How many here have kids with PANDAS? (Vote even if not)

amother

Springgreen

Tue, Jan 09 2024, 10:58 am

amother Mintgreen wrote:

Bh for you and your child that this was your experience. HOWEVER it is very invalidating to those of us who have dealt with more. My child was completely not functional, unable to sit in class, running around the house throwing clothes off, could no longer write a legible word, melting down out of control all over the place..... His OT assessment showed a drastic decline from a year earlier. We saw an immediate and direct response to antibiotics although we did have to switch to a different one later for greater effectiveness. Every flare we caught sooner subsided sooner with antibiotics. We went through this for 5 years! There is no way this could have just been addressed with parenting as well as we were able. We did, we tried, therapy too. His brain was on fire and there was no one home to talk to. He couldn't process it! There is no way any of us would have survived and he would be functional today had we not addressed it when and how we did. I'm immensely grateful to be holding my breath and afraid to say that maybe we are now on the other side. BUT idk if I will ever forget wondering where my child went and who the dysfunctional raging lunatic who took his place is.

Hi, dealing with this now.. just wondering where you able to get the meds? Who prescribed it was it the pediatrician or a specialist? And does anyone know of a good panda specialist near Lakewood?

amother

Mintgreen

Tue, Jan 09 2024, 6:23 pm

amother Springgreen wrote:

Hi, dealing with this now.. just wondering where you able to get the meds? Who prescribed it was it the pediatrician or a specialist? And does anyone know of a good panda specialist near Lakewood?

Dr Eilenberg, he was diagnosing and treating long before many others locally

amother

Mintgreen

Tue, Jan 09 2024, 6:24 pm

amother Gardenia wrote:

To the amother who said her kid was diagnosed through a questionaire... I don't think that counts as a diagnosis. Most kids with diagnosed Pandas are diagnosed through bloodwork

Bloodwork alone doesn't diagnose. A child can have high strep titers and not have pandas and a child can be symptomatic and have moderately high titers. It's all about the autoimmune response that causes brain inflammation and different children are affected differently by blood strep levels