Good news

[Guest guest]

Carol, So glad to hear the good news. Bet you had a wonderful weekend and

got a little sleep.lol Congratulations. We're gonna beat this thing yet.

Have a great day.

Love and answered prayers

C

[Guest guest]

WONDERFUL, GREAT, TERRIFIC, FANTASTIC news Carol!!!!!!! Thanks for sharing

it with us.

What a way to start a Monday!!!!!!

>>>>>>>>>>>>>>>>>>>>>>>

My cancer screens came back good, no cancer apparent anywhere. The

lyph nodes are smaller too. The oncologist met with my rheumy and

respiratory spec. and feel now the rheumy needs to decide what the

next avenue of attack will be against the RP. So, had a much saner

weekend than anticipated. I'm sure the prayers and support of my

cyber friends had a great deal to do with this one! Carol.

[Guest guest]

Congratulations Carol on the good news. Keep us posted on your progress with

the Rhuemy. Just me, Kathleen (NY)

[Guest guest]

--the cancer suspected area were my lymph nodes beneath my heart. Am

sooo glad that's been ruled out--don't need any more problems right now!

Thanks. Carol.

[Guest guest]

Carol,

I'm glad to hear all is okay as far as the cancer

goes. Where was it suspected that you might have it?

Nancie

--- CAOtto1@... wrote:

> My cancer screens came back good, no cancer apparent

> anywhere. The

> lyph nodes are smaller too. The oncologist met with

> my rheumy and

> respiratory spec. and feel now the rheumy needs to

> decide what the

> next avenue of attack will be against the RP. So,

> had a much saner

> weekend than anticipated. I'm sure the prayers and

> support of my

> cyber friends had a great deal to do with this one!

> Carol.

>

>

=====

" A real friend is one who walks in when the rest of the world walks out. "

__________________________________________________

[Guest guest]

More GREAT news Heidi!! Thanks for letting us know. I was praying for

today and I'm so glad she doesn't have to stay overnight at the hospital.

Did you find out about her grandbaby???? Is it a boy or a girl??? Mom and

baby doing OK????

I will send her flowers tomorrow from the flower fund!!! Oops, don't read

this !!!! LOL

Thanks for letting us know about , Heidi.

>>>>>>>>>>>>>>>>>>>>>>>>>>>

Hallo Everyone !!

It's time to celebrate some good news from !!!!!!!

She made it true the surgery just fine .She also got to

go home this evening . The Dr. found less damage then the

at first thought. She had some loose cartilage pieces that

was pressing against some nerves .Her knee cartilages are soft

and of course that is the RP. But she is doing Ok .I will call her

tomorrow and let you all know how she is doing .So maybe you

like to send her a card .Here is her address .

Lierman

928 Choctaw Ridge Rd.

Midwest, City Okla. 73130

Wow , I am so happy for .Bless her heart she has been true

hell the last few weeks. Yup, her employer also notify her last week

that as of today she no longer has a job.unless she comes to work

today and is able to be productive . Ja Right .!!!! I know will not

be able to return to work . So I hope and Pray for her and all of you

what is trying to go on S.S. that at least it will go smoothly .Well I

guess I better hush for now .I wish you all a very happy Pain Free

evening . I am also sending you all a gentle hug with lots of Love from

the crazy German here . LOL

[Guest guest]

Love to you too Heidi, I love reading your posts. You are so sweet

and caring, your hubby found a gold mine when he found you! I hope

he knows how fortunate he is to have such a loving person for a mate!

I do appreciate the phone calls and the phone list you sent us. It

is a big help. Just dropped in to tell you what you mean to this

group and to me. Love and Prayers, Lucy in NC.

Heidi Main wrote:

Hallo

Everyone !!It's time to

celebrate some good news from !!!!!!!She

made it true the surgery just fine .She also got togo

home this evening . The Dr. found less damage then theat

first thought. She had some loose cartilage pieces thatwas

pressing against some nerves .Her knee cartilages are softand

of course that is the RP. But she is doing Ok .I will call hertomorrow

and let you all know how she is doing .So maybe youlike

to send her a card .Here is her address .

Lierman928 Choctaw Ridge

Rd.Midwest, City Okla. 73130 Wow

, I am so happy for .Bless her heart she has been truehell

the last few weeks. Yup, her employer also notify her last weekthat

as of today she no longer has a job.unless she comes to worktoday

and is able to be productive . Ja Right .!!!! I know will notbe

able to return to work . So I hope and Pray for her and all of youwhat

is trying to go on S.S. that at least it will go smoothly .Well Iguess

I better hush for now .I wish you all a very happy Pain Freeevening

.. I am also sending you all a gentle hug with lots of Love fromthe

crazy German here . LOL

hi and welcome. maybe we can come up with answers that our doctors

can't

[Guest guest]

Delighted at your good news Debbie.

Maeve

Good news

> There is a silver lining!!!!

>

> After another day of watching (and hearing!!) about Adam I decided I can't

own this anymore.

> For my sanity and his own--I'm calling our school battles quits!!

Actually, the teacher saw

> it on his poor face and mine (we look alike and she said we both have the

same depressed,

> sleep deprived look LOL) so she even suggested WE all back off (glad to

hear she's OK with

> this).

>

> So tonight I didn't ask about school or ANYTHING. I took out his homework

as usual and put

> it on the table. That's it. I've been lying reading a book for the last

hour (I deserve

> it!!!)

>

> I was moving around and noticed the scale. Here's the silver lining!!!! I

thought " hey I

> haven't weighed Adam lately--let's see " . So when we started GH on January

3rd he weighed

> 37.5 lbs (my scale at home is new, and it's consistently been 1.5 lbs off

from the endo. and

> I've been weighing him constantly since I bought the thing). So I did

everything as usual

> (same spot on the floor etc. etc.) and he has gained TWO pounds since we

started

> GH!!!!!!!!!!

>

> WHOOPEE!!!!!!!!!!

>

> He was 34.5 lbs for a year and a half (not even an ounce of gain), over

the summer (prior to

> GH) he put on 3 lbs (but that stopped around Oct. or Nov.) and there's

been no gain since.

> He still weighed 37.5 lbs after 3 weeks of GH...so in the last 4 weeks

he's gained 2 lbs. I

> can't believe it.

> We got a cm. in height in the first 3 weeks, no change there, but it seems

to be going to

> the weight.

>

> And now that I am on the computer he just came in to remind ME he has

homework!!!!

>

> I figured too much negative attention around the school stuff. So I back

off and now he's

> taking on the role of remembering the work (now getting it done is another

matter, but it's

> not for me to say anymore)!!

>

> I am so exhausted. But am so so thrilled. Pray the insurance eventually

kicks in, I think we

> have something good happening here for my boy!!

>

> Thanks all for your never ending support

>

> Debby

>

>

>

>

>

>

[Guest guest]

Delighted at your good news Debbie.

Maeve

Good news

> There is a silver lining!!!!

>

> After another day of watching (and hearing!!) about Adam I decided I can't

own this anymore.

> For my sanity and his own--I'm calling our school battles quits!!

Actually, the teacher saw

> it on his poor face and mine (we look alike and she said we both have the

same depressed,

> sleep deprived look LOL) so she even suggested WE all back off (glad to

hear she's OK with

> this).

>

> So tonight I didn't ask about school or ANYTHING. I took out his homework

as usual and put

> it on the table. That's it. I've been lying reading a book for the last

hour (I deserve

> it!!!)

>

> I was moving around and noticed the scale. Here's the silver lining!!!! I

thought " hey I

> haven't weighed Adam lately--let's see " . So when we started GH on January

3rd he weighed

> 37.5 lbs (my scale at home is new, and it's consistently been 1.5 lbs off

from the endo. and

> I've been weighing him constantly since I bought the thing). So I did

everything as usual

> (same spot on the floor etc. etc.) and he has gained TWO pounds since we

started

> GH!!!!!!!!!!

>

> WHOOPEE!!!!!!!!!!

>

> He was 34.5 lbs for a year and a half (not even an ounce of gain), over

the summer (prior to

> GH) he put on 3 lbs (but that stopped around Oct. or Nov.) and there's

been no gain since.

> He still weighed 37.5 lbs after 3 weeks of GH...so in the last 4 weeks

he's gained 2 lbs. I

> can't believe it.

> We got a cm. in height in the first 3 weeks, no change there, but it seems

to be going to

> the weight.

>

> And now that I am on the computer he just came in to remind ME he has

homework!!!!

>

> I figured too much negative attention around the school stuff. So I back

off and now he's

> taking on the role of remembering the work (now getting it done is another

matter, but it's

> not for me to say anymore)!!

>

> I am so exhausted. But am so so thrilled. Pray the insurance eventually

kicks in, I think we

> have something good happening here for my boy!!

>

> Thanks all for your never ending support

>

> Debby

>

>

>

>

>

>

[Guest guest]

Delighted at your good news Debbie.

Maeve

Good news

> There is a silver lining!!!!

>

> After another day of watching (and hearing!!) about Adam I decided I can't

own this anymore.

> For my sanity and his own--I'm calling our school battles quits!!

Actually, the teacher saw

> it on his poor face and mine (we look alike and she said we both have the

same depressed,

> sleep deprived look LOL) so she even suggested WE all back off (glad to

hear she's OK with

> this).

>

> So tonight I didn't ask about school or ANYTHING. I took out his homework

as usual and put

> it on the table. That's it. I've been lying reading a book for the last

hour (I deserve

> it!!!)

>

> I was moving around and noticed the scale. Here's the silver lining!!!! I

thought " hey I

> haven't weighed Adam lately--let's see " . So when we started GH on January

3rd he weighed

> 37.5 lbs (my scale at home is new, and it's consistently been 1.5 lbs off

from the endo. and

> I've been weighing him constantly since I bought the thing). So I did

everything as usual

> (same spot on the floor etc. etc.) and he has gained TWO pounds since we

started

> GH!!!!!!!!!!

>

> WHOOPEE!!!!!!!!!!

>

> He was 34.5 lbs for a year and a half (not even an ounce of gain), over

the summer (prior to

> GH) he put on 3 lbs (but that stopped around Oct. or Nov.) and there's

been no gain since.

> He still weighed 37.5 lbs after 3 weeks of GH...so in the last 4 weeks

he's gained 2 lbs. I

> can't believe it.

> We got a cm. in height in the first 3 weeks, no change there, but it seems

to be going to

> the weight.

>

> And now that I am on the computer he just came in to remind ME he has

homework!!!!

>

> I figured too much negative attention around the school stuff. So I back

off and now he's

> taking on the role of remembering the work (now getting it done is another

matter, but it's

> not for me to say anymore)!!

>

> I am so exhausted. But am so so thrilled. Pray the insurance eventually

kicks in, I think we

> have something good happening here for my boy!!

>

> Thanks all for your never ending support

>

> Debby

>

>

>

>

>

>

[Guest guest]

Debby,

YEEEHAAAAA

Big hugz to you and Adam, way to go eh? lol

Keep up the great work!!

In our prayers

Nikki - mom to 6 and Nala the couch-scratchin cat :-(

>

>

>There is a silver lining!!!!

>

>After another day of watching (and hearing!!) about Adam I decided I can't

>own this anymore.

>For my sanity and his own--I'm calling our school battles quits!! Actually,

>the teacher saw

>it on his poor face and mine (we look alike and she said we both have the

>same depressed,

>sleep deprived look LOL) so she even suggested WE all back off (glad to

>hear she's OK with

>this).

>

>So tonight I didn't ask about school or ANYTHING. I took out his homework

>as usual and put

>it on the table. That's it. I've been lying reading a book for the last

>hour (I deserve

>it!!!)

>

>I was moving around and noticed the scale. Here's the silver lining!!!! I

>thought " hey I

>haven't weighed Adam lately--let's see " . So when we started GH on January

>3rd he weighed

>37.5 lbs (my scale at home is new, and it's consistently been 1.5 lbs off

>from the endo. and

>I've been weighing him constantly since I bought the thing). So I did

>everything as usual

>(same spot on the floor etc. etc.) and he has gained TWO pounds since we

>started

>GH!!!!!!!!!!

>

>WHOOPEE!!!!!!!!!!

>

>He was 34.5 lbs for a year and a half (not even an ounce of gain), over the

>summer (prior to

>GH) he put on 3 lbs (but that stopped around Oct. or Nov.) and there's been

>no gain since.

>He still weighed 37.5 lbs after 3 weeks of GH...so in the last 4 weeks he's

>gained 2 lbs. I

>can't believe it.

>We got a cm. in height in the first 3 weeks, no change there, but it seems

>to be going to

>the weight.

>

>And now that I am on the computer he just came in to remind ME he has

>homework!!!!

>

>I figured too much negative attention around the school stuff. So I back

>off and now he's

>taking on the role of remembering the work (now getting it done is another

>matter, but it's

>not for me to say anymore)!!

>

>I am so exhausted. But am so so thrilled. Pray the insurance eventually

>kicks in, I think we

>have something good happening here for my boy!!

>

>Thanks all for your never ending support

>

>Debby

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Debby,

YEEEHAAAAA

Big hugz to you and Adam, way to go eh? lol

Keep up the great work!!

In our prayers

Nikki - mom to 6 and Nala the couch-scratchin cat :-(

>

>

>There is a silver lining!!!!

>

>After another day of watching (and hearing!!) about Adam I decided I can't

>own this anymore.

>For my sanity and his own--I'm calling our school battles quits!! Actually,

>the teacher saw

>it on his poor face and mine (we look alike and she said we both have the

>same depressed,

>sleep deprived look LOL) so she even suggested WE all back off (glad to

>hear she's OK with

>this).

>

>So tonight I didn't ask about school or ANYTHING. I took out his homework

>as usual and put

>it on the table. That's it. I've been lying reading a book for the last

>hour (I deserve

>it!!!)

>

>I was moving around and noticed the scale. Here's the silver lining!!!! I

>thought " hey I

>haven't weighed Adam lately--let's see " . So when we started GH on January

>3rd he weighed

>37.5 lbs (my scale at home is new, and it's consistently been 1.5 lbs off

>from the endo. and

>I've been weighing him constantly since I bought the thing). So I did

>everything as usual

>(same spot on the floor etc. etc.) and he has gained TWO pounds since we

>started

>GH!!!!!!!!!!

>

>WHOOPEE!!!!!!!!!!

>

>He was 34.5 lbs for a year and a half (not even an ounce of gain), over the

>summer (prior to

>GH) he put on 3 lbs (but that stopped around Oct. or Nov.) and there's been

>no gain since.

>He still weighed 37.5 lbs after 3 weeks of GH...so in the last 4 weeks he's

>gained 2 lbs. I

>can't believe it.

>We got a cm. in height in the first 3 weeks, no change there, but it seems

>to be going to

>the weight.

>

>And now that I am on the computer he just came in to remind ME he has

>homework!!!!

>

>I figured too much negative attention around the school stuff. So I back

>off and now he's

>taking on the role of remembering the work (now getting it done is another

>matter, but it's

>not for me to say anymore)!!

>

>I am so exhausted. But am so so thrilled. Pray the insurance eventually

>kicks in, I think we

>have something good happening here for my boy!!

>

>Thanks all for your never ending support

>

>Debby

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Debby,

YEEEHAAAAA

Big hugz to you and Adam, way to go eh? lol

Keep up the great work!!

In our prayers

Nikki - mom to 6 and Nala the couch-scratchin cat :-(

>

>

>There is a silver lining!!!!

>

>After another day of watching (and hearing!!) about Adam I decided I can't

>own this anymore.

>For my sanity and his own--I'm calling our school battles quits!! Actually,

>the teacher saw

>it on his poor face and mine (we look alike and she said we both have the

>same depressed,

>sleep deprived look LOL) so she even suggested WE all back off (glad to

>hear she's OK with

>this).

>

>So tonight I didn't ask about school or ANYTHING. I took out his homework

>as usual and put

>it on the table. That's it. I've been lying reading a book for the last

>hour (I deserve

>it!!!)

>

>I was moving around and noticed the scale. Here's the silver lining!!!! I

>thought " hey I

>haven't weighed Adam lately--let's see " . So when we started GH on January

>3rd he weighed

>37.5 lbs (my scale at home is new, and it's consistently been 1.5 lbs off

>from the endo. and

>I've been weighing him constantly since I bought the thing). So I did

>everything as usual

>(same spot on the floor etc. etc.) and he has gained TWO pounds since we

>started

>GH!!!!!!!!!!

>

>WHOOPEE!!!!!!!!!!

>

>He was 34.5 lbs for a year and a half (not even an ounce of gain), over the

>summer (prior to

>GH) he put on 3 lbs (but that stopped around Oct. or Nov.) and there's been

>no gain since.

>He still weighed 37.5 lbs after 3 weeks of GH...so in the last 4 weeks he's

>gained 2 lbs. I

>can't believe it.

>We got a cm. in height in the first 3 weeks, no change there, but it seems

>to be going to

>the weight.

>

>And now that I am on the computer he just came in to remind ME he has

>homework!!!!

>

>I figured too much negative attention around the school stuff. So I back

>off and now he's

>taking on the role of remembering the work (now getting it done is another

>matter, but it's

>not for me to say anymore)!!

>

>I am so exhausted. But am so so thrilled. Pray the insurance eventually

>kicks in, I think we

>have something good happening here for my boy!!

>

>Thanks all for your never ending support

>

>Debby

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Hi Lori.....I have a 3 year old little boy .....he also has a complex I

problem and has a stander for weight-bearing exercises. I just found this

site...I had no idea ther were so many of us out there. He can't sit, crawl,

walk, talk, hear, anything...it's very sad but we love him alot......he's on

Q10, Tegretol and Aldactone...is your little boy on other supplements that

have helped his motor strength and coordination? Thanks fo rthe info..Liz

[Guest guest]

Go , go!! That is great news!

good news

Well, thought I'd share good news for a change. We switched PT's and have been focusing on weight bearing on legs and pretty much took his weight today standing. It seems that his muscles were too tight before so he couldn't stand even if had enough tone. Stupid me, did not know this. I think it will take a lot of work but I'm kind of fired up for once. Gotta get some AFO's for him ASAP. Now, I wonder whether there's a correlation between the DMG that we started three weeks ago and the recent motor progress? Hard to know because we also increased PT stuff at home at the same time.

Take care everyone! Lori and (2 1/2, complexes I and IV)Please contact mito-owner with any problems or questions.

[Guest guest]

Hey there!

My also has Complex 1.

Co- Q was great and she had more energy when she first got on it two years ago. When she was off of it for two weeks recently I could not tell the difference when she got back on it, like its not doing what it once was.

Also when started Carnitor she had more energy.

Good luck to you and ,

Horsley

Mom to 11

[Guest guest]

Great news!!!

Go Go!!!

Expecting to here more good things!

Horsley

Mom to 11

[Guest guest]

Hi, Lori -- did you ever receive the posters and info I sent you? Suz

Lori Cutillo wrote:

Well, thought I'd share good news for a change. We switched PT's and have been focusing on weight bearing on legs and pretty much took his weight today standing. It seems that his muscles were too tight before so he couldn't stand even if had enough tone. Stupid me, did not know this. I think it will take a lot of work but I'm kind of fired up for once. Gotta get some AFO's for him ASAP. Now, I wonder whether there's a correlation between the DMG that we started three weeks ago and the recent motor progress? Hard to know because we also increased PT stuff at home at the same time.

Take care everyone! Lori and (2 1/2, complexes I and IV)Please contact mito-owner with any problems or questions.

[Guest guest]

Liz,

Welcome to the group.

Our son (6 years old) has been diagnosed with a complex IV mito

disorder. He can't walk, crawl or talk, but is a very happy, active boy.

Here is an overview of his journey that may interest you.

AN OVERVIEW OF ADRIAN SAVAGE'S PROGRESS. (Jan 2002)

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. (Check out www.iahp.org or www.nacd.org)

*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 nearly 3 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, used to move around the floor on his back (we

don't put him on the floor much now that he has a Hart , which he

regularly [2 x 1 or 2hr sessions per day] makes good use of, as energy

levels allow). 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 in his A.F.O'

s, 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

(esp. his spoon in his right hand). If placed on the floor in a seated

position, he is able to remain upright for several hours, using his hands on

the floor, between his legs, for limited support. 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 - higher fat / lower 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) (Check out http://hacres.com on

the Net)

*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. We again trailed off the D.M.G. recently. He was off it for

over 2 months when we started to notice a return of the " rattles " in the

back of his throat, and an increased susceptibility to secondary illnesses.

We returned him to a 2ml per day maintenance dose, as of the 17th April, and

have noticed a marked improvement in these areas again. (Check out

www.kirkmanlabs.com on the Net)

The transcript of an extensive interview we conducted with a representee of

Queensland Advocacy Incorporated, concerning our experiences in dealing with

the medical system, and other disability services on the journey of caring

for , can be found at www.qai.org.au by clicking on " Learning on line "

and then " Genetic doctors " . Our prayer is that by sharing our story, others

on a similar journey will find encouragement, and that it would be a

catalysts to reforms with in the medical/disabilities services sector.

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.

Regards,

& Savage. (Queensland, Australia)

Re: good news

> Hi Lori.....I have a 3 year old little boy .....he also has a

complex I

> problem and has a stander for weight-bearing exercises. I just found this

> site...I had no idea ther were so many of us out there. He can't sit,

crawl,

> walk, talk, hear, anything...it's very sad but we love him alot......he's

on

> Q10, Tegretol and Aldactone...is your little boy on other supplements that

> have helped his motor strength and coordination? Thanks fo rthe

info..Liz

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Lori,

Great to hear more good news!!

Regards,

& Savage.

good news

Well, thought I'd share good news for a change. We switched PT's and have been focusing on weight bearing on legs and pretty much took his weight today standing. It seems that his muscles were too tight before so he couldn't stand even if had enough tone. Stupid me, did not know this. I think it will take a lot of work but I'm kind of fired up for once. Gotta get some AFO's for him ASAP. Now, I wonder whether there's a correlation between the DMG that we started three weeks ago and the recent motor progress? Hard to know because we also increased PT stuff at home at the same time.

Take care everyone! Lori and (2 1/2, complexes I and IV)Please contact mito-owner with any problems or questions.

[Guest guest]

I got my pathology report back from the biopsy the dr did during my endo/colonoscopy and everything checked out fine. Apparently I had a polyp. Anyways, I didn't expect it to say anything but that, I figure I'm too young for colon cancer but I know that's stupid. One thing my gastro suggested to help the acid reflux was not eating before i go to bed. Now, I ask you, how do you do that when you're in pain and you have to take pain medicine when it occurs and eat with it or puke up your guts? Dumb dr!

I had my MRI's yesterday(meaning Monday)..because of holiday prolly won't get the results of those til Monday. Maybe tomorrow if we're lucky....we'll see. I'd really like to not have to worry about it during the holiday. I was able to make a sooner than March appt with the endocrinologist on(get this) Christmas eve. Wow, I guess some doctors do actually work holidays huh? Anyways, it's in the morning and my mom has to work half a day anyways so it won't mess up our plans.

Well, it's time to close. Have a wonderful Thankgiving everyone!

Sharon

[Guest guest]

Sharon,

Our office closes Thurs & Fri for Thanksgiving, but on Christmas Eve we'll be there 1/2 day, off Christmas Day, then back for a full day Fri, 12/26.

P.

.. I was able to make a sooner than March appt with the endocrinologist on(get this) Christmas eve. Wow, I guess some doctors do actually work holidays huh? Anyways, it's in the morning and my mom has to work half a day anyways so it won't mess up our plans.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Good news!

If you routinely have to take a pain pill why not take it about an hour or so before bed?

Also, if you have to eat with it--some dry crackers usually aren't as bad on the reflux and if you drink with something.

If you can put some blocks under the legs of the head of your bed to raise the head of your bed about 4-6" that is also a big help. And of course not sleeping on your right side.

Kathy

Good news

I got my pathology report back from the biopsy the dr did during my endo/colonoscopy and everything checked out fine. Apparently I had a polyp. Anyways, I didn't expect it to say anything but that, I figure I'm too young for colon cancer but I know that's stupid. One thing my gastro suggested to help the acid reflux was not eating before i go to bed. Now, I ask you, how do you do that when you're in pain and you have to take pain medicine when it occurs and eat with it or puke up your guts? Dumb dr!

I had my MRI's yesterday(meaning Monday)..because of holiday prolly won't get the results of those til Monday. Maybe tomorrow if we're lucky....we'll see. I'd really like to not have to worry about it during the holiday. I was able to make a sooner than March appt with the endocrinologist on(get this) Christmas eve. Wow, I guess some doctors do actually work holidays huh? Anyways, it's in the morning and my mom has to work half a day anyways so it won't mess up our plans.

Well, it's time to close. Have a wonderful Thankgiving everyone!

SharonPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Oh, no! Not sleeping on my right side? That's the only way I CAN sleep. Oh well, I'm lucky, I only get it occassionally.

Sharon

Good news

I got my pathology report back from the biopsy the dr did during my endo/colonoscopy and everything checked out fine. Apparently I had a polyp. Anyways, I didn't expect it to say anything but that, I figure I'm too young for colon cancer but I know that's stupid. One thing my gastro suggested to help the acid reflux was not eating before i go to bed. Now, I ask you, how do you do that when you're in pain and you have to take pain medicine when it occurs and eat with it or puke up your guts? Dumb dr!

I had my MRI's yesterday(meaning Monday)..because of holiday prolly won't get the results of those til Monday. Maybe tomorrow if we're lucky....we'll see. I'd really like to not have to worry about it during the holiday. I was able to make a sooner than March appt with the endocrinologist on(get this) Christmas eve. Wow, I guess some doctors do actually work holidays huh? Anyways, it's in the morning and my mom has to work half a day anyways so it won't mess up our plans.

Well, it's time to close. Have a wonderful Thankgiving everyone!

SharonPlease visit our website at:http://ACES_Autoimmune.tripod.com