Now It seems to be yeast! (Maybe IVIG did take care of the PANDAS

[pmoreno]

When Gaby had her IVIG with Dr. K the beginning of Oct, she was great for 2 weeks, but gradually she started having symptoms creeping in - she's not really bad - no tics returned, but spaciness, not able to concentrate well enough to function in school at her grade level, occasionally has a few outbursts (not often), talks to herself - is kind of goofy - no real fears at this point - sleep is slightly better - have thought all along that IVIG may not have helped her that much, but now after getting the results of the OAT test, I find out that she has a HUGE amount of yeast on board, since she started taking augmentin when she had the IVIG, did one week of zith recently, then back on augmentin. Hard to tell the difference between yeast behavior and PANDAS behavior. Her stools have looked pretty normal, but according to her profile - she has yeast. The nutritional expert at the lab recommends HIGH doses of probiotics. I have been giving her stuff from Whole Foods -usually about 2-3 billion CFU's, but she said that's nothing for a child with yeast - that amount is OK for a healthy child - needs to start out with 20 billion CFU's of a multi-strain probiotic which also contains 2 billion CFU's of bullaris (am sure I didn't spell that right - but I'm tired). anyway you can't get that in the health food stores - have to order it on line - will do that tomorrow from something called "New Beginnings Nutritionals". We'll see if I can nip this in the bud and if that doesn't change her behavior - maybe the IVIG did help after all (for the PANDAS behavior) and now I'm just seeing yeast behavior from the abx. Has anyone here ever used such high doses of probiotics? Makes me a little nervous, but I was told it's OK. Also am thinking about using the nystatin along with probiotics - don't know if it's necessary to do both - don't they do the same thing? Pat

[peglem]

They don't really do the same thing. Nystantin kills the yeast but does not repopulate the gut with "gut buddies." Probiotics supply the gut with bacteria that are supposed to be beneficial for intestinal health. (some may kill yeast as well) The problem with maintaining balanced gut flora is that nobody is terribly sure how much of which organisms constitutes a healthy balance. Think of the gut as an ecosystem. Not enough predators is just as bad as too many.

[pmoreno]

They don't really do the same thing. Nystantin kills the yeast but does not repopulate the gut with "gut buddies." Probiotics supply the gut with bacteria that are supposed to be beneficial for intestinal health. (some may kill yeast as well) The problem with maintaining balanced gut flora is that nobody is terribly sure how much of which organisms constitutes a healthy balance. Think of the gut as an ecosystem. Not enough predators is just as bad as too many.

 

 

You've hit the nail right on the head - nobody is sure how much of which organisms constitutes a healthy balance. This is a scary thing. The nutritionist I spoke with seems to feel that Gaby should take 30 billion CFU's of a wide strain probiotic. Most adults don't even take that much. But she assures me that these kids are not like everyone else - their guts need it. I hope she's right. I'm putting my daughter's health in her hands. I worry about that she may develop a need for more and more of the bacteria (particularly if I withdraw it at sometime - then will the bad bacteria get out of hand again?). Today I e-mailed my DAN to see if he could prescribe nystatin for her so that we could try that a few days before our telephone consult (scheduled for Tuesday). He e-mailed back that since her profile showed a high amount of yeast, as well as bacteria, he felt that we shouldn't treat one without the other. Not sure what he means by that, but I guess I'll have to wait and see.

[Scrapmaxx]

When Gaby had her IVIG with Dr. K the beginning of Oct, she was great for 2 weeks, but gradually she started having symptoms creeping in - she's not really bad - no tics returned, but spaciness, not able to concentrate well enough to function in school at her grade level, occasionally has a few outbursts (not often), talks to herself - is kind of goofy - no real fears at this point - sleep is slightly better - have thought all along that IVIG may not have helped her that much, but now after getting the results of the OAT test, I find out that she has a HUGE amount of yeast on board, since she started taking augmentin when she had the IVIG, did one week of zith recently, then back on augmentin. Hard to tell the difference between yeast behavior and PANDAS behavior. Her stools have looked pretty normal, but according to her profile - she has yeast. The nutritional expert at the lab recommends HIGH doses of probiotics. I have been giving her stuff from Whole Foods -usually about 2-3 billion CFU's, but she said that's nothing for a child with yeast - that amount is OK for a healthy child - needs to start out with 20 billion CFU's of a multi-strain probiotic which also contains 2 billion CFU's of bullaris (am sure I didn't spell that right - but I'm tired). anyway you can't get that in the health food stores - have to order it on line - will do that tomorrow from something called "New Beginnings Nutritionals". We'll see if I can nip this in the bud and if that doesn't change her behavior - maybe the IVIG did help after all (for the PANDAS behavior) and now I'm just seeing yeast behavior from the abx. Has anyone here ever used such high doses of probiotics? Makes me a little nervous, but I was told it's OK. Also am thinking about using the nystatin along with probiotics - don't know if it's necessary to do both - don't they do the same thing? Pat

 

We've been using high doses of Probiotics for over a year and a half due to our son being on Augmentin for 2 yrs. There have been no ill effects from the probiotics. In fact, we notice negative effects if don't keep him on them. The secret to probiotics and yeast is that you should change brands/strains every 30 days or so, so that the yeast does not have a chance to adapt. There are several high quality brands that we rotate with. Pharmax has a HLC strain that is very good (can get them up to 24 billion/pill), along with their strain that helps casein allergies called Mindlinx. Kirkman's sacromycese (sp?) is another one along with their Three-Lac. We have had good success with these. Occasionaly, when I have slacked off and his yeast blooms, we've had to resort to a 2 wk daily dose of Diflucan to get things back on track. I think taking the anti-fungal first (and probiotic simutaneously) and then following with probiotics 2x day has worked the best for us and other kids we know. There are studies out there showing that probiotics help keep the gut lining at a pH that bacteria and viruses have trouble colonizing at along with helping to heal leaky gut. They also help keep secretory IgA at more healthy levels. Hope this helps.

 

Scrapmaxx

[Pezmom]

We've been seeing yeast overgrowth as a result of the antibiotics as well. We do both Amphotericin B (a strong antifungal) and probiotics. The probiotics we use are from Kirkman labs in Oregon and are called Superprobio. They contain 15 Billion CFU's of different Lactobacillus and Bifidobacterium. I'm supposed to give our son 2 capsules of the probio two times per day as well as 2 teaspoons of the Ampho B twice per day. When coordinating all the other things he's on, I end-up missing one of the doses and think that's part of our problem. We've learned never to underestimate the difficulties yeast overgrowth can cause.

 

Jena

[lss]

When Gaby had her IVIG with Dr. K the beginning of Oct, she was great for 2 weeks, but gradually she started having symptoms creeping in - she's not really bad - no tics returned, but spaciness, not able to concentrate well enough to function in school at her grade level, occasionally has a few outbursts (not often), talks to herself - is kind of goofy - no real fears at this point - sleep is slightly better - have thought all along that IVIG may not have helped her that much, but now after getting the results of the OAT test, I find out that she has a HUGE amount of yeast on board, since she started taking augmentin when she had the IVIG, did one week of zith recently, then back on augmentin. Hard to tell the difference between yeast behavior and PANDAS behavior. Her stools have looked pretty normal, but according to her profile - she has yeast. The nutritional expert at the lab recommends HIGH doses of probiotics. I have been giving her stuff from Whole Foods -usually about 2-3 billion CFU's, but she said that's nothing for a child with yeast - that amount is OK for a healthy child - needs to start out with 20 billion CFU's of a multi-strain probiotic which also contains 2 billion CFU's of bullaris (am sure I didn't spell that right - but I'm tired). anyway you can't get that in the health food stores - have to order it on line - will do that tomorrow from something called "New Beginnings Nutritionals". We'll see if I can nip this in the bud and if that doesn't change her behavior - maybe the IVIG did help after all (for the PANDAS behavior) and now I'm just seeing yeast behavior from the abx. Has anyone here ever used such high doses of probiotics? Makes me a little nervous, but I was told it's OK. Also am thinking about using the nystatin along with probiotics - don't know if it's necessary to do both - don't they do the same thing? Pat

 

We've been using high doses of Probiotics for over a year and a half due to our son being on Augmentin for 2 yrs. There have been no ill effects from the probiotics. In fact, we notice negative effects if don't keep him on them. The secret to probiotics and yeast is that you should change brands/strains every 30 days or so, so that the yeast does not have a chance to adapt. There are several high quality brands that we rotate with. Pharmax has a HLC strain that is very good (can get them up to 24 billion/pill), along with their strain that helps casein allergies called Mindlinx. Kirkman's sacromycese (sp?) is another one along with their Three-Lac. We have had good success with these. Occasionaly, when I have slacked off and his yeast blooms, we've had to resort to a 2 wk daily dose of Diflucan to get things back on track. I think taking the anti-fungal first (and probiotic simutaneously) and then following with probiotics 2x day has worked the best for us and other kids we know. There are studies out there showing that probiotics help keep the gut lining at a pH that bacteria and viruses have trouble colonizing at along with helping to heal leaky gut. They also help keep secretory IgA at more healthy levels. Hope this helps.

 

Scrapmaxx

 

 

Scrapmaxx,

 

You mentioned casein allergies (Mindlinx), does your child have food allergies, or celiac? If so, can your child eat the foods with this supplement?

 

Linda

[Indigo]

My dd takes fluconazole with the antibiotics-ten days on and ten days off of the fluconazole.