Re: Another question, I am still confused-MORE-

[Guest guest]

We have been on GSE since May, all three of us. Yeast is still and

will continue to be a problem especially while chelating.

Yeast will need a continuous treatment plan during chelation. I know

it kicks up and gets worse during a round even in my No yeast

symptoms child, she finally gets enough yeast to actually show

symptoms.

From what I am reading you are skipping doses of chelator at night?

You cannot chelate only in the daytime or only for a day or two. It

must be three days/two nights round the clock, every three-four

hours. If you are skipping doses you are freeing up metals and your

son is showing effects of redistribution.

This does not mean he can't handle oral chelators. Just that the

dosing is a problem. He will exhibit horrible behavior and likely

feels horrible following irregular dosing. You are freeing up metals

with no follow up chelator to absorb them.

My son drank his chelator in a medicine syringe at night. We had to

wake him, he screamed and cried and kicked and fussed. For the first

few rounds. Now he wakes partially, calmly drinks it up and falls

back to sleep with no fuss. This is a necessary evil of chelation.

Wake the child if he will not drink in his sleep. They get used to

it and it gets easier. If you are not ready for that it might be

best to go with transdermal chelators or to hold off until you are

ready. Better to have a safe dosing schedule than risk repoisoning.

We have done 11 rounds on my son, 6 rounds on my daughter and four

round on myself this way, with zero problems. We are only seeing

improvments.

Our schedule goes like this: We begin the first dose when he gets

off the bus on Friday. Every three hours we give him 12mg dmsa/12mg

ala. We go four hours at night. No longer. If you go more than one

hour pass the dose time, you stop the whole round and wait four days.

Friday: 3:30pm, 6:30, 9:30, 12:30am (Saturday), 4:30am, 8:30am,

11:30am, 2:30pm, 5:30pm, 8:30pm, etc...and we continue this through

saturday and sunday, going until the last dose on Monday morning

before he gets on the bus.

It is rough to adjust to and waking at night and all, but it does

not work any other way. See if you can find 25 or 30mg ALA and

split those to get a more accurate dose.

> >

> > I cant speak for anyone else, but this has been very expensive

for

> > us. Trial and error we have a bunch of stuff we cant even use.

> >

> > To everyone who has answered me, I contacted the doc yesterday

and

> > he said that my son cant handle oral chelators and to stop. He

> said

> > he doesnt see that he could have yeast being on nystatin for 2

> > months. Now what? He wants to add difulcan also.

> > I cant do the chelator overnight, we have to put everything in

> > drinks and waking him and getting him to drink is impossible.

Also

> > he is in school so the every 3 hours is during waking time on

Sat

> > and Sun.

> > This last week was his off week he has not had dmsa for 10 days,

> > would he still be stimming and hyper?

> > The ala we were given is 300 mg but I split a little into each

dose

> > of dmsa.

> > Any ideas?

> >

>

[Guest guest]

Jan and others

Clearly we are doing this all wrong. I can not believe I am hurting

my child like this. I was following doctors orders and trying to

use Andys protocol at the same time. If in fact my doctor is

ignorant to this I am stuck. He is two hours away and the next

closest doctor is 5 hrs.

Should I keep with this doctor and get the transdermal? What about

the ala is that every few hours too? My doctor actually handed me

the 300mg ala, but I have always split it up. Waking my son would

be hard, he wakes being startled and sometimes downright freaks

out. His sleep schedule already has me so out of whack. the

transdermal would be easier. Advice is appreciated greatly.

Mandy

> > >

> > > I cant speak for anyone else, but this has been very expensive

> for

> > > us. Trial and error we have a bunch of stuff we cant even

use.

> > >

> > > To everyone who has answered me, I contacted the doc yesterday

> and

> > > he said that my son cant handle oral chelators and to stop.

He

> > said

> > > he doesnt see that he could have yeast being on nystatin for 2

> > > months. Now what? He wants to add difulcan also.

> > > I cant do the chelator overnight, we have to put everything in

> > > drinks and waking him and getting him to drink is impossible.

> Also

> > > he is in school so the every 3 hours is during waking time on

> Sat

> > > and Sun.

> > > This last week was his off week he has not had dmsa for 10

days,

> > > would he still be stimming and hyper?

> > > The ala we were given is 300 mg but I split a little into each

> dose

> > > of dmsa.

> > > Any ideas?

> > >

> >

>

[Guest guest]

Many people " use " doctors as a resource.

They do not rely upon them as their only

source of advice. I do what I think is

right for my child. I use the doctors to

order the drugs and tests that I think

he needs. If one doctor is unwilling,

I find another.

For example, I wanted

my son to have an upper and lower GI

scope. We went to a doctor in Atlanta

for a few months and he would not do the

scope. So I made an appointment with

a doctor in Boston. He did the scope.

Discovered an ulcer and is treating

that ulcer with remarkable improvements

in my child's symptoms. (Obviously,

we have great insurance.) This is

just an example of being the " Captain "

of your child's health care, as opposed

to finding a doctor to be the " Captain. "

Doctors are actually incapable of being

a " Captain " since they are so specialized.

> > > >

> > > > I cant speak for anyone else, but this has

> been very expensive

> > for

> > > > us. Trial and error we have a bunch of stuff

> we cant even

> use.

> > > >

> > > > To everyone who has answered me, I contacted

> the doc yesterday

> > and

> > > > he said that my son cant handle oral chelators

> and to stop.

> He

> > > said

> > > > he doesnt see that he could have yeast being

> on nystatin for 2

> > > > months. Now what? He wants to add difulcan

> also.

> > > > I cant do the chelator overnight, we have to

> put everything in

> > > > drinks and waking him and getting him to drink

> is impossible.

> > Also

> > > > he is in school so the every 3 hours is during

> waking time on

> > Sat

> > > > and Sun.

> > > > This last week was his off week he has not had

> dmsa for 10

> days,

> > > > would he still be stimming and hyper?

> > > > The ala we were given is 300 mg but I split a

> little into each

> > dose

> > > > of dmsa.

> > > > Any ideas?

> > > >

> > >

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Mandy,

You have done the best you knew how with your child, so please don't

be hard on yourself!! You can do it differently now that you know

better.

You don't necessarily need a Dr. to chelate, but you will need one

to get Transdermal if that's the route you choose. We use a DAN

Dr., but we do chelation following Andy's protocal. The thing to

remember about transdermal chelation is that the dosing still needs

to be frequent and around the clock. So, you will have the same

issues at night because you will need to get up and apply t he

transdermal as well. For us, rubbing the lotion would have woke my

son up more than the oral. For me, I plan his doses around my

schedule. So, he gets a dose at 10:00 p.m. because I am still up at

that time. He then gets another dose at 2:00 a.m. I set the alarm

for that one. The next dose is 6:00 a.m. Someone in the house is

up by then. For us, we use a small amount of Juice (about 1-2 tsp)

and mix the chelator with the small amount of juice. I put it in a

syringe and I go to his room and I turn the closet light on and only

open the door as much as I need to be able to see where he is. I go

and gently put the syring to his lips and he instinctively sucks on

the syringe and drinks it down. He very rarely wakes up. We have

the flavored DMSA so it tastes ok. I know this hasn't worked for

other parents, but it has worked for us. You won't know until you

give it a try.

You may just want to take a break from chelation for a few weeks and

just give his little body a rest. When you start back up, you can

follow Andy's protocal. I would start with the a low dose. I can't

remember if you indicated how much your son weighs, but you want to

give him 1/8 -1/2 mg per pound of weight. My son is 42 lbs and he

gets 12.5 mg DMSA. For ALA, we use even less. He gets 6.25 mg

ALA. If it were me, I would start with just the DMSA and do a

couple rounds with that alone. Make sure he tolerates that. Then

add the ALA. With ALA, the doses need to be given every 3 hours

during hte day and you can stretch to 4 hours at night.

Hope this helps! Please keep asking the questions! We will do our

best to help guide you!

> > > >

> > > > I cant speak for anyone else, but this has been very

expensive

> > for

> > > > us. Trial and error we have a bunch of stuff we cant even

> use.

> > > >

> > > > To everyone who has answered me, I contacted the doc

yesterday

> > and

> > > > he said that my son cant handle oral chelators and to stop.

> He

> > > said

> > > > he doesnt see that he could have yeast being on nystatin for

2

> > > > months. Now what? He wants to add difulcan also.

> > > > I cant do the chelator overnight, we have to put everything

in

> > > > drinks and waking him and getting him to drink is

impossible.

> > Also

> > > > he is in school so the every 3 hours is during waking time

on

> > Sat

> > > > and Sun.

> > > > This last week was his off week he has not had dmsa for 10

> days,

> > > > would he still be stimming and hyper?

> > > > The ala we were given is 300 mg but I split a little into

each

> > dose

> > > > of dmsa.

> > > > Any ideas?

> > > >

> > >

> >

>

[Guest guest]

My son is 65 lbs. Do you mix the ala with the dmsa when dosing?

How long does it take for the cream to soak in? Now our doctor is

in the belief that he is not tolerating oral. I did reform what the

doctor said but not enough.

What about suppositories? The doctor has mentioned them too. Thank

you all so much for helping me, this has been a hard time for us.

This last weekend was his off weekend so this coming monday it will

have been two weeks since he has had any dmsa/ala. We are taking

time off until I can figure this out.

> > > > >

> > > > > I cant speak for anyone else, but this has been very

> expensive

> > > for

> > > > > us. Trial and error we have a bunch of stuff we cant even

> > use.

> > > > >

> > > > > To everyone who has answered me, I contacted the doc

> yesterday

> > > and

> > > > > he said that my son cant handle oral chelators and to

stop.

> > He

> > > > said

> > > > > he doesnt see that he could have yeast being on nystatin

for

> 2

> > > > > months. Now what? He wants to add difulcan also.

> > > > > I cant do the chelator overnight, we have to put

everything

> in

> > > > > drinks and waking him and getting him to drink is

> impossible.

> > > Also

> > > > > he is in school so the every 3 hours is during waking time

> on

> > > Sat

> > > > > and Sun.

> > > > > This last week was his off week he has not had dmsa for 10

> > days,

> > > > > would he still be stimming and hyper?

> > > > > The ala we were given is 300 mg but I split a little into

> each

> > > dose

> > > > > of dmsa.

> > > > > Any ideas?

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Mandy,

We do dose the DMSA and ALA together. It's just easier that way.

So, for a 65 lb boy, I would start with 12.5 mg (for me that is just

easier to dose...1/2 cap of a 25mg capsule). You could go even

lower and dose 1/3 cap , around 8.33 mg. Same dosage rules for

ALA. We have just found that ALA is really powerful and for my son,

its best to keep his ALA dose lower. So you may want to consider

starting with just 8.25 mg of ALA each dose.

It really is easier to chelate on the weekends. Start on Friday

after school and end on Monday right before school. You may want to

do a 3 on 11 off schedule just to see how he does with that.

Tell the Dr you don't think the problem is the oral chelator, you

think the problem is too high of dose. Tell him you would like to

try using the oral chelator but drastically reducing the dose.

Remember, you get to make the decisions for your child, NOT the Dr.

From what I have read, suppositories aren't the best idea. Also,

another thing to think about. The cost of transdermal lotion is

about $100 a month (from the quotes we got when we were trying to

figure out which way to do). That's just too much money for me when

a bottle of DMSA is a whole lot cheaper. And, yeast can still be an

issue with the transdermals. So, for us oral was the way to go.

Hope that helps!

> > > > > >

> > > > > > I cant speak for anyone else, but this has been very

> > expensive

> > > > for

> > > > > > us. Trial and error we have a bunch of stuff we cant

even

> > > use.

> > > > > >

> > > > > > To everyone who has answered me, I contacted the doc

> > yesterday

> > > > and

> > > > > > he said that my son cant handle oral chelators and to

> stop.

> > > He

> > > > > said

> > > > > > he doesnt see that he could have yeast being on nystatin

> for

> > 2

> > > > > > months. Now what? He wants to add difulcan also.

> > > > > > I cant do the chelator overnight, we have to put

> everything

> > in

> > > > > > drinks and waking him and getting him to drink is

> > impossible.

> > > > Also

> > > > > > he is in school so the every 3 hours is during waking

time

> > on

> > > > Sat

> > > > > > and Sun.

> > > > > > This last week was his off week he has not had dmsa for

10

> > > days,

> > > > > > would he still be stimming and hyper?

> > > > > > The ala we were given is 300 mg but I split a little

into

> > each

> > > > dose

> > > > > > of dmsa.

> > > > > > Any ideas?

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Please don't beat yourself up. We are not coming down on you at all,

just that we saw the problem and it is fixable!

You don't need to change doctors. Sometimes they beleive they are

doing the best. You can do this with your doc as a back up, they can

do testing and such for you.

Ala is every three hours. so when the day comes to give both, you

give them together every three hours.

Bear in mind he may wake for the transdermal too, as it can smell

and is kept in the fridge. But it may work better for you right now.

When waking my son, we are gentle and just rub him and talk softly

until he is awake enough to understand that it's time for meds. But

in the beginning he was horrible. some here remember me posting

about it, he screamed and cried, and kicked me and it would take

almost 40 minutes before he would finally give in and take it. After

a while, he realized that he just had to do it. And of course, as he

felt better, he was less resistant to everything including that. Now

he barely wakes at all, just eats it and drinks some water, and he's

out. Takes three minutes. But there is no harm in doing transdermal

if you can get it. Keep in mind that the dosing is a bit trickier as

less is absorbed through the skin, others can help you figure it

out. We use oral because the dosing is more accurate. But you need

to do what is going to work for you.

> > > >

> > > > I cant speak for anyone else, but this has been very

expensive

> > for

> > > > us. Trial and error we have a bunch of stuff we cant even

> use.

> > > >

> > > > To everyone who has answered me, I contacted the doc

yesterday

> > and

> > > > he said that my son cant handle oral chelators and to stop.

> He

> > > said

> > > > he doesnt see that he could have yeast being on nystatin for

2

> > > > months. Now what? He wants to add difulcan also.

> > > > I cant do the chelator overnight, we have to put everything

in

> > > > drinks and waking him and getting him to drink is

impossible.

> > Also

> > > > he is in school so the every 3 hours is during waking time

on

> > Sat

> > > > and Sun.

> > > > This last week was his off week he has not had dmsa for 10

> days,

> > > > would he still be stimming and hyper?

> > > > The ala we were given is 300 mg but I split a little into

each

> > dose

> > > > of dmsa.

> > > > Any ideas?

> > > >

> > >

> >

>

[Guest guest]

Mandy,

I say keep this doctor for now and get the transdermal DMSA and

transdermal ALA. DAN! docs haven't been that impressed with TD-DMSA

(I think based on mercury pulls with urine tests) but have been

happier with TD-ALA. Still, most DAN! docs are using transdermals

as a first option.

There will be times where transdermal is both the EASIER and the

BETTER alternative for a family. Since your child is so difficult

to dose at night, and this likely will lead to missed doses/missed

sleep, I say transdermal is your option. It is better than nothing,

and certainly better than skipping night time doses or using huge

doses of chelators.

If your doctor tells you to apply TD-ALA/TD-DMSA every 8 hours, you

split the dose in half and apply it every 3-4 hours instead. You

can tell him this (I told my doc I would do this and she was OK with

it) or you can just do it without informing the doctor.

I use TD-DMSA and oral ALA. I dose every 3 hours with both since I

get headaches when I wait longer to use ALA (I do 3.5 hours at

night). Using TD-DMSA that often is still OK, but you have to

adjust the dose (if they say .5 ml every 8 hours than use about .2

every 3 hours). I use 20 mgs oral ALA with my son (45 lbs), but he

seems to tolerate it just fine. Many start with doses as low as 5

mgs. I've also upped my TD-DMSA to .3 ml/3 hours (about 60 mgs)

because I know he is probably absorbing between 10-30% of that

dose. Nobody can really say how much TD-DMSA is absorbed... at

least I haven't seen those numbers.

It is VERY easy to keep a DAN! doctor and use Andy's protocol. I

have found my two DAN! docs open to my use of Andy's protocol... the

only difference is how often I dose. I'm sure other DAN! docs won't

be so receptive.

All of us go through these 'what are we doing?' feelings. There are

also some kids who seem to do OK with the basic DAN! protocol, but

your child is not one of them. I wish the DAN! docs would open

their minds to the option of lower doses/frequent applications as an

option for children who are having trouble tolerating chelators.

Good luck to you. Sorry this is a choppy message. I'm in a hurry.

Pam

>

> > > > >

> > > > > I cant speak for anyone else, but this has been very

> expensive

> > > for

> > > > > us. Trial and error we have a bunch of stuff we cant even

> > use.

> > > > >

> > > > > To everyone who has answered me, I contacted the doc

> yesterday

> > > and

> > > > > he said that my son cant handle oral chelators and to

stop.

> > He

> > > > said

> > > > > he doesnt see that he could have yeast being on nystatin

for

> 2

> > > > > months. Now what? He wants to add difulcan also.

> > > > > I cant do the chelator overnight, we have to put

everything

> in

> > > > > drinks and waking him and getting him to drink is

> impossible.

> > > Also

> > > > > he is in school so the every 3 hours is during waking time

> on

> > > Sat

> > > > > and Sun.

> > > > > This last week was his off week he has not had dmsa for 10

> > days,

> > > > > would he still be stimming and hyper?

> > > > > The ala we were given is 300 mg but I split a little into

> each

> > > dose

> > > > > of dmsa.

> > > > > Any ideas?

> > > > >

> > > >

> > >

> >

>

[Guest guest]

My doctor called in a script for transdermal. Do anyone know if insurance covers

this? He said it would be 120 a month. Where do you find transdermal ala? How

long does it take for transdermal to absorb?

Also I get the dosing schedule, but are there weeks off like my doc suggested?

Thanks to all this has been a great help!

---------------------------------

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[Guest guest]

Compounding pharmacy's have to make it for you. They don't sell it

anywhere. It is uncertain if they will cover it. Probably not, as

there is no " medically " recognized use for it. But you could try. It

is usually sold as a vitamin supplement. So the money you will pay is

actually for them to compound it. I have heard of some people making

their own cream. Shame is that a bottle of ALA is anywhere from $5-12.

With the dosing schedule there is time off. Usually at least four days

but you can go longer. Some chelate every week for the first few

months, and then go to every other week, and down from there. See how

your child does. If he/she does well, then you can do it every weekend

if you wish. I can't say that we ever take more than two weeks off.

But if my child is sick, we don't do a round. So there will be times

you can't chelate and that is ok. I am not sure how many weeks your

doc is thinking of?

>

> My doctor called in a script for transdermal. Do anyone know if

insurance covers this? He said it would be 120 a month. Where do you

find transdermal ala? How long does it take for transdermal to absorb?

> Also I get the dosing schedule, but are there weeks off like my

doc suggested?

> Thanks to all this has been a great help!

>

>

> ---------------------------------

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Great rates starting at 1¢/min.

>

>