Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

hawks

Inositol for OCD

Recommended Posts

Kimballot and LLM I think you both use inositol. DS15 is just over 100lbs - wondering about dosage, brand and where to get? I think I read recently that it has worked well for your children. We are dropping the Zoloft and going to try this instead. I was also thinking of 5Htp if you know any thing about this.

 

If anyone else has experience with these supplements please chime in. Thanks.

Share this post


Link to post
Share on other sites

Here are some links that might help.

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_m0ISW/is_255/ai_n6211958/

f. http://www.ihealthtree.com/inositol-powder-8-oz-source-naturals.html

 

I think the treatment dose for adults was between 12-18 grams/day for full-blown OCD. Lower for general anxiety.

Titer up your dose every 4-5 days to avoid gas and discomfort and to give yourself time to see if you like the result of that particular dose. We use the Source Naturals powder because you can tweak dose easier than you can with a 600mg capsule. But for someone your son's size, either would probably work. The powder is virtually tasteless - like powdered sugar. (Good for anxious moms too).

 

My son, when he was 50 lbs and in full Pandas glory, needed 5 grams/day. (he hasn't used it in about 2 yrs). My daughter, 45 lbs, is on 2.4 grams/day. She got mean when we tried a higher dose. So I don't know if weight is as important as response when deciding where your sweet spot is. Nancy Fxcfer posted that if you go too high, you might see bi-polarish swings, and if so, back down. That's what we saw with DD and why we stayed at 2.4 grams, which is pretty low.

 

It initially did wonders for DD. It was so cool to see her anxiety-free. It's less effective now, but she's also dealing with some butt-kicking fatigue - unable to go to school full time - due to some virus or possibly mycop. It's causing a bump in her anxiety, but still more manageable than before. We met with our integrative yesterday and will be trying some new things for that. So it's possible that whatever is currently going on has lessened the effectiveness of the inositol. One option would be to up her dose. But I want to keep everything the same so I can measure how effective our new experiments work.

 

I don't have experience with 5Htp but it is on my list of things to consider, along with SAMe. I think they all have something to offer. Just can't suggest any dosing info on those.

Share this post


Link to post
Share on other sites

LLM- would love to hear more about your appointment yesterday, if you feel like sharing. I also wonder if myco p is an issue for us right now, since stepson came home from college with it during winter break.

Edited by philamom

Share this post


Link to post
Share on other sites

Kimballot and LLM I think you both use inositol. DS15 is just over 100lbs - wondering about dosage, brand and where to get? I think I read recently that it has worked well for your children. We are dropping the Zoloft and going to try this instead. I was also thinking of 5Htp if you know any thing about this.

 

If anyone else has experience with these supplements please chime in. Thanks.

 

 

yes - DS14 is using 500mg (.5g) per day. He takes it at dinner time. We tried adding in a second on with breakfast, but had much stomach upset as that is also antibiotic time.

 

Either way - the 500mg seems to be working well. It has taken the "edge" off of the OCD and cognitive inflexibility, which means fewer fights, meltdowns, and rages. He had ONE rage episode since we started inositol in December and is going to school everyday now (though we also changed a few other things that could be contributing to that). Overall, just more cooperative.

 

We tried 5 htp in the past and I thought I saw some "withdrawal" when it seemed to wear off... not sure though as he was in an extreme exacerbation at the time. The inositol is working well, so we will stick with that for a while.

Edited by kimballot

Share this post


Link to post
Share on other sites

LLM- would love to hear more about your appointment yesterday, if you feel like sharing. I also wonder if myco p is an issue for us right now, since stepson came home from college with it during winter break.

I updated on the lyme forum, since you guys were helping me brainstorm. Don't want to hijack this thread. One of the things we're adding is l-lysine for anti-viral and it has some GI-calming effects. So I immediately thought of your DD. Will email you some details.

Share this post


Link to post
Share on other sites

Thanks for information ladies! Very helpful.

 

LLM - thanks for the links - that should keep me busy for a while. Hopefully your new experiments work and your daughter will see improvements soon.

 

Kimballot - I think I will try the dose that you are using and work up from there if we need to. Is your DS still doing the IVIG's?

 

DS15 has been different doseages of Zoloft for about a year now and as I look back I wonder if some of the symptoms we had seen were indeed the drugs side effects as opposed to the PANDAS - as LLM noted about Nancy Fxcfer's post.

Share this post


Link to post
Share on other sites

Thanks for information ladies! Very helpful.

 

LLM - thanks for the links - that should keep me busy for a while. Hopefully your new experiments work and your daughter will see improvements soon.

 

Kimballot - I think I will try the dose that you are using and work up from there if we need to. Is your DS still doing the IVIG's?

 

DS15 has been different doseages of Zoloft for about a year now and as I look back I wonder if some of the symptoms we had seen were indeed the drugs side effects as opposed to the PANDAS - as LLM noted about Nancy Fxcfer's post.

 

 

Hawks - I've been told to proceed with much caution if your child is on SSRIs when starting inositol. I'd check with a doctor. My son is not on ssris. yes - we still do IVIG every 6-8 weeks.

Share this post


Link to post
Share on other sites

Hello.. I did a search for Inositol and found you all.. I have been reading alot of the thread about it, but most of them were posted years ago.. so I thought i would jump in here since it was more resent..

 

I just started my two PANDAS children on Inositol this weekend..

 

My 10 year old daughter has been dealing with PANDAS for 3 years dx 2 years ago and so far her only treatment has been daily antibiotics.. her symptoms were ocd(without to much C but alot of O) high anxeity, sepration anxeity, and big time sensory issues mostly with clothing. most all of this went away with antibiotics with mild symptoms flaring up everytime she is exposed to something.. mild symptoms is moody and crying alot.. a little more then mild symptoms when she herself get sick is the obessive thinking, and alot of other OCD stuff such as checking glasses forks, plates so on to see if they are dirty.. Only eating certin things.. fear of seeing the dark to the point of not wanting to go out and having to have the curtin closed just right so she can't see out at all. that sort of stuff.. She hasn't had any of the sensory stuff in 2 years until this week a little bit with being picky over her socks.

 

My 12 year olds son came down with PANDAS just this fall.. His symptoms are OCD, high anxeity, and tic and movement disorder.. BAD Bad major movements disorder to the point where he hasn't been able to attend school since Oct.. We started working with Dr T in January of this year and with high dose antibiotics and steroids he got so much better.. He was at the point of not being able to sit up or walk, his body was flopping around like a fish out of water.. and his OCD had him hiding in a tent he made with his bed where he was behind blankets 24/7 afraid to come out for weeks.. after the 5 day steroid burst and antibiotics he was back to his happy self with just a major fear of school remaining as far as the OCD/anxeity of it.. and as for the movements and tics.. everything went away except for a shaking in his hands and head which were going on pretty much non stop except for when he was sleeping.. So we did a 21 day steroid taper and brought him down to a maintance dose of antibiotics which is 250mg of azithro every other day he was back to his normal self thought wise, mood wise except for his fear of school(but he fights though it for his tutoring but afriad to go to the school building and letting any of the kids his age other then his friends see him with the shaking) the shaking itself was no longer none stop it was still there every day but he could go hours with out it happening.. which was such a major improvement... but he has been off of it for 6 weeks now and 2 1/2 3 weeks ago the shaking started getting worse again, and some of the flinging of his arms, legs and head jerking back started happening again... his anxeity over stuff is starting to get worse, he has even started crying over things again...

 

now since both of my PANDAS children are going down hill at the time.. i don't know for my son if it is the effect of the steroids has worn off or for my daughter that she was exposed to strep by her best friend.. OR of for both of them that my youngest non PANDAS son and I both test pos for the flu on March 9, 2012 and they are reacting to that... I don't know what the reason is..

 

but I have been reading about inosital anyways and thought I would give it a shot for them..

My daughter is 10 and 60lbs and I started her friday night with 1g (1/4tsp of the powder) once a day figured i would do that for a week. but since starting it she has been complaining of her stomach hurting and she has had diareah each day.

 

For my son who is 12 years old and 197lbs(big boy to start but steroids for a month and not being able to be active for the last 7 months has not helped at all) I started him on 2g a day.. but we didnt' start him until yesterday cuz he wasn't home on friday.. he said his stomic feels fine, and he isn't having issues with diareah... but his shaking got worse today and his head was flinging back alot.. so much more then yesterday.

 

I guess my question is.. does anyone have advice for me as I start this.. is there anything I should know.. My son is on the azithro like i mentioned and also 1 1/2mg of tenex a day.. my daugher just on the antibiotic..

 

has anyone heard if Inositol can make tics and movements worse??

 

Thank you for your help and all comments are welcome.

Share this post


Link to post
Share on other sites

We use 5HTP for sleep at night with DS. It helps the child stay asleep once asleep. My understanding is there is indeed a sweet spot to find. Start slow and increase; if bad after increase, just bring dose back down. We just started Azicyclovar (not sure I spelled that right - antiviral) to help build NK cells back up. Once of the good side effects of it is that is helps take the edge off as we wean DD off of Zoloft. So far, so good!

Share this post


Link to post
Share on other sites

Just my opinion, but given her symptoms, starting out at 1 gram is too much too soon. I would back down on your DDs dose and start with half that for a few days, then work up. Even for your son, you're starting at a somewhat high dose. In the links I listed at the top of the thread, there's an article that discusses dosing and building up over a 6 week period. You can check that one for guidance.

 

As an FYI - since I last posted on this thread, my daughter stopped taking inositol and switched to tryptophan. It is working much better for her.

 

I never noticed any correlation between tics and inositol. What your son's symptoms suggest, to me, is that he may still have some sort of infection. He is on a very low dose of abx and that may not be enough. For my son, his last episode of tics (a year ago) was triggered by an aggressive lyme treatment. His body couldn't get rid of the toxins released by the dying bacteria and that triggered tics. When we changed treatment, his tics stopped. We have worked on a lot of detox. It sounds like there is still stuff that needs to be uncovered for your kids. Are you doing any additional testing?

Share this post


Link to post
Share on other sites

Thanks for information ladies! Very helpful.

 

LLM - thanks for the links - that should keep me busy for a while. Hopefully your new experiments work and your daughter will see improvements soon.

 

Kimballot - I think I will try the dose that you are using and work up from there if we need to. Is your DS still doing the IVIG's?

 

DS15 has been different doseages of Zoloft for about a year now and as I look back I wonder if some of the symptoms we had seen were indeed the drugs side effects as opposed to the PANDAS - as LLM noted about Nancy Fxcfer's post.

 

 

We've used 5-htp for several years (Dr. K. recommended), and it works well for us. We are now using 5 htp from xymogen (have to get it through a provider). Gives extended release, and appears to be keeping them more calm throughout the day.

Share this post


Link to post
Share on other sites

Just my opinion, but given her symptoms, starting out at 1 gram is too much too soon. I would back down on your DDs dose and start with half that for a few days, then work up. Even for your son, you're starting at a somewhat high dose. In the links I listed at the top of the thread, there's an article that discusses dosing and building up over a 6 week period. You can check that one for guidance.

 

As an FYI - since I last posted on this thread, my daughter stopped taking inositol and switched to tryptophan. It is working much better for her.

 

I never noticed any correlation between tics and inositol. What your son's symptoms suggest, to me, is that he may still have some sort of infection. He is on a very low dose of abx and that may not be enough. For my son, his last episode of tics (a year ago) was triggered by an aggressive lyme treatment. His body couldn't get rid of the toxins released by the dying bacteria and that triggered tics. When we changed treatment, his tics stopped. We have worked on a lot of detox. It sounds like there is still stuff that needs to be uncovered for your kids. Are you doing any additional testing?

 

Thank you all for your responce.. I'm going to lower the dose with both of them and see how they do... and also go and read all the links you have listed at the top. As for additional testing.. they don't have anything ordered as of now. Dr T in New Jersery did find a doctor here in Ohio that he recomended who does all sort of testing and treat both antibiotics and bio med. I spoke with the office on the phone, but i can't make the appt yet.. They don't take insurance and right at this time I don't have the money to pay upfront.. my husband company closed down 10 months ago and he has yet to find another job so the 6 of us are still living off his unemployment check while he is looking for work. But my parents have offered to help out and our income tax check should becoming here in the next month...

 

ONLY I haven't made up my mind which would be the next best step for my son. For my daughter I think the doc Dr T suggested would be best.. She is funtioning and living her life just with good days and bad days and I think the bio med route might be the way to go for her... but with my son.. I don't know which is my best opption. He has pretty much lost the last 7 months of his life and at this moment moving backwards..

 

So i don't know if I should try more testing and the different bio meds and supplements or if I should do IVIG and see if we can get him out of the worst of this.... Any thoughts on this is welcomed also since I really don't know what is best..

Share this post


Link to post
Share on other sites

Since your son is back sliding you might consider taking him back to his daily hd antibiotic. My son stays stable with this protocol. Its a long story but after many many months it is clear my son is antibiotic dependent and has other co-infections. I am learning more and more and adding more supplements all the time with good results. But I cannot lower his antibiotic or symptoms come back.

 

Not to scare you my only intent is to share, but I talked to another doctor recently in regards to my son and she suggested since azithro cannot be lowered successfully it was time to look at lyme/bartonella as possible infections. I believe she is right. You may want to peek at the lyme forum as both of these forums have helped me tremendously in getting the right treatments for my children.

 

Good luck to your family and son, I hope he finds relief with the right combination very soon.

Share this post


Link to post
Share on other sites

since Inositol is a sugar, are there any concerns re: hypoglycemia? I plan on trying it soon and suffer from reactive hypoglycemia so was wondering if I should be careful, particularly with the high doses suggested for OCD

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...