may be

because of a new medicine we had to add when we weaned the Depakote

(up until starting this med she was having seizures).

I'm just really not sure what to do right now. If you have any advice or

encouragement, I think I really need it. Sorry for venting.

(mom to Daphne, 10 months old with Infantile Spasms)