Need to vent a little :)

[fuelforall]

This PANDAS is a real b----!

All the struggles, all the setbacks.

I know I need to try to get my kid IVIG no matter what. But all the setbacks from people there. Oy.

My son has been in school just a day and already the anxiety levels are HIGH HIGH HIGH.

We try to wait for the mood disorder to go away and hope he snaps out of it.

I wonder how we'll all make it through the school year.

My best to all of you, I know how everyone is suffering, esp the kids.

 

Michael

[thereishope]

My son is doing well right now but I find myself constantly freaking out that I may be seeing a precursor to an episode. You have no idea how many times I check his temperature to make sure he doesn't have a fever. Even though I know he doesn't get one with strep. Luckily, I bought a temporal one so it only takes a second.

 

His one year anniversary of PANDAS is his birthday, September 26. I am determined to have him well on that day. If he is well on the anniversary of when this started, I think I will feel a sense of accomplishment and relief.

 

Even though he hasn't had IVIG and right now does not need it, it hovers in the back of my head that I don't know if he will need it someday. That scares the heck out me. Just knowing the hurdles I would have to jump through. Knowing he may not even be able to get it if I can't get insurance to ever cover it. Here I am worrying about things that I don't really have to think about right now. But I find myself reading every post, even those that don't apply to me. I feel I need to learn everything just in case.

 

Life is so different than it was a year ago....