Re: Digest Number 1712

[Guest guest]

Pattie,

Kody is on Ditropan. He has had absolutely no side effects whatsoever from

it. We did a sort of bladder training thing with him too, we had a potty

schedule where he had to go in and go regardless of if he thought he had to

go or not, and then we gradually made the times in between longer and longer.

This worked pretty well, but did not stop Kody's bedtime wetting. The

ditropan has done that wonderfully. And no peeing isn't life threatening but

it is emotionally upsetting. Kody was embarrased, and he definitely felt self

conscious about it. He only takes one at bedtime, and like I said, never had

any problems with it at all. He's been taking his since this fall.

Diane

Diane, thanks for the info!!!!! It makes me feel better knowing someone has

taken it w/o any side effects. This Cardura isn;t working at all...ph

(so far) doesn;t seem bothered by the fact that he pees on himself all day

long........ no that he wouldn;t in the future. and I talkd last

night about how well " adjusted " he is with his peeing issues.....

~Pattie~

Mom to , a normal, healthy 9 year old, age 6, Shwachman-Diamond

Syndrome, CVID and ph age 5, Shwachman-Diamond Syndrome

[Guest guest]

We could do this, you know!!!!!

Pattie

> > I want to get shirts made up that say, " Your SIMPLE COLD could

> > kill my children "

> >

>

> Pattie--that's a great idea!

> --Martha

~Pattie~

Mom to , a normal, healthy 9 year old, age 6, Shwachman-Diamond

Syndrome, CVID and ph age 5, Shwachman-Diamond Syndrome

[Guest guest]

> Hi Pattie,

> A neighbor of ours had bladder spasms and for some reason this led to

> frequent urinary tract infections. I was told by the mom who is a nurse if

> you don't empty the bladder completely then you are more likely to grow

> bacteria than if you do empty the bladder completely. They put the girl on

>

> prophylactic antibiotics and she is doing fine now. For some reason when

> she

> was off the antibiotics the spasm came back. Because the spasms resulted

> in

> urinary incontenance there were huge psychological problems created in

> kindergarten and 1st grade for this girl (before the docs hit on a

> solution)

> .

>

> --Martha

THANKS, MARTHA!!!!! You are always full of GREAT info!

~Pattie~

Mom to , a normal, healthy 9 year old, age 6, Shwachman-Diamond

Syndrome, CVID and ph age 5, Shwachman-Diamond Syndrome

[Guest guest]

Thank You , as usual I forgot one of the main reasons I posted to

this list, my Dr. didn't know how to prescribe this for me, I told him

1.5mg doses, so I can adjust it for myself, the druggist E-mailed me

today wanting to know about the doses and which kind I want, he said

they use only 100% pure, pills or I can get the water soluble, I'm

fumbling around in the dark here, I have picked up some info while

lurking, not enough I'm afraid to have enough confidence on my own, I

need some help, suggestions.

ENT didn't find anything wrong with my ear, with the blood in it,

sending me to a more thorough medical center for more tests, I hate

being passed around.

Happy

HAPPY THANKSGIVING to all

[Guest guest]

Thank You for this info, now I can talk like I might know

something about LDN.

The druggist told me they use only 100%, I will probably go with the

water soluble, he said the capsules are more expensive, he asked me to

fax or scan the prescription so they will be better able to help me,

I'm their first LDN patient. he gave me the name of a Neuro they work

with but have never filled LDN. I do not want to deal with another

Neuro, I've been through 6-7 in the local area.

I'm Webtv, so fax or scanning won't work, I think we will take a

little drive, beautiful weather for it, 70s, gas prices are down.

All is well!

[Guest guest]

>

> Thank You for this info, now I can talk like I might know

> something about LDN.

> The druggist told me they use only 100%, I will probably go with the

> water soluble, he said the capsules are more expensive, he asked me to

> fax or scan the prescription so they will be better able to help me,

> I'm their first LDN patient. he gave me the name of a Neuro they work

> with but have never filled LDN. I do not want to deal with another

> Neuro, I've been through 6-7 in the local area.

> I'm Webtv, so fax or scanning won't work, I think we will take a

> little drive, beautiful weather for it, 70s, gas prices are down.

> All is well!

>

========

Happy,

Have your pharmacy call Irmat pharmacy in New York...phone # listed on the LDN

site and have your pharmacy ask how the liquid LDN should be prepared and stored

for freshness. They need to know...does it need to be kept refrigerated and do

you need to shake well before each use...information such as that.

[Guest guest]

>

> Thank You , as usual I forgot one of the main reasons I posted to

> this list, my Dr. didn't know how to prescribe this for me, I told him

> 1.5mg doses, so I can adjust it for myself, the druggist E-mailed me

> today wanting to know about the doses and which kind I want, he said

> they use only 100% pure, pills or I can get the water soluble, I'm

> fumbling around in the dark here, I have picked up some info while

> lurking, not enough I'm afraid to have enough confidence on my own, I

> need some help, suggestions.

> ENT didn't find anything wrong with my ear, with the blood in it,

> sending me to a more thorough medical center for more tests, I hate

> being passed around.

> Happy

>

> HAPPY THANKSGIVING to all

>

=========

Your pharmacy needs to obtain Pure Naltrexone Powder...not the Naltrexone pills

unless you intend on mixing the solution yourself. If they will contact Park

Irmat Pharmacy in Manhattan, New York, that would be a plus in getting the

solution prepared correctly...Bihari sends all of his patients to this pharmacy.

If you do liquid LDN you can start on 1.5mg or 1.75mg or 2.0mg or up to 3.0mg

and then try going up later to 4.5mg. Liquid LDN allows you to experiment with

dosage in the early going. You may want to start with a small dose of LDN and

gradually build up to the dose you best tolerate...3.0mg, 3.5mg, 4.0mg or 4.5mg.