Does Inositol Work?

September 1, 2009

Hi all,

I joined the group about a week ago and have been reading all your comments

with great interest. My 11-year-old daughter was diagnosed with OCD about a

month ago. Thanks to your advice, yesterday we had her blood drawn to test

for strep/PANDAS. It was a nightmare because she was screaming and crying

the whole time. Then tonight she dropped a glass on the floor and managed

to get a very small glass splinter in her foot. Again, a major breakdown

with crying, screaming, panic, etc. as my husband and I tried to no avail to

get her to sit down so we could remove it with a tweezer. Two hours later,

I am crying too and an absolute basket case. Heaven help us should she ever

need serious medical help because she will need sedation for even the most

minor thing.

Anyhow, to cut this short, I have read that some of you are using inositol

with your kids. Can you give me more information? Does it really work?

What's the dosage (my daughter weighs 106 lbs.)? We are also using

melatonin to try to get her to go to sleep. Do you think there might be any

interactions?

Thanks for any help or links you can provide. I am resisting medication but

I am beginning to have my doubts about therapy. We have spent a month

working on coping skills and she seems to have none. She is not even

rational at this point, believing that if she blinks, chews gum, breathes,

or walks she will " curse " somebody and cause them to die. We have tried to

get her to challenge this belief but she seems to think it's quite

possible. As she is in a gifted and talented program at school and very

smart, it's hard to understand that she actually believes this.

So, we want to explore the inositol route to see if it might help her before

turning to medication.

September 2, 2009

Hi ,

Being smart has nothing to do with OCD. Trust me, my daughter is also in a

gifted and talented program at school, but when she is washing, it is not the

rational intelligent part of the brain that is involved.

>

> Subject: Does Inositol Work?

> To:

> Date: Wednesday, September 2, 2009, 12:19 AM

> Hi all,

>

> I joined the group about a week ago and have been reading

> all your comments

> with great interest. My 11-year-old daughter was

> diagnosed with OCD about a

> month ago. Thanks to your advice, yesterday we had

> her blood drawn to test

> for strep/PANDAS. It was a nightmare because she was

> screaming and crying

> the whole time. Then tonight she dropped a glass on

> the floor and managed

> to get a very small glass splinter in her foot.

> Again, a major breakdown

> with crying, screaming, panic, etc. as my husband and I

> tried to no avail to

> get her to sit down so we could remove it with a

> tweezer. Two hours later,

> I am crying too and an absolute basket case. Heaven

> help us should she ever

> need serious medical help because she will need sedation

> for even the most

> minor thing.

>

> Anyhow, to cut this short, I have read that some of you are

> using inositol

> with your kids. Can you give me more

> information? Does it really work?

> What's the dosage (my daughter weighs 106 lbs.)? We

> are also using

> melatonin to try to get her to go to sleep. Do you

> think there might be any

> interactions?

>

> Thanks for any help or links you can provide. I am

> resisting medication but

> I am beginning to have my doubts about therapy. We

> have spent a month

> working on coping skills and she seems to have none.

> She is not even

> rational at this point, believing that if she blinks, chews

> gum, breathes,

> or walks she will " curse " somebody and cause them to

> die. We have tried to

> get her to challenge this belief but she seems to think

> it's quite

> possible. As she is in a gifted and talented program

> at school and very

> smart, it's hard to understand that she actually believes

> this.

>

> So, we want to explore the inositol route to see if it

> might help her before

> turning to medication.

>

September 2, 2009

Hi ,

My family is battling the drug controversy too. Sorry to say I don't

have an answer for you. I do have a question though. I am curious about

the PANDAS bloodtest. What were the results? And especially, how long

ago did she have the strep infection? Did you know your daughter had

strep before the OCD occurred? My daughter was diagnosed last December.

Is it too late to have a bloodtest? Will it prove anything, if we find

out it is PANDAS? Will her treatment be any different?

Hope you don't mind all the questions. My husband and I are feeling

desperate (as you may notice - this is my second posting today). Best to

you. Tamar Chansky's book is very helpful, Freeing Your Child from OCD.

>

> Hi all,

>

> I joined the group about a week ago and have been reading all your

comments

> with great interest. My 11-year-old daughter was diagnosed with OCD

about a

> month ago. Thanks to your advice, yesterday we had her blood drawn to

test

> for strep/PANDAS. It was a nightmare because she was screaming and

crying

> the whole time. Then tonight she dropped a glass on the floor and

managed

> to get a very small glass splinter in her foot. Again, a major

breakdown

> with crying, screaming, panic, etc. as my husband and I tried to no

avail to

> get her to sit down so we could remove it with a tweezer. Two hours

later,

> I am crying too and an absolute basket case. Heaven help us should she

ever

> need serious medical help because she will need sedation for even the

most

> minor thing.

>

> Anyhow, to cut this short, I have read that some of you are using

inositol

> with your kids. Can you give me more information? Does it really work?

> What's the dosage (my daughter weighs 106 lbs.)? We are also using

> melatonin to try to get her to go to sleep. Do you think there might

be any

> interactions?

>

> Thanks for any help or links you can provide. I am resisting

medication but

> I am beginning to have my doubts about therapy. We have spent a month

> working on coping skills and she seems to have none. She is not even

> rational at this point, believing that if she blinks, chews gum,

breathes,

> or walks she will " curse " somebody and cause them to die. We have

tried to

> get her to challenge this belief but she seems to think it's quite

> possible. As she is in a gifted and talented program at school and

very

> smart, it's hard to understand that she actually believes this.

>

> So, we want to explore the inositol route to see if it might help her

before

> turning to medication.

>

September 2, 2009

Hi ,

We did the test on Monday so I expect the results back today or tomorrow.

I'll let you know.

We don't even know if she had a strep infection. She had a sore throat, her

brother was on antibiotics, and then she came down with OCD overnight. From

what I've read, some of the other signs of PANDAS are nighttime difficulties

(which we have in spades), choreiform (involuntary) movements (which we also

have), and some other things we don't have.

My impression is that the strep is " hiding out " and that blood tests are

necessary to find out whether it's there. But PANDAS appears to be an

auto-immune disorder brought about by strep, so it's not as if you take an

antibiotic to get rid of the strep and the auto-immune disorder goes away.

Sometimes kids are put on prophylactic antibiotics to prevent further

infections, but that's controversial.

So, I'm really kind of in the dark and we'll see what happens when her

results come back. Maybe they will be negative and she just has run of the

mill OCD. I don't know.

All I do know is that I'm also a little bit desperate so I'm willing to look

into all possibilities. That's why I'm looking for somebody who has used

this inositol and can tell me more.

Good luck to you!

On Wed, Sep 2, 2009 at 8:05 AM, jemarcellino2000 <jemarcellino2000@...

> wrote:

>

> Hi ,

>

> My family is battling the drug controversy too. Sorry to say I don't

> have an answer for you. I do have a question though. I am curious about

> the PANDAS bloodtest. What were the results? And especially, how long

> ago did she have the strep infection? Did you know your daughter had

> strep before the OCD occurred? My daughter was diagnosed last December.

> Is it too late to have a bloodtest? Will it prove anything, if we find

> out it is PANDAS? Will her treatment be any different?

>

> Hope you don't mind all the questions. My husband and I are feeling

> desperate (as you may notice - this is my second posting today). Best to

> you. Tamar Chansky's book is very helpful, Freeing Your Child from OCD.

>

> >

> > Hi all,

> >

> > I joined the group about a week ago and have been reading all your

> comments

> > with great interest. My 11-year-old daughter was diagnosed with OCD

> about a

> > month ago. Thanks to your advice, yesterday we had her blood drawn to

> test

> > for strep/PANDAS. It was a nightmare because she was screaming and

> crying

> > the whole time. Then tonight she dropped a glass on the floor and

> managed

> > to get a very small glass splinter in her foot. Again, a major

> breakdown

> > with crying, screaming, panic, etc. as my husband and I tried to no

> avail to

> > get her to sit down so we could remove it with a tweezer. Two hours

> later,

> > I am crying too and an absolute basket case. Heaven help us should she

> ever

> > need serious medical help because she will need sedation for even the

> most

> > minor thing.

> >

> > Anyhow, to cut this short, I have read that some of you are using

> inositol

> > with your kids. Can you give me more information? Does it really work?

> > What's the dosage (my daughter weighs 106 lbs.)? We are also using

> > melatonin to try to get her to go to sleep. Do you think there might

> be any

> > interactions?

> >

> > Thanks for any help or links you can provide. I am resisting

> medication but

> > I am beginning to have my doubts about therapy. We have spent a month

> > working on coping skills and she seems to have none. She is not even

> > rational at this point, believing that if she blinks, chews gum,

> breathes,

> > or walks she will " curse " somebody and cause them to die. We have

> tried to

> > get her to challenge this belief but she seems to think it's quite

> > possible. As she is in a gifted and talented program at school and

> very

> > smart, it's hard to understand that she actually believes this.

> >

> > So, we want to explore the inositol route to see if it might help her

> before

> > turning to medication.

> >

September 2, 2009

I there ,

I am currently investigating Inositol for my 9yo daughter as well. I haven't

tried it yet, as I'm awaiting the shipment. Did you read the information under

FILES? There are a number of articles there that have published results for

tests/trials of Inositol on people w/OCD/Anxiety/ADHD. It appears that the most

results come to those w/OCD. One article in particular that I found helpful was

that entitled " Inositol and OCD " by Fred Penzel, PhD. It had some dosage

information as well.

From the articles and other research I've learned that Inositol can actually

help w/sleep as well. Currently I have been giving my daughter Melatonin for

sleep, but I plan on trying the Inositol w/o it initially. There are a few side

effect of the Inositol which are stomach upset/diarrhea/gas and those are worse

when the dosage is started initially too high... Inositol is a form of Vitamin

B, so that is good news.

Once I start my daughter on the Inositol I will post the results. My daughter

has " bad thought " OCD which is extremely scary and there is a lot of anxiety

from this. I'm hoping that the Inositol will help before I consider other

" medications. "

Best wishes to you and I'm glad you're here! This website/group is such a

blessing... You aren't alone!

Hugs, Jen

September 2, 2009

Post your story on http://www.latitudes.org/forums/index.php?showforum=17. You

will get great advice about PANDAS there. There are also 3 posts from 2-3 days

ago, that contain lots of details about PANDAS in them - just hit the older

button for a few times, and they will come up. Here are the numbers 80480,

80489 and 80499. The main clinical detail before you start testing, is sudden

onset (meaning a seriously huge spike in OCD or Tics or Anorexia. Unfortunately,

there is not a clear test for PANDAS yet - but if you do test positive on strep

titers or strep tests, that does help with the diagnosis. Given the time that

has elapsed, that seems unlikely in your case, but you can try. You can also

check for Thyroid disease. If you have a good Neurologist in your area, go there

first. They can check her hands for tremors too. The best thing is to find a

doctor that is experienced - not an easy task.

I wish I could advise you more on the med side of things, but just wanted to say

that you have my empathy & I hope that you will find answers that help your

child. Untimately that is all that matters and I admire you for your search.

Whatever the diagnosis, PANDAS or OCD, Exposure and Ritural Prevention therapy

(ERP) has saved our daughter - and is an important part of our plan for her

health. If you are having trouble finding an ERP therapist for your daughter's

age, please let us know where you live (generally) and perhaps someone here can

help.

All my best - in NC.

> >

> > Hi all,

> >

> > I joined the group about a week ago and have been reading all your

> comments

> > with great interest. My 11-year-old daughter was diagnosed with OCD

> about a

> > month ago. Thanks to your advice, yesterday we had her blood drawn to

> test

> > for strep/PANDAS. It was a nightmare because she was screaming and

> crying

> > the whole time. Then tonight she dropped a glass on the floor and

> managed

> > to get a very small glass splinter in her foot. Again, a major

> breakdown

> > with crying, screaming, panic, etc. as my husband and I tried to no

> avail to

> > get her to sit down so we could remove it with a tweezer. Two hours

> later,

> > I am crying too and an absolute basket case. Heaven help us should she

> ever

> > need serious medical help because she will need sedation for even the

> most

> > minor thing.

> >

> > Anyhow, to cut this short, I have read that some of you are using

> inositol

> > with your kids. Can you give me more information? Does it really work?

> > What's the dosage (my daughter weighs 106 lbs.)? We are also using

> > melatonin to try to get her to go to sleep. Do you think there might

> be any

> > interactions?

> >

> > Thanks for any help or links you can provide. I am resisting

> medication but

> > I am beginning to have my doubts about therapy. We have spent a month

> > working on coping skills and she seems to have none. She is not even

> > rational at this point, believing that if she blinks, chews gum,

> breathes,

> > or walks she will " curse " somebody and cause them to die. We have

> tried to

> > get her to challenge this belief but she seems to think it's quite

> > possible. As she is in a gifted and talented program at school and

> very

> > smart, it's hard to understand that she actually believes this.

> >

> > So, we want to explore the inositol route to see if it might help her

> before

> > turning to medication.

> >

September 2, 2009

Hi , we used inositol powder for 6th, 7th and 8th grades. It worked

well for my son, who had sudden onset of OCD at the start of 6th grade. He's 20

yrs old now. I did feel it was " pooping out " some towards the end of 8th,

although we had lowered his dose to just 1x a day then. I raised it back up

(OCD waxing) but didn't see as much improvement as we wanted or had in the past

(plus I did have some $$ issues at that time on buying it each month), and my

son was finally agreeable to trying an SSRI prescripton med (which insurance

would pay 100% for), so he began taking Celexa right at the start of 9th grade.

He was on that for 9th and 10th grades, we weaned him down and off Celexa the

last month of school for 10th grade (and OCD returned the following January or

so!) He had done great on Celexa also and wanted to try " no meds " for his OCD,

felt he could handle it. (alas, not the case)

Anyway, tried inositol powder again a couple times since, and at higher dosages

too, and no benefit at all!

So it's sort of a 50/50 chance it might work. Other parents have had their

children do well on it for their OCD and then some also didn't see any benefit.

But it's worth a try, I think, if you are really hesitant about prescription or

child is refusing prescription, etc. However, you need to trial it for weeks,

just as with a prescription medication. I think 's took about until the

3rd month to really tell if he was getting benefit from the inositol powder,

however some parents see improvement earlier.

As to dosage -- it really will vary too, some kids see benefit from maybe 6

grams or so. We initially had in 6th grade on around 13-14 grams a day

and he needed that at OCD's worst (and more on some days). Much later (like

maybe 7th grade?) we ended up backing down to just 1x a day so that was around

4grams/day and he maintained well on that dosage.

Just some quick thoughts/comments on our experience.

>

> Hi all,

>

> I joined the group about a week ago and have been reading all your comments

> with great interest. My 11-year-old daughter was diagnosed with OCD about a

> month ago. Thanks to your advice, yesterday we had her blood drawn to test

> for strep/PANDAS. It was a nightmare because she was screaming and crying

> the whole time. Then tonight she dropped a glass on the floor and managed

September 2, 2009

Welcome, . Boy the meltdown you described sounds just like our son when

he was young. He would get this look in his eyes, of sheer terror, for

something as simple as a blood test. Sometimes, if he felt cornered, he would

fight for his life, kicking and hitting. He over reacted to every little cut or

scrape, as if he were dying. I often worried what would happen if he needed

serious medical care too.

Funny enough, a few years back, in the midst of the worst OCD flare up he'd ever

had, he needed an emergency appendectomy. I was freaking out (inside), while

trying to remain calm (outside), worrying about his reaction to it all. He took

it all in stride, which stunned me. When I asked him about it, he said he

figured he was going to die if he didn't have it done, so he just went with it.

Wow! That's OCD for you. . . When you brace for the worst, it doesn't come, yet

something small can set off a storm. Since then he's been through 2 surgeries

(wisdom teeth) and took it in stride too. I think part of it was just maturity

on his part too, so I wanted to encourage you that they can outgrow that

crippling fear.

As for the inositol, we tried it with no good results, unfortunately. And for

our son it gave him gas and horrible diarrhea. But, it has worked for some, and

is worth a try. Let us know how it goes if you try it.

BJ

>

> Hi all,

>

> I joined the group about a week ago and have been reading all your comments

> with great interest. My 11-year-old daughter was diagnosed with OCD about a

> month ago. Thanks to your advice, yesterday we had her blood drawn to test

> for strep/PANDAS. It was a nightmare because she was screaming and crying

> the whole time. Then tonight she dropped a glass on the floor and managed

> to get a very small glass splinter in her foot. Again, a major breakdown

> with crying, screaming, panic, etc. as my husband and I tried to no avail to

> get her to sit down so we could remove it with a tweezer. Two hours later,

> I am crying too and an absolute basket case. Heaven help us should she ever

> need serious medical help because she will need sedation for even the most

> minor thing.

>

> Anyhow, to cut this short, I have read that some of you are using inositol

> with your kids. Can you give me more information? Does it really work?

> What's the dosage (my daughter weighs 106 lbs.)? We are also using

> melatonin to try to get her to go to sleep. Do you think there might be any

> interactions?

>

> Thanks for any help or links you can provide. I am resisting medication but

> I am beginning to have my doubts about therapy. We have spent a month

> working on coping skills and she seems to have none. She is not even

> rational at this point, believing that if she blinks, chews gum, breathes,

> or walks she will " curse " somebody and cause them to die. We have tried to

> get her to challenge this belief but she seems to think it's quite

> possible. As she is in a gifted and talented program at school and very

> smart, it's hard to understand that she actually believes this.

>

> So, we want to explore the inositol route to see if it might help her before

> turning to medication.

>

September 2, 2009

We found that the inositol had the EXACT same effects and side effects as the

zoloft at ten times the cost and so switched back. I too was intensely worried

about starting my son on them. It was first rec at age 3 and we held off til

age 8 when he stopped eating due to contamination fears- not a lot of choice

there. H first tried prozac, got suicidal on it then switched to zoloft. His

OCD started to improve at around 100 mg but he was very impulsive- almost

sociopathic BUT it allowed him to engage wtih ERP. He is now down to 37.5 mg

zoloft (age 13) and just finished Dr Storch's vidotherapy SCYPE study out of USF

and is (essentially ) symptom free. Certainly the best he has EVER been. A good

therapist makes all the difference and if you cant find one in your area, I

encourage you to try the videophone study rather than do nothing. Good luck.

We are planning on stopping the meds if he is still good after the study period

observation is over.

September 2, 2009

Hi ,

We are using a therapist, whether she is good or not remains to be seen. So

far no improvements but I'll give it some more time.

I will definitely look into this videotherapy. It sounds as if it is very

effective.

Thanks for your advice.

On Wed, Sep 2, 2009 at 2:21 PM, Trabulsy, <mario.trabulsy@...

> wrote:

>

> We found that the inositol had the EXACT same effects and side effects as

> the zoloft at ten times the cost and so switched back. I too was intensely

> worried about starting my son on them. It was first rec at age 3 and we held

> off til age 8 when he stopped eating due to contamination fears- not a lot

> of choice there. H first tried prozac, got suicidal on it then switched to

> zoloft. His OCD started to improve at around 100 mg but he was very

> impulsive- almost sociopathic BUT it allowed him to engage wtih ERP. He is

> now down to 37.5 mg zoloft (age 13) and just finished Dr Storch's

> vidotherapy SCYPE study out of USF and is (essentially ) symptom free.

> Certainly the best he has EVER been. A good therapist makes all the

> difference and if you cant find one in your area, I encourage you to try the

> videophone study rather than do nothing. Good luck. We are planning on

> stopping the meds if he is still good after the study period observation is

> over.

>

September 2, 2009

The test came back negative, so I guess it's just run of the mill OCD--if

that even exists!

On Wed, Sep 2, 2009 at 8:05 AM, jemarcellino2000 <jemarcellino2000@...

> wrote:

>

> Hi ,

>

> My family is battling the drug controversy too. Sorry to say I don't

> have an answer for you. I do have a question though. I am curious about

> the PANDAS bloodtest. What were the results? And especially, how long

> ago did she have the strep infection? Did you know your daughter had

> strep before the OCD occurred? My daughter was diagnosed last December.

> Is it too late to have a bloodtest? Will it prove anything, if we find

> out it is PANDAS? Will her treatment be any different?

>

> Hope you don't mind all the questions. My husband and I are feeling

> desperate (as you may notice - this is my second posting today). Best to

> you. Tamar Chansky's book is very helpful, Freeing Your Child from OCD.

>

> >

> > Hi all,

> >

> > I joined the group about a week ago and have been reading all your

> comments

> > with great interest. My 11-year-old daughter was diagnosed with OCD

> about a

> > month ago. Thanks to your advice, yesterday we had her blood drawn to

> test

> > for strep/PANDAS. It was a nightmare because she was screaming and

> crying

> > the whole time. Then tonight she dropped a glass on the floor and

> managed

> > to get a very small glass splinter in her foot. Again, a major

> breakdown

> > with crying, screaming, panic, etc. as my husband and I tried to no

> avail to

> > get her to sit down so we could remove it with a tweezer. Two hours

> later,

> > I am crying too and an absolute basket case. Heaven help us should she

> ever

> > need serious medical help because she will need sedation for even the

> most

> > minor thing.

> >

> > Anyhow, to cut this short, I have read that some of you are using

> inositol

> > with your kids. Can you give me more information? Does it really work?

> > What's the dosage (my daughter weighs 106 lbs.)? We are also using

> > melatonin to try to get her to go to sleep. Do you think there might

> be any

> > interactions?

> >

> > Thanks for any help or links you can provide. I am resisting

> medication but

> > I am beginning to have my doubts about therapy. We have spent a month

> > working on coping skills and she seems to have none. She is not even

> > rational at this point, believing that if she blinks, chews gum,

> breathes,

> > or walks she will " curse " somebody and cause them to die. We have

> tried to

> > get her to challenge this belief but she seems to think it's quite

> > possible. As she is in a gifted and talented program at school and

> very

> > smart, it's hard to understand that she actually believes this.

> >

> > So, we want to explore the inositol route to see if it might help her

> before

> > turning to medication.

> >

September 4, 2009

What kind of therapy is she doing? It has to be ERP therapy to work. When my

daughter was first diagnosed we went to 2 therapists who were not doing ERP. One

was talk therapy and one was play/talk therapy. Neither one worked. We also had

to start medication b/c she was not functioning at all.

Unfortunately OCD is not rational. My daughter believed that she was doing the

craziest things. Hang in there. My daughter had to do the blood test and she