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exacerbation vs saw 'saw tooth' healing


NVAmom

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I thought I had a better understanding of 'sawtooth' healing after reading some posts from yesterday but now I'm not sure how you tell the difference b/t 'sawtooth' patterns and exacerbations. Can anyone help me understand how I know my son is not at the bottom of the saw tooth vs in a complete exacerbation?

 

Also, he has had a difficult week with increasing seperation anxiety and rages but this morning I realized he has a mouth full of sores and one in each corner of his mouth on the outside. I think I have read that can cause exacerbations but can you do anything for it? I have him using Listerene and a numbing spray from the dentist Ameseal).

 

My dtr has pink eye and was wondering if that has any corelation to my son with PANDAS and his increase in symptoms?

 

Last question, I have read DAN in reference to dr's and was wondering what that stood for.

 

Thank you very much. I am learning a great deal from everyone here and am very thankful for your willingness to answer ?'s

Debby

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You're going to hate my answer. For me, a lot was instinct. I'm sorry! I guess you can say if it was during the beginning stages of an exacerbation, I'd give him a few days before I really began to worry. 3 days was my personal cutoff. Setbacks and bumps in the road are to be expected, but not spiralling downward. I'd have to take a step back and look at what had happened over the previous days. Did he get enough sleep, is he stressed, is he fighting a virus, is anyone else in the family sick? When recovery was nearing a tailend (he was more himself than not himself), you quickly learn what an "expected" setback is vs a new PANDAS exacerbation. In that moment of a full fledge PANDAS moment, you're memory floods back and you "just know". When that happened, as he had a meltdown, I too just stopped in my tracks and cried. I knew it had returned.

 

I believe DAN stands for Defeat Autism Now. Even if your child is not autistic, DAN doctors seem to "get it". It is something to look into if you can't find a doctor in your area or as another person in additon to your neurologist, ped, etc to help guide you to a full recovery.

 

Have you given Ibruprofen to try to help ease symptoms?

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DAN dr means Defeat Autism Now. They are medical doctors who treat autisic kids with things that normal MD don't...I really don't know much about it, but I know they are willing to treat yeast issues more agressively, and are more likely to be cautious with vaccines.

 

http://www.defeatautismnow.com/

 

The mouth sores could be an indication of a viral infection--and that may be why you are seeing more PANDAS behavior. Your son is currently on Augmentin, right?

 

This is probably unrelated, but when my dd had thrush as an infant, she also had cracks in the corners of her mouth.

 

I had to take two zith packs in the spring, and I started to get cracks in the corners of my mouth, and my dd was on 100mg of azith daily, and her lips would look chapped and her the corners of her mouth would look cracked....In our case, I think it was a slight yeast overgrowth. I would brush all the soft surfaces with my toothbrush (I can't imagine your son would be able to tolerate this though) and then swish plain unsweetened yogurt, and rub it on my lips and the corners...it really healped.

 

I also had my daughter do it when her lips looked chapped...it really helped.

 

I'm sorry that your having such a hard time right now...Lots of hugs!

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Pink eye can be caused by the strep bacteria. You might want to take him to the Dr. to have the conjunctivitis swabbed and tested. Additionally, treat the mouth sores with a Fluoride Mouthwash.... I read a study that fluoride has the ability to breakdown the encapsulation of some of the toughest strains of strep.

 

There are several other studies but here is one: http://www3.interscience.wiley.com/journal...=1&SRETRY=0

 

-Wendy

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Can anyone help me understand how I know my son is not at the bottom of the saw tooth vs in a complete exacerbation?

 

I think it is almost impossible to see the sawtooth while you are in it. If you document symptoms on say a 1..10 score every week and plot this over time then you can see the sawtooth pattern. We have some 10 symptoms we track creating a maximum of 100 and a minimum of 0. We use 1-3 to indicate that the symptom happened but was irradic, 4-6 to indicate it was present pretty consistently, 7-9 that it was severe enough to be incapacitating. The easiest way to see a 7-9 is to think of the contamination fears and having an inability to wash hands because there are ghosts coming out of the tap -- take it that this is really severe and pretty out there.

 

In our case, when you plot the symptoms this way the sawtooth pattern emerges. If you want to see a sample graph send me an IM.

 

he has a mouth full of sores and one in each corner of his mouth on the outside.

Is this just a recent event or has he had these for a while?

 

My dtr has pink eye and was wondering if that has any corelation to my son with PANDAS and his increase in symptoms?

It's possible, pink eye is often caused by either a virus or by a staph or strep bacteria.

 

Last question, I have read DAN in reference to dr's and was wondering what that stood for.

Defeat Autism Now -- it usually refers to a doctor who specializes in Autism.

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I'm not sure what I'm seeing here with my kiddo, either. Her OCD is just as bad as ever, with a few new ones going on, but the last few days, I've been seeing obsessions and movements that we haven't seen for at least a year. I don't know if she's "turning back pages" or just bringing it all on at once.

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