Future for PANDAS treatment

[smartyjones]

[Okay, thanks. But still, isn't there a "tipping point," an "ideal" gut flora population, if you will, for each individual? Why does it follow, necessarily, that pumping more and more flora into a person always results in "better" health? How can one gut possibly harbor and/or synthesize all this additionally introduced flora, rather than send some of it, at least, to waste? I can certainly understand that, while on antibiotics or consistently ingesting a diet that is detrimental to gut flora balance, one would want to supplement, maybe even aggressively. But flora supplementation at massive levels? How is that more beneficial than the "right" level?

 

 

oh mom -- you are so wise. i think balance in an individual is the key.

 

i don't claim to be able to know the reasons but feel i need to share our recent story with ds9. last fall/winter, he began with pandas symptoms. as it intensified, we took him to ds6's dr in late dec. diagnosed strep, TBI, a few other viruses. he quickly showed good improvement on homeopathic protocol. early feb, i started high dose probiotic (25 billion, 6 strains). about 2 - 3 weeks later, he began with strong inattentiveness, poor cooperation, brain fog -- TBI symptoms but not his inital presenting symptoms. a few weeks later, went to dr early (not scheduled appt) due to these symtpoms. through a type of ART testing, dr thought ds looked quite good with infections. continued on, thinking this was morphing of symptoms.

 

THANKFULLY, pandas16 posted a previous post asking similar questions. i never dreamed the probiotic could be a/the contributor to the problem. i don't know if it's due to TH1 or TH2 interactions,etc (b/c it's so very over my head) . however, i asked the probiotic co their opinion. they suggested i switch him to d-lactate free strains. i began researching d-lactate issues due to probiotics and it's generally extreme and reserved for those with bowel resection; however, it's discussed in the autism community and the lesser symptoms (not severe d-lactate acidosis requiring hospitalization) described ds's troubles to a T!

 

i took him off it. at 10 days, no improvement. i thought i'd add s.boulardii b/c is different in the gut and thought it would help. day 12 was his best day since starting the probiotic 5-6 weeks earlier. a few days later, he tanked again. took him off s.boulardii. is now about 14 days off and he is much better. still seeing some inappropriate upsets but his focus is 1000s times better.

 

ds is not taking abx, is taking homeopathic remedies aimed at healing infections and detox. i think i overloaded him with too much good stuff.

 

was his issue with d-lactate? did the probiotics induce an inappropriate cytokine reaction/interaction? i don't know. i do feel quite confident the troubles are the result of the "help" i was attemtping to give his gut. he'd taken a similar formula, though not those combo strains and at 8 billion in the past and been fine.

 

there seems to be a bit of info about probiotic strains in the chronic fatigue world. i read a quote that people with chronic fatigue should be careful and not take probiotics "willy nilly". i'd have to say now, i'd put our family in that camp. i think i now think probiotics may be a bit stronger than i had been thinking -- and maybe not always for good in all people. but, in line with pandas16's initial post, perhaps strong enough to provide a key!

 

unfortunately, i'll never know if i'm right b/c i'm not going to 'complete' this research experiment and put him on it to see if he has the same reaction again!!

[Chemar]

we have checked enough times to be certain that we see a negative reaction now when my son has probiotic supplements

 

I absolutely agree that this is something that is highly individualized and likely the reaction, + or - and everything in between, is probably due to the unique makeup each person has, coupled with the effect of the illness they are dealing with, and how their own body responds to it.

 

One thing my son has definitely learned from the combination of his TS, OCD and Crohn's is that his GIT and his neurology are acutely sensitive to one another! so I do agree that the gut/brain interaction is a very important factor!

[Ozimum]

Quote "I absolutely agree that this is something that is highly individualized and likely the reaction, + or - and everything in between, is probably due to the unique makeup each person has, coupled with the effect of the illness they are dealing with, and how their own body responds to it."

 

I agree that it's likely to be different for every individual. I am relying heavily on the testing my son's Biomed doctor is doing. The blurb that came with the results of my son's stool screen gives me to understand that overgrowths as well as undergrowths of 'good' bacteria may be problematic, along with overgrowths of 'bad' bacteria, both aerobic and anaerobic.

 

It also seems to me that the probiotic bacteria (anaeobic) are only one side of the coin... in my son's case he had virtually no E.coli (aerobic) in his gut, where it should be in abundance and consequently other opportunistic bacteria (strep and staph) were in overgrowth. What do you think that does to the function of the gut and hence the immune sytem and the production of neurotransmitters, etc etc?! We've been addressing this over the last seversal months and DS is doing really well thus far, so I can't help thinking it's an important piece in the puzzle.

 

We carry around a couple of kilos of gut bacteria...most of which researchers know nothing about... Sounds like it might just be the new frontier in medical research.

[Chemar]

this is not PANDAS related, but I just wanted to mention that for some people with IBD like my son, who has Crohn's Disease, probiotic supplements per se seem to make things worse!

He used to tolerate organic plain kefir and yoghurt, but since he went dairy free, is no longer using those. he has actually found a lot more benefit from prebiotic foods, teas etc along with the anti-inflamm diet and supps

 

we have heard from some other people with Crohn's and other IBDs that they also find some probiotics seem to cause flare ups

 

This describes my experience perfectly! I have Crohn's and have tried many different probiotics while searching for the "right one" since emerging research indicates that they show promise for IBD. So far, they've all made me miserable and I've been forced to discontinue. Still searching for that "magic formula"....

 

Try researching PREBIOTICS and see if they may be helpful to you

 

my son is finding much benefit using foods, teas and supplements known to specifically feed the good gut microbes.

 

Do use caution tho with the "fad" of prebiotic supplements, like "pure Inulin" as there again you may deal with an "overload" -ve reaction.

 

Rather use the prebiotics in their most natural forms

[mkur]

After reading the following article: http://www.nytimes.c...21gut.html?_r=1

 

I googled around looking for the 3rd type of gut enterotype 3 (and which vitamins?) and found these articles:

 

http://www.nytimes.com/2010/07/13/science/13micro.html

 

http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

Edited May 8, 2011 by mkur

[mkur]

what does one do about the gas?

 

I have a sensitive stomach and so do some of my friends. We switched egg products - using Eggland's eggs makes a big difference. I only use cheap eggs for baking. (I wish Eggland's would redo their packaging to something I can recycle and would switch products because of it.

 

Found this article a couple of years back: http://www.nytimes.com/2009/06/05/us/05cows.html - (made my day )

[Guest pandas16]

Crohn's is an auto-immune illness

 

he is also PITANDS

 

 

I know that Crohns is autoimmune, but is your child immunodeficient? Did you try VSL3 for crohns? I know that's not recommended for immunodeficient individuals.

[Chemar]

Crohn's is an auto-immune illness

 

he is also PITANDS

 

 

I know that Crohns is autoimmune, but is your child immunodeficient? Did you try VSL3 for crohns? I know that's not recommended for immunodeficient individuals.

 

No, my son is not immunodeficient...he has been diagnosed with a hyperactive immune system, which is common in most autoimmune conditions, and so he has to avoid anything that "boosts" the immune system

 

he is doing very well on prebiotics

[Guest pandas16]

Crohn's is an auto-immune illness

 

he is also PITANDS

 

 

I know that Crohns is autoimmune, but is your child immunodeficient? Did you try VSL3 for crohns? I know that's not recommended for immunodeficient individuals.

 

No, my son is not immunodeficient...he has been diagnosed with a hyperactive immune system, which is common in most autoimmune conditions, and so he has to avoid anything that "boosts" the immune system

 

he is doing very well on prebiotics

 

I'm not. I'm similar to your son, however there are a lot of kids with PANDAS who are immunodeficient.

Edited May 8, 2011 by pandas16

[Chemar]

Crohn's is an auto-immune illness

 

he is also PITANDS

 

 

I know that Crohns is autoimmune, but is your child immunodeficient? Did you try VSL3 for crohns? I know that's not recommended for immunodeficient individuals.

 

No, my son is not immunodeficient...he has been diagnosed with a hyperactive immune system, which is common in most autoimmune conditions, and so he has to avoid anything that "boosts" the immune system

 

he is doing very well on prebiotics

 

I'm not. I'm similar to your son, however there are a lot of kids with PANDAS who are immunodeficient.

 

Just an FYI that my son does not have PANDAS

He has TS/OCD with a PITAND component , as well as the Crohn's

 

re the VSL3...it is not something he would be willing to try as it is derived from dairy and he is totally dairy free. If we were going to use something dairy again, we would return to good old kefir (which worked well for him in the past) rather than something quite as pricey as the VSL3! I see the VSL3 has been researched for Ulcerative Colitis and Irritable Bowel Syndrome, but many Crohn's patients (including my son) have found out the hard way that what works for those illnesses are not necessarily good for Crohn's.

[Ozimum]

Mkur...Thanks for the links.

 

Did you find the 3rd enterotype? The NY Times article says Enterotype 1 produces more enzymes for making Vit B7 (Biotin) and Enterotype 2 more enzymes for Vit B1 (thiamin)

 

The following comes from the original Nature article:

 

"Four enzymes in the biotin biosynthesis pathway (COG0132, COG0156, COG0161, and COG0502) are overrepresented in enterotype 1...Four enzymes in the thiamine biosynthesis pathway (COG0422,COG0351, COG0352 and COG0611) are overrepresented in enterotype 2...Six enzymes in the haem biosynthesis pathway COG00007, COG0276, COG0407, COG0408, COG0716 and COG01648) are overrepresented in enterotype 3."

 

Anyone able to translate that? iron?

Edited May 8, 2011 by Ozimum

[Chemar]

DGL Liquorice is excellent for healing irritated GIT mucosa and actually heals the ulceration too. It is one of my son's "lifesaver" supps. (be sure to use DGL tho as the regular liquorice root does not have the healing properties and can raise blood pressure. For best effects it needs to be the chewable kind as saliva "activates" it

 

VSL3 do not give the ingredients in their probiotic...at least not that I could find on their site

[Guest pandas16]

VSL3 has been shown to help with dairy intolerance despite that it's derived from dairy if you look on the website. Yes it uses strep therm, but there is absolutely no science anywhere on strep therm aggravating PANDAS other than what parents have experienced here. I think it depends which cytokines the probiotic mixture induce and whether or not they work through TLR but that's just an opinion. If the mixture as a whole induces th1- then the problem is an overall th1/proinflammatory response in the body, not the specific strain ( I assume?)

Edited May 9, 2011 by pandas16

[Chemar]

Honestly, one thing i have sure learned in the 10+ years of trying to help my son is that when parents notice reactions, then it is worth taking note! Just because there is no scientific evidence *yet* that strep therm may be problematic for some PANDAS patients, that does not mean it is not. Often it is the observations of patients and their loved ones that leads to further research and clarification.

 

re the VSL3 and dairy...although the makers claim it is helpful for those with dairy intolerance, yet they also cover their bases by urging those who do have problems with dairy to "go slow" when starting VSL3 ....in case of a reaction. So they recognize the potential for a -ve response.

[tpotter]

I think it's certainly a very real possibility to we should be targeting the gut. We see a holistic chiropractor (he's absolutely amazing...uses applied kinesiology, but truly knows his science, and just "gets it." ) He's really targeting the gut in all of us.

 

Personally, though, I don't think it's any one thing. We have found that what worked best for us was PEX, but IVIG has also helped. Personally, if we could get PEX followed by IVIG + fixing the gut + if necessary IV abx (which worked better for my younger son when he was hospitalized...got rid of 100% of the symptoms...they all came back, though), I think that would really help.