Azithromycin may be working now...

[Phasmid]

Hi all,

 

I wanted to tell you that it was not the azithromycin causing loose stool in my son, it was the vancomycin. Just too much antibiotics at once, and not enough probiotic probably.

 

He is tolerating the 500 mg. azithromycin. I know I just posted that I didn't think I was seeing improvement but it appears that he MAY be doing better now, after two weeks on azithromycin. I haven't seen eyelash pulling for past few days. It is so hard to tell what works, with the up and downs weekly though. I am anxious to see what, if any, additional gains will result from steroid burst if Dr. Lin orders that. He stated "immunotherapy" but I don't know what he is referring to.

 

I have an idea for a way to look at the "big picture" so to speak, rather than the daily progress. It makes more sense to be able to plot behavior as data points on a chart. Like stocks, you see a daily up and down, but over time, a trend upward is visible. Wouldn't this be great to be able to see over a longer period of time, a trend? I don't know how this could be designed, with all the variable symptoms, but my husband is a software engineer and he would be able to create something if I could express what I wanted it to do.

 

The other thing Dr. Lin has us doing is omega 3,6 caps for fatty acids. I haven't used any fish oil supps. since four years ago, when I gave them to my son during the worst of his illness and he developed hives within minutes. He also ate frozen cod and got hives. I put the two together and found that the oil in the caps come from cod! He developed temporary allergies to foods overnight. Wierd. The caps that Dr. Lin gave us to try are from oyster, with all proteins removed to prevent allergy. I haven't ordered them yet.

Edited June 19, 2010 by Phasmid

[Chemar]

Hi

just wanted to mention that where omega 3 is anti-inflammatory, Omega 6 actually PROMOTES inflammation which I would think is something you want to avoid in a PANDAS child?

[Phasmid]

CORRECTION TO MY POST:

 

The stuff we are trying is only Omega-3. It is MOXXOR brand, and made from New Zealand mussel. The claims are that it is "158 times more effective than fish oil, 247 times more effective than salmon oil..." in terms of anti-inflammatory value. How they come up with these numbers is unknown. I haven't looked for any research on this stuff; sounds like good marketing to me, but I am always a skeptic.

 

 

Hi

just wanted to mention that where omega 3 is anti-inflammatory, Omega 6 actually PROMOTES inflammation which I would think is something you want to avoid in a PANDAS child?

[datagirl]

I couldn't agree more about wanting the software to track behaviors, etc. Since we keep adding supplements, and see the ups and downs, it's often hard to tell what all is going on. There is an iPad/iPhone/Net app called MyNetDiary that has helped me some, but it doesn't have plotting for behavior. Maybe if more people requested it from the developers, we'd get somewhere. You can track all the food intakes though, and I add supplements as a custom "food" so that I can track the time it was taken. You can also track hours of sleep and other things.