My plan...any input appreciated :)

[saidie10]

Hi there! I have my spunk back and am looking for some advice on my plan of action. Thanks to two PANDAS moms for personal phone calls and words of advice, along with all your sweet and kind thoughts on getting my fire back!

 

The first thing I plan to do is tell my son's Dr. I want to test for any other bacteria or virals that we have not tested for and to do a benchmark workup of his immune system since it has been over a year since we did all the initial workup, and we have done 4 IVIG's, etc since then. I will also request to do the same testing on my younger son because I have a feeling he will now show the immune deficiency that his brother did last summer. I also want to do all the Great Plains testing of neurotransmitters that we did on my oldest last summer, but do on both boys this time. All my oldest son's neuros were sky high and I want to see if anything is getting more back to normal in that little head of his. Then, I will request that we switch my oldest (PANDAS dx last summer) to Zithro, and put my youngest on zithro as well.

 

If my son's Dr. balks at this (I don't know why he would...he is not the one getting poked and he is not the one paying for it) then we will head to Dallas to Dr. R who we did all the initial testing with and I know would gladly help us. We are also considering a phone consult with Dr. T if and when we get all the labs to ensure we are moving forward with the right plan of action. We have done a phone consult with Dr. K before and quite honestly I could not understand half of what he said so we are considering Dr. T - have heard good things.

 

I feel strongly about our Dr. here and I really hope he will stay on board with us! I think it is so important for doctors to become more educated on this, and unless they get their hands in there and get dirty, then they will stay in the dark like most of the ones out there right now!

 

Okay so right now I am researching all the necessary tests we need to do...throw em at me or tell me where I can find them!!!!

 

Thanks you guys