New to the group

[Guest guest]

Hi Sue,

Welcome to the list! We're pretty new here too, my daughter commenced the

diet a week ago. After a bumpy ride initially, has had 3 really good

days. I hope your son will continue to do well. There are certainly many

knowledgeable parents here who will help you out.

I am still learning the technicalities of the diet so will interested in

hearing what others say about the calorie/ratio issue. I presume that

changing the ratio would not alter the overall calorie intake to the same

extent as increasing calories by 100. Do they feel that increasing

calories will provide Jack with more energy?

Well, sorry I cannot be more helpful.

Kind regards,

Jill

At 04:13 PM 10/9/01, you wrote:

>Hi there from New Zealand! My 3 1/2 year old son Jack started the

>Ketogenic Diet 1 month ago and we're having a few teething problems, as

>I'm sure everyone does. Jack is unlike anyone I have read on this website

>so far in that he doesn't have any seizures. He has a condition called

>Glut-1 Deficiency Syndrome which basically means he has a defect in the

>transportation of glucose from his blood to his brain. He was diagnosed

>only 4 months ago. He is one of only 19 worldwide so there is very little

>information available and I am yet to come across anyone else with this

>condition. The Ketogenic diet is the only treatment available as it is

>providing an alternative fuel to the brain. Before we started the diet,

>some days Jack would wake in the morning already in a state of Ketosis so

>we knew it wouldn't take long when we commenced the diet. We were right,

>he was ketotic by lunchtime on the first day! We were discharged on day

>5, taking home a completely different child, he was staring at everything

>as if for the first time. His concentration is 100% better and will now

>sit and play with playdoh and do puzzles for hours. Three days after

>getting home he caught a vomiting bug which put him back in hospital for 6

>days. Since then his energy levels are really low and we have to motivate

>him to do anything. His ketones have been fairly high usually around 8

>but up to 16 late afternoon/early evening most days. We had him weighed

>today and he's put on 400gm which is good but rather than change his ratio

>they have increased his calories by 100gm per day instead. I hope this

>works as it breaks my heart seeing him lethargic yet mentally alert. He

>has delays in all areas, probably about a year but we are hoping that will

>improve now that his brain will start to function properly. Does anyone

>think the dietitian should have changed the ratio instead of the calories

>and are they right in saying that his energy levels will eventually come

>back? I feel I can't relax until we have our happy little boy with us all

>day every day. I have no problem with the diet, after giving him food

>every half hour most of his life to keep the glucose levels up, this diet

>is half the work and half the grocery bill! I look forward to hearing

>from you with any suggestions. Is there anyone from New Zealand in this group?

>

>Sue Senior (Jack's Mum)

>

>

[Guest guest]

One of the goals with the diet for us was to have my

son gain weight... and they did that through gradually

increasing calories when his body told us to -- when

he would start being hungry between meals. It's

worked for us. We've only done one ratio change so

far - and that was going to 3:1 after one year -- we

started at 4:1 because he was so underweight and

needed all the fat he could get since he didn't have

any on his own. We're due to decrease to 2:1 in a

couple months - which will be the 18month mark.

Hope that helps!

Sheri - mom to Tyler - 9, keto kid since 5/00 seizure

and med free, and Sara - 6.

--- Trent & Sue Senior wrote:

> Hi there from New Zealand! My 3 1/2 year old son

> Jack started the Ketogenic Diet 1 month ago and

> we're having a few teething problems, as I'm sure

> everyone does. Jack is unlike anyone I have read on

> this website so far in that he doesn't have any

> seizures. He has a condition called Glut-1

> Deficiency Syndrome which basically means he has a

> defect in the transportation of glucose from his

> blood to his brain. He was diagnosed only 4 months

> ago. He is one of only 19 worldwide so there is

> very little information available and I am yet to

> come across anyone else with this condition. The

> Ketogenic diet is the only treatment available as it

> is providing an alternative fuel to the brain.

> Before we started the diet, some days Jack would

> wake in the morning already in a state of Ketosis so

> we knew it wouldn't take long when we commenced the

> diet. We were right, he was ketotic by lunchtime on

> the first day! We were discharged on day 5, taking

> home a completely different child, he was staring at

> everything as if for the first time. His

> concentration is 100% better and will now sit and

> play with playdoh and do puzzles for hours. Three

> days after getting home he caught a vomiting bug

> which put him back in hospital for 6 days. Since

> then his energy levels are really low and we have to

> motivate him to do anything. His ketones have been

> fairly high usually around 8 but up to 16 late

> afternoon/early evening most days. We had him

> weighed today and he's put on 400gm which is good

> but rather than change his ratio they have increased

> his calories by 100gm per day instead. I hope this

> works as it breaks my heart seeing him lethargic yet

> mentally alert. He has delays in all areas,

> probably about a year but we are hoping that will

> improve now that his brain will start to function

> properly. Does anyone think the dietitian should

> have changed the ratio instead of the calories and

> are they right in saying that his energy levels will

> eventually come back? I feel I can't relax until we

> have our happy little boy with us all day every day.

> I have no problem with the diet, after giving him

> food every half hour most of his life to keep the

> glucose levels up, this diet is half the work and

> half the grocery bill! I look forward to hearing

> from you with any suggestions. Is there anyone from

> New Zealand in this group?

>

> Sue Senior (Jack's Mum)

>

__________________________________________________

[Guest guest]

Dear Sue and Trent

Great to see you on the list. You must of been the ones started on the diet at Starship recently.

I would love to make contact with you. There is a network of mothers here in Auckland that have

their children on the diet.

You can email me direct on m.poole@...

Louise from New Zealand, mother of Kian now an angel.

-----Original Message-----From: Trent & Sue Senior Sent: Tuesday, 9 October 2001 21:13To: ketogenic Subject: New to the Group

Hi there from New Zealand! My 3 1/2 year old son Jack started the Ketogenic Diet 1 month ago and we're having a few teething problems, as I'm sure everyone does. Jack is unlike anyone I have read on this website so far in that he doesn't have any seizures. He has a condition called Glut-1 Deficiency Syndrome which basically means he has a defect in the transportation of glucose from his blood to his brain. He was diagnosed only 4 months ago. He is one of only 19 worldwide so there is very little information available and I am yet to come across anyone else with this condition. The Ketogenic diet is the only treatment available as it is providing an alternative fuel to the brain. Before we started the diet, some days Jack would wake in the morning already in a state of Ketosis so we knew it wouldn't take long when we commenced the diet. We were right, he was ketotic by lunchtime on the first day! We were discharged on day 5, taking home a completely different child, he was staring at everything as if for the first time. His concentration is 100% better and will now sit and play with playdoh and do puzzles for hours. Three days after getting home he caught a vomiting bug which put him back in hospital for 6 days. Since then his energy levels are really low and we have to motivate him to do anything. His ketones have been fairly high usually around 8 but up to 16 late afternoon/early evening most days. We had him weighed today and he's put on 400gm which is good but rather than change his ratio they have increased his calories by 100gm per day instead. I hope this works as it breaks my heart seeing him lethargic yet mentally alert. He has delays in all areas, probably about a year but we are hoping that will improve now that his brain will start to function properly. Does anyone think the dietitian should have changed the ratio instead of the calories and are they right in saying that his energy levels will eventually come back? I feel I can't relax until we have our happy little boy with us all day every day. I have no problem with the diet, after giving him food every half hour most of his life to keep the glucose levels up, this diet is half the work and half the grocery bill! I look forward to hearing from you with any suggestions. Is there anyone from New Zealand in this group?

Sue Senior (Jack's Mum) "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]

Trent and Sue - my son becomes lethargic when his ketones are

too high. Perhaps this could be an issue? Good luck to your family!

, and 's mom

> New to the Group

>

>

> Hi there from New Zealand! My 3 1/2 year old son Jack started the

> Ketogenic Diet 1 month ago and we're having a few teething

problems, as I'm

> sure everyone does. Jack is unlike anyone I have read on this

website so

> far in that he doesn't have any seizures. He has a condition

called Glut-1

> Deficiency Syndrome which basically means he has a defect in the

> transportation of glucose from his blood to his brain. He was

diagnosed

> only 4 months ago. He is one of only 19 worldwide so there is very

little

> information available and I am yet to come across anyone else with

this

> condition. The Ketogenic diet is the only treatment available as

it is

> providing an alternative fuel to the brain. Before we started the

diet,

> some days Jack would wake in the morning already in a state of

Ketosis so we

> knew it wouldn't take long when we commenced the diet. We were

right, he

> was ketotic by lunchtime on the first day! We were discharged on

day 5,

> taking home a completely different child, he was staring at

everything as if

> for the first time. His concentration is 100% better and will now

sit and

> play with playdoh and do puzzles for hours. Three days after

getting home

> he caught a vomiting bug which put him back in hospital for 6

days. Since

> then his energy levels are really low and we have to motivate him

to do

> anything. His ketones have been fairly high usually around 8 but

up to 16

> late afternoon/early evening most days. We had him weighed today

and he's

> put on 400gm which is good but rather than change his ratio they

have

> increased his calories by 100gm per day instead. I hope this works

as it

> breaks my heart seeing him lethargic yet mentally alert. He has

delays in

> all areas, probably about a year but we are hoping that will

improve now

> that his brain will start to function properly. Does anyone think

the

> dietitian should have changed the ratio instead of the calories and

are they

> right in saying that his energy levels will eventually come back?

I feel I

> can't relax until we have our happy little boy with us all day

every day. I

> have no problem with the diet, after giving him food every half

hour most of

> his life to keep the glucose levels up, this diet is half the work

and half

> the grocery bill! I look forward to hearing from you with any

suggestions.

> Is there anyone from New Zealand in this group?

>

> Sue Senior (Jack's Mum)

>

>

[Guest guest]

Sue

There use to be a mom on the group whose son also had glucose transport

disorder - he had been on diet for 9 yrs and was doing well. Not sure if

she is still here, I think her son's name was but I am not sure

Best of luck

, 's mom

Trent & Sue Senior wrote:

Hi there from

New Zealand! My 3 1/2 year old son Jack started the Ketogenic Diet

1 month ago and we're having a few teething problems, as I'm sure everyone

does. Jack is unlike anyone I have read on this website so far in

that he doesn't have any seizures. He has a condition called Glut-1

Deficiency Syndrome which basically means he has a defect in the transportation

of glucose from his blood to his brain. He was diagnosed only 4 months

ago. He is one of only 19 worldwide so there is very little information

available and I am yet to come across anyone else with this condition.

The Ketogenic diet is the only treatment available as it is providing an

alternative fuel to the brain. Before we started the diet, some days

Jack would wake in the morning already in a state of Ketosis so we knew

it wouldn't take long when we commenced the diet. We were right,

he was ketotic by lunchtime on the first day! We were discharged

on day 5, taking home a completely different child, he was staring at everything

as if for the first time. His concentration is 100% better and will

now sit and play with playdoh and do puzzles for hours. Three days

after getting home he caught a vomiting bug which put him back in hospital

for 6 days. Since then his energy levels are really low and we have

to motivate him to do anything. His ketones have been fairly high

usually around 8 but up to 16 late afternoon/early evening most days.

We had him weighed today and he's put on 400gm which is good but rather

than change his ratio they have increased his calories by 100gm per day

instead. I hope this works as it breaks my heart seeing him lethargic

yet mentally alert. He has delays in all areas, probably about a

year but we are hoping that will improve now that his brain will start

to function properly. Does anyone think the dietitian should have

changed the ratio instead of the calories and are they right in saying

that his energy levels will eventually come back? I feel I can't

relax until we have our happy little boy with us all day every day.

I have no problem with the diet, after giving him food every half hour

most of his life to keep the glucose levels up, this diet is half the work

and half the grocery bill! I look forward to hearing from you with

any suggestions. Is there anyone from New Zealand in this group? Sue

Senior (Jack's Mum)

[Guest guest]

Hi Sue,

Welcome to the list. Most kids have some problems like

vomiting at the start of the diet, due to the sudden intake

of all the fat, but later settle down. However being too

ketotic also brings on lethargy, reflux, red ears/cheeks and

panting etc. If the ketones are too high, it is something to

keep in mind. Then a reduction in ratio will be needed.

Sometimes the symptoms of being too ketotic can be there

without the urine-ketones being high, because the urinary

ketones are not an accurate measure of blood ketones.

If the symptoms don't clear up soon you could ask the

dietician about a reduction in ratio/ blood ketone levels.

Hope I haven't confused you.

Saro....Rohan's mum

Trent & Sue Senior wrote:

Hi

there from New Zealand! My 3 1/2 year old son Jack started the Ketogenic

Diet 1 month ago and we're having a few teething problems, as I'm sure

everyone does. Jack is unlike anyone I have read on this website

so far in that he doesn't have any seizures. He has a condition called

Glut-1 Deficiency Syndrome which basically means he has a defect in the

transportation of glucose from his blood to his brain. He was diagnosed

only 4 months ago. He is one of only 19 worldwide so there is very

little information available and I am yet to come across anyone else with

this condition. The Ketogenic diet is the only treatment available

as it is providing an alternative fuel to the brain. Before we started

the diet, some days Jack would wake in the morning already in a state of

Ketosis so we knew it wouldn't take long when we commenced the diet.

We were right, he was ketotic by lunchtime on the first day! We were

discharged on day 5, taking home a completely different child, he was staring

at everything as if for the first time. His concentration is 100%

better and will now sit and play with playdoh and do puzzles for hours.

Three days after getting home he caught a vomiting bug which put him back

in hospital for 6 days. Since then his energy levels are really low

and we have to motivate him to do anything. His ketones have been

fairly high usually around 8 but up to 16 late afternoon/early evening

most days. We had him weighed today and he's put on 400gm which is

good but rather than change his ratio they have increased his calories

by 100gm per day instead. I hope this works as it breaks my heart

seeing him lethargic yet mentally alert. He has delays in all areas,

probably about a year but we are hoping that will improve now that his

brain will start to function properly. Does anyone think the dietitian

should have changed the ratio instead of the calories and are they right

in saying that his energy levels will eventually come back? I feel

I can't relax until we have our happy little boy with us all day every

day. I have no problem with the diet, after giving him food every

half hour most of his life to keep the glucose levels up, this diet is

half the work and half the grocery bill! I look forward to hearing

from you with any suggestions. Is there anyone from New Zealand in

this group? Sue Senior (Jack's

Mum)

"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,

I live near Houston and go to UofH. Where do you live? I see Dr

dale brown at st. luke's med hospital. He did 2 surgeries, but

didn't cure it, so I'm gonna see Dr. Dulak in Corpus. She

was recommened by someone that had vvs 10 YRS AGO and the doc did 1

surgery and now she is cured. ANd that was 10 yrs ago, so I figure I

can't go wrong with this doctore. Also, there is Dr. Kaufman, he's

in st. luke's also. E-mail me privately and I can give you thier

phone #'s. I also saw Hosp at the women's Hospital in Houston

for p t.

Love,Ruth

> Hi,

>

> Does anyone know of a good doctor in Texas. Has

> biofeedback worked for anyone?

>

> Thanks,

>

>

> __________________________________________________

>

[Guest guest]

Tonight I have come to the realization that my mother has been suffering from

BPD for most

of my life. When I was in nursing school learning about it I suspected that

she may have it

but didn't give it any more thought. Now she is so bad that her behavior is

endangering my

father's job as well as her physical health. I am happily married and my sister

is in graduate

school and we are still affected by her behavior on a weekly basis. I don't

know what may

happen next. She constantly threatens suicide but has yet to try it but i

almost wish she

would so that she would be forced to get help.

My question is, have any of your BPD family members been helped by inpatient

treatment or

is outpatient better? What sorts of treatment worked for them? How can you

convince a BPD

that they need help?

I am so glad to have found something like this. It makes me feel so much better

that there

are other people dealing with this same situation.