Inositol

[MomWithOCDSon]

I've seen a number of posts here referring a supplement called Inositol, which is supposed to assist in creating/maintaining a healthy immune system. I suppose the idea is that if we help our PANDAS kids develop better/stronger immune systems against the agents that exacerbate the PANDAS, then they'll have a better chance of fending off the "bad" stuff without abx, IVIG or PEX interventions?

 

So, I went out and bought some inositol, with every intention of beginning to dose my son with it. That is, until my husband pointed out something I'd failed to consider up til that point.

 

It seems, at least what my decidedly non-scientific brain can gather from all the posts and various research documents posted by Buster and others, that at lease SOME of what PANDAS may be attributable to is an increase in certain antigens/antibodies which, rather than attacking the actually offending bacteria such as strep, wind up attacking the basal ganglia tissue instead. So, in this case, the immune system is "misinformed," if you will and harming itself rather than helping itself.

 

So, if a PANDAS person ingests some "immune helper" like inositol, how do we know that this supplement boosts only the GOOD, non-offending components of the immune system and not, equally, those confused antibodies currently attacking tissue we want them to leave alone?!

[nevergiveup]

I think the word is immune modulation. Thats what you want to do. Get rid of the part that is not acting right. I know that doesn't answer your question but I do know ivig helps ocd, not always movement disorders but definately ocd. My dd will tell you it has changed her life. I have heard inositol does help ocd and so does choline. I give my dd a b-complex daily with these included.

 

 

 

I've seen a number of posts here referring a supplement called Inositol, which is supposed to assist in creating/maintaining a healthy immune system. I suppose the idea is that if we help our PANDAS kids develop better/stronger immune systems against the agents that exacerbate the PANDAS, then they'll have a better chance of fending off the "bad" stuff without abx, IVIG or PEX interventions?

 

So, I went out and bought some inositol, with every intention of beginning to dose my son with it. That is, until my husband pointed out something I'd failed to consider up til that point.

 

It seems, at least what my decidedly non-scientific brain can gather from all the posts and various research documents posted by Buster and others, that at lease SOME of what PANDAS may be attributable to is an increase in certain antigens/antibodies which, rather than attacking the actually offending bacteria such as strep, wind up attacking the basal ganglia tissue instead. So, in this case, the immune system is "misinformed," if you will and harming itself rather than helping itself.

 

So, if a PANDAS person ingests some "immune helper" like inositol, how do we know that this supplement boosts only the GOOD, non-offending components of the immune system and not, equally, those confused antibodies currently attacking tissue we want them to leave alone?!

[MomWithOCDSon]

Geez! As of right now, more than 50 "views" of this topic and no responses!

 

I was hoping for some "ammunition" for my scientifically-minded, cynical-but-willing-to-try-for-our-son's-sake husband! Plus, at the root of this is a decision we need to make, whether or not to add this supplement to our son's regimen.

 

Any ideas or thoughts some of you more experienced parents/scientists/doctors might have will be very much appreciated!

 

Thanks!

[thereishope]

inositol is one of the other supplements stated to help OCD on the old OCD Foundation website! I don't have the quote but it was Omega 3's, valerian root, inositol, and one more that eludes me at the moment.

 

I have never looked up inositol+autoimmune diorders . I know what you mean about almost being nervous to help the immune system. I mean...is one making those bad strep antibodies stronger for attack?

 

I once posted about echinacea (sp) for immune support and learned that isn't good for our kids.

 

I also like DHA for PANDAS. It makes total sense to me. It helps brain developement. I think that is very helpful for the brain as it heals from any damage done and would help the child "retrain" their thoughts if OCD really embedded in them.

[LNN]

I've never seen anything that suggested Inositol helped the immune system, but I have several research articles that say inositol acts like a natural SSRI. It has been successfully used for ocd, depression and anxiety in place of SSRIs. It was once classified as vitamin B8 but was de-classified once it was determined that the body synthesizes a small amount of it on its own.

 

Inositol is a water-soluble supplement, so there's less risk of building up a toxicity if you give more than the body needs. You mostly just pee away your money. If you decide to use it, you have to titer up slowly over 5-6 weeks, just as you would an SSRI. If you build up too quickly, you will get gas and/or diarrhea. As with all unregulated supplements, you have to be careful with your source.

 

Here are some useful articles:

 

a. http://en.wikipedia.org/wiki/Inositol

b. http://www.nutritionj.com/content/7/1/2

c. http://www.naturaladd.com/resources/articles/natural.html

d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html

e. http://findarticles.com/p/articles/mi_m0IS...55/ai_n6211958/

 

 

We used it successfully all of last fall/winter. We stopped during the summer because my son's Pandas symptoms had remitted so much. We are now using ERP to fight the OCD that comes with a flair up because I strongly believe that helping my son learn to manage his OCD thoughts is an important life skill, given that it can take weeks for meds to help an episode. If his mind is trained to manage the thoughts. he can help nip things in the bud. But for the times we were dealing with a lot, the inositol helped.

 

If you have anything that talks about inositol and the immune system, please post. I'd be very interested in reading it.

[smartyjones]

i don't know about inositol so thank you for posting b/c i'll check it out now.

 

as far as your question, i now stay away from herbal products for that reason - i don't feel i can trust what they will do for his immune system. i do still, however, use vitamin and homeopathic remedies. i'm not sure i can adequately explain but i feel the supplements and homeopathy will either help or do nothing or i'll be able to stop them if i see something adverse but i don't have that confidence in the herbal items. he takes probiotics, kids calm, DHA, vitamin d, a couple homeopathic remedies and homeopathy when sick.

 

a friend of mine who works in a nutritional dept of a large market said she'd be very leery of recommending anything that revvs up the immune system for that reason - she normally goes for what would enhance the immune system if someone is not well. however, with anything autoimmune it makes her very nervous.

 

please post if you get any info from a dr.

[MomWithOCDSon]

I've never seen anything that suggested Inositol helped the immune system, but I have several research articles that say inositol acts like a natural SSRI. It has been successfully used for ocd, depression and anxiety in place of SSRIs. It was once classified as vitamin B8 but was de-classified once it was determined that the body synthesizes a small amount of it on its own.

 

Inositol is a water-soluble supplement, so there's less risk of building up a toxicity if you give more than the body needs. You mostly just pee away your money. If you decide to use it, you have to titer up slowly over 5-6 weeks, just as you would an SSRI. If you build up too quickly, you will get gas and/or diarrhea. As with all unregulated supplements, you have to be careful with your source.

 

Here are some useful articles:

 

a. http://en.wikipedia.org/wiki/Inositol

b. http://www.nutritionj.com/content/7/1/2

c. http://www.naturaladd.com/resources/articles/natural.html

d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html

e. http://findarticles.com/p/articles/mi_m0IS...55/ai_n6211958/

 

 

We used it successfully all of last fall/winter. We stopped during the summer because my son's Pandas symptoms had remitted so much. We are now using ERP to fight the OCD that comes with a flair up because I strongly believe that helping my son learn to manage his OCD thoughts is an important life skill, given that it can take weeks for meds to help an episode. If his mind is trained to manage the thoughts. he can help nip things in the bud. But for the times we were dealing with a lot, the inositol helped.

 

If you have anything that talks about inositol and the immune system, please post. I'd be very interested in reading it.

 

This is AWESOME information; thank you so much!

 

Yes, I did read an article on the web referring to inositol's "ammune enhancing" qualities; I will try to find that again and post it for you and others. Additionally, the labeling on the bottle of inositol I purchased at the Vitamin Shoppe boasts "Deep Immune Health," "Boosts natural killer-cell activity," and "Boosts the body's natural defenses." So, between the web, the labeling and some posts here, that's what I thought the supplement was for.

 

I know what you mean about sources; definitely something to keep an eye on, I know. But there's such a plethora of stuff out there, and I'm no scientist or medical professional, so it's hard to know what to trust! That's why I reached out here, because I figured someone would have some answers . . . hopefully both clinical and experiential!

 

Thanks again!

[coco]

Interesting discussion about inisitol. When my dd's allergist first even mentioned Pandas early last spring, the neurologist he's in partnership with recommended inisitol right off the bat. He said it was very effective in healing the immune system and told us a story about a cancer patient who was given a short time to live, but was given inisitol (IP-6) and it lengthened her life by almost 5 years...at least that's the story. My uncle who has bone cancer is also taking it as it was recommended by the Mayo for it's immune boosting properties. So in both those cases the docs obviously thought it was helping the good cells vs. bad cells. It is a bit confusing, though. I think I might start giving it to my dd again...we got away from it after we got onto abx and ivig later this summer.

 

coco

[Worried_Dad]

Don't know about immune modulation, but a while back I came across several articles indicating that inositol appeared to operate like a "natural" SSRI. Per several studies, it was as effective (in very high doses) as SSRI meds for reducing OCD symptoms.

 

We tried it for our PANDAS son for a few months. Even in the recommended mega-doses, we did not see any improvement, so we abandoned it.

 

I believe others on this forum have had better luck with it. Maybe it's more effective when the child is not in the midst of a major exacerbation?

[Fixit]

So MOM....just to get your final take, based on this info, do you think you'll be adding this to your regime??

[MomWithOCDSon]

So MOM....just to get your final take, based on this info, do you think you'll be adding this to your regime??

 

Good question. For the moment my answer is, "No, not yet."

 

Our son is still on an actual SSRI, Luvox, basically a pharmaceutical "hangover" from those days before we turned to PANDAS and thought what we were dealing with was just pure OCD. So if there's any chance that inositol actually behaves in the brain like a synthetic SSRI, I don't want to combine the two and risk Serotonin Syndrome.

 

I've been thinking about tapering down on the synthetic SSRI anyway, though, as 1) though it doesn't seem to be harming him, I'm not convinced it's actually helping either, and 2) the Murphy study and so many of the experiential responses here on this board tend to suggest the SSRI's might actually be contributing to some of his trouble, whether we know it or not.

[faith]

I might be able to add that I have a nice jar of it in my cubboard. we tried it about 2 years ago, and I felt my sons tics increased. perhaps the reasons stated above are why? it seems there have been a few things I;ve tried in the past in the way of supplements have seemed to have an adverse effect (tic increase) so wondering if those things would be in the immune boosting category?..........(and deez are der names).......fish oil, NAC, tryptophan, taurine, flax oil, high b vits, ......... could be wierd coincidence that they didn't seem to help, but I've been on the natural route for years before this and so have looked at alot of things. now I'm wondering if this is the reason why they weren't helping much, maybe boosting immune system for my guy really 'isn't' a good thing? (and when you deal with tics and you note increase, you abandon ship quickly!)

 

altho, I'd also like to put out there that possibly, things that are good for one issue, such as ocd and adhd, may just have an adverse on the tics (before this, I was more concerned with the tics and always looked at that aspect as the gauger). maybe something there with increasing dopamine, which isn't good for tics. don't really know.

 

Faith

[thereishope]

If you give your child a multi vitamin-specifically one that is a designated child's mulitivitamin, it probably has a small amount of inositol in it already. Probably not the amount needed to see a big difference, but it may be in there.

 

My son's has it. Read the back of the labels.

[MomWithOCDSon]

If you give your child a multi vitamin-specifically one that is a designated child's mulitivitamin, it probably has a small amount of inositol in it already. Probably not the amount needed to see a big difference, but it may be in there.

 

My son's has it. Read the back of the labels.

 

Good idea, will do.

 

Lately, though, we haven't been especially regular with the multivitamin for him. His tummy has been giving him a lot of trouble on this latest course of abx, despite all the probiotics, etc., so I've been trying to trim back a bit and see if that helps him along at all.

[Sharon K]

I've seen a number of posts here referring a supplement called Inositol, which is supposed to assist in creating/maintaining a healthy immune system. I suppose the idea is that if we help our PANDAS kids develop better/stronger immune systems against the agents that exacerbate the PANDAS, then they'll have a better chance of fending off the "bad" stuff without abx, IVIG or PEX interventions?

 

So, I went out and bought some inositol, with every intention of beginning to dose my son with it. That is, until my husband pointed out something I'd failed to consider up til that point.

 

It seems, at least what my decidedly non-scientific brain can gather from all the posts and various research documents posted by Buster and others, that at lease SOME of what PANDAS may be attributable to is an increase in certain antigens/antibodies which, rather than attacking the actually offending bacteria such as strep, wind up attacking the basal ganglia tissue instead. So, in this case, the immune system is "misinformed," if you will and harming itself rather than helping itself.

 

So, if a PANDAS person ingests some "immune helper" like inositol, how do we know that this supplement boosts only the GOOD, non-offending components of the immune system and not, equally, those confused antibodies currently attacking tissue we want them to leave alone?!

 

Thanks you for the post.

Hi guys, Im a newbie. Nice to join this forum.