Question

[Guest guest]

I don’t

know of any funders being required to report on who they didn’t fund,

autism related or otherwise. AS money is not public, public money would be

government, and they are not even obligated to say who they didn’t fund

in an RFP process. Sometimes you can find that out through a FOIA request, but

it depends.

You really couldn’t evaluate the

fairness of the funding process by looking at the list of who someone did or

didn’t fund. If we don’t prepare good proposals we don’t get

funded. I’ve seen many good proposals concept-wise get low scores from funders

for not following directions, formatting, etc.

Becky

Question

Here's a stupid question......

Re: AS -- They make the recipients of grants available to the public

-- they publicize who got what.

Will they, or are they required to, or would they release who DIDN'T

get funded? I'd be really interested in seeing what proposals were

turned down.

[Guest guest]

990

forms can usually be found online. They will only show grant recipients, not

those denied.

becky

Question

>

> Here's a stupid question......

>

> Re: AS -- They make the recipients of grants available to the public

> -- they publicize who got what.

>

> Will they, or are they required to, or would they release who DIDN'T

> get funded? I'd be really interested in seeing what proposals were

> turned down.

>

>

>

[Guest guest]

FOIA

would not apply to AS.

If there were several biomed related

proposals that were denied, we should make sure they were solid proposal before

making a big thing about it.

becky

Question

>

> Here's a stupid question......

>

> Re: AS -- They make the recipients of grants available to the public

> -- they publicize who got what.

>

> Will they, or are they required to, or would they release who DIDN'T

> get funded? I'd be really interested in seeing what proposals were

> turned down.

>

>

>

[Guest guest]

Yes, we covered this already. Remember, I said, my bad, FOIA is for

government agencies only.

I was just playing devil's advocate.

> > I doubt it. Its certainly not required.

> >

> > Question

> >

> > Here's a stupid question......

> >

> > Re: AS -- They make the recipients of grants available to the public

> > -- they publicize who got what.

> >

> > Will they, or are they required to, or would they release who DIDN'T

> > get funded? I'd be really interested in seeing what proposals were

> > turned down.

> >

> >

> >

>

[Guest guest]

Yeah,

sorry, I replied as I read and didn’t read through the whole thread.

If anyone from within our community

applied for one of these grants and got denied, I would be willing to take a

look and see how the application could be improved.

In general, only about 11% of grant

applications get funded, so even good proposals get turned down. That said, if

AS (or anyone else) really wanted to pursue this avenue they could put out a

specific RFP to study vaccines and autism.

Becky

Question

> >

> > Here's a stupid question......

> >

> > Re: AS -- They make the recipients of grants available to the public

> > -- they publicize who got what.

> >

> > Will they, or are they required to, or would they release who DIDN'T

> > get funded? I'd be really interested in seeing what proposals were

> > turned down.

> >

> >

> >

>

[Guest guest]

FOIAs can also include anyone participating in a government hearing,

testifying before a committee, etc.. I think conflicts of interest

are recorded as part of the process. Not sure. I know that you can

dig up COIs on scientists who participate in government hearings,

projects, research, etc..

> > > I doubt it. Its certainly not required.

> > >

> > > Question

> > >

> > > Here's a stupid question......

> > >

> > > Re: AS -- They make the recipients of grants available to the

public

> > > -- they publicize who got what.

> > >

> > > Will they, or are they required to, or would they release who

DIDN'T

> > > get funded? I'd be really interested in seeing what proposals

were

> > > turned down.

> > >

> > >

> > >

> >

>

[Guest guest]

You can find the tax information, etc. on any non-profit at http://www.guidestar.org/

Jim.

Jim Donnelly

Fuzz Foundation for Autism

http://www.fuzzfoundation.org/

email: jim@...

[Guest guest]

,

At 08:25 PM 2/27/2008, you wrote:

>How many of your roux en y or intestinal bypass patients are experiencing

>osteopenia due to calcium and vit D malabsorption?

>

>What are the risks of oxalates or stones forming with 1500mg calcium per

>day and 50,0000 units of Vit D monthly?

>

>How many of these patients end up on enteral or parenteral feedings due to

>malabsorption of their nutrients?

The timing of the calcium makes a big difference in how effective it is in

binding oxalate, as shown in the first study below. To get the maximum

binding of oxalate, you want to take the calcium right before eating.

What my internet list (Trying_Low_Oxalates ) is focused on

is discovering the damage that oxalates may do to the rest of the body when

the kidneys and kidney stones are not a particular risk for that person,

but where other organ systems might be vulnerable to that absorbed

oxalate. Some people may not be good urinary excreters (and yes, oxalate

is ACTIVELY secreted, not just filtered). Their poor secretion may reduce

risks to the kidneys, but may raise risks to the rest of the body. Kidney

doctors won't tell you that!

A colleague of mine has some unpublished work trying to correlate blood

oxalate and urinary oxalate levels. He said they do not correlate all that

well...not nearly as much as he expected. That's why my group follows this

rule: If urinary oxalate is high, you know you have a problem; if it is

not high, you cannot be sure that you don't have a problem in RETAINING

oxalates in the body that got to the blood because of excess permeability

to oxalate in the colon.

I've put below an old post showing the literature on dietary calcium

binding dietary oxalate. I hope this helps answer your question.

>Date: Wed, 23 Nov 2005 12:52:40 -0600

>Trying_Low_Oxalates

>From: Owens <lwo@...>

>Subject: Timing and quantity of calcium for effect on oxalates

>

>Listmates,

>

>These two articles should give us a little guidance about issues of timing

>and dosage of calcium supplements or of eating high calcium foods where

>the calcium is not already bound by oxalate. The timing seemed to work

>best when the calcium was taken immediately before the meal.

>

>In the second article, looking at adults, given the amount of oxalate in

>the study, increasing the calcium was clearly the best strategy up to

>1200mg, after which the benefit of adding more was not as high. This

>number very likely relates to the amount of oxalate they were giving, so

>that their " cutoff " might have been at a different point if they had used

>more or less oxalate in the study.

>

>Not having this study in hand, I don't really know what they did with that

>oxalate solution (did they just drink it?), but if I did my math right,

>this is about 33 mg. of oxalate (88 molecular weight of oxalate X .00037

>moles) = .03256 grams) This is not a whalloping dose of oxalates. One

>peanut weighs about a gram. There are 226 mg of oxalate in a hundred

>grams of peanuts, so each peanut has about 2.3 mg of oxalate. The dose of

>oxalate in this study looks to be equivalent to 14 peanuts, if I

>calculated that right. So to balance those 14 peanuts, to really limit

>absorption appropriately, it took 1200 mg of calcium. Wow. Limiting

>oxalates that you eat seems a much better strategy than trying to balance

>your oxalates to calcium ingested at the same time! I'm glad to finally

>get some numbers to work with to help us think about this. If anyone sees

>an oops in my calculations, let me know. All that said, it certainly

>looks difficult to take in enough calcium to balance very high oxalate foods.

>

>I looked on a USDA site that I am referencing in another post, but one 8

>oz serving of yogurt (cow's milk I'm sure) furnishes 452 mg. of calcium.

>

>...

>Just think about this though, to the degree of free oxalate that you are

>eating, you are probably binding calcium in the gut from your food that is

>not being absorbed. Even with people without oxalate absorption issues,

>eating a lot of foods high in soluble oxalate is a big way to limit your

>absorption of calcium!

>

>

>

>

> J Urol. 2005 Nov;174(5):2027-31. Related Articles, Links

> Click here to read

> Urinary response to an oxalic acid load is influenced by the timing

> of calcium loading in rats.

>

> Hossain RZ, Ogawa Y, Morozumi M, Hokama S, Uchida A, Sugaya K.

>

> Division of Urology, Department of Organ-Oriented Medicine, Faculty

> of Medicine, University of the Ryukyus, Okinawa, Japan.

> g044002@...

>

> PURPOSE: Dietary intake of calcium or dairy products has been shown

> to decrease urinary oxalate excretion by limiting its intestinal

> absorption. However, not enough attention has been given to whether there

> is any benefit from altering the schedule of ingesting calcium and

> oxalate. Therefore, we investigated the effects of changes in the timing

> of calcium and oxalate loading on urinary oxalate excretion. MATERIALS

> AND METHODS: Male Wistar rats weighing 180 to 200 gm were fasted and

> randomized into several groups. They were then administered normal saline

> or oxalic acid with or without calcium or milk. Calcium or milk was given

> immediately, or 5, 10, 15 or 30 minutes before or after the oxalate load.

> All treatments were given via gastrostomy. Urine samples were collected

> by bladder puncture just before administration and at hourly intervals up

> to 5 hours afterward. Urinary oxalate was measured by capillary

> electrophoresis. RESULTS: Urinary oxalate increased after the

> administration of oxalate alone, while it decreased when oxalate was

> combined with calcium or milk. Urinary oxalate showed a smaller increment

> when calcium or milk was given before than after oxalate loading, and it

> was much smaller when calcium or milk was given immediately before

> oxalate. CONCLUSIONS: Prior calcium loading appears to have a positive

> influence on decreasing oxalic acid absorption from the intestinal tract.

> Therefore, calcium or dairy products should always be ingested before a

> meal rich in oxalate to prevent oxalate absorption and decrease urinary

> oxalate excretion.

>

> PMID: 16217387 [PubMed - indexed for MEDLINE]

>

> J Am Soc Nephrol. 2004 Jun;15(6):1567-73. Related Articles, Links

> Click here to read

> Dependence of oxalate absorption on the daily calcium intake.

>

> von Unruh GE, Voss S, Sauerbruch T, Hesse A.

>

> Department of Internal Medicine I, University of Bonn,

> Sigmund-Freud-Strasse 25, D-53105 Bonn, Germany.

Gerd.von_Unruh@...

>

> Two to 20% of ingested oxalate is absorbed in the gastrointestinal

> tract of healthy humans with a daily 800 mg calcium intake. Calcium is

> the most potent modifier of the oxalate absorption. Although this has

> been found repeatedly, the exact correlation between calcium intake and

> oxalate absorption has not been assessed to date. Investigated was

> oxalate absorption in healthy volunteers applying 0.37 mmol of the

> soluble salt sodium [(13)C(2)]oxalate in the calcium intake range from 5

> mmol (200 mg) calcium to 45 mmol (1800 mg) calcium. Within the range of

> 200 to 1200 mg calcium per day, oxalate absorption depended linearly on

> the calcium intake. With 200 mg calcium per day, the mean absorption (+/-

> SD) was 17% +/- 8.3%; with 1200 mg calcium per day, the mean absorption

> was 2.6% +/- 1.5%. Within this range, reduction of the calcium supply by

> 70 mg increased the oxalate absorption by 1% and vice versa. Calcium

> addition beyond 1200 mg/d reduced the oxalate absorption only one-tenth

> as effectively. With 1800 mg calcium per day, the mean absorption was

> 1.7% +/- 0.9%. The findings may explain why a low-calcium diet increases

> the risk of calcium oxalate stone formation.

>

> PMID: 15153567 [PubMed - indexed for MEDLINE]

> Periou <lauraperiou@...> wrote:

>What calculation is best to find EER once patients are in Maintenance

>phase several years post-op? Best to use ABW, goal weight or IBW?

>

>LP

>

>

>----------

>Climb to the top of the charts! Play the word scramble challenge with star

>power.

><http://club.live.com/star_shuffle.aspx?icid=starshuffle_wlmailtextlink_jan>Pla\

y

>now!

>

>

>

>Never miss a thing.

><http://us.rd./evt=51438/*http://www./r/hs>Make

>your homepage.

>

No virus found in this outgoing message.

Checked by AVG Free Edition.

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[Guest guest]

,

I've experienced this, I can't explaine what it is, but I seem to be way

more clumsy than I was a feww years ago. My grip is week and I just don't

hold on as tight. I even can't hold on to things like heavy untensils. I'm

not really sure if it's muscles or if it's something else.

But you are not alone...

[Guest guest]

,

I've experienced this, I can't explaine what it is, but I seem to be way

more clumsy than I was a feww years ago. My grip is week and I just don't

hold on as tight. I even can't hold on to things like heavy untensils. I'm

not really sure if it's muscles or if it's something else.

But you are not alone...

[Guest guest]

,

I've experienced this, I can't explaine what it is, but I seem to be way

more clumsy than I was a feww years ago. My grip is week and I just don't

hold on as tight. I even can't hold on to things like heavy untensils. I'm

not really sure if it's muscles or if it's something else.

But you are not alone...

[Guest guest]

Not classically described but some on our site discuss this.

Sounds like time for a good study.

On Mar 31, 2008, at 1:59 PM, Ellen wrote:

> I read on the natural thyroid group that high aldosterone can cause

> high

> anxiety. What does anyone know about this? Seems to be true in my

> case.

>

> Thanks,

> Ellen

>

>

May your pressure be low!

CE Grim BS, MS, MD

High Blood Pressure Consulting

Specializing in Difficult to Manage High Blood Pressure

Consult the following at for details

bloodpressureline

hyperaldosteronism

[Guest guest]

Which site is it, ?

Beth

_www.soapandgarden.com_ (http://www.soapandgarden.com/)

Be good to your skin!

www.saponifier.com

In a message dated 5/1/2008 11:38:02 P.M. Eastern Daylight Time,

jmurray2@... writes:

Just curious....I came across this website with tons of f/o's. Has

anybody purchased any f/o's from them and, if so,

were you happy with it?

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

OMG....I guess that would help, wouldn't it??? A little brain-fart last

night.

http://www.alabastercandlesupply.com

Re: question

Which site is it, ?

Beth

_www.soapandgarden.com_ (http://www.soapandg

<http://www.soapandgarden.com/> arden.com/)

Be good to your skin!

www.saponifier.com

In a message dated 5/1/2008 11:38:02 P.M. Eastern Daylight Time,

jmurray2twcny (DOT) <mailto:jmurray2%40twcny.rr.com> rr.com writes:

Just curious....I came across this website with tons of f/o's. Has

anybody purchased any f/o's from them and, if so,

were you happy with it?

**************Wondering what's for Dinner Tonight? Get new twists on

family

favorites at AOL Food.

(http://food.

<http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001>

aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Hmm, I've heard of them before, but never even visited the site. They

certainly carry a lot of products.

Beth

_www.soapandgarden.com_ (http://www.soapandgarden.com/)

Be good to your skin!

www.saponifier.com

In a message dated 5/2/2008 11:11:42 A.M. Eastern Daylight Time,

jmurray2@... writes:

http://www.alabastercandlesupply.com

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Thanks for that info. It's always nice to have experiences and opinions

ahead of time.

Beth

_www.soapandgarden.com_ (http://www.soapandgarden.com/)

Be good to your skin!

www.saponifier.com

In a message dated 5/3/2008 9:55:16 A.M. Eastern Daylight Time,

corningwaxworks@... writes:

They have extremely nice and funny salesmen, but their products just

werent for me.

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Sorry, I just came accross this ...if someone has already answered,

sorry, but here is my opinion. DONT DO IT! I have been to 3

Candle/Soap Conferences where Alabaster has had a huge display....I

was not impressed. I have tried several of their oils and the OOB

smell is great! however, the scent throw in candles ....well lets

just say it was substandard at best. I use J50 wax...pretty much

anything throws in J50. I also tried a few that were soap, B & B

safe...very poor scent throw there too. I did find a few that were ok

in lotions...but if I couldnt make that scent in anything else it

wasnt worth my time to carry it.

They have extremely nice and funny salesmen, but their products just

werent for me.

Good Luck!

>

> OMG....I guess that would help, wouldn't it??? A little brain-fart

last

> night.

>

>

> http://www.alabastercandlesupply.com

>

>

>

>

>

>

>

>

> Re: question

>

>

>

> Which site is it, ?

>

> Beth

> _www.soapandgarden.com_ (http://www.soapandg

> <http://www.soapandgarden.com/> arden.com/)

> Be good to your skin!

> www.saponifier.com

>

> In a message dated 5/1/2008 11:38:02 P.M. Eastern Daylight Time,

> jmurray2twcny (DOT) <mailto:jmurray2%40twcny.rr.com> rr.com writes:

>

> Just curious....I came across this website with tons of f/o's. Has

> anybody purchased any f/o's from them and, if so,

> were you happy with it?

>

> **************Wondering what's for Dinner Tonight? Get new twists on

> family

> favorites at AOL Food.

> (http://food.

> <http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001>

> aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

>

[Guest guest]

Thank you so much!! I emailed them two days ago asking if one of their

scents was a " copy " of a

Secret one that I'm looking for. So far they haven't even

replied. My daughter wants a copy

of V/S's " Pink Fresh & Clean. " I think it's fairly new so maybe nobody

has come up with a duplicate yet.

I'll make a note NOT to by from Alabaster. Thanks for your opinion!!!

Re: question

>

>

>

> Which site is it, ?

>

> Beth

> _www.soapandgarden.com_ (http://www.soapandg

> <http://www.soapandg <http://www.soapandgarden.com/> arden.com/>

arden.com/)

> Be good to your skin!

> www.saponifier.com

>

> In a message dated 5/1/2008 11:38:02 P.M. Eastern Daylight Time,

> jmurray2twcny (DOT) <mailto:jmurray2%40twcny.rr.com> rr.com writes:

>

> Just curious....I came across this website with tons of f/o's. Has

> anybody purchased any f/o's from them and, if so,

> were you happy with it?

>

> **************Wondering what's for Dinner Tonight? Get new twists on

> family

> favorites at AOL Food.

> (http://food.

> <http://food.

<http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001>

aol.com/dinner-tonight?NCID=aolfod00030000000001>

> aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

>

[Guest guest]

I will tell you what my OT told me, regarding school therapy, as she used to

work for the school districts. The school OT will only provide " what they deem

necessary for educational purposes and NOT any more! " If you can find a home

health service that will come out to the house, that would be optimal. I am in

San , and we have OT, PT and Speech that comes to the house. If the

school therapist " recommends " things for the student, they most likely will

refuse, but if the therapist says it is " necessary " then they give.

Good Luck..

Ria

question

ok, during the end of the school year my son had an ARD meeting and i

was told the ot therapist was no longer going to give therapy to my

son. she didn't show up to the meeting, but left a paper explaining

that she thought he no longer needed it. Ok, my son is 5 yrs. old and

has walked on his tippie toes since he learned to walk. some people

tell me that ot therapy should of not been taken away if he does this.

is this true?

[Guest guest]

It is my understanding that in the school system they must find an " educational "

need to continue his therapy. If his tiptoe gait is not interferring with his

ability to obtain an education they do not implement it. I do not agree with

this....just what I have been told in numerous ARD meetings. The OT in the

districts look for educational need, while provate OT's look at medical and

other needs. I am sure others will comment on my accuracy or lack thereof.

Please keep us posted.

Lesli-UTU

Sent via BlackBerry from T-Mobile

question

ok, during the end of the school year my son had an ARD meeting and i

was told the ot therapist was no longer going to give therapy to my

son. she didn't show up to the meeting, but left a paper explaining

that she thought he no longer needed it. Ok, my son is 5 yrs. old and

has walked on his tippie toes since he learned to walk. some people

tell me that ot therapy should of not been taken away if he does this.

is this true?

[Guest guest]

That's my understanding too, it's what I've always been told.....as pathetic as

it sounds.

a

question

ok, during the end of the school year my son had an ARD meeting and i

was told the ot therapist was no longer going to give therapy to my

son. she didn't show up to the meeting, but left a paper explaining

that she thought he no longer needed it. Ok, my son is 5 yrs. old and

has walked on his tippie toes since he learned to walk. some people

tell me that ot therapy should of not been taken away if he does this.

is this true?

[Guest guest]

Hi Sandi,

I'll chime in here. Many of you know my story ... cross country move ...

idiot new immuno ... took my 13 y.o. off sub q ... refused to believe he had

CVID ... son refused further treatment anyway now that he'd enjoyed the

freedom of no stomach pokes for a few months ...

Anyway, that was almost a year ago. My now 14. y.o. has not been sick since.

Not once.Not even a cold. It's the most annoying thing I've ever seen. Yes,

he's been tired, but he's also a teenager. I threatened to take him to an

AIDS clinic and expose him to weird diseases just to prove this idiot immuno

wrong. My son has been the healthiest he's ever been. It's incredibly

aggravating. (He is homeschooled, so he doesn't get the brunt of the public

school germs.)

Most people thought I was crazy, " wishing " my son would get pneumonia again,

just to prove the doctor wrong. But you guys understand (I hope).

Sandi, I feel your pain. It's so frustrating being at the mercy of these

people. I wish you all the best.

Sue in NY

Mom to , 14, CVID

On Mon, Sep 15, 2008 at 11:51 PM, <sassykay59@...> wrote:

> Hi Everyone--

> Our Immuno (in all of his infinite wisdom) has decided to trial off

> of his SubQ just as school starts. He literally had his last dose last

> Sunday. I am beyond angry...the timing just plain sucks. We could have done

> this during the summer, but I feel as if he is setting Bri up for failure at

> the beginning of the year.

> Anyway, my question is...what should we expect??? He is even more tired

> than usual but has only missed one treatment so far.

> The Immuno says that he will put Bri on if he gets ANY ear, nose or strep

> infection...of course, Pneumonia, too, but I hope it doesn't come to that. I

> am praying that when the infection occurs, he will not require

> hospitlization and not miss too much school. Oh, BTW, his T-cells have been

> low two years in a row now...don't think they're going back up and this adds

> to my worries. I was told Bri would not be taken off if his T or B cells

> were down, but he did it anyway.

> Thanks for any advice and for listening!

> Sandi--Mom to , age 15--CVID

>

>

[Guest guest]

Sandy it is not normal protocol to do this during the winter. He has to be off

for 100 days to retest which puts into the flu season. I would put it in writing

and tell him you will be happy to test off next summer but that from your

discussions with IDF this is an inappropriate time to do so.

Ask him what his goal is in trialing off? To retest? then remind him when 100

days will be. Then basically say what I said above. You can call IDF and talk

to them but you know that is what they will say. There must be some other

motivation going on here ( Insurance pressure???) Be kind but firm.

BARBIE

Re: Question

Hi Sandi,

I'll chime in here. Many of you know my story ... cross country move ...

idiot new immuno ... took my 13 y.o. off sub q ... refused to believe he had

CVID ... son refused further treatment anyway now that he'd enjoyed the

freedom of no stomach pokes for a few months ...

Anyway, that was almost a year ago. My now 14. y.o. has not been sick since.

Not once.Not even a cold. It's the most annoying thing I've ever seen. Yes,

he's been tired, but he's also a teenager. I threatened to take him to an

AIDS clinic and expose him to weird diseases just to prove this idiot immuno

wrong. My son has been the healthiest he's ever been. It's incredibly

aggravating. (He is homeschooled, so he doesn't get the brunt of the public

school germs.)

Most people thought I was crazy, " wishing " my son would get pneumonia again,

just to prove the doctor wrong. But you guys understand (I hope).

Sandi, I feel your pain. It's so frustrating being at the mercy of these

people. I wish you all the best.

Sue in NY

Mom to , 14, CVID

On Mon, Sep 15, 2008 at 11:51 PM, <sassykay59comcast (DOT) net> wrote:

> Hi Everyone--

> Our Immuno (in all of his infinite wisdom) has decided to trial off

> of his SubQ just as school starts. He literally had his last dose last

> Sunday. I am beyond angry...the timing just plain sucks. We could have done

> this during the summer, but I feel as if he is setting Bri up for failure at

> the beginning of the year.

> Anyway, my question is...what should we expect??? He is even more tired

> than usual but has only missed one treatment so far.

> The Immuno says that he will put Bri on if he gets ANY ear, nose or strep

> infection... of course, Pneumonia, too, but I hope it doesn't come to that. I

> am praying that when the infection occurs, he will not require

> hospitlization and not miss too much school. Oh, BTW, his T-cells have been

> low two years in a row now...don't think they're going back up and this adds

> to my worries. I was told Bri would not be taken off if his T or B cells

> were down, but he did it anyway.

> Thanks for any advice and for listening!

> Sandi--Mom to , age 15--CVID

>

>

[Guest guest]

I reread your post. So why trial off if he gets ANY infection that is not the

purpose of trialing off . The purpose is to retest the system to see where you

are. The infections are just a symptom not the empirical data that is suppose to

be gathered to verify his immune status. He WILL get an infection!!! My son was

sick the entire time even in the summer time. He was on antibiotics all summer

long and then we retested in August after getting the pneumovaccine and he had

antibody responses lower than before he got the vaccine. This time of year is a

given for all kids. What is he thinking? Sit down and write that letter and then

you have something to stand on when he gets sick.

BARBIE

Question

Hi Everyone--

Our Immuno (in all of his infinite wisdom) has decided to trial off of his

SubQ just as school starts. He literally had his last dose last Sunday. I am

beyond angry...the timing just plain sucks. We could have done this during the

summer, but I feel as if he is setting Bri up for failure at the beginning of

the year.

Anyway, my question is...what should we expect??? He is even more tired than

usual but has only missed one treatment so far.

The Immuno says that he will put Bri on if he gets ANY ear, nose or strep

infection... of course, Pneumonia, too, but I hope it doesn't come to that. I

am praying that when the infection occurs, he will not require hospitlization

and not miss too much school. Oh, BTW, his T-cells have been low two years in a

row now...don't think they're going back up and this adds to my worries. I was

told Bri would not be taken off if his T or B cells were down, but he did it

anyway.

Thanks for any advice and for listening!

Sandi--Mom to , age 15--CVID

[Guest guest]

Yes! You're the one who said about doing the second ferm. with stevia. I've

always been forcefully told on this list that that can't be done. :-) I've never

tried it, but now I will. That's always the best way. Gotta watch how gullible

one is these days. :-)

, from my experience of 5-8 day brews with a cup and a half of sugar at 70

to 72 degrees, my kt is not super sweet at all. In fact, if I let it go for

10-12 days it is very strong and sour and seems to have all the sugar used up.

Rodrick

question

Here's a question or 2 I have about KT:

GT brews his for 30 days...so it says on the bottle.

I've been seeing a lot of 5-8 day brews.

I brew mine for 14 days related to the fact there are diabetics in my home and

my second fermentation is with stevia only.

SO, is the 5-8 day brew super sweet? Do you think GT is meaning he brews 2-3

times over 30 days? Which way produces the most benefits?