and

November 3, 2000

<< Please say a prayer......I am so lost.. >>

Hi, Everyone..............prayers for you and . Keep us posted on

what this guy comes up with. A lot of us are in the same boat!!!

Maureen........sorry about your Mom and Dad. Old age can be a very

lonely time when people like your parents are separated. Sorry 's

behavior has gone so far down hill......I know initially you thought the

Risperdal was helping. You definitely have your hands full. Take care and

prayers to you.

Margaret

November 5, 2000

In a message dated 11/03/2000 5:00:32 PM Central Standard Time,

mfroof@... writes:

<< Take care and

prayers to you. >>

Thank you, Margaret. How is Gareth doing these days? I know you've been

going through some behavior difficulties and medication changes with him

lately. What's the latest?

Maureen

March 22, 2001

In a message dated 3/22/01 9:09:18 AM Eastern Standard Time,

howard@... writes:

<<

Greetings ,

As requested, here is the pasted copy of our son's progressive overview,

less the header, which outlined that he was diagnosed with a compleIV

mitochondrial disorder, at 14 months of age. >>

THANK YOU.....very much.

Blessings,

March 22, 2001

In a message dated 3/22/01 9:09:18 AM Eastern Standard Time,

howard@... writes:

<< D.M.G. (N, N, -Dimethylglycins HCL 50 mgm/ml) - 5 to 7 ml per day. >>

I use this one for Karly but, mine is in a sublingual form of 125 mg DMG. I

haven't ever seen it in liquid. Where do you get that one?

March 22, 2001

Greetings ,

As requested, here is the pasted copy of our son's progressive overview,

less the header, which outlined that he was diagnosed with a compleIV

mitochondrial disorder, at 14 months of age.

AN OVERVIEW OF ADRIAN SAVAGE'S PROGRESS. (FEB 2001)

1. WAS: From birth D.O.B. 19/9/95, (and possibly in the womb, as

commented numerous times about the strange repetitive movements, late in the

pregnancy) had serve uncontrollable myoclonic epilepsy - up to 40+

seizures per day of ½ to 3 min duration.

NOW: is now drug free (no anti-convulsants since June 1998), with the

occasional mild seizure (many so mild, that the casual observer is often not

aware he is having one - mouth pouting, slight rolling of the eyes,

involuntary swallowing or smiling, slight flicking of the head, shoulder or

one hand - an average of 4 to 5 per week), which don't leave him bombed out

afterwards, and he is obviously aware of what is happening around him during

them. At no stage when was on any combination of anti-convulsant

medications, did he have any better control of seizure activity, as compared

to their control since taking him off drugs, (both in terms of number of

seizures over any given time frame and the intensity of those seizures) with

the added noticeable benefit of no side affects. (Esp. more alert and aware

of his surroundings)

BENEFITS: *The intensive rehabilitation program we did for 14 months through

the Institutes for the Development of Human Potential (Glenn Doman program -

Australian contact, Max Britt P.O Box 3 Healesville, , 3777 - Ph 059

623084) - especially the " masking " - rebreathing expelled air for set time,

many times a day.

*D.M.G. - dimethyl glycine supplement - the active component of pan agamic

acid (vitamin B15)

*Taurine amino acid supplement

*Diet - particularly no salt, no sugar and regulated fluid intake

2. WAS: For the first 3-4 months of his life, was fed through a

naos-gastric tube. To avoid infections from food getting on his lungs, all

fluids had to be thickened, due to his poor swallowing. He was never able

to successfully breast feed, because he could not open his mouth properly.

He struggled with a constant " rattling " in the back of his throat, due to

the inability to deal with his secretions, which required sucking out with a

machine.

NOW: has been drinking unthickened fluids, for over 2 years (still

from a bottle, working on cup use), and eats lumpy mashed food, making some

attempt to bite or chew, with encouragement. The " rattle " /secretion problem

has completely dried up.

BENEFITS: *getting him off anti-convulsants

*D.M.G. (as above) - noticed dramatic improvement in 3-4 days when we first

put him on it.

3. WAS: Floppy " rag doll " lying " frog legged " on the floor, unable to lift

his head up (until 15 months) or roll, and often only wakeful 2 to 4 hours a

day.

NOW: Greatly improved muscle tone and weight bearing ability. (We still

notice fluctuations during a day and from day to day, although they are mild

compared to pre supplementation with D.M.G., and despite any fluctuations,

he is always steadily improving in overall strength, especially in the upper

body) He can roll from back to front and front to back (often gets arms

stuck), and when very active, often moves around the floor on his back. He

weight bears well on his legs, and is able to stand for extended periods of

time with limited support for balance. He will step out and with

encouragement and some assistance, walk across a room, on good days. He

will involve and sometimes initiate meaningful interaction and games with

others. He can reach and hit things, but not reach and grasp; although he

will tightly grasp something placed in his hand. If placed on the floor in

a seated position, he is able to remain upright for extended periods, by

supporting himself with his hands on the floor in front of his body, between

his legs. He now independently moves around the floor, in this way, pushing

any pillows placed around him for protection, out of the way. For this

reason, we have brought him a football foam protection helmet, to avoid

injury. When seated, he often plays a game of leaning right back and

pulling himself upright at the last minute, before he falls backwards. Sits

on a little stool for extended periods of time, often with out support.

BENEFITS: *D.M.G. supplement

*Co Enzyme Q10 and activated Vitamin B3 supplements - was on these before

discovering D.M.G. While not as effective, they did assist with his energy

levels.

*Diet - high fat / low carbohydrate / low acid forming (i.e. Alkaline

forming foods) / all raw vegan diet and freshly juiced vegetable juices for

fluids.

*The intensive rehabilitation program definitely laid a good foundation to

this progress.

WAS: Struggled with chronic constipation, with bleeding, often requiring

suppositories.

NOW: Has very few digestive problems.

BENEFITS: Change of diet.

# Aside from secondary illnesses, the removal of the D.M.G. supplementation

and a major set back after his 18 month immunization, (when he lost 3 to 4

clear words of speech, which he has never regained - the beginnings of word

forming and a greater vocal range has been a recent progression) has

always been steadily improving, especially since coming off

anti-convulsants.

AN OVERVIEW OF ADRIAN'S DIET & SUPPLEMENTS.

Diet: *Fruit - bananas, avocados, pears, apples, kiwi fruit, peaches,

mangoes, paw paws, strawberries, nectarines, apricots, plums, custard apple,

rock melon, water melon

* " Nut Butter " - the following soaked overnight in water in the fridge and

crushed: almonds, lima beans, dates, sunflower seeds, pumpkin seeds

(pepita), sultans, raisins, figs, dried apricots, and prunes.

*Tofu, tahini (crushed sesame seed paste)

(On the few occasions we have given him cooked animal based products - eg

egg custard - we have noticed a return of the " rattles " in the back of the

throat and a swelling up of the old sty scares on his eyelids. had

very bad sties on his eyes when younger, until we introduced this diet.)

Fluids: Mainly fresh, raw, vegetable juices, esp. carrot with small amounts

of celery, cucumber, beetroot, parsley, or spinach. (Occasionally, 100%

bottled fruit juice, watered down)

Supplements: *Barley green or alfalfa powder - heaped teaspoon per day

(broad range alkalising nutrient)

*Selenium yeast powder - 1/3 teaspoon per day (broad range nutrient & anti

oxidant)

*Grain based acidophilus/bifidus concentrate powder - ½ teaspoon per day

*Calcium Ascorbate - 1/4 teaspoon per day (non acid vitamin C anti oxidant)

*Calcium supplement - equivalent to 300mg per day (assist bone density)

*Vitamin B12 - 250mcg per day (because of vegan diet)

*Linseed/flaxseed oil - approx 5 ml per day (essential fatty acids esp.

omega 3)

*Taurine amino acid - 500 to 750 mg per day (assists with epilepsy and aids

liver detox)

*D.M.G. (N, N, -Dimethylglycins HCL 50 mgm/ml) - 5 to 7 ml per day. Of all

the supplements we have ever used with , this is the one that has

shown the most obvious, sustained, benefits. The first time we put him on

it, with in 3 to 4 days, we saw a marked improvement in his epilepsy, energy

levels, alertness, and a complete " drying up " of the rattling at the back of

the throat. We did a trial of taking him off it, and with in 10 days,

noticed a return or marked increase in all these things, even reverting back

to not opening his mouth to feed, as was the case in his early months of

life.

Trust you find this of interest. There is much more we could share,

concerning why we do what we are doing. Not sure about the " science " of it

all, however the positive results are a testimony to the fact that any

progression of the condition, is gradually being reversed. Though still a

profoundly disabled boy, has good quality of life, and really loves

his life. Though the journey for us has been an extremely difficult one,

is a joy to be around, and we thank God for the blessing he has been

to our lives.

[ ] and

> In a message dated 3/16/01 7:49:23 AM Eastern Standard Time,

> howard@... writes:

>

> <<

> Thought this overview of our son would be of interest to you. There are

a

> lot of similarities to what is presented in the letter below. If you

want

> information on D.M.G., then check out www.kirkmanlabs.com.

> >>

>

> Yes, I AM VERY INTERESTED IN READING THIS about your son. ONLY I can't

down

> load it. It is too big for my computer. Can you copy and paste it to me

> please?

>

> THANK YOU SO MUCH.

>

> _

>

March 22, 2001

Hi guys, Congratulations on your son's progress.

My son has gone through the IAHP for almost ten years. There we met Max Brit.

Give him our regards pls.

I noticed the little mention to protein in your son's diet. Just some tofu,

tahini and the like. Pls

keep in mind that water and protein are the two indispensable nutrients for

survival. Protein in

adequate amounts is necessary for cellular growth and repair. Mixes of rice and

beans, rice and corn,

etc. are good sources of protein. The protein pool ( amount of protein

derivatives kept in the body as

a reserve) is very small and if there is not enough intake, the body will start

taking it from its own

muscle tissue. Insufficient protein intake is a very serious problem.

Depending on age, a person's needs varies a lot and I suggest you check with a

good nutritionist to

find out the typical protein needs for someone like . I suspect a minimum

of 15% of his caloric

needs.

I also see no supplementation of magnesium. This is a cornerstone mineral for

kids with seizures and

those taking additional calcium. Additionally, it would help in stimulating

's peristalsis.

For Taurine to be effective it needs to be taken in an empty stomach, Care must

be exercised in that

certain individuals react adversely to this practice. For that reason I always

suggest liquid Taurine,

which brings no gastric distress and is very easy and fast to assimilate.

Make sure you buy known brands of DMG. DMG " impurities " are troublesome for some

people. The

neurological effect may come from the release of the inhibitory amino acid

Glycine and thus, in order

to maximize adsorption, one needs to be sure that the individual has not taken

proteins of any kind for

the last hour.

Congrats again and keep well.

Cuns-Rial

& Savage wrote:

> Greetings ,

>

> As requested, here is the pasted copy of our son's progressive overview,

> less the header, which outlined that he was diagnosed with a compleIV

> mitochondrial disorder, at 14 months of age.

>

> AN OVERVIEW OF ADRIAN SAVAGE'S PROGRESS. (FEB 2001)

> 1. WAS: From birth D.O.B. 19/9/95, (and possibly in the womb, as

> commented numerous times about the strange repetitive movements, late in the

> pregnancy) had serve uncontrollable myoclonic epilepsy - up to 40+

> seizures per day of ½ to 3 min duration.

>

> NOW: is now drug free (no anti-convulsants since June 1998), with the

> occasional mild seizure (many so mild, that the casual observer is often not

> aware he is having one - mouth pouting, slight rolling of the eyes,

> involuntary swallowing or smiling, slight flicking of the head, shoulder or

> one hand - an average of 4 to 5 per week), which don't leave him bombed out

> afterwards, and he is obviously aware of what is happening around him during

> them. At no stage when was on any combination of anti-convulsant

> medications, did he have any better control of seizure activity, as compared

> to their control since taking him off drugs, (both in terms of number of

> seizures over any given time frame and the intensity of those seizures) with

> the added noticeable benefit of no side affects. (Esp. more alert and aware

> of his surroundings)

> BENEFITS: *The intensive rehabilitation program we did for 14 months through

> the Institutes for the Development of Human Potential (Glenn Doman program -

> Australian contact, Max Britt P.O Box 3 Healesville, , 3777 - Ph 059

> 623084) - especially the " masking " - rebreathing expelled air for set time,

> many times a day.

> *D.M.G. - dimethyl glycine supplement - the active component of pan agamic

> acid (vitamin B15)

> *Taurine amino acid supplement

> *Diet - particularly no salt, no sugar and regulated fluid intake

>

> 2. WAS: For the first 3-4 months of his life, was fed through a

> naos-gastric tube. To avoid infections from food getting on his lungs, all

> fluids had to be thickened, due to his poor swallowing. He was never able

> to successfully breast feed, because he could not open his mouth properly.

> He struggled with a constant " rattling " in the back of his throat, due to

> the inability to deal with his secretions, which required sucking out with a

> machine.

>

> NOW: has been drinking unthickened fluids, for over 2 years (still

> from a bottle, working on cup use), and eats lumpy mashed food, making some

> attempt to bite or chew, with encouragement. The " rattle " /secretion problem

> has completely dried up.

>

> BENEFITS: *getting him off anti-convulsants

> *D.M.G. (as above) - noticed dramatic improvement in 3-4 days when we first

> put him on it.

>

> 3. WAS: Floppy " rag doll " lying " frog legged " on the floor, unable to lift

> his head up (until 15 months) or roll, and often only wakeful 2 to 4 hours a

> day.

>

> NOW: Greatly improved muscle tone and weight bearing ability. (We still

> notice fluctuations during a day and from day to day, although they are mild

> compared to pre supplementation with D.M.G., and despite any fluctuations,

> he is always steadily improving in overall strength, especially in the upper

> body) He can roll from back to front and front to back (often gets arms

> stuck), and when very active, often moves around the floor on his back. He

> weight bears well on his legs, and is able to stand for extended periods of

> time with limited support for balance. He will step out and with

> encouragement and some assistance, walk across a room, on good days. He

> will involve and sometimes initiate meaningful interaction and games with

> others. He can reach and hit things, but not reach and grasp; although he

> will tightly grasp something placed in his hand. If placed on the floor in

> a seated position, he is able to remain upright for extended periods, by

> supporting himself with his hands on the floor in front of his body, between

> his legs. He now independently moves around the floor, in this way, pushing

> any pillows placed around him for protection, out of the way. For this

> reason, we have brought him a football foam protection helmet, to avoid

> injury. When seated, he often plays a game of leaning right back and

> pulling himself upright at the last minute, before he falls backwards. Sits

> on a little stool for extended periods of time, often with out support.

> BENEFITS: *D.M.G. supplement

> *Co Enzyme Q10 and activated Vitamin B3 supplements - was on these before

> discovering D.M.G. While not as effective, they did assist with his energy

> levels.

> *Diet - high fat / low carbohydrate / low acid forming (i.e. Alkaline

> forming foods) / all raw vegan diet and freshly juiced vegetable juices for

> fluids.

> *The intensive rehabilitation program definitely laid a good foundation to

> this progress.

>

> WAS: Struggled with chronic constipation, with bleeding, often requiring

> suppositories.

>

> NOW: Has very few digestive problems.

>

> BENEFITS: Change of diet.

> # Aside from secondary illnesses, the removal of the D.M.G. supplementation

> and a major set back after his 18 month immunization, (when he lost 3 to 4

> clear words of speech, which he has never regained - the beginnings of word

> forming and a greater vocal range has been a recent progression) has

> always been steadily improving, especially since coming off

> anti-convulsants.

> AN OVERVIEW OF ADRIAN'S DIET & SUPPLEMENTS.

> Diet: *Fruit - bananas, avocados, pears, apples, kiwi fruit, peaches,

> mangoes, paw paws, strawberries, nectarines, apricots, plums, custard apple,

> rock melon, water melon

> * " Nut Butter " - the following soaked overnight in water in the fridge and

> crushed: almonds, lima beans, dates, sunflower seeds, pumpkin seeds

> (pepita), sultans, raisins, figs, dried apricots, and prunes.

> *Tofu, tahini (crushed sesame seed paste)

> (On the few occasions we have given him cooked animal based products - eg

> egg custard - we have noticed a return of the " rattles " in the back of the

> throat and a swelling up of the old sty scares on his eyelids. had

> very bad sties on his eyes when younger, until we introduced this diet.)

> Fluids: Mainly fresh, raw, vegetable juices, esp. carrot with small amounts

> of celery, cucumber, beetroot, parsley, or spinach. (Occasionally, 100%

> bottled fruit juice, watered down)

> Supplements: *Barley green or alfalfa powder - heaped teaspoon per day

> (broad range alkalising nutrient)

> *Selenium yeast powder - 1/3 teaspoon per day (broad range nutrient & anti

> oxidant)

> *Grain based acidophilus/bifidus concentrate powder - ½ teaspoon per day

> *Calcium Ascorbate - 1/4 teaspoon per day (non acid vitamin C anti oxidant)

> *Calcium supplement - equivalent to 300mg per day (assist bone density)

> *Vitamin B12 - 250mcg per day (because of vegan diet)

> *Linseed/flaxseed oil - approx 5 ml per day (essential fatty acids esp.

> omega 3)

> *Taurine amino acid - 500 to 750 mg per day (assists with epilepsy and aids

> liver detox)

> *D.M.G. (N, N, -Dimethylglycins HCL 50 mgm/ml) - 5 to 7 ml per day. Of all

> the supplements we have ever used with , this is the one that has

> shown the most obvious, sustained, benefits. The first time we put him on

> it, with in 3 to 4 days, we saw a marked improvement in his epilepsy, energy

> levels, alertness, and a complete " drying up " of the rattling at the back of

> the throat. We did a trial of taking him off it, and with in 10 days,

> noticed a return or marked increase in all these things, even reverting back

> to not opening his mouth to feed, as was the case in his early months of

> life.

> Trust you find this of interest. There is much more we could share,

> concerning why we do what we are doing. Not sure about the " science " of it

> all, however the positive results are a testimony to the fact that any

> progression of the condition, is gradually being reversed. Though still a

> profoundly disabled boy, has good quality of life, and really loves

> his life. Though the journey for us has been an extremely difficult one,

> is a joy to be around, and we thank God for the blessing he has been

> to our lives.

>

> [ ] and

>

> > In a message dated 3/16/01 7:49:23 AM Eastern Standard Time,

> > howard@... writes:

> >

> > <<

> > Thought this overview of our son would be of interest to you. There are

> a

> > lot of similarities to what is presented in the letter below. If you

> want

> > information on D.M.G., then check out www.kirkmanlabs.com.

> > >>

> >

> > Yes, I AM VERY INTERESTED IN READING THIS about your son. ONLY I can't

> down

> > load it. It is too big for my computer. Can you copy and paste it to me

> > please?

> >

> > THANK YOU SO MUCH.

> >

> > _

> >

March 23, 2001

The D.M.G. prodcut (oral liquid) that we have been using, is produced by

" Metagenics " of Health World Limited, 8/663 Kingsford Drive, Eagle

Farm, Brisbane, Queensland, Australia, 4009. We got it in 100 ml bottles,

for approx $30 Aust.

Re: [ ] and

> In a message dated 3/22/01 9:09:18 AM Eastern Standard Time,

> howard@... writes:

>

> << D.M.G. (N, N, -Dimethylglycins HCL 50 mgm/ml) - 5 to 7 ml per day. >>

>

> I use this one for Karly but, mine is in a sublingual form of 125 mg DMG.

I

> haven't ever seen it in liquid. Where do you get that one?

>

March 23, 2001

,

Thank you for your encouragement and words of advice. At one point when he

was younger, I believe his protein intake was too restrictive. The almonds

(over 1kg a month) and lima beans (approx 3/4 kg per month) are a very

important part of his diet, providing a board protein range.

We have never noticed any problems with the tablet form of taurine, crushed

in his food, but will look into other forms, and ways of administration.

The calcium supplement we were giving him, did include magnesium. Without

weight bearing exercise, calcium is not well absorbed by the body. He is

getting more exercise, now that we have a Hart walker for him. For the sake

of finances we had to drop out some things, and this was one. Almonds, lima

beans, tahini, figs, parsley, and even the carrot juice are all good sources

of calcium. You can keep pumping the supplements in, but there absorption

rate is questionable, esp. without much weight bearing exercise.

He is one of the " healthiest looking sick kids you will ever see " !

Regards,

& Savage.

[ ] and

> >

> > > In a message dated 3/16/01 7:49:23 AM Eastern Standard Time,

> > > howard@... writes:

> > >

> > > <<

> > > Thought this overview of our son would be of interest to you. There

are

> > a

> > > lot of similarities to what is presented in the letter below. If you

> > want

> > > information on D.M.G., then check out www.kirkmanlabs.com.

> > > >>

> > >

> > > Yes, I AM VERY INTERESTED IN READING THIS about your son. ONLY I can't

> > down

> > > load it. It is too big for my computer. Can you copy and paste it to

me

> > > please?

> > >

> > > THANK YOU SO MUCH.

> > >

> > > _

> > >

March 23, 2001

Hi , You could get liquid DMG in the USA. DO NOT BUY the HlC form as the

folks in Australia are doing. Get the pure DMG in sublingual tablets. The HlC

form is diluted and made acid for preservation/solubility purposes. The

sublingual tablets are just as effective and cheaper since they are

100%DMG.Just let them dissolve under the tongue.

Warm regards

& Savage wrote:

> The D.M.G. prodcut (oral liquid) that we have been using, is produced by

> " Metagenics " of Health World Limited, 8/663 Kingsford Drive, Eagle

> Farm, Brisbane, Queensland, Australia, 4009. We got it in 100 ml bottles,

> for approx $30 Aust.

> Re: [ ] and

>

> > In a message dated 3/22/01 9:09:18 AM Eastern Standard Time,

> > howard@... writes:

> >

> > << D.M.G. (N, N, -Dimethylglycins HCL 50 mgm/ml) - 5 to 7 ml per day. >>

> >

> > I use this one for Karly but, mine is in a sublingual form of 125 mg DMG.

> I

> > haven't ever seen it in liquid. Where do you get that one?

> >

>

> _

>

March 23, 2001

Hi

Forgive me for persisting but almonds and lima beans will NOT supply complete

protein or sufficient protein.

Soy and derivatives contain about 20-25% of protein. In order to get 50 grams of

protein daily one must eat 50/.2=250 grams or more than half a pound of soy

products a day. I am not suggesting that 50 gms is the correct number for your

son. Only a nutritionist or a nutritionally oriented MD can tell you what the

correct amount is given his age, rate of development and level of activity.

Otherwise orient yourself based on the WHO guidelines and use them as minimums.

Other good source of protein is in the combination of rice and beans or rice and

corn. One needs to take BOTH foods the same day in order to bring in ALL the

needed amino acids (components of protein). Again you are talking about 1/2 a

pound of these foods in order to get 4-50 gms of protein.

A third source are marine plants such as spirulina which contain highly variable

amounts of complete protein.

One last word of advice.

Nutritional labels may state that certain foods contain so much protein. This

may be true or not, depending on whether the protein they report is COMPLETE

protein. Rice for instance, contains all the essential amino acids, except

Lysine. The body will not utilize rice's other amino acids until it can find in

the other foods enough lysine to " couple " it with all the other amino acids so

that the anabolic process of cell repair can continue.

Soy is almost the perfect protein in that it contains all the essential amino

acids but is low in one important one and thus a diet based entirely on soy will

eventually become deficient in that amino. Cow's milk ( I am not suggesting

taking it) is a perfect food from this standpoint. Meats(ditto) are also perfect

protein " carriers "

Warm regards

& Savage wrote:

> ,

>

> Thank you for your encouragement and words of advice. At one point when he

> was younger, I believe his protein intake was too restrictive. The almonds

> (over 1kg a month) and lima beans (approx 3/4 kg per month) are a very

> important part of his diet, providing a board protein range.

>

> We have never noticed any problems with the tablet form of taurine, crushed

> in his food, but will look into other forms, and ways of administration.

>

> The calcium supplement we were giving him, did include magnesium. Without

> weight bearing exercise, calcium is not well absorbed by the body. He is

> getting more exercise, now that we have a Hart walker for him. For the sake

> of finances we had to drop out some things, and this was one. Almonds, lima

> beans, tahini, figs, parsley, and even the carrot juice are all good sources

> of calcium. You can keep pumping the supplements in, but there absorption

> rate is questionable, esp. without much weight bearing exercise.

>

> He is one of the " healthiest looking sick kids you will ever see " !

>

> Regards,

>

> & Savage.

>

> [ ] and

> > >

> > > > In a message dated 3/16/01 7:49:23 AM Eastern Standard Time,

> > > > howard@... writes:

> > > >

> > > > <<

> > > > Thought this overview of our son would be of interest to you. There

> are

> > > a

> > > > lot of similarities to what is presented in the letter below. If you

> > > want

> > > > information on D.M.G., then check out www.kirkmanlabs.com.

> > > > >>

> > > >

> > > > Yes, I AM VERY INTERESTED IN READING THIS about your son. ONLY I can't

> > > down

> > > > load it. It is too big for my computer. Can you copy and paste it to

> me

> > > > please?

> > > >

> > > > THANK YOU SO MUCH.

> > > >

> > > > _

> > > >

March 23, 2001

In a message dated 3/23/01 10:40:55 AM Eastern Standard Time,

fcunsrial1@... writes:

<< Get the pure DMG in sublingual tablets. >>

We have been using DMG from Mountain Naturals. It is a sublingual form.

June 26, 2001

Ya know my mail is so strange. I did not even get a copy of my own mail I sent and also I would have never seen the one you sent, if I had not read nne's reply and seem it at the bottom. My e-mail is really screwed. Thanks for ya'll's concern about Hunt. He is feeling a lot better today but has a lot of congestion and a stuffy nose BUT his urine it getting darker and darker. Strange thing is that he had labs done Friday and they are were perfectly normal. So far the only time that his urine has gotten dark was when his lft's were up, so I am thinking that this has probably happened since Friday. I called his nurse and she did not seem concerned at all. Said it is most likely due to him not drinking enough water. She also told me to tell him to lower his pred to 12.5.!!!!! I just cannot not tell him that. I really think he should go get his labs done again if his urine is not clear in a couple of days. What do ya'll think? Oh, he has been on this dosage of 15 mgs for over 2 weeks so it doesn't seem like it would be withdrawal. I really think he should go get his labs done again if his urine is not clear in a couple of days. What do ya'll think?

, Hunt was, like you, supposed to reduce his meds every 2 wks also. That had not worked for him before, he kept having flare-ups, so I had him lower them every 3 weeks instead. It seemed to be working fine. At least it gave him more time to adjust and for us to figure out what level was too low for him. Sometimes I think the move too fast. As for the way, he was feeling, no, he usually does not feel this way UNLESS his lft's are up. So I just don't know what to think. , yes he did have a flu shot. I made sure of that and he has been healthier this year than ever, (except for his liver). It just irritates the heck out of me when the nurse or docs don't seem to think we know what we are talking about.

Happy 22nd birthday . I am glad it was a good one for you and that you felt good. I am sorry that you are getting ready to go through these feeling "yucky" again but I am sure glad that you are able to reduce your prednisone.

And , just keep your head up. The yucks will go away and you will have a month of peace, I hope.

God Bless you both

Rosemary

June 27, 2001

Hey Rosemary,

I'm sorry about Hunt feeling so bad. When the nurse told you to reduce his

prednisone, did she get the doctor's advice first? I find sometimes that

nurses are too quick to play doctor. I agree with you that it sounded like

strange advice. Does he have any pain elsewhere (kidney area perhaps?)

Tommy gets dark urine with both of his conditions (blood from kidney stones

and bilirubin from liver). Tommy usually gets most of his larger kidney

stones late summer through fall due to slight dehydration during late

spring and summer. I keep reminding him to drink, but you know kids. He

passes small kidney stones every day though. Personally, I think now would

be the time I would become a pain in the butt and insist upon another round

of blood tests AND a urine analysis (to rule out blood). You know Hunt

isn't going to push that matter. Have these nightly thunderstorms hit

Wilmington like they are hitting here? I know my allergies are really bad

right now. Maybe he's not used to the stuff flying around Wilmington yet.

He hasn't been there that long. Good luck with the docs. I know you will

feel better once you know the results of the new blood tests.

BTW. MIL is moving out in a month after Jim finds her an apt. in NM. Want

to party with me?!

Debbie (Tommy's Mom)

> [Original Message]

> From: <mamacdoo@...>

> < >

> Date: 6/27/01 12:41:02 AM

> Subject: Re: [ ] and

>

> Ya know my mail is so strange. I did not even get a copy of my own

mail I

> sent and also I would have never seen the one you sent, if I had

not

> read nne's reply and seem it at the bottom. My e-mail is really

screwed.

> Thanks for ya'll's concern about Hunt. He is feeling a lot better today

but

> has a lot of congestion and a stuffy nose BUT his urine it getting darker

and

> darker. Strange thing is that he had labs done Friday and they are were

> perfectly normal. So far the only time that his urine has gotten dark was

> when his lft's were up, so I am thinking that this has probably happened

> since Friday. I called his nurse and she did not seem concerned at all.

Said

> it is most likely due to him not drinking enough water. She also told me

to

> tell him to lower his pred to 12.5.!!!!! I just cannot not tell him that.

I

> really think he should go get his labs done again if his urine is not

clear

> in a couple of days. What do ya'll think? Oh, he has been on this dosage

of

> 15 mgs for over 2 weeks so it doesn't seem like it would be withdrawal. I

> really think he should go get his labs done again if his urine is not

clear

> in a couple of days. What do ya'll think?

>

> , Hunt was, like you, supposed to reduce his meds every 2 wks

> also. That had not worked for him before, he kept having flare-ups, so I

had

> him lower them every 3 weeks instead. It seemed to be working fine. At

least

> it gave him more time to adjust and for us to figure out what level was

too

> low for him. Sometimes I think the move too fast. As for the way, he was

> feeling, no, he usually does not feel this way UNLESS his lft's are up.

So I

> just don't know what to think. , yes he did have a flu shot. I made

sure

> of that and he has been healthier this year than ever, (except for his

> liver). It just irritates the heck out of me when the nurse or docs don't

> seem to think we know what we are talking about.

>

> Happy 22nd birthday . I am glad it was a good one for you and

> that you felt good. I am sorry that you are getting ready to go through

> these feeling " yucky " again but I am sure glad that you are able to

reduce

> your prednisone.

>

> And , just keep your head up. The yucks will go away and you will

have

> a month of peace, I hope.

>

> God Bless you both

> Rosemary

>

--- Debbie Henry

--- debbiehenry@...

--- Make every moment count!

June 27, 2001

Hi Rosemary,

Thanks for sending good wishes my way. I will be in the hospital Mon-Wed for my son Danny's surgery on his ankle. He is 16 but is afraid of hospitals (since his dad's death there and my multiple visits). He is frightened of even the elevator...will walk 5 flights of stairs rather than get in "that moving box"! Dan will be in a cast with no weight bearing for 6 weeks, then a walking cast for the next 6 weeks. He's gonna go nuts with the restrictions on activity...I'm already going nuts just thinking about it! But, we will survive OK with all the prayers and love that come to me and my kids. I will keep sending them your way as well.

Love,

June 27, 2001

Rosemary,

I understand how you feel about lowering the prednisone again without

making sure the cause of the dark urine first... I think I would rest

easier about further reductions that way. As for withdrawal...well

might still be that..I have been on 10 mg for over 2 weeks and really

having the yucks as far as fatigue and joint pain and aches.

Hope he continues to feel better....take care.

nne

> Ya know my mail is so strange. I did not even get a copy of my

own mail I

> sent and also I would have never seen the one you sent, if I

had not

> read nne's reply and seem it at the bottom. My e-mail is really

screwed.

> Thanks for ya'll's concern about Hunt. He is feeling a lot better

today but

> has a lot of congestion and a stuffy nose BUT his urine it getting

darker and

> darker. Strange thing is that he had labs done Friday and they are were

> perfectly normal. So far the only time that his urine has gotten

dark was

> when his lft's were up, so I am thinking that this has probably

happened

> since Friday. I called his nurse and she did not seem concerned at

all. Said

> it is most likely due to him not drinking enough water. She also

told me to

> tell him to lower his pred to 12.5.!!!!! I just cannot not tell him

that. I

> really think he should go get his labs done again if his urine is

not clear

> in a couple of days. What do ya'll think? Oh, he has been on this

dosage of

> 15 mgs for over 2 weeks so it doesn't seem like it would be

withdrawal. I

> really think he should go get his labs done again if his urine is

not clear

> in a couple of days. What do ya'll think?

>

> , Hunt was, like you, supposed to reduce his meds every 2

wks

> also. That had not worked for him before, he kept having flare-ups,

so I had

> him lower them every 3 weeks instead. It seemed to be working fine.

At least

> it gave him more time to adjust and for us to figure out what level

was too

> low for him. Sometimes I think the move too fast. As for the way, he

was

> feeling, no, he usually does not feel this way UNLESS his lft's are

up. So I

> just don't know what to think. , yes he did have a flu shot. I

made sure

> of that and he has been healthier this year than ever, (except for his

> liver). It just irritates the heck out of me when the nurse or docs

don't

> seem to think we know what we are talking about.

>

> Happy 22nd birthday . I am glad it was a good one for

you and

> that you felt good. I am sorry that you are getting ready to go

through

> these feeling " yucky " again but I am sure glad that you are able to

reduce

> your prednisone.

>

> And , just keep your head up. The yucks will go away and you

will have

> a month of peace, I hope.

>

> God Bless you both

> Rosemary

June 28, 2001

Thank you all for the birthday best wishes!!

Rosemary,

To be honest if it were me I would have some bloods done before I

took the reduction. Bloods are a picture of the state of the liver at

that particular time, and if his urine has darkened since then I

would like to be sure first. I never reduce my pred before I have

blood work done & it has come back ok , especially if I'm not feeling

good.

I personally, would only take instructions from my specialist.

Best wishes

June 29, 2001

Hi Casey,

Love the picture, they are beautiful.

Mabel, mom to Carolina, Cristian and a-ds (27 months old)

>From: GVanHouten <rjvh@...>

>Reply-Multiples-DS

>Multiples-DS

>Subject: and

>Date: Thu, 28 Jun 2001 11:07:22 -0400

>

>Hi Casey!

>Just saw your new picture, they are too cute! They look alot alike! Some

>twins don't. I don't think mine do at all.......any way, thanks for

>sharing........

> Gail ........Bobby 7, Jillian 3/4, and Tara{Ds} 27months

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

September 24, 2001

Hi!! Yes, I have never stopped using the cream for 4 weeks.

They did finally refer us to a dermatologist - but the soonest

we can get in is in 3 weeks!

> Have you tried to keep on using the cream for a few days after the

> rash appears to be gone? If the pedatrician can't help, will they

> refer you to a dermatologist?

November 29, 2001

Hi ,

I am so impressed with your for all the work you have done to give up sugar

and white flour. That is an accomplishment.

Over all, I just simply can't bring myself to endorse what most refer to as

diets. I have worked in health and fitness for well over 30 years and what I

have seen is that long term, deprivation just doesn't cut it.

The idea is to create a way of eating that is healthy, yet allows you to

enjoy food. I recently saw an eating program that said to eat 90% healthy

and 10% what we refer to as junk food. What impressed me when reading it is

that this is pretty much the way I have been eating for most of my life and

combining this with Life Lift and some really good supplements I have

maintained the same size for well over 20 years. Even though I recently

turned 57 I am still shopping in the stores where they carry the clothes for

younger girls. It seems they fit me best. I can still wearing the same jeans

and skirts that I have worn for years.

I attribute this to several things. To say it is only one thing would be

absurd.

Yes, I do Life Lift as my exercise program almost daily. I have learned to

make it a part of my life. I do it while in the shower, or bath tub. I do it

while at the computer. I do it while driving. About 10 breaths each time. I

will stop and do the stretches and flexes to keep my arms and legs firm for

about 10 to 15 minutes. I also know it helps keep my face looking better

too. My eye sight is always better when I am doing lots of Life Lift breaths

daily.

Your attitude is as important as your exercise.

I believe strongly that we need to use affirmations to keep our mind focused

on our positive goals.

Drink your water! Without it you will be struggling forever.

Eat your meals often. I usually have 3 medium sized meals and 3 snacks

daily. I have trained myself to always have something handy if I am busy so

I don't forget to eat the snacks. Keeping your body fueled is vital.

Press the Reflexology points that stimulate your thyroid and digestive

system.

I do this each and every day as I do some Life Lift breaths.

The points are on your hands and feet and on your throat right directly

below your jaw line.

Spend a few minutes daily pressing the point under your jaw line and also

rubbing the bottoms of your feet and the palms of your hands while you are

doing some of your Life Lift breaths.

I trust that you will be sending us lots of good news soon on your progress.

Take good care,

Rashelle

> Thanks for your advice Rashelle.

>

> Like I was telling Gaylyn, up to until I got pregnant with my last baby

> who is 2 now, i was on a very strict diet for 21 YEARS!. I grew up in an

> atmosphere where your looks are so important! After I had the baby I had

> so many complications i did not diet, and of course, all those years of

> " forbidden " food had my name on it.

>

> For about a year, I have balance the desire, and I no longer crave sugar

> and white flour like crazy. If i go to a birthday party, I eat a little

> cake, but I regularly don't eat that stuff. Nontheless, I have tried to

> loose weight for over a year, without the strong restrictions I was used

> to, and it seems impossible to loose weight.

>

> I was almost a karate black belt throut my 30's and I used to exercise 3

> to 5 hours a day. Unfortunately, my health does not allow me to do

> that type of exercise anymore. I used to love it! And it also kept me

> in real good shape.

>

> I am not a tall person, and I need to loose about 50 pounds. On March

> 29 will be my 40th birthday, and I really would like to have it off by

> then. But it looks like I am going to have to do it the hard way. I

> know just about everything there is to know about diets, but just did

> not want to imposed being too hard on my body. I have had very difficult

> circumstances in the past 5 years, and I really needed to give myself a

> brake from so much dicipline.

>

> I tried for a couple of days the cleanse, but I did not see any

> changes. Overall my body and muscles are VERY strong and lean, despite

> my weight, and everybody mistakes me from being a lot younger than I am.

> But my weight have become a real burden in my life, and really would

> like to just be able to go back to the way I used to look.

>

> Love,

>

April 24, 2003

The Cochlear Club is no longer CICI

It is CIAI Cochlear Implant Association International. they are Based in

Washington D.C.

from MO Retired President of the St. Louis CIAI Chapter

New to list!

>

> Hi! I am new to this list. My son, , is 8 1/2 years old. He

> was diagnosed with a mild to moderate hearing loss 2 1/2 years ago. It's

> a long story, but we know he always had some loss. Anyway, his loss has

> progressed significantly again and he is now severe at 250 Hz and

> Profound from 500 Hz on up. He has had CT's, MRI's, and lots of blood

> work, but the cause is unknown - as is the case much of the time, I

> know! He starts the CI evaluation process in June. I am interested in

> hearing how others adjusted and how you chose the equipment and what

> works and what doesn't work well. I think it is particualrly important

> for me to eget this information from adults who have expreienced this so

> I can nest make this decision for my son. I also think it might be good

> for him to meet adults and children who have implants so he can see them

> and ask questions. If anyone knows of some kind of CI group in NC,

> please let me know! You can email me privately stephanie@... . All

> advice and words of wisdom are appreciated! Thanks!

> in NC

>

> ________________________________________________________________

> The best thing to hit the internet in years - Juno SpeedBand!

> Surf the web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

>

April 24, 2003

<Best part is the battery life. Average of 50 hours between battery changes,

which means won't have to carry lots spare batteries with him all the

time, and recharge them like with another BTE brand.Also the cost of the

disposable batteries is a lot less.>

, keep in mind the new Auria does NOT require you to " carry lots of spare

batteries around all the time... " The standard battery will last approx. 9

hours and the extended life battery will last a day and a half. I don't even

have the Auria and I don't carry lots of batteries around all the time...

*smile*

Also, insurance company pays for my rechargeable batteries.

Sherry

June 29, 2004

from Dale, Mom to Katy, CVID, age 20

, has he done a level check to see what her IgG levels are after

IVIG? She may need an increase in dosage. The dosage is based on

body weight -- but, it should be increased or decreased based on the

response to the IVIG. That said, let me back up. When you first begin

IVIG there is a period when the body just soaks up the IgG and you run

out early. It takes several months (I don't know how long) to reach a

stable point. So, there's a reason to wait and see, but if she's

getting sick -- there's a reason to look at all possibilities which are

wait and see, increase dosage, increase frequency. More and more

doctors are going to a 3 week schedule if the 4 weeks won't hold because

the half-life of IVIG has been determined to be 21 days -- so she

becomes less and less protected after that point. Katy's still okay at

4 weeks (no major infections) -- but she droops. One doctor wanted to

check Katy's IgG level once a week for a 6 week period to help him

decide when to re-infuse. Katy said " no thank you, you may stick me

onece a month and that's my limit! " So, he just checked at 4 weeks and

decided that she needed to be re-infused at 4.

And, knowing you -- you'll take care of everything at home -- make sure

you let the doctor document how sick is between IVIG -- so that

insurance can't fight you about her need to have IVIG sooner or at a

higher dose than originally prescribed -- if indeed you go that route.

Documentation is essential to keep insurance companies happy.

Hope you get this figured out and get well. Don't forget PID

kids still need antibiotics for infections -- IVIG is not a cure-all!

In His service,

Dale

> She is on 10 gms of Polygam 10% every 28 days, I wonder if we should wait it

> out or try to increase the dose for longer efficacy?? I know we are not Dr's

> but advise is always great.

>

June 29, 2004