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,

I don't know how much help I can be, but here goes. Our daughter Hannah has been

on the keto diet since she was 3 days old. She is now almost 6 months old and

about 13 pounds. In the beginning, she was put on the diet because of a

supposed (yet as of yet officially diagnosed) rare metabolic disease. From the

beginning, Hannah couldn't properly digest carbohydrates and they turned into

basically a poison in her little body. She had breast milk once on her first

night and went into a dangerous acidosis. She also has a seizure disorder which

began at about 2 weeks of age. Her formula is a cocktail of 4 1/2 ounces breast

milk mixed with a special keto formula, 47cc's vegetable oil, 24 cc's canola

oil, 2 cc's flax seed oil, 4 cc's L-carnitine, 700 ml thiamine, 30mg CQ10, mixed

with sterile water to make approx 700cc's for a 24 hour period. Hannah has yet

to spill ketones and I have been told it is difficult for babies under a year

old to do so. She is currently on Keppra and Phenobarbital. I can't tell you if

the diet is working, because it is all we have ever known. I think her seizures

are bad, but not in comparison to our other sweet children we find here.

We also dealt with reflux issues, NG tubes, etc. We had the upper GI and a

swallow test done. The swallow test was very handy because it is not intrusive

and it will tell you if she is aspirating when swallowing. It can also show

where the reflux is happening.The PH probe was inconclusive for us. We also

found that when she was having a lot of seizures she would stop breathing. This

was wrongly blamed on reflux and apnea in the beginning. It's a pretty thick

drink to put down and we also do smaller meals in shorter durations. Hannah now

takes about 5 ounces every 3-4 hours. I also think the flax seed oil and

carnitine help her digest a little better. Just be patient and take your time

with the feedings. Due to the difficulty feeding, I have tried to make things

less stressful on Hannah to limiting the people that feed her to mommy and daddy

only (when possible, I am told we have to get out every once in a while....) If

your daughter is on bottle or NG, sometimes the thickness in the formula will

cause the tube/nipple to clog and although there is sucking, nothing is coming

out. I have had to use fast flowing nipples for Hannah and when we have had to

use the NG tube, flushing is a must! Hannah is not on solids yet, so I can't

help you with that. I am curious what solids they give Camille.

I don't know what your doctors are going to put Camille on, but I attended a

metabolic disease banquet Friday night and met a RD, LD specializing in clinical

nutrition. The company she works for makes a powdered formula called Ketocool

(no relation to the Keto Kooler drink mixes, et all we have all been talking

about lately.) Evidently, the Ketocool used to be on the market in the States

and was pulled from the shelves due to a labeling issue. During this time, it

remained available in Canada. Well, now it is back. Just add water and it is a

keto formula with a 4:1 ratio! Hannah will be trying it on Monday. If all goes

well, my chemistry lab of a kitchen may be able to shut its doors!

Good luck! Take support in your family and the members of this group. I have

found the information, support, and kindness here to be amazing.

New Member

Our daughter, Camille, is 8 months old and is scheduled to start the Keto

diet on either July 6th or August 2nd, depending on the results of a few

tests. We're very excited to start the diet! Camille has Infantile Spasms,

a rare form of epilepsy and 3 drugs have failed her (ACTH, Vigabatrin,

Topamax). We just started the 4th drug, Zonegram.

The Keto team at UCLA seems wonderful. They have a few concerns about

Camille's tolerance of the diet, but feel they can be addressed.

-- First concern is Camille's weight. While s Hopkins has successfully

treated patients as young as 3 months on the diet, the UCLA program is

mostly concerned about weight vs. age. Camille is small for her age (6.8

kilos / 15 lbs) - she will be the youngest and lightest patient ever on the

diet at UCLA.

-- Second concern involves questions regarding her GI issues. The nurse is

concerned that these issues may be exacerbated with the Keto diet. Camille

had a Nissen Fundo for her reflux, which was severe. She's had trouble

tolerating feeds recently and we've finally found a solution (frequent,

small volume feeds). A Delayed Gastric Emptying (DGE) test was conducted on

Friday. We may need to move her start date of the diet to Aug 2 to

determine how to address the DGE if that is the issue.

Wondering the following:

-- Has anyone started their child on the diet at Camille's weight

(6.7kilos/15 lbs)? What was your experience? Any special issues you faced?

-- Wondering what the GI related effects of the diet are? I know the keto

diet is harder to tolerate than formula. Anyone with GI issues? Delayed

Gastric Emptying? Reflux?

Thanks!

mom to Camille, 8 months old

dx with Infantile Spasms, MISF, CVI

Nissen Fundo, MIC-Key Feeding tube

" 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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Hi Rose,

My name is Leeanne,My daughter is called ,She is 12now and has been

epileptic since the age of 4.We have tried a vast assortment of drugs and none

of them have ever worked.we saw a film about the diet and asked our daughters

consultant if we could try it,to which he told us that we still had an

assortment of other drugs to try.Its now a year or two down the line and they

have

finally agreed to help our little girl(not so little now but still my little

girl)and try her on the diet.we are at present waiting for the dietitian to

get back to us regarding what foods are allowed and what foods are not.She

has absence epilepsy,she falls down every few minutes and is constantly

jerking,it is absolutley horrible to see her going through this,and nearly every

day

she wees herself,during a large jerking episode.At the moment she has just

stopped taking her anti-convulsants(on the order of the consultant) and things

are worse than ever.She is so beautiful,but so developmentally delayed.I hope

and pray that she will start to get even a little better whilst on the

diet.Hope your son continues to get better and may you all keep well.

Leeanne,mum to 12.

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--Hi,

My daughter Leah is 10.5 and has been on the diet for 1 year (

diagnosed at 7). It has improved her condition but not seizure free

as of yet. WE are on one med and switching to ferbatol (?). This

is our last choice.

My daughter is also beautiful, outgoing, bright and it breaks my

heart when she has a spell. She has absence seizures....20 to 30 a

day. Before the diet she wet her pants a couple of times a day,

now, no accidents.

The diet will help, hard on the family and child....but it is worth

it.

Barbara

- In ketogenic , ardwickpat@a... wrote:

> Hi Rose,

> My name is Leeanne,My daughter is called ,She is 12now and

has been

> epileptic since the age of 4.We have tried a vast assortment of

drugs and none

> of them have ever worked.we saw a film about the diet and asked

our daughters

> consultant if we could try it,to which he told us that we still

had an

> assortment of other drugs to try.Its now a year or two down the

line and they have

> finally agreed to help our little girl(not so little now but still

my little

> girl)and try her on the diet.we are at present waiting for the

dietitian to

> get back to us regarding what foods are allowed and what foods are

not.She

> has absence epilepsy,she falls down every few minutes and is

constantly

> jerking,it is absolutley horrible to see her going through

this,and nearly every day

> she wees herself,during a large jerking episode.At the moment she

has just

> stopped taking her anti-convulsants(on the order of the

consultant) and things

> are worse than ever.She is so beautiful,but so developmentally

delayed.I hope

> and pray that she will start to get even a little better whilst

on the

> diet.Hope your son continues to get better and may you all keep

well.

> Leeanne,mum to 12.

>

>

>

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Guest guest

Thanks for sharing Rose and Ben. We all know your pain and frustrations

that I can say for sure. I am glad to here Ben is doing better, and his

personality is shinning through.

New member

Hello

I joined a couple of days ago but haven't had a chance to post yet. I

feel more excited

about the amount of knowledge you people seem to have than any

consultant I've

ever visited!

My son Ben is 9 years old and has suffered from epilepsy since the age

of 4. He has

experienced absences, typcial and atypical, myoclonics and possibly

atonics. We've

tried several different meds over a baseline of Epilim but never seen

the seizures

disappear. He has however been on the MCT version of the Keto diet for 4

months

now and is a different child, definitely with reduced fits. We have a

fantastic team at

Great Ormond Street hospital, though it took us 15 months to get to see

them. Ben is

now doing better at school and we're starting to see what a bright kiddy

was buried

beneath the drugs and the illness.

I look forward to having loads of questions answered and getting to know

people and

maybe even saying something intelligent myself. We've had a rough ride

with up to

20 seizures a day at worst but I feel the diet has been the answer for

us.

Rose and Ben Toms

" 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

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Guest guest

Welcome to the group Rose! I'm glad you joined. Your son's last 6

years sounds a lot like my son's. This diet has been great for us,

because it has allowed Ethan to get off medication. His doctor now

thinks that it was the medications that were causing all those

different seizure types. We had suspected that for many years, but

the doctor we used to see didn't think so at all. His response to

Ethan's worsening seizures was always to raise the medication level

or to try a new drug, which of course always made the seizures (and

the speech, school stuggles, etc.) even worese. Keep us posted on

your son's progress. It sounds like things are going great for him!

Gretchen

> Thanks for sharing Rose and Ben. We all know your pain and

frustrations

> that I can say for sure. I am glad to here Ben is doing better,

and his

> personality is shinning through.

>

>

>

> New member

>

>

>

> Hello

>

> I joined a couple of days ago but haven't had a chance to post

yet. I

> feel more excited

> about the amount of knowledge you people seem to have than any

> consultant I've

> ever visited!

>

> My son Ben is 9 years old and has suffered from epilepsy since the

age

> of 4. He has

> experienced absences, typcial and atypical, myoclonics and possibly

> atonics. We've

> tried several different meds over a baseline of Epilim but never

seen

> the seizures

> disappear. He has however been on the MCT version of the Keto diet

for 4

> months

> now and is a different child, definitely with reduced fits. We

have a

> fantastic team at

> Great Ormond Street hospital, though it took us 15 months to get

to see

> them. Ben is

> now doing better at school and we're starting to see what a bright

kiddy

> was buried

> beneath the drugs and the illness.

>

> I look forward to having loads of questions answered and getting

to know

> people and

> maybe even saying something intelligent myself. We've had a rough

ride

> with up to

> 20 seizures a day at worst but I feel the diet has been the answer

for

> us.

>

> Rose and Ben Toms

>

>

>

> " 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

>

>

>

>

>

>

>

>

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Guest guest

Hi Gretchen

I'm glad Ethan's doing well. Is his birthday soon, or has it just

gone. I remember you were going to try the cake recipe. Did it work

for you?

Take care

, Mum to Francesca, Keto Kid since Sept 03

> > Thanks for sharing Rose and Ben. We all know your pain and

> frustrations

> > that I can say for sure. I am glad to here Ben is doing better,

> and his

> > personality is shinning through.

> >

> >

> >

> > New member

> >

> >

> >

> > Hello

> >

> > I joined a couple of days ago but haven't had a chance to post

> yet. I

> > feel more excited

> > about the amount of knowledge you people seem to have than any

> > consultant I've

> > ever visited!

> >

> > My son Ben is 9 years old and has suffered from epilepsy since

the

> age

> > of 4. He has

> > experienced absences, typcial and atypical, myoclonics and

possibly

> > atonics. We've

> > tried several different meds over a baseline of Epilim but never

> seen

> > the seizures

> > disappear. He has however been on the MCT version of the Keto

diet

> for 4

> > months

> > now and is a different child, definitely with reduced fits. We

> have a

> > fantastic team at

> > Great Ormond Street hospital, though it took us 15 months to get

> to see

> > them. Ben is

> > now doing better at school and we're starting to see what a

bright

> kiddy

> > was buried

> > beneath the drugs and the illness.

> >

> > I look forward to having loads of questions answered and getting

> to know

> > people and

> > maybe even saying something intelligent myself. We've had a rough

> ride

> > with up to

> > 20 seizures a day at worst but I feel the diet has been the

answer

> for

> > us.

> >

> > Rose and Ben Toms

> >

> >

> >

> > " 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

> >

> >

> >

> >

> >

> >

> >

> >

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Guest guest

Who told you that Hopkins wouldn't accept anyone from out of state? We live

in Nebraska and my son is going to start the diet there the first week of

August.

Mike

_____

From: kenai22000

Sent: Wednesday, July 07, 2004 10:09 AM

To: ketogenic

Subject: New Member

My son, has been on the ketogenic diet since 1/27/04. He

started off great, then started progressively getting worse. He is

now having just as many seizures as before. I have not been able to

get any help from any dietitians or doctors. I have learned more

from your messages than from anyone. I am hoping someone out there

might have some advice for me. We tried to get into s Hopkins,

but they claim that they will not accept anyone from out of state.

We are from Michigan. We have gone to 2 different children's

hospitals in Michigan and have gotten no answers. I am using the

Keto Meal Planner from PHP in CA. We are wondering if his extremely

low levels of carnitine could be adversely affecting the diet. His

ratio was normal (.8) before starting the diet. In May, it was 3.2

and 3 weeks ago, it was 3.5. He was started on 330 mg/day of

Carnitore in May which was increased in June to 660 mg/day. Now he

is taking 990 mg/day. We are waiting for test results from Duke for

a carnitine profile. Does anyone have any ideas?

" 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

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Guest guest

Is ryan on any meds? Has anything been decreased, besides the

carnitore? Could you be missing some possible hidden sugar/carbs?

Just trying to brainstorm with you.

New Member

My son, has been on the ketogenic diet since 1/27/04. He

started off great, then started progressively getting worse. He is

now having just as many seizures as before. I have not been able to

get any help from any dietitians or doctors. I have learned more

from your messages than from anyone. I am hoping someone out there

might have some advice for me. We tried to get into s Hopkins,

but they claim that they will not accept anyone from out of state.

We are from Michigan. We have gone to 2 different children's

hospitals in Michigan and have gotten no answers. I am using the

Keto Meal Planner from PHP in CA. We are wondering if his extremely

low levels of carnitine could be adversely affecting the diet. His

ratio was normal (.8) before starting the diet. In May, it was 3.2

and 3 weeks ago, it was 3.5. He was started on 330 mg/day of

Carnitore in May which was increased in June to 660 mg/day. Now he

is taking 990 mg/day. We are waiting for test results from Duke for

a carnitine profile. Does anyone have any ideas?

" 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

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Guest guest

I have no suggetsions on the carnitine and seizures, but there are

so many other variables to consider as well. Do not give up! What

medications is on? Have you been weaning them? What ratio is

he on? I strongly recommend Cincinnati's Childrens MEdical Center.

Our doctor there is fabulous. But, perhaps Cleveland is closer to

you. I think the answers are out there somewhere. My doctor

considers early success with the diet a good sign, and you still

have that going for you.

Gretchen

> My son, has been on the ketogenic diet since 1/27/04. He

> started off great, then started progressively getting worse. He

is

> now having just as many seizures as before. I have not been able

to

> get any help from any dietitians or doctors. I have learned more

> from your messages than from anyone. I am hoping someone out

there

> might have some advice for me. We tried to get into s

Hopkins,

> but they claim that they will not accept anyone from out of

state.

> We are from Michigan. We have gone to 2 different children's

> hospitals in Michigan and have gotten no answers. I am using the

> Keto Meal Planner from PHP in CA. We are wondering if his

extremely

> low levels of carnitine could be adversely affecting the diet.

His

> ratio was normal (.8) before starting the diet. In May, it was

3.2

> and 3 weeks ago, it was 3.5. He was started on 330 mg/day of

> Carnitore in May which was increased in June to 660 mg/day. Now

he

> is taking 990 mg/day. We are waiting for test results from Duke

for

> a carnitine profile. Does anyone have any ideas?

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Guest guest

Gretchen,

I hope I am doing this reply correctly. I am very new to this and

still trying to figure it all out. Thanks so much for your

questions! was on Topamax and we have gradually weaned him off

as of 2 weeks ago. We have not noticed any change in seizures yet.

Although his ketones have been much higher within the past few days.

We were having trouble getting dark purple each day. I appreciate

your advice on Cincinnati. We have not had any luck with U of Mich.

and are now trying Detroit Children's Hospital. They are looking

into his fatty acids and Carnitine now. Have you ever heard of loud

noises causing seizures? has had several after loud sounds and

we are wondering about that.

Ann

> > My son, has been on the ketogenic diet since 1/27/04. He

> > started off great, then started progressively getting worse. He

> is

> > now having just as many seizures as before. I have not been able

> to

> > get any help from any dietitians or doctors. I have learned more

> > from your messages than from anyone. I am hoping someone out

> there

> > might have some advice for me. We tried to get into s

> Hopkins,

> > but they claim that they will not accept anyone from out of

> state.

> > We are from Michigan. We have gone to 2 different children's

> > hospitals in Michigan and have gotten no answers. I am using the

> > Keto Meal Planner from PHP in CA. We are wondering if his

> extremely

> > low levels of carnitine could be adversely affecting the diet.

> His

> > ratio was normal (.8) before starting the diet. In May, it was

> 3.2

> > and 3 weeks ago, it was 3.5. He was started on 330 mg/day of

> > Carnitore in May which was increased in June to 660 mg/day. Now

> he

> > is taking 990 mg/day. We are waiting for test results from Duke

> for

> > a carnitine profile. Does anyone have any ideas?

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Guest guest

,

I have been trying to get a reply to you and hope I am doing it right

this time! Thanks for your questions.. We have weaned off

Topamax (as of 2 weeks ago). We were wondering if it might be

interfering with the diet. So far, we have not noticed a change in

seizure activity. His ketones have been much higher within the last

few days. He is on a ratio of 4.5.

Ann

> Is ryan on any meds? Has anything been decreased, besides the

> carnitore? Could you be missing some possible hidden sugar/carbs?

> Just trying to brainstorm with you.

>

>

>

> New Member

>

>

>

> My son, has been on the ketogenic diet since 1/27/04. He

> started off great, then started progressively getting worse. He is

> now having just as many seizures as before. I have not been able

to

> get any help from any dietitians or doctors. I have learned more

> from your messages than from anyone. I am hoping someone out there

> might have some advice for me. We tried to get into s Hopkins,

> but they claim that they will not accept anyone from out of state.

> We are from Michigan. We have gone to 2 different children's

> hospitals in Michigan and have gotten no answers. I am using the

> Keto Meal Planner from PHP in CA. We are wondering if his

extremely

> low levels of carnitine could be adversely affecting the diet. His

> ratio was normal (.8) before starting the diet. In May, it was 3.2

> and 3 weeks ago, it was 3.5. He was started on 330 mg/day of

> Carnitore in May which was increased in June to 660 mg/day. Now he

> is taking 990 mg/day. We are waiting for test results from Duke

for

> a carnitine profile. Does anyone have any ideas?

>

>

>

> " 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

>

>

>

>

>

>

>

>

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Guest guest

Ann,

Were you aware that the medicine weaning process can cause

seizures? Ethan had control early when he started the diet in Feb,

but lost it as we weaned. Perhaps that happened with . He

started carnitine I think when the seizures returned, and I don't

think it had anything to do with low levels on the blood test. I'm

not sure if it helped or not. But we are still using it. I think

many things can trigger seizures, including load noises. I think

many of us have noticed that seizures can change on the diet; and

this is another thing my doctor considers a good sign. So if the

seizure response to loud noises is new, I wouldn't worry about it

too much. It may just be a transition is going through.

My computer is acting up. Good luck getting the information you

need. Oh, also, congratulations in getting off topomax, is he

now drug free? Notice any changes?

Gretchen

> > > My son, has been on the ketogenic diet since 1/27/04. He

> > > started off great, then started progressively getting worse.

He

> > is

> > > now having just as many seizures as before. I have not been

able

> > to

> > > get any help from any dietitians or doctors. I have learned

more

> > > from your messages than from anyone. I am hoping someone out

> > there

> > > might have some advice for me. We tried to get into s

> > Hopkins,

> > > but they claim that they will not accept anyone from out of

> > state.

> > > We are from Michigan. We have gone to 2 different children's

> > > hospitals in Michigan and have gotten no answers. I am using

the

> > > Keto Meal Planner from PHP in CA. We are wondering if his

> > extremely

> > > low levels of carnitine could be adversely affecting the

diet.

> > His

> > > ratio was normal (.8) before starting the diet. In May, it

was

> > 3.2

> > > and 3 weeks ago, it was 3.5. He was started on 330 mg/day of

> > > Carnitore in May which was increased in June to 660 mg/day.

Now

> > he

> > > is taking 990 mg/day. We are waiting for test results from

Duke

> > for

> > > a carnitine profile. Does anyone have any ideas?

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Guest guest

Gretchen,

Thank you so much for your message. I was aware that seizures might

increase after weaning from meds, but I didn't think it would last

very long. It has been 2 weeks. From your experience, could he

still be adjusting to the wean? He is off all meds now, for which I

am very thankful!! I hated what all (he tried 5 different AEDs) of

them did to him. I think I would rather have seizures than very

aggresive behavior, no talking, and total loss of any cognitive

skills. Yes, we have seen a huge difference in all of that! How is

Ethan doing now? Thank you for the encouraging comments.

Ann

> > > > My son, has been on the ketogenic diet since 1/27/04.

He

> > > > started off great, then started progressively getting worse.

> He

> > > is

> > > > now having just as many seizures as before. I have not been

> able

> > > to

> > > > get any help from any dietitians or doctors. I have learned

> more

> > > > from your messages than from anyone. I am hoping someone out

> > > there

> > > > might have some advice for me. We tried to get into s

> > > Hopkins,

> > > > but they claim that they will not accept anyone from out of

> > > state.

> > > > We are from Michigan. We have gone to 2 different children's

> > > > hospitals in Michigan and have gotten no answers. I am using

> the

> > > > Keto Meal Planner from PHP in CA. We are wondering if his

> > > extremely

> > > > low levels of carnitine could be adversely affecting the

> diet.

> > > His

> > > > ratio was normal (.8) before starting the diet. In May, it

> was

> > > 3.2

> > > > and 3 weeks ago, it was 3.5. He was started on 330 mg/day of

> > > > Carnitore in May which was increased in June to 660 mg/day.

> Now

> > > he

> > > > is taking 990 mg/day. We are waiting for test results from

> Duke

> > > for

> > > > a carnitine profile. Does anyone have any ideas?

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Guest guest

welcome ,

I'm familiar with your situation as my daughter is only 5, but this is a

wonderful group, with great parents to offer you advice. It's great news

your son has grown some, I hope you see some more positive changes soon.

--

-mom to Stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

is almost 10 and a happy healthy girl.

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Glad that things are going well. Our daughter is on the diet and gets

fluids via g-tube and solids by mouth. We also saw major changes with

the diet and going off the meds. It will take you a long time to wean

the meds, but it is worth it. You may see a small increase in seizures

with each decrease in meds, but that should settle down in a few days.

Bill

momtwocaitie wrote:

>

> Hi, I just found this group. My name is Sherri. We have a daughter

> (Caitie) that is 7. We started the diet in March. After the 5th drug

> was added and Caitie was put in the PICU for status seizues. Caitie

> has had seizues for 6 years. So far the diet is helping. We are going

> off one med now. Caitie is G-tube feed and is on a 4/1 ratio. We are

> doing RCF,Microlipids,Polycose,water. Plus supplements. We check her

> ketones with the urine dip sticks. We also check her blood

> sugars,sometimes she goes to low. The diet is 1100 cal a day. We live

> in Northern IN. and go to Riley. Caitie is on Klonopin, Zonegran,

> Keppra, Topamax going off of. Then we plan to go off of Zonegran.

>

> Sherri (mom to Caitie) diet march 2004

>

>

>

>

>

>

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Welcome! This group is wonderful, and full of terrific resources. I

couldn't help but notice your daughter's name. I take it we have

something in common.

My Lily is on Klonapin wafers, 2 a day, and Topamax, 2 15 mg. capsules

a day. The diet has also helped her (she started in March as well)

although it hasn't stopped them. We continue to work on it.

Best to you and Caitie.

Caitlin

>

> Hi, I just found this group. My name is Sherri. We have a daughter

> (Caitie) that is 7. We started the diet in March. After the 5th drug

> was added and Caitie was put in the PICU for status seizues. Caitie

> has had seizues for 6 years. So far the diet is helping. We are

going

> off one med now. Caitie is G-tube feed and is on a 4/1 ratio. We are

> doing RCF,Microlipids,Polycose,water. Plus supplements. We check her

> ketones with the urine dip sticks. We also check her blood

> sugars,sometimes she goes to low. The diet is 1100 cal a day. We

live

> in Northern IN. and go to Riley. Caitie is on Klonopin, Zonegran,

> Keppra, Topamax going off of. Then we plan to go off of Zonegran.

>

> Sherri (mom to Caitie) diet march 2004

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Welcome Barb,

Boy can I relate to the Cake Thing. My neighbor just brought us a beautiful

home made Boston Cream Cake. There are two of us. You figure it out.

Best, manda

Barbara Colvin wrote:

> Hello all,

>

>

>

> My name is Barbara and I am a sugar junkie. I'm also a serious Weight

> Watchers. I've done WW in the past; I even managed to reach goal. Then I

> stopped because I thought " I don't need to pay for maintenance. I

> know how

> to do this. " Ah, the mistakes of youth! Needless to say, I gained it all

> back over the next ten years and have been struggling to get it back off

> over the next ten. Having three children in the meantime didn't help with

> weight either.

>

>

>

> I recommitted to WW about 7 weeks ago and have been doing quite well. I'd

> stayed OP, journaled, tried a bunch of new recipes, etc. Then....we

> had our

> school carnival. My daughter won a cake at the cake walk. We brought it

> home. I ate about ¼ of it. Yes, it was a big cake. It was about 50

> points

> of cake. And then I ate 5 sugar cookies too. Now I'm struggling to get

> back OP. It's amazing how a few days of binging will get you so off

> track.

> If I don't stop it now, I'll lose my momentum and will give up. How

> do you

> stop that downward spiral?

>

>

>

> Advice PLEASE!

>

>

>

> Barbara

>

>

>

> ~~~~~~~~~~~~~~~~~~~~

>

> Barbara Colvin

>

> Barbara@...

>

> ~~~~~~~~~~~~~~~~~~~~

>

>

>

>

>

>

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>

> My name is Jonathon and I have identical twin four yr olds (normal

> hearing) and , a 8 month old with bilateral profound hearing

> loss. She has been aided since 4 mo and recently we added glasses to

> the mix. We have started the long road towards listening and speaking,

> and while everyday presents new challenges, it also offers new

> rewards. My wife and I look forward to being a part of the group. We

> live in the Atlanta area and hope to have a CI in Dec. It has been fun

> to read the messages the past couple of days, and I look forward to

> more discussions.

>

> Jonathon

>

>

>

> Welcome Jonathon,

>

> I¹m , mother to Ethan who is 12 months old with bilateral profound

> loss. He has also been aided since 4 months and will be getting his CI on

> Sept. 19th. It sounds like we¹ve been along the same journey and I¹m happy for

> you that you¹ve found this list as it has helped me tremendously in the last

> year. I¹m in rural southern Ohio, but I think there are several people here

> from the Atlanta area so you¹ll have lots of resources to draw on from them as

> you go along. Again, Welcome!

>

> -

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Hi Jonathon and welcome! I'm and I'm just down the road a piece in

Macon. My daughter Maggie just turned 15, has a moderate-severe loss and was

diagnosed at almost 4 years old. We traveled to Atlanta for Auditory Verbal and

she has done well in the mainstream. She wears glasses too but usually wears

contacts now that she is a glamorous teenager. I'll have to tell you a funny

story from AV since I see your email name is " Dawgwithchili " ! Our AV Therapist

told us she was working with a child with an implant and they were working on a

unit with animals, which included a dog. The child very emphatically informed

her that it was pronounced DAWG not dog and had the UGA pronunciation perfect!

We went to the Auditory Verbal Center of Atlanta and also worked with Atlanta

Speech school for a comprehensive eval. Some great folks up there in Atlanta -

just be glad you don't live out here in the " other GA " where services are few

and far between. Are you going to Dr. Todd for the CI?? (Have you had a

NuWay Chili dog?? Pretty high octane, a local middle GA delicacy)

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Hi, Jonathon,

I'm Deganit, mom to a 22 month old daughter with a mild-moderate

hearing loss. We live in Savannah, so we're fellow Georgians, but

too far from Atlanta to take advantage of all the great resources.

I've been in close (phone and e-mail) touch with the Auditory-Verbal

Center of Atlanta since we moved here (last October), and found them

to be wonderful sources of support and info.

Welcome to the group!

>

> Hello,

>

> My name is Jonathon and I have identical twin four yr olds (normal

> hearing) and , a 8 month old with bilateral profound hearing

> loss. She has been aided since 4 mo and recently we added glasses

to

> the mix. We have started the long road towards listening and

speaking,

> and while everyday presents new challenges, it also offers new

> rewards. My wife and I look forward to being a part of the group.

We

> live in the Atlanta area and hope to have a CI in Dec. It has been

fun

> to read the messages the past couple of days, and I look forward to

> more discussions.

>

> Jonathon

>

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If it's at the brainstem, then a CI won't help. However, they are just

beginning to actively implant the brain stem with another device but that is

alot more dangerous as the brainstem controls your entire body's functioning.

-------------- Original message --------------

Hi,

I wanted to introduce myself. I am Sally Brumbill, also from Atlanta,

like Jonathon. We have 3 children, & Greyson ages 11 & 8 and

Seeta age 5 adopted from India. We are investigating adopting another

little girl from India who just turned 1 and is reported deaf. Bera

test notes " mildy delayed waves in III & V suggesting vestibuar lesion

at brainstem level " . We have no idea what this really means but I

assume it means SNL. I don't know if this child would be a candidate

for a cochlear implant. Some days I feel at capacity with 3 hearing

children and yet this little girl " speaks " to us with our insurance

and all the resources Atlanta has to offer. Should this come to pass

we pray that when " duty calls " resources and strength arrive with it.

Sally

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Sally,

I am not sure about the condition you described, but I have an 8

month old son with a moderate hearing loss. It sounded overwhelming

and scary when we found out and sometimes I still get anxious and

depressed when I think of it progressing, but in all honesty its not

that bad. Some of the other mothers in this group have some serious

issues to deal with. . . matters of life and death, even. Donovan

has a hearing loss, he wears hearing aids, we go to audiologist and

have several teachers: Oral Counsler, ECI, AI and our special ear

doctor. There is a lot of work for the parents and family involved,

but if you are all willing to do that, then there are so many

rewards to be gained. If your heart is telling you and your husband

that this little girl belongs in your family, then I would not let a

hearing loss stand in the way.

Just my opinion,

Emylie

Mother to Kaiden, 6 & hearing and Donovan, 8 mos Moderate SNHL

>

> Hi,

> I wanted to introduce myself. I am Sally Brumbill, also from

Atlanta,

> like Jonathon. We have 3 children, & Greyson ages 11 & 8

and

> Seeta age 5 adopted from India. We are investigating adopting

another

> little girl from India who just turned 1 and is reported deaf.

Bera

> test notes " mildy delayed waves in III & V suggesting vestibuar

lesion

> at brainstem level " . We have no idea what this really means but I

> assume it means SNL. I don't know if this child would be a

candidate

> for a cochlear implant. Some days I feel at capacity with 3

hearing

> children and yet this little girl " speaks " to us with our

insurance

> and all the resources Atlanta has to offer. Should this come to

pass

> we pray that when " duty calls " resources and strength arrive with

it.

> Sally

>

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Hi Sally

This is . I wanted to welcome you to the list. Sounds like this

little girl is speaking to you already - but I think you know that!

My daughter is Hayley - 14 - profoundly deaf - uses ASL, wears an

implant and yesterday started her second full year at a deaf school

which was my choice and desire for her. I hope this list provides you

the answers you are looking for.

Best wishes,

--- In Listen-Up , " sjb13131330102 " < yet this

little girl " speaks " to us with our insurance

> and all the resources Atlanta has to offer. Should this come to pass

> we pray that when " duty calls " resources and strength arrive with

it.

> Sally

>

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Do you have a copy of the ABR and report you could send to someone in

the states to look at it? I think I have someone that would look at it

for you if you like.

Elaine

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Hi Sally, I'm from Macon, just south of you. I'm not sure what the ABR

results means, hope you can find that out because it would help to know what

you'd be dealing with. An audiologist I know has adopted two little girls from

China but they are both hearing. I also have some friends who adopted a little

girl from Russia with an orthopedic disability. The mom has a disability and

that is why they adopted, and they are very involved in the disability

community so they just felt their family should include a child with a

disability. Actually they saw her picture, fell in love, and the rest is

history! Keep in touch and let us know when/if she joins your family.

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