Re: New Here - thinking about starting the diet

[Guest guest]

Hello, ! So glad to see a friend here from CN2!! You will love it here

and will learn so much from these parents. I am still so new to this but this

site has been a life saver for me!!

Hugs to Jenelle!

, mom to Langan

New Here - thinking about starting the diet

Hello, my name is , and my daughter Jenelle is almost 14 months old

(10/22/02) and suffers from Infantile Spasms, myoclonic seizures and has global

development delays, sensory issues and hypotonia. We've tried ACTH, Vigabatrin,

B6 and of course she's been on Phenobarbital.

Her reaction to ACTH was frightening in that her seizures increased so that

she was sub-clinical status. After ACTH we started Vigabatrin. It seems to have

helped her spasms, but not her myoclonic type seizures. We are currently

weaning her from Phenobarbital to see if the Vigabatrin alone will do better.

She also takes 100mg of B6 a day, which also seems to have helped the seizures.

I believe our next option will be the diet, and I'm starting to educate myself

and my husband about all that it entails. My biggest fear is the fasting

period. Jenelle does not use her hands and does not feed herself. She is only

eating pureed foods that are spoon fed to her - most parents who've done the

diet tell me that may make it easier! We live in Southern California (Orange

County) and are on the waiting list for the Keto Program at UCLA.

Looking forward to gaining information from parents who know best. Thanks!

with Jack born on 01/01/01 and Jenelle born 10/22/02 with hypotonia,

global delays, sensory issues, Infantile Spasms and myoclonic seizures.

" 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!

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[Guest guest]

Welcome ,

There is lots of experience and support here. I'm so glad you are

considering the diet. You are wise to learn as much as you can

before you start.

Our 7 yr. old daughter started the diet in August. I was very

nervous about the fasting. We eased into it by decreasing the heavy

carbs about a week before she was admitted. The day before

admission, we gave her only a small serving of fruit with each meal.

She began fasting at 8p.m. and by the time we got through the

admission process and into a room, she was in light ketosis. She had

her first eggnog meal at 4p.m. Those 20 hours went by really fast.

By the time she got her first eggnog, she was hungry enough to drink

it right down. So, I worried for no reason. I think there is

something about the thought of starving your child that makes

everyone nervous about the fasting.

If you do decide to do the diet, I have to second the idea that you

really have to give it a good try. My daughter was seizure free from

the beginning, which was wonderful, but that is not the most common

scenario. Usually you have to fine tune the diet a little... or a

lot!! We were asked to make at least a 3 month committment, but

preferably 6 months, so that the keto team could manipulate the diet

and make it the best it can be. In my short time as a keto mom, I've

seen some folks quit way too soon. The diet doesn't work for

everyone but you want to be able to say that you gave it a good,

honest try.

When we initiated the diet, there was a dietician from Orange County

Children's Hospital with us, observing our dietician and our

initiation. My understanding is that they are starting a keto

program there. I'm sure she said that one of the neuros who was at

our hospital for many years moved to Orange and will head up the keto

team. I would think UCLA is very good, too... just curious.

Good luck in your keto education. Feel free to ask questions here.

Cammie

[Guest guest]

,

My son is 9 months old and has suffered from infantile spasms and

myoclonic seizures since he was 6 weeks old. He too is really delayed.

ACTH has been fighting but has been the only drug that has helped.

We've tapered it 3 times and all three times my son has ended up on a

ventilator. So needless to say really, that I have searched and our

neuro team has searched for any and all things to help. It wasn't until

our last admission to the ICU that the neuro team passed and suggested

us trying some new research regarding B6. Well the research was that

they increase the B6 to 300-500mg per kilo 4x's a day. We are taking

large amounts of B6. In Japan it has halted infantile spasms, in many

children. The research, I was told is really new but thought you might

like having it passed on. If an increase in B6 would help in accord

with the diet or instead of, it just seems nice. Just a thought if you

need more info I could certainly pass it on. The neuro team I work with

is located at Children's Hospital in DC.

, mom to Ethan.

New Here - thinking about starting the diet

Hello, my name is , and my daughter Jenelle is almost 14 months old

(10/22/02) and suffers from Infantile Spasms, myoclonic seizures and has

global development delays, sensory issues and hypotonia. We've tried

ACTH, Vigabatrin, B6 and of course she's been on Phenobarbital.

Her reaction to ACTH was frightening in that her seizures increased so

that she was sub-clinical status. After ACTH we started Vigabatrin. It

seems to have helped her spasms, but not her myoclonic type seizures.

We are currently weaning her from Phenobarbital to see if the Vigabatrin

alone will do better. She also takes 100mg of B6 a day, which also

seems to have helped the seizures.

I believe our next option will be the diet, and I'm starting to educate

myself and my husband about all that it entails. My biggest fear is the

fasting period. Jenelle does not use her hands and does not feed

herself. She is only eating pureed foods that are spoon fed to her -

most parents who've done the diet tell me that may make it easier! We

live in Southern California (Orange County) and are on the waiting list

for the Keto Program at UCLA.

Looking forward to gaining information from parents who know best.

Thanks!

with Jack born on 01/01/01 and Jenelle born 10/22/02 with

hypotonia, global delays, sensory issues, Infantile Spasms and myoclonic

seizures.

" 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