Question

[Guest guest]

Rhonda my first thing I to learned from he mercury list was to get rid of

the fillings in my mouth first and then to work on the gut yeast before I

can be to get any chelation to begin for me.

I to be just learning this though in the last few months.

Sondra

[Guest guest]

Be careful if you go ahead to get all your fillings out, take it from me a

dental nurse, more mercury can go into your system with removal more than

any other time........and don;t forget your teeth too, it can cause more

probs with them as well. All i am saying is to be very certain, before you

go down this very long and expensive time.........as new fillings will only

last a short while, before you are back again for another one. I am just

saying it how it is. Cheryl S [australia]

-- Re: question

Rhonda my first thing I to learned from he mercury list was to get rid of

the fillings in my mouth first and then to work on the gut yeast before I

can be to get any chelation to begin for me.

I to be just learning this though in the last few months.

Sondra

[Guest guest]

> I've been meaning to write to you since I saw your post. You sound

like a

> younger version of me (though I don't have the nonverbal learning

> disability).

*grins* you can have mine.

> I'm the mother of two girls on the spectrum - (6) is severely

> autistic, nonverbal, but can type and read... and (8)who is HFA

and

> who also had hyperlexia. After finding out about the children it

became more

> and more apparent that I was AS so you have (38), AS,don't know

about

> my IQ (but its on the good side of reasonable). I could read before I

went

> to school (Shetland, Scotland, UK). I'm also very keen on Harry

Potter, was

> totally taken by Lord of the Rings when I first read it (though that

is a

> few years ago - it was the bit where the Ents joined in, I was totally

> overwhelmed) and I am so taken with learning about autism I am doing a

> postgraduate diploma in Autism - I'm nearly finished that and am

intending

> to go on to do a Masters (followed by a PhD if I can). But the bit

that

> struck me most was I'm a trampolinist too. I haven't done much

trampolining

> since i had because I just don't have the time but I used to

coach

> other people for 4-6hours/week. I am qualified to coach up to twisting

> doubles and am now more interested in coaching special needs children.

WOW! You can spot a twist?????? Right now I am so hung up on twisting

because I need to feel the skill, and I cant be spotted at my gym

because my coaches are DINKY.

If you want to talk about any and all of the shared interests (4-now

that is WAY COOL!!!!) email me off list, and we can stim on all that

lovely harry potter and LOTR and trampoline and autism!

Kassiane

*missasparagus@...*

_______________________________________________________________

Get the FREE email that has everyone talking at

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[Guest guest]

Rhonda, I could not agree with you more. I have viewed Allie's

therapists to focus on " catching up " Allie while I have focused on

her biological isues. We have done gfcf for 1 yr 1mo, Allie spoke 5

days after removing dairy from her diet. Within 2 months she had a

100+ vocab. We do Super Nu-Thera, enzymes, and Paxil. I am taking

Allie for blood work tomorrow and Friday we're planning on starting

our first round of chelation. I'm doing the 4 hr ALA only Andy

protocol from the autism treatment board, but I have some DMSA on the

way.

If anyone wants, I'll update from time to time on her progress. I'm

looking forward to the possibilities of chelation, but nervous about

the yeast issues that chelation can create!

Debi

> I'm Rhonda, mom to 26 month Olivia (PDD) and 7 yr old Madison (NT).

> We've begun probiotics to heal Livia's leaky gut and next we're on

to

> enzymes. I believe some cases of autism are more biological than

> neurological so that's the route we're pursuing right now. There's

so

> much info out there, it's hard to know where to start. Besides the

> probiotics we also are in an EIP 2 hours a week and will hopefully

be

> starting Jumpstart in February. Wondering if you've ever tried

DMSA or

> ALA or such to remove the mercury from your system?

[Guest guest]

,

I will be to go to Pittsburgh ( wexford)? for a conference in a few weeks. I

to be to go through Pennsylvania once and the hills, valleys and mountain

areas are much beautiful there.

Sondra

[Guest guest]

Michele, thanks to say my posting to be of help to you, I to be hoping I to

not be to overwhelm you in wrong ways, I can be to do this when trying to

connect, not with intent, but via computer will say much. I tend to be

lengthy in postings so will be to try hard to not be to wordy. Just get much

happy when my words connect to others. I to be to feel like others when this

happens in life.

Sondra

[Guest guest]

Much to tell me this to be the source of my mercury issues and such and for

me to get high levels of mercury out of me I to need to get the mercury

fillings out? I to be not sure of the choices I to need to make for to be to

get better health. I to know one such dentist referred tome in our areas who

to specialize in removing fillings and is cautious of the mercury. Yet at

same time am feared. I to be much feared of the dentists. I to not like the

pokes of the needles and the grinding of the tools they to use on my teeth

and such and the drill is so much painful to me to hear.

Sondra

[Guest guest]

Ket you to be a much special person in her life to be to care so much about

her and to bring a safe to her for her words to be to have comed while to

live with you. I to wished in life I to be to have had a foster mom to have

done this to me , but none to be like this for me as a child. It to cause a

sadness in me but at same gives me the energy to fight harder for the

children of autism of today.

A funny thing my daughter to say to her dad tonight. Missy to be our picky

eater who to be to wants to eat little and then to come back later wanting

junk like foods LOL well her daddy to tell her to try to eat a few more

bites of her meal. She to say. " I to be so much full now it to feel like my

belly has stitches in it " . LOL I to not know where this to comed from as she

to be so serious her father to rolled off hims chair in laughter and said

well if you to be that full I to guess you better not eat another bite so to

not bust those stitches open. She to looked puzzled and then tried to look

to see if maybe she to for real have stitches.LOL she to be so much a fun

kid. She to always be like this and her father to say she to be much like

me. I to guess maybe this to be why she to be to look like me too.

Sondra

Sondra

[Guest guest]

Hi Sondra,

I live on the other side of Pennsylvania, closer to Philadelphia. I do

agree with you that we have some beautiful scenery in this state. Hope you

enjoy the conference while here. Where did you say you were from?

Re: question

> ,

> I will be to go to Pittsburgh ( wexford)? for a conference in a few weeks.

I

> to be to go through Pennsylvania once and the hills, valleys and mountain

> areas are much beautiful there.

> Sondra

>

>

>

>

>

[Guest guest]

I to be from Ohio, the Columbus areas.

Sondra

[Guest guest]

Hey the IVIg may help with the joint pain. It seems to have made a big

difference for Lucas. He use to complain all the time that his legs hurt. I

have not heard it for a very long time. BARBIE

[Guest guest]

Actually one of our indicators that his dose needed to go up was that his

joints began hurting again. So.... hopefully it will make it better. BARBIE

[Guest guest]

and ph both did this. ph had hip pain and had x-rays.. b/c they

thought it was related to the SDS..but it was normal. Both of my boyshave leg

pain and knee pain to this day.......

Pattie

[Guest guest]

Barbie, that would be wonderful. Gosh-- I can;t imagine them not complaining

that their legs hurt. WOW......

I have to carry up the stairs sometimes b/c his knees hurt so much and he

says he can;t walk up the stairs.

Pattie

[Guest guest]

> Does anyone have there soaps/toiletries in stores, giftshops, etc?

> I am getting ready to try it. Do you put your products in stores on

> consignment, and if so, how much of a percentage do I give the

> retailer? Or does the retailer buy the products from you at a lower

> price to resell in his shop. Any info appreciated.

>

> Thanks, Betty

Hi Betty,

Generally it's either consignment, mall or boutique, OR wholesale.

CONSIGNMENT:

You give them the product, they sell it and give you the money (a percentage

of the sale) after the fact. The benefit is that you can get exposure; the

downside is that the shop owner doesn't have any real vested interest in the

product - they're not out anything except some time and shelf space if it

doesn't sell. Things to watch out for: check how the shop LOOKS before you

put anything in there (dusty? clean? informed salespeople?); make sure you

get a really good contract that covers inventory handling, payment

schedules, how to handle theft and damage to product, cancellation, etc.;

occasionally check to make sure that you've been paid for what's not on the

shelves.

MALL or BOUTIQUE (what it's called depends on the area you live in).

You rent a space/stall for a fixed amount per month. Usually you are

responsible for putting the product in, keeping it stocked and looking nice.

There is a central check-out for all spaces/stalls in the mall. You get a

percentage of the sales (usually a higher percentage than straight

consignment). The percentage pays for your space fee first and you get

anything over that. Sometimes that arrangement can be made long distance

where someone in the shop sets up your space for you and keeps it stocked.

WHOLESALE

You sell your product outright to a store or shop, usually for 40% - 60% of

the retail price. You can set a minimum amount of the sale (ie minimum

order of $100 or $50 or whatever you feel comfortable with). The advantage

is that it's a straightforward deal - you have no lingering responsibilities

and are paid up front; the downside is that your revenue is generally lower.

The biggest factor to consider, in the long run, is which retail presence

will actually MOVE the product. It's where product moves that you will get

your reliable and continued income, regardless of which way you go.

Personally, I've been through all three. So far the most successful for me

has been straight wholesale sales.

HTH,

Marie Gale

Chandler's Soaps

www.chandlerssoaps.com

[Guest guest]

From my experience STAY AWAY FROM CONSIGNMENT, I've lost A LOT of money

trying that route. I sell mine wholesale or not at all now. If a store/shop

owner buys your products wholesale they are more inclined to move the

product because they have invested money and a vested interest in seeing the

product move.if it's there on consignment they are not as motivated to

promote your products.

Just my 2¢

I'm just coming out a 6 month contract with a Crafter chain and have had a

very bad experience.my products just sat.the store never cleaned my

displays - even though it was in the contract.just always tell

yourself.never do consignment, never do consignment, never do consignment.

I've read from others on this chat and other not to do it but thought I

could prevail.I bombed with consignment.definitely listen to the advice you

see on these chats.the veteran soaps were right.

Kim Lutz Isenhour

Lutzy's Lather

Re: question

> > Does anyone have there soaps/toiletries in stores, giftshops, etc?

> > I am getting ready to try it. Do you put your products in stores on

> > consignment, and if so, how much of a percentage do I give the

> > retailer? Or does the retailer buy the products from you at a lower

> > price to resell in his shop. Any info appreciated.

> >

> > Thanks, Betty

>

>

> Hi Betty,

>

> Generally it's either consignment, mall or boutique, OR wholesale.

>

> CONSIGNMENT:

> You give them the product, they sell it and give you the money (a

percentage

> of the sale) after the fact. The benefit is that you can get exposure;

the

> downside is that the shop owner doesn't have any real vested interest in

the

> product - they're not out anything except some time and shelf space if it

> doesn't sell. Things to watch out for: check how the shop LOOKS before

you

> put anything in there (dusty? clean? informed salespeople?); make sure

you

> get a really good contract that covers inventory handling, payment

> schedules, how to handle theft and damage to product, cancellation, etc.;

> occasionally check to make sure that you've been paid for what's not on

the

> shelves.

>

> MALL or BOUTIQUE (what it's called depends on the area you live in).

> You rent a space/stall for a fixed amount per month. Usually you are

> responsible for putting the product in, keeping it stocked and looking

nice.

> There is a central check-out for all spaces/stalls in the mall. You get a

> percentage of the sales (usually a higher percentage than straight

> consignment). The percentage pays for your space fee first and you get

> anything over that. Sometimes that arrangement can be made long distance

> where someone in the shop sets up your space for you and keeps it stocked.

>

> WHOLESALE

> You sell your product outright to a store or shop, usually for 40% - 60%

of

> the retail price. You can set a minimum amount of the sale (ie minimum

> order of $100 or $50 or whatever you feel comfortable with). The

advantage

> is that it's a straightforward deal - you have no lingering

responsibilities

> and are paid up front; the downside is that your revenue is generally

lower.

>

> The biggest factor to consider, in the long run, is which retail presence

> will actually MOVE the product. It's where product moves that you will

get

> your reliable and continued income, regardless of which way you go.

>

> Personally, I've been through all three. So far the most successful for

me

> has been straight wholesale sales.

>

> HTH,

>

> Marie Gale

> Chandler's Soaps

> www.chandlerssoaps.com

>

>

>

>

>

[Guest guest]

does anyone know if someone makes a Tommy Hillfigure(sp) fo or eo for

MEN????? TIA~Misty

http://community.webtv.net/mpw98/ForeverYoursATouch

[Guest guest]

Sharon,

What did they give Laruen? Only IV fluid-or other meds as well??

Sometimes they insist on things like Compazine, etc. Could she have been

having a reaction to anything? There is also latex allergy to consider in a

hospital environment, or the chemicals they use. My eyes react each and

every time I am in a hospital or Doctor's office--because of the state of my

immune system and the harsh chemicals they must use.

Those are just a few possibilities. She could also have a bad association

with IV as you mentioned. But I wouldn't automatically assume that--our kids

can be so sensitive to so many things. Did they do a peak flow when she was

having trouble with breathing? What were her O2 sats?

Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic

sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten

surgeries, heart surgery pending.

[Guest guest]

Sharon,

That's what we're here for!! The reason I asked is because I react so

badly to Compazine, including a raging headache. They have included it

before with Demerol for migraine, but it makes my migraine worse!! So, I

guess in my opinion, there are no " innocent " meds. Even the ones just for

nausea can be a problem.

Don't kick yourself--just ask, ask ask lot of questions when you're there.

Also, you can consider calling the ER to find out what it was they gave

. That way, you could avoid it in the future.

Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic

sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten

surgeries, heart surgery pending.

[Guest guest]

To all,

I have a question. Last night when we were in ER and was receiving her IV

fluids, she complained that she was getting that " weird feeling when I take a

breath, and a headache " .. I was baffled because I didn't think straight fluids

could make you feel this way. Has anyone ever had reactions like this to

straight IV fluids.

I didn't say this to , because I did not want to diminish what she was

feeling, however I thought it may be an emotional reaction to remembering how

the IVIG felt. I asked the nurse and she said it wouldn't hurt to slow it down,

but didn't know if the IV could cause that or not. 2nd question, Do most of

your children get treated with antibiotic even if they confirm the infection is

not bacterial? s white blood cell count was 6000, which they told me

was very good , even for a healthy adult. Are PID kids White blood Cell counts

usually not within normal range? I asked the doctor the significance of the

White Blood Cell level, and he explained that if it is viral , you will not see

an elevated WBC. They did not treat her with antibiotics as a follow up

measure. I was a bit surprised.

Just trying to digest this as I learn and sort it all out. Any help would be

appreciated.

Thanks again

Sharon

s 11 igg def

[Guest guest]

: Re: question

Sharon,

What did they give Laruen? Only IV fluid-or other meds as well??

Sometimes they insist on things like Compazine,

Sandi,

This forum is so helpful, because based on your questions back to me, I am

realizing that I did not document what meds were given to her other than a shot

for nausea. The IV was just glucose (does that sound correct,) .They added a

medication for nausea. I am familiar with compazine and it was not compazine.

I had never heard of this drug before. They said it would NOT make her drowsy.

Shame on me for not writing it down. I think what I need to begin doing is

taking in my medical journal that the IDF foundation gave me and document

everything on these types of visits. The ER did not do any kind of peak flow

testing , even though I gave them her history of asthma, and told them when she

said " it felt funny when she took a breath " She wasn't in true distress, maybe

that is why, she just said if felt funny when she took a breath, and she was

getting a bad headache. I never thought of other types of allergies, that

makes total sense though. Thank you, for your feedback, it so very helpful. I

am learning so much, and can take this information and apply it to my next

visit. The experience on this board is so helpful, and I truly appreciate the

sharing of ideas and information.

Sharon

s mom 11 igg def

]

This forum is open to parents and caregivers of children diagnosed with a

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[Guest guest]

Sharon:

Boy did they give you the short answer! First of all, there are no absolutes

with all this stuff, it's not always black and white. That used to really

frustrate me, I wanted firm answers with no doubt. But the body has a mind of

it's own and anyway, PID pumpkins don't necessarily respond the same way

other people do. It seems to me that like many aspects of illness, everybody

is a little different. So some kids may not mount a white cell response or

some child might not make a fever, etc.etc. Some viruses can start off

looking bacterial, it's all a little confusing.

But the general overall rules of thumb are a very good place to start

(viruses having low white count, bacteria having high), they're just not

perfect.

Our immuno had us panic every time had a high fever. Which is a good

loose rule, however, the highest fever she's ever had was from a virus! So

again, nothing is set in stone.

In our case, we had so many CBCs with every fever that we discovered

was textbook in her responses to infections. So much so that I usually feel

very confident in whatever we discover with a CBC. In her case, if she's well

or not very sick, her white counts are between 7,000 and 9,000. (this is just

!!! Not everybody!!) If she's fighting a nasty virus, her white count is

usually 5,500 or below. She actually goes below the normal white count

sometimes. When she's fighting bacteria, her count always goes higher,

between 14,000 & 26,000. In her case, if she's 18,000 or above, she's got

something big.

NOW. Not everybody responds that nicely!!! So don't go by us necessarily! And

sometimes in the first day or early stages of a virus, sometimes your blood

count can look sort of bacterial... the troops being dumped into the

bloodstream or something. So with , they do the CBC and give the

Rocephin or IV Ceftriaxone if it looks bacterial (high white count and low

lymphocytes). Back when her PID was worse, they would give the Rocephin

regardless of what the counts looked like, if she had a fever of 102 rectal

or greater (this was because of her history of having had meningitis). Any

time they gave Rocephin, we went back for three days, taking new CBCs and

giving more Rocephin. Again, when her PID was worse, they took blood cultures

with every CBC. Now they only do that if the CBC looks bacterial.

So it depends. We have always had a firm, set protocol. I really appreciated

that because we knew exactly what to do in any case and we could spout those

instructions to ER staff and it would be just us following the immuno's

instructions, not just being bossy parents.

I'm not surprised they didn't give antibiotics. If she has a gastro bug, it

is most likely viral. Bacterial gastro infections usually come with blood in

the stool according to our ped. I made them do stool cultures with the first

two gastro infections had, fearing bacteria. But after that I started

to recognize the signs and believe them that they were pretty sure it was

viral.

I think it's one of those things that's a learning process -- learning how

your own child's body responds to illness. I feel fortunate 's so

predictable.

(mom to Kate, born 9/19/02; and , age 4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

[Guest guest]

In the beginning, right after diagnosis Macey was usually covered with

antibiotics for most everything. If something

viral showed up then it was bound to turn into a secondary bacterial infection.

Now as the IVIG has regulated her

system to a degree we're alot more stingy with the antibiotics. We do blood

work and base decisions on values that are

her norms instead of lab norms. We know her baseline WBC and differential. We

know her symptoms for infection and

they're usually backed up by a history of chest xrays or cultures that proved

bacterial. She's also on a daily dose of

Bactrim to cover pneumococcal bacteria. I would start to trend 's WBC's

(both while well and while sick). With

the sick WBC counts being done with something else proving it was bacterial. At

first they said that she just wasn't

ever bacterial, then when we had a culture or something else to show bacterial

they started realizing that she had her

own lab values to base things on.

I'm wondering if the nausea med was Phenergan (Promethazine). It could cause

the symptoms you describe.

Ursula Holleman

mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease,

GERD, Diabetes Insipidus, colonic

inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

In the beginning, right after diagnosis Macey was usually covered with

antibiotics for most everything. If something

viral showed up then it was bound to turn into a secondary bacterial infection.

Now as the IVIG has regulated her

system to a degree we're alot more stingy with the antibiotics. We do blood

work and base decisions on values that are

her norms instead of lab norms. We know her baseline WBC and differential. We

know her symptoms for infection and

they're usually backed up by a history of chest xrays or cultures that proved

bacterial. She's also on a daily dose of

Bactrim to cover pneumococcal bacteria. I would start to trend 's WBC's

(both while well and while sick). With

the sick WBC counts being done with something else proving it was bacterial. At

first they said that she just wasn't

ever bacterial, then when we had a culture or something else to show bacterial

they started realizing that she had her

own lab values to base things on.

I'm wondering if the nausea med was Phenergan (Promethazine). It could cause

the symptoms you describe.

Ursula Holleman

mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease,

GERD, Diabetes Insipidus, colonic

inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Macey receives her 15 gms in 150 cc's. I'd call the pharmacy that

reconstitutes the IgG and ask them what's the least amount of fluid they

have to use to make the IVIG.

Ursula Holleman

and Macey's mom (7 yr. old with CVID, Diabetes Insipidus)

http://www..com