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bjtao
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04 Oct 2010, 11:26 am

We are starting week three on inositol. Below is a summary of our experience thus far.

Week one (Monday to Saturday)- 600mg in a.m., 600mg in p.m. - Major reduction in anxiety, nearly non-exisitent. Better mood. Previously, he had super high anxiety every day in evening, mood swings. He gave several normal hugs (bodies touching, faces close) where as he previously would never do this (once in many years). He sat in high wind, which would previously send him into a major tizzy. He walked in drizzle (rain) without an umbrella (previously we do not leave the house if it is raining or even drizzling due to major meltdown). He walked outside when there was water (from previous rain) on the ground without an umbrella (previously, if there is any indication of rain, he uses and umbrella). Wore pants to bed (previously this would cause huge problem).

Partial week two (Sunday to Tuesday) - 600mg in a.m., 1200mg in p.m. - increased dose for these few days. Didn't go well - high anxiety and mood. Sensory issues saw even greater improvement, but anxiety made it not worth it. He wore socks for the first time in months, first time in years wearing socks without huge meltdown (used to be daily struggle of 30 min to hour). Wore new pants from the store (previously would have caused major meltdown, even just looking at new pants at the store).

Balance week two (Wednesday to Sunday) - 600mg in a.m., 600mg in p.m. - Took a shower Wednesday morning so he could be clean for Outdoor Ed (this is a program thru the school where the kids go away up north and stay in cabins and go on hikes, etc...). Usually does not care about appearance, smell or being clean. Showers were struggle, but did get done. No struggle that morning, he initiated. Wore all clean clothes - NO SENSORY ISSUES with clothes at all.

Conversation after his shower in a.m.: Him: Where are my pants? Me: Wear the ones in your hand (dirty from previous day, was not about to fight about pants that morning, figured I'd allow him to have what he would usually want, the same pants as previous day). Him: I can't wear these. Me: Why? Him: Because they are the same. Me: [mouth drops open, completely shocked].....OK, here are some new ones.

At outdoor ed he had NO reported (by him or teacher) sensory issues. He changed his socks and pants every day. He has changed his socks (just wearing them is a major victory, but changing them every day??? Holy smokes!) and pants every single day since Wednesday. Back to the decreased dose, his anxiety is still low, mood is good.

Note: Using GNC brand, powder form Inositol, powder mixed with a little juice.

FYI - in case you don't already know me - my son is 10 yo, diagnosed PDD-NOS and Mood Disorder-NOS. Diagnosed this past July. He is on 3.5 mg of Abilify since July. On Abilify we did see a major decrease in mood symptoms, no more rages, reduced reaction to sensory stimuli, but still major sensory and anxiety issues.



DW_a_mom
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04 Oct 2010, 11:34 am

If he's happy and you're happy, then I'm happy. It sounds like you've got a good balance right now.

Outdoor Ed was a major turn around event for my son, all on it's own, just fyi. It was something he really want to do, and really wanted to enjoy, and was determined to make successful. The idea of that week had me so incredibly worried, I had no idea how he was going to make it through without me to mitigate things and, yet ... he did. Not only made it through, but put in place permanent changes in the process. Just when we think we can't handle it anymore, kids rise up and amaze us.

This age is one of incredible change. There is a solid amount of risk in it, but also hope. Kids grow up an amazing amount, in maturity and responsibility, in one short year. Many of the sensory issues will alter in the process.

I'm really proud of your son. Lots of hugs!


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bjtao
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04 Oct 2010, 11:39 am

I was also super worried about Outdoor Ed. I had previously scheduled a meeting to make accomodations for him, but cancelled it the previous week because he was doing so well with sensory stuff. It was really good for him and I was so happy he made it through with no issues. A few weeks ago he didn't want to go and was totally freaked out ("what if it rains? where will I put my glasses? What if they spray bug spray on my skin? What if it is windy? I just can't handle it...."), but then, once the sensory issues decreased, he felt very confident he would be OK and he was.



DW_a_mom
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04 Oct 2010, 11:52 am

bjtao wrote:
I was also super worried about Outdoor Ed. I had previously scheduled a meeting to make accomodations for him, but cancelled it the previous week because he was doing so well with sensory stuff. It was really good for him and I was so happy he made it through with no issues. A few weeks ago he didn't want to go and was totally freaked out ("what if it rains? where will I put my glasses? What if they spray bug spray on my skin? What if it is windy? I just can't handle it...."), but then, once the sensory issues decreased, he felt very confident he would be OK and he was.


It sounds like you are on the right course with him. I am really, really happy that things are going well and that you have found things to help.

I'm not always sure what changes what, but it sounds like you've got good instincts on it for your one unique child. I hope my post didn't sound like it was challenging that - as I was writing, I was a little worried it might, and I don't wish to, but I do think you also need to be aware that a certain amount of leaps are natural to the age.

But ... if you hadn't dealt with all the issues you already have, he probably wouldn't be in the space to make those leaps. It is such a crucial, crucial period. It's like you sorted it out in the nick of time. Does it feel that way to you?


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bjtao
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04 Oct 2010, 11:57 am

Oh, no, not at all.

I also hope people don't read my update and thing I am saying I have found a miracle or cure for SPD. I won't be sure it is the Inositol until it has been consistent for many weeks. Although, if these changes are real and permanent, and not just a fluke, I will be convinced there is a direct correlation. And good, point - my 'unique' child. What works for one will def. not work for all, or sometimes even most.



DW_a_mom
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04 Oct 2010, 12:10 pm

bjtao wrote:
Oh, no, not at all.



I guess it's a little early ;)

I look back on that age with my son, and feel like we really lucked out getting appropriate answers and a few key things in place at the right time, and am so grateful. I sincerely hope that you will be able to do the same.


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04 Oct 2010, 12:30 pm

So happy things are getting better for you and your son! Keep it up!



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04 Oct 2010, 3:21 pm

We are still using the Inositol also. We are on week 3 as well. Unlike you, I have noticed an increase in sensory issues, especially auditory sensitivity. The anxiety and mood seems to be better (less agitation and arguing) especially in the morning. We may need to up dosage (currently on 500 mg caps brand: Twinlab). My daughter is age 7 and weighs 44 pounds. I am hesitant to up dosage due to increased auditory sensitivity.



bjtao
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04 Oct 2010, 3:47 pm

Maybe you want to decrease the dose first? My son is over 80lbs on 1200mg.



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04 Oct 2010, 4:05 pm

We started at 250mg once per day and are now at 500mg once per day. I've read most studies use 1g or more as a starting dose so that's why I've kept the dose relatively "small". You think 500mg is too high?



bjtao
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04 Oct 2010, 7:22 pm

No, I don't think it is high at all, but I couldn't remember if you had started lower. Maybe go up to 1g? My son is doing well at 1.2g. Do you think the reduction in mood/anxiety is worth the increase in sensory issues? I hope it works out and I hope you find the right dose.



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04 Oct 2010, 8:20 pm

I think the reduction in anxiety is quite notable however, we have had some bad days mixed in. I am not sure the auditory sensitivity is due to the Inositol-I just noticed her holding her ears more. As you know, that could be a cold coming on or just the change in the weather but it did seem curious timing as to coincide with the start of the Inositol. The most remarkable difference with the Inositol has been the mornings. My daughter is FAR from a morning person. She is usually very grumpy, whining and carrying on about not wanting to go to school. Getting her dressed or getting her to eat is a very long, exhaustive process. I have noticed in the past 2 weeks she is waking happier and is easier to get going. We still have a bit of the school refusal, though :? I wish there was something that would help her like school. :lol:



ben10scotland
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31 Dec 2010, 11:36 am

Found this by searching Google for the search terms inositol autism

http://curezone.com/forums/fm.asp?i=49840

clinical trials often use very high doses under supervision to establish if a medicine is effective at treating a certain condition
The studies looked at doses of 12 and 18 grams per day, these doses were probably used under closer supervision by a doctor [havent read papers]

Let me know what you think. what form of inositol is used [manufacturer and product name] and what doses you use [if not already specified]



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31 Dec 2010, 2:51 pm

ben10scotland wrote:
Found this by searching Google for the search terms inositol autism

http://curezone.com/forums/fm.asp?i=49840

clinical trials often use very high doses under supervision to establish if a medicine is effective at treating a certain condition
The studies looked at doses of 12 and 18 grams per day, these doses were probably used under closer supervision by a doctor [havent read papers]

Let me know what you think. what form of inositol is used [manufacturer and product name] and what doses you use [if not already specified]


Not addressed to me, but I think the panic attack reduction is interesting. The comparison to the anti-depressant for mood forgets to mention something important: I've read that anti-depressants test out no better than placebos in blind testing as far as mood and "feeling better" go.


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ben10scotland
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31 Dec 2010, 3:25 pm

Hello, is anyone who has tried Inositol from the UK? I have Aspergers, and I was thinking of trying it out. If it has the same benefits that have bee reported on here maybe it can help with my remaining autistic symptoms. I take sublingual vitamin b12 at a high dose each day and this seemed to help, now onto 2nd bottle.

I was searching for niacin on the forums and found a bit about Inositol, has anyone with an autistic spectrum disorder tried niacin or any other amino acid?

I tried a tryptophan containing product as well called Serotone 5HTP, it was about 10 pound for 30 or sixty capsules, don't think it worked too well but it's not really possible to know as symptoms are subjective, didn't experience large benefit as with b12 or zinc.

A lot of the supplements may be involved in the pathways which help to treat depression, hence you should be careful if you take complementary medicine such as tryptophan with an antidepressant for instance as the condition can cause a serotonin syndrome (extremely serious).

If anyone is from the uk where do they buy inositol from, what brand works best. And do you need to take it with anything else?