RE: Our first day was discouraging

[Guest guest]

Sounds like you had a pretty normal start. Mike was quite lethargic and

everything was a battle in the beginning. He didnt want to eat, play,

get out of bed, anything, but now I can hardly keep up with him.

Jenn

neildw_bristol wrote:

>

> Lisette did poorly on her first diet day. We've been reducing carbs

> for 2 to 3 days so she was becoming progressively more fatigued and

> disinterested. By 3pm today (after fasting all day) she was very

> tired and then had a small grand mal seizure (only the second in her

> life). She has always had only myoclonic and atonic. Sat and sun

> she had noticeably fewer myoclonics, but today she had more again.

>

> Well at the time of her grand mal her glucose was 49, which no one

> batted an eye at. Her ketones were 80 so she started on a 1/3

> calorie ketoshake, which she drank quickly and felt a little better

> afterward.

>

> However, she's still acting wierd, disoriented, fussy and is

> difficult to deal with.

>

> Lynette and I are both discouraged -- hoping this isn't a sign the

> diet isn't going to help her.

>

> Neil

>

>

> " 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]

Neil,

I think it's a shame that they use the fast to start kids out on this diet. It's

not considered necessary by a number of clinics these days (including ours).

It's just a rough way to start out..... I'm sorry she's had a tough go. It

should get better from here. The fatigue is very common at first. If she is

still on meds, you may see some issues with that as ketosis changes the way meds

are metabolized... as I'm sure you've gathered from reading this list for a

while. Don't despair ! There is much to be hopeful about! Our neuro insisted

that we promise to give the diet a six month committment because you really

can't know in even just the first few weeks. You're at the very beginning.....

hang in there!

Patti, mom to Katera...... Keto Kid for 21 months now.

Our first day was discouraging

Lisette did poorly on her first diet day. We've been reducing carbs

for 2 to 3 days so she was becoming progressively more fatigued and

disinterested. By 3pm today (after fasting all day) she was very

tired and then had a small grand mal seizure (only the second in her

life). She has always had only myoclonic and atonic. Sat and sun

she had noticeably fewer myoclonics, but today she had more again.

Well at the time of her grand mal her glucose was 49, which no one

batted an eye at. Her ketones were 80 so she started on a 1/3

calorie ketoshake, which she drank quickly and felt a little better

afterward.

However, she's still acting wierd, disoriented, fussy and is

difficult to deal with.

Lynette and I are both discouraged -- hoping this isn't a sign the

diet isn't going to help her.

Neil

[Guest guest]

Neil,

Can't remember, does Lisette have meds on board? If so, this could be her

problem, if not, you'll find a lot here have the same initial reaction, meds

or not.

Day 1 with was worse than pre diet, day 2 slightly better than pre

diet, gradual improvement till day 5, when all day seizures went - still

left with night seizures though.

It can definitely gets worse before it gets better, I think Freeman's book

says this too.

Dare I say that a new (or unusual for her) seizure type shows something is

changing, and to take this as a positive sign?

I was a complete wreck that first week, nerves stretched to the limit,

thought everything was going wrong, diet wasn't for him etc....Reached for

's diazepam many times, didn't give in to temptation though!!!!!!!!!

Keep us posted,

Hill in NZ

>

> Lisette did poorly on her first diet day. We've been reducing carbs

> for 2 to 3 days so she was becoming progressively more fatigued and

> disinterested. By 3pm today (after fasting all day) she was very

> tired and then had a small grand mal seizure (only the second in her

> life). She has always had only myoclonic and atonic. Sat and sun

> she had noticeably fewer myoclonics, but today she had more again.

>

> Well at the time of her grand mal her glucose was 49, which no one

> batted an eye at. Her ketones were 80 so she started on a 1/3

> calorie ketoshake, which she drank quickly and felt a little better

> afterward.

>

> However, she's still acting wierd, disoriented, fussy and is

> difficult to deal with.

>

> Lynette and I are both discouraged -- hoping this isn't a sign the

> diet isn't going to help her.

[Guest guest]

JC reacted much the same way when we started the diet. He just had no energy,

hang in there, it does get better, there are many different changes, some good

some not so good.

Try not to get too discouraged in the begining.

There is someone out here that can give you some words of encouragment.

This list has been a great help to me. BTW we are going into month 2 and seeing

some good stuff and little changes.

Janine and JC

Our first day was discouraging

Lisette did poorly on her first diet day. We've been reducing carbs

for 2 to 3 days so she was becoming progressively more fatigued and

disinterested. By 3pm today (after fasting all day) she was very

tired and then had a small grand mal seizure (only the second in her

life). She has always had only myoclonic and atonic. Sat and sun

she had noticeably fewer myoclonics, but today she had more again.

Well at the time of her grand mal her glucose was 49, which no one

batted an eye at. Her ketones were 80 so she started on a 1/3

calorie ketoshake, which she drank quickly and felt a little better

afterward.

However, she's still acting wierd, disoriented, fussy and is

difficult to deal with.

Lynette and I are both discouraged -- hoping this isn't a sign the

diet isn't going to help her.

Neil

[Guest guest]

Neil,

don't be discouraged! cried for two weeks straight when we started the

diet--it was horrible. Lethargic as well. Plus we didn't see much a

reduction in seizures. Then after a couple weeks perked up and was more

alert and energetic than we'd seen him in about a year. His demeanor has

been happier ever since. 's seizures have greatly lessened, but it took

almost 6 weeks until we saw noticable gains (we started 5/13/02). We're

still not seizure free, but still fine-tuning. This list has been an

enormous help. Hang it there--it gets better...really!

(mom to , age 4, autism, non-verbal, keto kid since 5/02)

----------

From: heppner1@...

To: ketogenic

Subject: Re: Our first day was discouraging

Date: Sun, Jul 7, 2002, 7:13 PM

> Lynette and I are both discouraged -- hoping this isn't a sign the

> diet isn't going to help her.

>

> Neil

>

[Guest guest]

Hi Neil & Lynette,

Don't be discouraged, Mallorie started much the same way. The whole

time she was in the hospital all she would do is let us pull her

around in a wagon while she just laid there. The day after we came

home from the hospital she had a tonic clonic seizure too. All the

doctors, nurses and dieticians who came by said it was normal for the

kids to act very lethargic for several days. They were right. When we

got home Mallorie began to do her normal activities and her energy

returned. You have followed Mallorie for some time now and know that

her and Lisette are a lot alike as far as seizures, response to

medications, etc...... Sounds like they are also sharing a similiar

response to the start of the diet.

As far as Lisette's glucose seeming to get low, that too can happen

when starting the diet. Mallorie's dropped into the lower 30s one

night and she was so fussy. I was very alarmed. They didn't do

anything for her except monitor her and by morning she was fine. I

don't think they really even bat an eye unless it gets into the 20s

when initiating the diet.

Neil, we have only been on the diet now for 4 weeks. Mallorie was

started on a 3.0:1 ratio with 1050 calories. She lost 4 lbs right off

the bat. We have had 2 calorie increases up to 1350. Her dietician

has been out for over 2 weeks and won't be back until next week. We

have increased her ratio to 3.5:1 because of the drop in ketones when

we increased her calories. Now she has gained weight and doesn't want

to eat like she did at first so we have dropped the calories back

down to 1200. We have a lot of fine tuning to do but so far it is

worth it.

I guess I'm telling you all this to let you know it may not be smooth

at first. Mallorie has had ups and downs already but we have seen

positive things that are worth it already. Hang in there, give

Lisette time to adjust to everything and expect to have ups and

downs. I am hoping you will have mostly ups with Lisette and that the

diet works quickly. The first few weeks may not be what you are

expecting and can even be difficult but things will get better!

Take care,

>

> Lisette did poorly on her first diet day. We've been reducing

carbs

> for 2 to 3 days so she was becoming progressively more fatigued and

> disinterested. By 3pm today (after fasting all day) she was very

> tired and then had a small grand mal seizure (only the second in

her

> life). She has always had only myoclonic and atonic. Sat and sun

> she had noticeably fewer myoclonics, but today she had more again.

>

> Well at the time of her grand mal her glucose was 49, which no one

> batted an eye at. Her ketones were 80 so she started on a 1/3

> calorie ketoshake, which she drank quickly and felt a little better

> afterward.

>

> However, she's still acting wierd, disoriented, fussy and is

> difficult to deal with.

>

> Lynette and I are both discouraged -- hoping this isn't a sign the

> diet isn't going to help her.

>

> Neil

[Guest guest]

Try not to get discouraged. It took our daughter a good month to get

her full energy back.

Koch Mom to keto diet since 6/00

[Guest guest]

Neil,

Sorry to hear you're having a rough go of it. From what I have read

on the list, that has been the experience of some and they have gone

on to find success with the diet. I have also seen alot of warnings

about not letting the keto team you are working with talk you into

giving up too soon. Sometimes the doctor is the first one to want to

throw in the towel as alot of them are not that enthusiastic about

the diet's effects on seizure control anyway. I hope that is not the

case for your family but something we should all be aware of

especially at the beginning. We are introducing the diet into our

lives in the weeks to come on an outpatient basis so I will be

interested to see how you all progress and anticipate hearing how

well your child will be doing in the near future (Positive attitude

can't hurt right?) Good Luck...hang in there and stay strong and

hopeful.

mom to pre-keto kid Karley, age 8.

[Guest guest]

Neil -- it does get better. We've just entered month three of the diet, and

though not seizure free, see small improvements all the time. Hunger has

disappeared -- and we're able to even drop calories now without much of a

fuss. The fasting is a drag. Some places don't even do it. But she will

get used to the food and hopefully the seizure picture will improve. Best,

jane, mom to Leo,7.

Re: Our first day was discouraging

Sounds like you had a pretty normal start. Mike was quite lethargic and

everything was a battle in the beginning. He didnt want to eat, play,

get out of bed, anything, but now I can hardly keep up with him.

Jenn

neildw_bristol wrote:

>

> Lisette did poorly on her first diet day. We've been reducing carbs

> for 2 to 3 days so she was becoming progressively more fatigued and

> disinterested. By 3pm today (after fasting all day) she was very

> tired and then had a small grand mal seizure (only the second in her

> life). She has always had only myoclonic and atonic. Sat and sun

> she had noticeably fewer myoclonics, but today she had more again.

>

> Well at the time of her grand mal her glucose was 49, which no one

> batted an eye at. Her ketones were 80 so she started on a 1/3

> calorie ketoshake, which she drank quickly and felt a little better

> afterward.

>

> However, she's still acting wierd, disoriented, fussy and is

> difficult to deal with.

>

> Lynette and I are both discouraged -- hoping this isn't a sign the

> diet isn't going to help her.

>

> Neil

>

>

> " 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, Neil! Please don't get too discouraged - we went through the

same kind of beginning. Jess was terribly lethargic for several

weeks into the diet, and we only saw moderate seizure control. It

took lots of fine-tuning (changing calories, adding bedtime snack,

doubling bedtime snack, etc.) and a drug drop to get where we are

now. But this didn't happen until we were on the diet for almost 3

months. hang in there and keep posting here. It will get better!

Carolyn, mom to , 4 years old, ketokid since 2/13/02, seizure-

free since 4/23/02, and Cade, 1 year old and perfectly healthy so far!

>

> Lisette did poorly on her first diet day. We've been reducing

carbs

> for 2 to 3 days so she was becoming progressively more fatigued and

> disinterested. By 3pm today (after fasting all day) she was very

> tired and then had a small grand mal seizure (only the second in

her

> life). She has always had only myoclonic and atonic. Sat and sun

> she had noticeably fewer myoclonics, but today she had more again.

>

> Well at the time of her grand mal her glucose was 49, which no one

> batted an eye at. Her ketones were 80 so she started on a 1/3

> calorie ketoshake, which she drank quickly and felt a little better

> afterward.

>

> However, she's still acting wierd, disoriented, fussy and is

> difficult to deal with.

>

> Lynette and I are both discouraged -- hoping this isn't a sign the

> diet isn't going to help her.

>

> Neil