Thinking about "jumping ship"

[Stephanie2]

OK, so I'm over the abx. My kids guts are so darn screwed up. My husband and I were talking tonight about how ds5 is worse when he has gut bacteria than when he has pandas. And lately, he ALWAYS has gut bacteria. And poor ds2 gets yeast so bad that he is a mess emotionally and he gets a yeast rash that spreads to all different parts of his body. They are on diflucan, they are on a trillion cfu's of probiotics a day, they are on vanco, we have done it all. I just think their guts are crashing!!!!! They keep coming back positive for clostridia and yeast.

 

So here is what I am thinking about doing. Talk me down or talk me up :-) :

 

When the current treatment dose of abx is done for the current strep in the house, stop the abx (one is on augmentin, one is on amox). Slowly DC the vanco, keep up the diflucan for a while and keep up with the probiotics indefinitely. Stop the weekly azith, b/c let's face it, ds2 just got strep on weekly azith.

 

Thoughts? Crazy? DH and I think we have nothing to lose. Last night we had to hold down our raging 5yo...and he doesn't have any sign of pandas.

[philamom]

Steph- when I first started reading this forum (ok lurking) over a year 1/2 ago, there was a poster "PMoreno"--I think, that believed her childs symptoms were not getting better because of all the havoc being done to the gut. She eventually stopped all abxs. I think she mentioned something about making her own coconut milk and also purchased products through body ecolgy? I vaguely remember it's been so long. You might want to check her posts through the search engine, to see if any info is of interest.

[Fixit]

steph..i got nothing...ds could be crashing because of cdiff ..yeast...and a big old circle J...

or allergies or rising myco p...

who the HE(( knows...

did the auto immune thing kick up on its own since we never 100% marker...

 

i would love for that to work and be the answer...maybe you can connect with the other mom...

 

that true hope thing was looking interesting..i wanted to read more on that..

amd MichaelT just posted something about a natural product he and his wife see some relief with...

i wonder if it would work with mcyo p as one of the things it targets is parasite...

but i wonder if that could something for me as maybe the grapefruit seed extract may have kicked this up..

i for get what Doc Ros said it my raise something with an L that effects autisitc kids..

it also targets parasites...

ds band 41+ and 39ind..that could be anything with a tail right...

maybe other parasites??...

i know the more aware i try to be with the supps i take i can tell i like valerain root better that melitonin for me but i think that mel works better for ds..

maybe it would work but just take longer..

sorry for rampbling....maybe the longer i type the answers will come to me for my ds..

[parents4eyes]

M

Edited October 2, 2010 by parents4eyes

[Fixit]

Hey Stephanie,

 

My son had horrible gut issues. Was nauseous every day of his life, then we found Brewer's Yeast and liquid blueberry acidophiles! I'm hard pressed to remember even giving him his anti biotic, never mind finding time on an empty stomach away from antibiotics to give him acidophiles. So I started giving him 3 Brewer's yeast pills each time he has his antibiotic. It's a probiotic that is really strong and not killed by antibiotics. He hasn't been nauseous in 6 months. I get the cheapo "Now" brand. "Saccharomyces boulardii (it's other name) has been shown in one small study of 124 patients to reduce the recurrence rate of pseudomembranous colitis." Also for what it's worth, and all kids are different, but my kids did awfully on Azith, Biaxin, Augmentin, but did amazing on Keflex and Omnicef. I had written to Dr. Swedo once and she responded that in her clinic they only use penicillan or cephalosporins (sp?)(Keflex and Omnicef and others) They found Augmentin way too tough on the tummies.

 

Just my 2 cents. Oh by the way, the liquid probiotics also worked great, here's the link http://www.smartbomb.com/natlf540.html They are also filled with amino acids. Shake the heck out of it before using.

 

Nancy

 

Can you give brewers' yeast if you think there is a Candida problem?

or will it help with candida??

[thereishope]

.

Edited September 14, 2010 by Vickie

[Stephanie2]

I have Sac Boulardii in the house but I am not starting it until we are done with diflucan/ketoconozole, as our DAN says that taking the two together can actually create a die-off reaction when some of the Sac B dies from the diflucan.

 

Fixit, Scott said that Grapefruit seed extract can elevate liver enzymes, maybe that is what Dr. R is referring to? In our case that did happen so GSE is not part of my arsenal anymore :-(

[Fixit]

I have Sac Boulardii in the house but I am not starting it until we are done with diflucan/ketoconozole, as our DAN says that taking the two together can actually create a die-off reaction when some of the Sac B dies from the diflucan.

 

Fixit, Scott said that Grapefruit seed extract can elevate liver enzymes, maybe that is what Dr. R is referring to? In our case that did happen so GSE is not part of my arsenal anymore :-(

 

 

steph...i was just read somewhere the quercitin comes from GSE...is that true...

then that may be the cause of it

 

and though using quercitin to treat candida is good..maybe that is creating die off

i was really using quercintin for allergies...though...

 

http://www.healthexcel.com/docs/_cand1.html

 

Other natural aids in the fight against candida are garlic and PAU D' ARCO (or Taheebo) tea, both believed to have natural fungicidal properties. Garlic is preferably taken raw, but may be effectively utilized in capsule form in a product by the name of PHARMAX GARLIC FREEZE DRIED, available in most health food stores. QUERCITIN, an extract of grapfruit seed, has also been shown to be of particular value.

 

I CANT STAND IT...I AM SO POed..

i cant catch a break...what if this is it

the big spiral was 7th day of Q and the first day of qse....

 

DS has horrible allergies..trying to avoid shots still..

i feel like the Q may have been an actual help to his allergies....

 

all i want to do is curse right now....

and i the dan office also said nac can increase candida and didn't want us on that....

 

SHOULD HE JUST LIVE ON WATER!!!!!!!

[susie]

Hey Stephanie,

 

My son had horrible gut issues. Was nauseous every day of his life, then we found Brewer's Yeast and liquid blueberry acidophiles! I'm hard pressed to remember even giving him his anti biotic, never mind finding time on an empty stomach away from antibiotics to give him acidophiles. So I started giving him 3 Brewer's yeast pills each time he has his antibiotic. It's a probiotic that is really strong and not killed by antibiotics. He hasn't been nauseous in 6 months. I get the cheapo "Now" brand. "Saccharomyces boulardii (it's other name) has been shown in one small study of 124 patients to reduce the recurrence rate of pseudomembranous colitis." Also for what it's worth, and all kids are different, but my kids did awfully on Azith, Biaxin, Augmentin, but did amazing on Keflex and Omnicef. I had written to Dr. Swedo once and she responded that in her clinic they only use penicillan or cephalosporins (sp?)(Keflex and Omnicef and others) They found Augmentin way too tough on the tummies.

 

Just my 2 cents. Oh by the way, the liquid probiotics also worked great, here's the link http://www.smartbomb.com/natlf540.html They are also filled with amino acids. Shake the heck out of it before using.

 

Nancy

 

Hi,

 

I just wanted to clarify that Brewer's yeast and Saccharomyces boulardii are not the same thing. I have read that Brewer's yeast can make yeast infections worse- see under the precautions section in this link to U of Maryland Medical Center's article on brewer's yeast. http://www.umm.edu/altmed/articles/brewers-yeast-000288.htm

 

S. boulardii is a non-pathogenic yeast that is supposed crowd out candida, then die off itself. It is considered a probiotic.

 

I think the confusion lies in the fact that the two are related, but definately not the same. Hope this helps.

 

Susie

[kimballot]

OK, so I'm over the abx. My kids guts are so darn screwed up. My husband and I were talking tonight about how ds5 is worse when he has gut bacteria than when he has pandas. And lately, he ALWAYS has gut bacteria. And poor ds2 gets yeast so bad that he is a mess emotionally and he gets a yeast rash that spreads to all different parts of his body. They are on diflucan, they are on a trillion cfu's of probiotics a day, they are on vanco, we have done it all. I just think their guts are crashing!!!!! They keep coming back positive for clostridia and yeast.

 

So here is what I am thinking about doing. Talk me down or talk me up :-) :

 

When the current treatment dose of abx is done for the current strep in the house, stop the abx (one is on augmentin, one is on amox). Slowly DC the vanco, keep up the diflucan for a while and keep up with the probiotics indefinitely. Stop the weekly azith, b/c let's face it, ds2 just got strep on weekly azith.

 

Thoughts? Crazy? DH and I think we have nothing to lose. Last night we had to hold down our raging 5yo...and he doesn't have any sign of pandas.

 

Hi Stephanie - Crazy?? No -- definitely not crazy. You have been through the ringer and sometimes it does help to just toss things out and start over! I keep wondering, though, if there may be some infection that is smoldering somewhere, somehow. If you decide to chuck the antibiotics... I'd suggest getting bloodwork before and then a few weeks after to see if there is some underlying infection that the antibiotics are minimizing but not destroying. I've written before about my experience with my son being unable to come off antibiotics for 7 years until I finally said "no more" - and as soon as we held tight and stopped them, his tonsils turned completely white and we realized that he had been harboring bacteria in there for quite some time. Once the tonsils came out he did very well for a few years,(with lots of work on his gut yeast) and was off antibiotics.

 

I know how thorough you are and I am assuming that you have already looked into mycoplasma and lyme, and s. penuomoniae titers to look for underlying problems. I would check those and the strep titers before and after you stop the antibiotics (if that is what you decide to do).

 

Hang in there-- you will get to the bottom of this!

.

Edited September 15, 2010 by kimballot