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PANDAS update


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Allison

I have been following all this from the sidelines and am just soooo thankful to hear the good news that you are seeing an improvement.

 

Now all we need is for you to get some R&R too ^_^ I know just how this takes it out of one!

 

((BIG HUG)) to you from all of us! :)

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Thanks Chemar - definitely alot of good information. We are going to the ped on Monday to discuss antibiotics long term and I am going to ask her to do the ELisaA blood test to rule out or identify food allergies, mold ect.

 

The nurse at her school keeps asking me if she is allergic to mold because there is alot present. Let me know if there are other tests you think are important.

 

Thanks for thinking of us :) Tracy

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Every time I read something about LDN, I think about our PANDAS kids especially. This PDF by Dr. McCandless mentions IBS, and cancer too. Thought someone else may interested in reading. If anyone was inclined to join the group that's mentioned in this article, I would love to know if Dr. M thinks that it may be beneficial in a PANDAS situation. You can also just Google LDN and get quite a bit of information too.

 

http://www.lowdosenaltrexone.org/_conf2006/J_McCandless2.pdf

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Hi Kim

 

I am a bit biased against naltrexone because it was one of the drugs that my son was tried on for a troublesome aspect of his OCD, also at very low dose. (half of what I think was a 1mg tablet, but as it was 6 years ago, I honestly dont remember the exact dose)

He had dreadful side effects and came off it immediately!

 

However

I have heard from people who use it for Multiple Sclerosis who feel it has given them a whole new lease on life, altho they admit to some side effects.

I would personally suggest a very informed position before using it on a child.

 

edited to add: I recognise that my son does seem tohave a very low tolerance for most prescription meds(? maybe due to chemical sensitivity) and so once again, just because it had bad side effects for him, doesnt mean that I am claiming it would have bad side effects for everyone....just recommending that people read up and ask questions about potential side effects before giving it to a child!

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Chemar,

 

The things you have shared about your son's experiences have been worth a million. As always, thanks for the unbiased opinion. I totally agree, that's it's so important to learn everything you can, before making decisions regarding treatments.

 

Kim

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