What are the PANDAS kids reacting to?

[cara615]

Is it the infection in another child that comes in contact with the PANDAS child or is it the high antibodies?

 

For example if my PANDAS's twin (non-pandas) has strep and we kill the infection, once we finish our course of abx will my PANDAS twin continue to react to the high antibodies in his brother's system?

[Mayzoo]

I am not an expert, but my understanding is this:

 

1. Exposure to virus or bacteria from any source (grocery cart, sibling, money handling etc...)

 

2. Pans kid immune system ramps up inappropriately

 

3. Antibodies and auto-antibodies are generated in Pans kid

 

4. Pans kid immune system causes inordinate amounts of inflammation (some inflammation is a natural reaction to exposure and is supposed to make our bodies less hospitable for some bacteria and viruses.)

 

5. Antibodies and auto-antibodies attack basal ganglia instead of the virus or bacteria.

 

6. Basal ganglia becomes inflamed due to attack.

 

7. Basal ganglia inflammation and overall body inflammation cause behaviours we see as Pans.

 

Someone else can chime in with maybe a better explanation than I have. Anyone who is better versed, please feel free to correct any area I am wrong or off in--no offense will be taken. I am just now really studying this whole thing in an effort to make a plan of attack.

[cara615]

Ok I think you may be misunderstanding my question. Here is the situation. PANDAS DS (we will call him C) was reacting to non-PANDAS DS (we will call him J). We come to find out that J had strep. We put J on abx for 10 days. During this time C stopped reacting and got better. Once we finished J's abx course, about 4 days later C started reacting again. I thought,hmmmmm maybe J got strep again or maybe we never killed it off completely!!

 

So i had lots of extra abx in the fridge because they give way more than you need and i put J back on the abx. Guess what? C stopped reacting within 24 hours!!!

 

So my question is what was C reacting to in between the 2 courses of abx that I am giving J? Was it another infection in J or was it just high titres in J?

 

here is where i think I answered my question. J has high titres whether he is on abx or not. Titres take a while to decrease. So if C is doing well then it should be safe to say that he © was reacting to an actual infection in J's body that was not completely eradicated from the 1st 1o days of abx.

 

Follow me? I know I am so confusing and driving myself crazy!!!

[Mayzoo]

In that case, I would suspect you either never completely cleared the infection or, less likely, J got a back to back case of strep. I do not believe a PANS child will react to residual antibodies in another child IF that child is not actively infected. But again, I am not an expert by any means yet.

 

Do you have home rapid strep tests? I buy them off amazon, and you may find them to be invaluable in managing multiple kids around your PANS son.

[cara615]

i totally need to invest in the home rapid strep tests. Thank you for suggesting. Going to buy STAT! And i agree, it was a residual infection that was not completely killed off by 10- days of keflex.

[qannie47]

I think that your Pandas child could just perhaps be wax/waning from the original exposure... The couple of days off abx having no relationship to your pandas child looking symptomatic again. However, I think it is important to check non pandas twin to make sure infection is cleared. Otherwise, your pandas twin will continue to flare. Does this make sense?

[cara615]

Yes, I have non PANDAS back on abx for about 5 more days and then we will run out of keflex. Then we will see what happens. If PANDAS twin relapses then i need to take non PANDAS twin in for another culture. Praying we will be out of the woods.

[qannie47]

I think you should take him in for re-check anyway...