An Unexpected Turn of Events

[nevergiveup]

All sounds so famiiar..... Hang in... Don't let them give u a false sense of security. I was told yes ivig, I was given abx, my shrink said yes is autoimmune. All felt good for about three months, I was even given a week of prednisone. (Did u think pulmacort was a steriod, or do u have pills like prednisone, inhaling steriods do not count as a systemic steriod). However when my dd went to crisis, found out no one wanted to do more than neuropsych drugs. They always opt up and say they r willing to consider ivig at our neuro childrens dept, but to date have never NEVER done it for a child.But since u informed us u have contacted two pandas experts u have a backup. Also just so u know exactly what's goin on insist on seeing all medical letters sent by ur specialist to ur pediatrician, these are more "telling" of what they are thinking and planning on doing. Plus u will get to see what they write about u, and all ur papers and prediagnosing ur child. I may be skeptical but I have watched this process for 9 years, with many families and I deserve to be skeptical. At this step in the process we all go into emergency mode, we organize and research, find credible docs at our local "well esteemed" childrens hospital whom are welltrusted. If this truly is a first onset, u have a greater chance of curing this before it becomes chronic. One last thing, if all you gave ur child is a nebulizer, u still qualify for the NIMH study. Call them u will be with the best doctors, whom truly understand this illness and he will get ivig. I wish u the best and your son. You are in the right place, her on this forum, you have the most experienced moms here that will help u through all of this, because unlike your neuro or shrink, we know panda kids, have treated panda kids and at this point ARE the leading experts.

[nicklemama]

Woohoo, you may have found a diamond in the rough. Please update the Michigan group. Not all read the posts here. This is such great news, as we struggle to find treating docs in our state.

[nicklemama]

sebrown- pm'd you w/ the MI PANDAS info

[HT's Mom]

"Also just so u know exactly what's goin on insist on seeing all medical letters sent by ur specialist to ur pediatrician, these are more "telling" of what they are thinking and planning on doing. Plus u will get to see what they write about u, and all ur papers and prediagnosing ur child. I may be skeptical but..."

 

 

So true!! Years after seeing a neurologist about our then 11 yr old Ds and his first major, pre-diagnosis episode, I got hold of the letter he sent to our pediatrician. In his office, he was kind and understanding, and supposedly listening to us. The letter itself called me and dh the OCD neurotic ones, not our son, and stated PANDAS was not likely, even though he met all the criteria, etc.

Edited September 29, 2011 by HT's Mom