Re: home from the hospital / what a trip!

November 10, 2004

Your experience sounds very similar to ours and I know how hard it is to

watch your child waste away to skin and bones. But.......no seizures is

great!!

Congrats. You are on the right track.

November 10, 2004

and Adrielle,

Men don't cry. When I read your story, my eyes started to well up with

absolute joy. I was reminded of Jim Abrahms when he chocked up on the

Dateline segment, talking about getting a phone call from a successful

keto family.

Your story of the hospital visit sums up all the pros and cons of

starting the diet with a fast in the hospital. It was horrible and you

wound up seizure-free! Congratulations on your keto initiation!

It is hard to imagine how much success that keto team has with families

who don't have extra outside support.

Bill

byhisgrace08 wrote:

>

> Hi everyone,

>

> Princess Adrielle and I are now home from the hospital. Actually, we

> came home late in the day on Fri. 11/5. I wanted to check in with

> you all sooner, but it has been busy here as you all can imagine

> with starting the diet and other life stuff.

>

> Our hospital visit was absolutely horrible! It was the worst week I

> have ever had with my little princess. She ended up getting the flu

> and was vomitting for almost 2 days. She couldn't even keep down

> 2cc of water. She lost 6 pounds, looked horrible and was incredibly

> weak. Believe me when I tell you that she didn't have 6 pounds to

> lose. She is somewhat tall for her age but very slender. Her eyes

> were dark and sunken into her head, you could count every rib, every

> bump in her spine, her shoulder blades were clearly defined and her

> little tummy was sunk in too. The image in my mind is still very

> clear and if I think on it to long I begin to cry.

>

> Lets move on..... our dietician..... not great. The only thing she

> taught me was how to calculate meals, period. Reading " the book " is

> required before you enter the hospital and now I know why, she

> doesn't plan on teaching you anything while you are there. I asked

> as many questions as I could, but with " A " being in the condition

> she was and getting very little sleep, I could barely think

> straight! I thought she would at least cover the basics if nothing

> else. Wrong, wrong wrong. She had a very " hands off " approach the

> entire time we were there and she definitely doesn't follow a strict

> Hopkins protocol. The hospital itself is poorly set up for

> beginning the diet. They say they have a keto team but it is

> obvious that they do not communicate well.... the right hand has no

> idea what the left hand is doing. The kitchen staff has no training

> in the diet other than knowing how to weigh the food. Therefore,

> they substitute items because they don't know they can't. We

> calculated for regular non-sweet applesauce for lunch/dinner...

> sometimes it was regular(w/sugar)applesauce, sometimes baby food

> applesauce.... big difference! One day we didn't get breakfast

> until lunch time!!!!!!!!!!!!!!!

>

> Well, amazingly enough we successfully started the diet in spite of

> everything. I couldn't wait to get home so I could get things in

> order myself. I knew I had all of you to turn to with questions and

> for support. Sorry if I rambled a bit but you are the only people I

> have to talk to who can truly understand my frustrations.

>

> So now on a good note...... Princess Adrielle has not had one

> seizure since beginning the diet!!! Wha-hoo!! Most days we were

> seeing around 50-60 per day so you can imagine my joy! She is still

> a little weak and of course tired, but she is recovering well. I

> know I have questions, but I'll have to save them for later. It's

> time for her royal highness to have breakfast!

>

> Love to all,

> & Princess Adrielle, keto-kid & seizure free since 11/5!!!

>

November 10, 2004

I would guess that Adrielle did not have the flu. Adjusting to

increased ketone levels can cause vomiting, lethargy, and loss of

apitite for many days. Did her vomiting start on about day 3 of the

hospital stay?

My son lost 10 pounds when he started keto. He told me he looked

like those " walking skeletons " in the Nazi concentration camps. He

gined the weight back, and now sometimes I worry that he is getting

too many calories--he is just a little plump. THe nurse, however

says he is at the right weight for his size.

Don't worry, with this group and your own keto meal planner, you

can make this diet work just fine. Many of us overcame rough

starts. I stopped using our dieticians when they sent a pizza

recipe with no cheese, and a non dairy recipe with pure vegetable

oil and no suggestions on how to get my son to take it. What, drink

3/4 of a cup of pure vegetable oil? Now, I only use them to

calculate numbers when we make a change.

The great news is the seizure control. That is fantastic! Just

a word of advice, though. Just in case the seizures come back, do

not be devestated. Early control is a very good sign that you will

gain complete control, even if you have temporary setbacks.

Gretchen

>

> Hi everyone,

>

> Princess Adrielle and I are now home from the hospital. Actually,

we

> came home late in the day on Fri. 11/5. I wanted to check in with

> you all sooner, but it has been busy here as you all can imagine

> with starting the diet and other life stuff.

>

> Our hospital visit was absolutely horrible! It was the worst week

I

> have ever had with my little princess. She ended up getting the

flu

> and was vomitting for almost 2 days. She couldn't even keep down

> 2cc of water. She lost 6 pounds, looked horrible and was

incredibly

> weak. Believe me when I tell you that she didn't have 6 pounds to

> lose. She is somewhat tall for her age but very slender. Her

eyes

> were dark and sunken into her head, you could count every rib,

every

> bump in her spine, her shoulder blades were clearly defined and

her

> little tummy was sunk in too. The image in my mind is still very

> clear and if I think on it to long I begin to cry.

>

> Lets move on..... our dietician..... not great. The only thing

she

> taught me was how to calculate meals, period. Reading " the book "

is

> required before you enter the hospital and now I know why, she

> doesn't plan on teaching you anything while you are there. I

asked

> as many questions as I could, but with " A " being in the condition

> she was and getting very little sleep, I could barely think

> straight! I thought she would at least cover the basics if

nothing

> else. Wrong, wrong wrong. She had a very " hands off " approach

the

> entire time we were there and she definitely doesn't follow a

strict

> Hopkins protocol. The hospital itself is poorly set up for

> beginning the diet. They say they have a keto team but it is

> obvious that they do not communicate well.... the right hand has

no

> idea what the left hand is doing. The kitchen staff has no

training

> in the diet other than knowing how to weigh the food. Therefore,

> they substitute items because they don't know they can't. We

> calculated for regular non-sweet applesauce for lunch/dinner...

> sometimes it was regular(w/sugar)applesauce, sometimes baby food

> applesauce.... big difference! One day we didn't get breakfast

> until lunch time!!!!!!!!!!!!!!!

>

> Well, amazingly enough we successfully started the diet in spite

of

> everything. I couldn't wait to get home so I could get things in

> order myself. I knew I had all of you to turn to with questions

and

> for support. Sorry if I rambled a bit but you are the only people

I

> have to talk to who can truly understand my frustrations.

>

> So now on a good note...... Princess Adrielle has not had one

> seizure since beginning the diet!!! Wha-hoo!! Most days we were

> seeing around 50-60 per day so you can imagine my joy! She is

still

> a little weak and of course tired, but she is recovering well. I

> know I have questions, but I'll have to save them for later. It's

> time for her royal highness to have breakfast!

>

> Love to all,

> & Princess Adrielle, keto-kid & seizure free since 11/5!!!

November 10, 2004

,

Great news that you are home and that Adrielle is seizure free so

far!! I'm so sorry to hear that you had such a bad experience in the

hospital, but unfortunately, it isn't all that uncommon. At least

that's over now and you can settle into a keto routine at home,

hopefully with continued seizure freedom. Even though we had a great

experience in the hospital, we did have one food issue with dietary

and nursing. Our dietician straightened that out right away and we

received a personal apology from the dietary manager. Warning....

you have to be on your toes at all times from now on when taking

Adrielle for medical care, because most docs and nurses simply do not

understand the diet. They won't even think about the amount of carb

that is in meds they prescribe... just not used to doing that. If

she is hospitalized or in the ER and needs an IV, make sure it does

not contain glucose. Ask to see the bag before they infuse anything

into her. I don't think this stuff would happen at our keto center

but we live 300 miles from them. All of our " primary " care is

received in our small town or the next biggest town, where no one

really has experience with keto.

I'm also sorry you didn't get any teaching while you were there.

But, you will get good suggestions, if needed, from members of the

group based on their experience. Are you calculating your own meals?

I think it is a huge help to do your own but some dieticians want to

do it themselves.

My is also tall and skinny and lost weight on the diet

initially, too. She's gained and lost during the time she's been on

the diet. She's about 2 lbs heavier than when she started but

continued to grow normally in height. She looks very skinny now and

it's hard to buy clothes for her, especially pants, but she is very

healthy. Our dietician told us that kids with a lower BMI tend to do

better on the diet because they tend not to store fat. One can

certainly fine tune around that, but it might take more time and

effort. So, maybe Adrielle's ht./wt. combination is somewhat of a

blessing in disguise, like 's. I hope she's been feeling a bit

better the past few days. I does take time for the body to get used

to " running " on fat and the presence of ketones.

The wonderful thing is that Adrielle hasn't had a seizure in several

days. So, you know the diet works for her. You may still need to

fine tune--time will tell--but things are great now... woo HOO!

Enjoy every minute!! Is she still on meds? If so, and seizures do

return, meds are usually the primary suspect. If not, you might

never see another seizure... we haven't!!

Give Adrielle a hug and tell her she's a STAR!

Cammie,

mom to , age 8, seizure free for 15 months.

November 10, 2004

,

Only time for a quick note--sorry about your experience at the hospital.

After I read it, I had to go back through my old mail and see if you

just happened to be the new member who was going to CHP to initiate the

diet. I took my daughter there (year ago July) and our week was not a

whole lot better--more because Claire was already in such bad shape from

the seizures and, esp. the wrong drugs. It was the following 6 months

that were not much better--the diet support was just not there, thank

God for this group. Anyway, long story short--we go to CHoP in Phila.

now. I am guessing you live in the area? I'm a hour farther north

(just above Clarion). How old is Adrielle? My Claire, also a princess ;

) is 5-1/2.

Contact me off-group if you'd like to compare notes or want some local

support.

~Barbara

p.s. That's so wonderful that Adrielle is seizure-free!!!!