ME versus DAN doc on clostridia and treatment - please help.

[Guest guest]

Becky,

It's a hard one, I know. Part of what you have to decide is how much you trust

what your DAN tells you. If Dr. O'Hara had given me that answer after I

questioned her, I would do what she says. That's because she has always told me

never to be afraid to question her, and because I trust her with iel's

care completely. I don't know if this is true regarding the clostridia and

recommended supp to treat it, but I'll tell you this. Dr. O'Hara and Vikki have

often told me that you will know in about a week if many of these supps are

going to be benefitial. I would be tempted to try it for a week or two to see

if improvements were made. If not, I'd drop it. iel's on Valtrex, and it

can't be compounded for SCD. I gave it a month's worth of consideration before

deciding to try it, and we're seeing some gains in language since starting.

Remember that Elaine always said that if you need something, and it can't be

formulated in an SCD legal way, use it anyway. So, I guess my tendency would

also be to try it out just to see if it helps, but I'd also probably spend some

time considering it before I started...I'd also probably be wondering if I did

the right thing for at least the first week that I started, but I'd more than

likely give it a try. That's my two cents.

Meleah

ME versus DAN doc on clostridia and treatment - please

help.

Ok I questioned the DAN doc about Gavin truely having clostridia

since he didn't have the typical symptom of diarrhea. I also told

her the culturelle Lactobacillus GG she prescribed was not SCD legal

and that others here use s. bouldarii. I wanted to list her reply

in the hopes that someone could help me determine what is best for

my child. She actually wrote me a letter to help me clarify: Sorry

it's a little long

" There are many types of Clostridia. Obviously the one that most

people are telling you about is clostridia dificile, which does

indeed cause diarrhea. THIS IS NOT THE TYPE OF CLOSTRIDIA ABOUT

WHICH WE ARE SPEAKING REGARDING GAVIN. Clostridia is a generalized

name of a genus of soil organisms. Gavin has one of the more mild-

mannered forms - not as bad as dificile. All clostridia are

obligate anerobes and cannot be easily cultured.

It is Dr. Shaw, director of Great Plains Laboratory, who

first made the connection between DHPPA, clostridia and behavior

problems. He first found that DHPPA was an indicator of soil based,

toxin producing anerobes (eg clostridia), and that when DHPPA was

elevated (GAVIN's is) there were behavior problems. He searched, as

have I, for several years to find ways to reduce the clostridia

population and thereby reduce the DHPPA. The ONLY thing he ever

found is the Lactobacillus GG.

After a child with elevated DHPPA is given Lactobacillus GG the

levels of that organic acid in the urine drop, and behavior

improves. If it is stopped in just a few months, the DHPPA rise and

behavior will worsen again. He has tested this again and again for

years.

So you see, this has nothing to do with diarreha, and nothing to do

with clostridia dificile. I opt for the Culturelle because it is

Lactobacillus GG and has only about 15 parts per million of casein,

as opposed to the other formulations of it.

You have several choices: find a Lactobacillus GG product that has

less 15 ppm of caseine and use that, leave the DHPPA untreated OR

decide the 15 ppm of casein is not going to be that damaging and try

the Culturelle. "

The guy at Kirkman's also told me that the GG has inulin in it which

is a disacaride (sp- sorry). I'm torn!!!! The sugar will feed what

ever is going on in his gut. The gluten and casein sensitivities

are caused by the messed up gut..... The tests however show no leaky

gut or yeast..... He obviously has bacteria due to inconsistent pooh-

mostly constipation lately..and the " clostridia " ....UUGGHH

I know lots here use s.boulardii, but from what I hear they have

dificile and Gavin doesn't. Kirkman's guy said they have another

product like GG, but it has multiple strains of probiotic while the

GG only has one. I don't know how to figure this out. My brain is

spinning!!! I am tempted to try the GG and see what happens. The

clostridia may be the main bacteria causing havoc on my kid and

since it is the only bacteria that doesn't respond to " starving it

out " as the SCD does with others, I feel I have to address it

another way. I think I have confused myself, hope someone here can

make sense of my mess. Thank you for any clarity anyone tries to

impose!!!!

Becky

3yold, ASD

SCD 2 months

[Guest guest]

Becky,

Your physician is right concerning clostridia. You should treat it. It should

greatly improve behavior and stools. If you don't want to give the

Lactobacillius GG - then you can do HBOT treatments. Anerobic bacteria are

killed by high dose oxygen. We have patients who have treated for just that and

I've used it for my own child for that as he has clostridia he fights

constantly.

If you want to know of a mHBOT center near you - let me know. Otherwise, I

would try the Lactobacillius GG - my son doesn't do well on it because of the

casein -but he has a leaky gut via testing and if your son doesn't -he probably

will be fine on that small amount of casein. You'll know within a week for

sure.

Blessings,

Colleen

Breath of Life Treatment Center Inc.

103-A Brady Court

Cary, NC 27511

www.breathoflifetreatment.com

[Guest guest]

Becky,

Colleen has a good point with the HBOT. If you haven't researched it yet, you

can find a wealth of info on the web. There have been studies done around the

world treating all kind of diorders and diseases with hyperbarric oxygen therapy

with great results for improvement or just slowing down a progressive disease

drasticly. A lot of kids on the spectrum have outrageous inflammation levels,

and HBOT can really help with bringing that down. I hadn't heard of it helping

clostridia, but I think HBOT can really speed along healing.

Meleah

Re:ME versus DAN doc on clostridia and treatment -

please help.

Becky,

Your physician is right concerning clostridia. You should treat it. It should

greatly improve behavior and stools. If you don't want to give the

Lactobacillius GG - then you can do HBOT treatments. Anerobic bacteria are

killed by high dose oxygen. We have patients who have treated for just that and

I've used it for my own child for that as he has clostridia he fights

constantly.

If you want to know of a mHBOT center near you - let me know. Otherwise, I

would try the Lactobacillius GG - my son doesn't do well on it because of the

casein -but he has a leaky gut via testing and if your son doesn't -he probably

will be fine on that small amount of casein. You'll know within a week for sure.

Blessings,

Colleen

Breath of Life Treatment Center Inc.

103-A Brady Court

Cary, NC 27511

www.breathoflifetreatment.com

[Guest guest]

> . The

> clostridia may be the main bacteria causing havoc on my kid and

> since it is the only bacteria that doesn't respond to " starving it

> out " as the SCD does with others, I feel I have to address it

> another way. I think I have confused myself, hope someone here can

> make sense of my mess. Thank you for any clarity anyone tries to

> impose!!!!

I would approach is as a necessary medicine that has trace illegals.

That was supported by Elaine; if one needed a medication and could not

get it compounded, then you should go ahead and take it. I have CD and

take sulfasalazine; I have to take the enteric coated one (slow

release) since the regular one gives me terrible heartburn. I went to

a compounding pharmacist, and he said he could not replicate the pill

properly. There are trace illegals in it, but if I stop taking it, I

go into a flare up, as it is an anti-inflammatory and somewhat

antimicrobial. I view it as a necessary evil (the trace illegals.)

If your son is suffering with a clostridia that SCD cannot starve out,

and the SCD legal probiotics cannot address, then I would personally go

ahead and try it; cautiously, since it seems like you don't have any

other options. Sometimes people react to the tiniest SCD illegal,

others are not as sensitive. The Lyosan acidopholus has lactose in it,

but we are told that that little amount of lactose is OK since the

lactobaccillus " eat " it. Elaine admitted she did not have time to

research the newer probiotic strains, and recommended only acidopholus

based on her research at the time (in the 80's I think?) There has

been MUCH probiotic research since then, showing various strains of

beneficial flora that are not legal, but as she is no longer with us,

they are not going to be investigated thoroughly. (S. boulardii being

one that she later changed her mind about.) I don't think suffering

from clostridia without treating it in order to stay SCD legal, when

SCD cannot address this pathogen, is wise. Anyway, this is my opinion.

Debora