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starting inosotol with Dr. B's support


mom2yo

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We saw Dr. B this morning with ds17. We have already done antibiotics (augmentin, biaxin, and then back to a higher dose of augmentin) and one midlevel steroid burst as well(40mg and tapering down), and haven't seen much improvement. On the steroid burst we had 2 better days, but Dr. B said it wasn't long enough or enough of a change to "count" as being diagnostic. My ds is just not a clear cut pandas kid although he has the ocd and a recent tic, along with other "stuff" (sensory, attention, learning issues).

 

So what do we do next, of course, is what we wanted to know. It's been very hard to say the least with all the waiting and not seeing much, hoping, praying, and wanting so badly for him to get better, as everyone reading this can i'm sure understand and attest to.

 

Anyway, we asked Dr. B about doing another steriod burst at a higher dose, which he agreed to, but he doesn't want to do it for at least a month to give the body time between the bursts. The purpose would be to see if there's change so we can see if indeed this is an auto immune disorder. (i still laugh and cry at how i wish soooo badly for my child to have this...just want answers and then results!)

 

We told Dr. B about all i've read on this forum about the inositol and he was very open to us trying it, saying that he has a bunch of patients who are doing very well on it. The plan right now is to do that for 2-3 weeks and see if there's any change. If no change,then the next step will be to try Cipro for 2 weeks, and then if still no change, then after that we could try a steroid burst again. (ivig is not really an option if he's not diagnosed with pandas.)

 

So, for now, we r going to try the inositol.(one thing at a time so if there is change, we know because of what).

Can anyone please help me with explaining what i should do with the inositol? meaning what dose? do i build it up? what incerements? any particular brand? with or without food (does that matter)?

My ds 17 is a full sized adult weighing about 180 lbs.

 

please advise.

thanks so much,

mom2yo

Edited by mom2yo
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Hi,

We have inositol on our shelf in case our DS17 needed it during his recent exams. Our Biomed/DAN! dr recommended it for any upswing in anxiety, but it didn't happen. (The dr suggested a dose of 1/2 teaspoon per day for a week or two.) I believe it has a similar effect to an SSRI (important to know if your DS is on an SSRI - you don't want to over do it.)

 

I also wanted to say we've had good results from seeing our Biomed dr. My son has mild Aspergers and co-morbid anxiety and OCD. We also know that a strep infection also ramps up those symptoms, so he has PANDAS too. (I don't know what came first - I'll probably never know.) We discovered through testing ordered by our Biomed dr that our DS had Zinc and Vit D deficiencies and gut dysbiosis. With treatment and a GF/CF/ and low grain/potato/sugar diet, I am happy to report the OCD and anxiety have been steadily peeling away, he's healthier, finished his school year with distinctions and he's happy!...I have my son back! We are still dealing with the occasional strep infection but we jump on it fast. We're hoping that as his gut heals and his immune system is stronger he will be better able to deal. So far so good.

 

If you haven't tried a good DAN! dr, maybe that's a path to try. Methylation issues would also be something such a dr would consider. Your son does not have to be on the spectrum to see a Biomed/DAN! dr. Hope things turn around for you soon.

Edited by Ozimum
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This thread may be helpful

http://www.latitudes.org/forums/index.php?showtopic=15715

 

The articles contain dosing info. You definitely want to build up, staying at a particular dose for a few days before moving up again. Also, if you decide to stop, you need to titer back down, again stay at one dose for a few days before dropping. Don't start or stop in big steps. When dosing, always check the label of your brand. One brand may have 1 gram per teaspoon and another may have 2 grams per tsp. You need to dose according to grams and then figure out how many teaspoons that comes out to for your brand. FWIW - we use Source Naturals in the power form. You can then switch to capsules, but starting with the powder makes it easier to do incremental dosing as you build up. It has a slightly sweet taste, like powdered sugar. You can mix it in drinks or my 6 yo just puts it on her tongue and washes it down with a sip of water.

 

I'm not sure two weeks is long enough to know if it's helping. It could be 3-6 weeks before you know for certain.

 

I agree with Ozimum - if chronic infection doesn't seem to be your primary issue, consider a DAN! or integrative doctor or adding a naturopath to the team. Methylation has turned out to be a big piece for us and addressing that is really helping my kids. Methylation is like the body's assmebly line. If you have a defective worker at the station where the tires are put on, your final product can't function properly. Working with someone trained in methylation support can help you find out if your son has any defective assembly line stations and use supplements (e.g. magnesium, zinc, folate) to work around the defect and get the body to produce a functioning car. Chronic infection can cause problems in the assembly line, but so can other things. If immune deficiency/Pandas treatments aren't getting you to where you want to be, an integrative doctor may be a good place to go next.

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