update

October 5, 2000

Ralph,

I didn't see my e-mails for a few days so I didn't

know about the broadcast until after the fact. Would

love it if you could get it onto MP3 files. is

getting to be a real celebrity! Tell her we

appreciate everything she does to get the word out

there for all the kids with this disease, adults too.

We appreciate you too!

Cari and - JDMS

--- Ralph Becker wrote:

> Greetings, all.

>

> continues to do very well, thanks for asking.

> Wednesdays

> continue to be her tough day of the week. She has

> gym during the day

> at school, and 2 hours of dance after school. Plus

> homework, and this

> has been a tough week for her for homework for some

> reason. Plus she

> was up late Tuesday night doing the webcast

> interview.

>

> More on the webcast: They screwed up the start time,

> telling me it was

> 8:00PM Eastern time, when it was in fact 9:00. At

> about 8:10, when we

> realized this, I sent to bed, telling her I'd

> wake her up when

> they called. Then they had technical difficulties,

> and the show didn't

> actually start until 9:15PM. They called and as

> soon as I said

> " Hello, " we were on the air!

>

> The hosts had actually seen the Diary web site and

> after cordial

> introductions, they asked easy questions about what

> JDMS is, how it's

> treated, and what the prognosis is. was asked

> a couple of

> general questions, and we then spent the most time

> taking about coping,

> since the topic of the show was " Living With a

> Handicap " . We talked

> about finding ways to cope that fit in with your

> personality style, and

> seeking support and help wherever possible. At the

> end, I plugged the

> MAA, the MAA's BB, and the Conference next week. I

> also mentioned

> mailing lists without naming this one.

>

> I tape recorded the webcast, and my wife was

> listening the whole time.

> She said there were several cutouts during the

> broadcast. I haven't

> listened to the tape yet. If I have time, I'll see

> if I can transfer

> selections from the tape to MP3 files.

>

> Finally, goes in for blood work this weekend.

> She accidentally

> missed a day's meds last week - we both just forgot.

> Hopefully,

> nothing bad will happen and the results this month

> will continue to be

> good.

>

> Ralph

>

==========================================================

> Ralph Becker

> http://www.ralphb.net/

> Will Juggle for Food. RKBA!

>

__________________________________________________

November 28, 2000

Hi guys,

Sorry I have been so quiet. I have been reading, but I can barely sit at

the computer right now. My right side is very painful and I am having pain

down my right arm. I have just been so tired and having headaches. I have

no motivation to do anything. I have to make myself do my chores. I am

trying to do only what has to be done and rest as much as possible. I am

down to 30mg of prednisone. I am not sure if it is the stress of the

holidays or the decrease in prednisone that is making me so tired. I guess

it could also be getting over the respiratory infection as well. I am

determined to keep decreasing the prednisone as long as I can stand it so

that we can get to a point that we can determine what to do next. Not to

mention I just cannot tolerate the side effects any longer.

We went to my mother's for Thanksgiving day and had a good time. I found

that more stressful than going to my mother-in-laws because she is so upset

over how I look from the prednisone and about my condition and that is all

she wanted to talk about. I just wanted to forget about it for the day and

enjoy myself. I didn't want to hurt her feelings, but I would answer her

questions and change the subject. You just cannot eat, sleep and live the

disease all the time. You have to get past it and live life. Yes the

disease affects my life every day, but I don't think I have to focus on it

every second because if I do I will drive myself crazy.

We went to my mother-in-law's on Saturday evening for dinner and had a very

nice time. She was very affectionate with me and didn't have any

underhanded comments about me or . She was very sweet to both boys

and was not critical of 's grades. She even said she thought he just

needed more help learning to pay attention and sit still. Maybe she is

learning or maybe she knew my husband meant what he said about us not coming

anymore if she didn't stop being so critical. I don't care what the reason

is, I am just happy for my family that things are better.

I have missed talking to you guys and hope that all of you had an enjoyable

holiday.

Gentle hugs,

Fern

February 12, 2003

I have just got my lab results. My kidneys have remained stable for

the last year. I got a serum creatinine of 1.4 and creatinine

clearance of 59 %. However my proteinuria increases from neil to 0.4

g/24H, but still not too bad.

Take care all,

Rita

February 12, 2003

Not bad at all Rita from my limited knowledge of numbers! Sorry about

the proteninuria increase though, hopefully this might change over the

coming time.

You take care too.

update

I have just got my lab results. My kidneys have remained stable for

the last year. I got a serum creatinine of 1.4 and creatinine

clearance of 59 %. However my proteinuria increases from neil to 0.4

g/24H, but still not too bad.

Take care all,

Rita

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

February 12, 2003

How would say that`s much better than not too bad, Rita. Glad to hear it.

Pierre

update

>

> I have just got my lab results. My kidneys have remained stable for

> the last year. I got a serum creatinine of 1.4 and creatinine

> clearance of 59 %. However my proteinuria increases from neil to 0.4

> g/24H, but still not too bad.

>

> Take care all,

> Rita

>

February 13, 2003

Great Rita,

Stability like that for one year is wonderful! Keep up what ever it is that

you're doing, it seems to be working. Connie, USA

update

I have just got my lab results. My kidneys have remained stable for

the last year. I got a serum creatinine of 1.4 and creatinine

clearance of 59 %. However my proteinuria increases from neil to 0.4

g/24H, but still not too bad.

Take care all,

Rita

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

January 28, 2004

-----

Hi everyone,

----- I have been giving my kids a little fruit sticking with low glycemic

fruits like green apples, and pears , but a very small amount, until this

weekend we took the kids to the Mountains for 's birthday , and Friday I

let them have a banana in the car , and then Saturday morning they had a

banana for breakfast , and then a banana for snack , because it was easy to

serve, we took the kids skiing and enrolled them in a ski school with a private

lesson, and the kids did great skiing .

I did see very dark puffy circles underneath 's eyes , and her skin got

very pale , and she was very quiet and a little introverted. And my other two

Amberly and Dillon , I saw a lot of agitation and aggressiveness especially in

my little one that is 3 . Dillon was very whiney and one minute happy and the

next mad and agitated. Amberly my little one was the worst a lot to terrible

behaviors and very very agitated and even mean , she would go up to and

take things out of her hands and even push her out of her chair, and these

behaviors did not exist before the weekend fruit frenzy , go figure. Also

Amberly broke out in a terrible yeast rash all over , and broke out in

the red prickly rash around the mouth . So needless to say yesterday we kissed

the fruit good bye. Today all the rashes are gone , and their behaviors are

beautiful.

On the flip side I had my kids tested for yeast all 3 of them and the results

came back today and their yeast levels were within normal limits. So I guess

puliing the fruit and honey for 6 months paid off. With the exception of trying

cooked fruits and bananas in the early part of the diet , and then months later

we tried a very ripe banana but it was just one and all 3 of my kids did ok .

That is where the whole moderation of all foods comes in to play , or for us

that is. . As of yesterday and today my kids are like night and day . It is like

totally different kids. Today they are so sweet and loving . I swear it is not

worth it to do fruit with those kind of behaviors for us , I would rather live a

fruit free life.

So needless to say we are back to meat and veggies , some eggs and some nuts in

moderation . But at this point of my life and with all the beautiful gains that

I have seen in my children are so worth it , And I will tell you that in the

past my kids would have totally freaked out , and this time the bahaviors were

bad , but not as bad as before the diet. So that just goes to show that the diet

is healing my beautiful children , and thanks to Elaine,Mimi , and all the

moderators on the list for bringing this to the autism community .

For us we had to take it very slow with introducing new foods , but the

payoff is oh so worth it , My kids are so happy , and my asd daughter is

becomeing so typical , it amazes me everyday of the progress that she is

makeing . She had become so connected , it is amazing the conversatipns that we

have , and also she has become very sneaky with her sibblings . Wow what a huge

differnce from the old that was un connected with her surroundings . My

precious little girl has come home to stay.

All of our kids are so uniquely different , and it is definately not a one size

fits all with our kids, and every parent out there knows their child the best.

I'm not saying for everyone to do what I did for my kids , and I am just

stateing what has workied for us.

Good luck to everyone, there is so much light at the end of the tunnel , but

you have to be patient.

Angie McCauley

scd almost 7 months , and fruit and honey free for 6 out of the 7

January 28, 2004

Elaine pointed out to the Craps (not a joke) that the Glycemic Index cannot

be applied to SCD because they never investigated or reported on the type

of sugar in the indexed foods. This index is not used as a frame of reference

on SCD and should not be suggested a guide to carbohydrate choices for those

who follow SCD. It was posted here last week that.

Glad to hear is doing so well. You must be thrilled!

On Wednesday, January 28, 2004, at 07:54 AM, Angie McCauley wrote:

> I have been giving my kids a little fruit sticking with low glycemic fruits

> like green apples,

>

Carol F.

---------

c.frilegh@...

Toronto , Celiac SCD 2 years

There is no substitute for the right food!

January 28, 2004

Actually Angie, I don't know if this ever made it to the list. It's been in

my " saved " file and I was waiting to see if it was a duplicate already seen

but I don't think so. Here it is:

Date: Thu Jan 22, 2004 09:50:39 AM US/Eastern

In case anyone is interested. Carol F asked me to write to her about the

glycemic index upon which the South Beach Diet is based.

It is another diagnostic hoax which started a whole bandwagon approach in

universities.

My story- I was at Univ. of Western Ontario doing research when this new

idea presented itself by a published paper by Dr. and Mrs. Crapo (I kid you

not). It was the first published paper on this I saw.

They tested certain carbohydrates by having the subject ingest the carb and

then seeing how fast the blood sugar levels rose in the bloodstream.

Those carbs that did NOT cause an erratic spurt of blood sugar were deemed

to be the GOOD carbs and things like the heavy starches played out very

nicely - they were the good guys.

I wrote to Dr. and Mrs. Crapo and asked if they had determined to what

extent the good guy starches had BEEN DIGESTED. Did they do any work on the

fact that some were not even being digested and were not entering the

bloodstream. They answered me (and I believe I still have their reply) that

NO they did not test this factor.

That's research for you.

In other words, it is very probable that these good guy starches (according

to the glycemic index) were not even broken down by the digestive system and

were ending up in the lower gut to create fermentation. But nobody looked

at that.

On Wednesday, January 28, 2004, at 07:54 AM, Angie McCauley wrote:

> - I have been giving my kids a little fruit sticking with low glycemic

> fruits like green apples, and pears , but a very small amount

Carol F.

---------

c.frilegh@...

Toronto , Celiac SCD 2 years

There is no substitute for the right food!

January 29, 2004

Hi Angie,

In case you're not aware of it, you might be interested to know that bananas

don't represent *all* fruit, just bananas which, I've heard, are highly

phenolic and some ASD kids don't handle phenols well. In those kids, until

their guts are well healed, phenols can cause all sorts of behavioural and

physical problems. So, just to give you more to think about, it might not be

the yeast or glycemic index at work here (did you see Elaine's post about

the glycemic index?). In any event, it's wonderful to hear how well your

kids are doing! :-)

Marisol

I have been giving my kids a little fruit sticking with low glycemic fruits

like green apples, and pears , but a very small amount, until this weekend

we took the kids to the Mountains for 's birthday , and Friday I let

them have a banana in the car , and then Saturday morning they had a

banana for breakfast , and then a banana for snack ,

January 29, 2004

Bananas are funny, they affect some kids " phenol-ly " (<--a original)

and others, not. I've learned that Luke reacts poorly to a specific kind of

phenols called salicylates, and bananas are very low in these. He can eat

bananas just fine. Trial and error!

in NC

Mom of Luke, age 5, Asperger's/highly sensitive to

phenols & salicylates/diarrhea & gas problems;

, age 3, healthy; and , 19 mos, healthy

All SCD 1 1/2 weeks

Re: update

Hi Angie,

In case you're not aware of it, you might be interested to know that bananas

don't represent *all* fruit, just bananas which, I've heard, are highly

phenolic and some ASD kids don't handle phenols well. In those kids, until

their guts are well healed, phenols can cause all sorts of behavioural and

physical problems. So, just to give you more to think about, it might not be

the yeast or glycemic index at work here (did you see Elaine's post about

the glycemic index?). In any event, it's wonderful to hear how well your

kids are doing! :-)

Marisol

I have been giving my kids a little fruit sticking with low glycemic fruits

like green apples, and pears , but a very small amount, until this weekend

we took the kids to the Mountains for 's birthday , and Friday I let

them have a banana in the car , and then Saturday morning they had a

banana for breakfast , and then a banana for snack ,

For information on the Specific Carbohydrate Diet, please read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

January 29, 2004

Hi Angie,

It is great to hear that your children's gut are healing!

Might I suggest that you go slower when introducing or reintroducing new foods.

Three bananas in two days is a big jump. The usual protocol for new foods is

start with about a tsp - tbsp the first day, skip a day and on the third day

double the amount from the first day. On each day make note of any reactions

positive or negative, changes in bowel, behaviours etc. If all is good the

first day go ahead if not stop. Continue to gradually increase the amounts of

the new food until you are certain there is no negative reaction. Perhaps next

time reintroducing fruit if you go slow there won't be a change in beahiours

Also many parents have been reporting phenol reactions recently to certain foods

maybe this is part of what is going on with your kids.

Again it is good to hear that even with a huge jump in the amount of legal fruit

there behaviours weren't as bad as they have been in the past, healing does take

time and that their rebound time is much faster also.

Sheila, SCD 35 mos UC 20 yrs

mom of SCD 20 mos