PANDAS, OCD, & Your Child - Blood Tests Can Appear Normal!

Ok, I did say my blogging days were over - but - this is too important to stay quiet!

Has your happy, healthy, well-adjusted child changed seemingly overnight into an obsessive compulsive, clingy, completely different child?  I mean the difference is HUGE! And completely out of the blue. And did I mention HUGE?

Enter PANDAS - Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In essence, antibodies that would normally fight an infection, in this case strep, mistakenly attack the basal ganglia of the brain! Yes, the brain is under attack!  Google PANDAS (and also PITANDS and PANS) for more symptoms and information but be warned there are lots of different medical opinions on this controversial autoimmune disorder. 

After you've seen all the conflicting opinions on the Internet I just want to make sure you know one very important thing - Your child can still have PANDAS even if all the blood work comes up normal!  This is the reason I am here - to be sure you don't automatically believe a doctor who tells you that your child can't have pandas because the blood tests look fine.

Happened to me.  Multiple doctors.

Thank God I had done enough research to know this was not necessarily true.  Thank God for PANDAS parent and activist Beth Maloney and her efforts to educate the public and the medical community about PANDAS. 

So, even though multiple doctors told me my child could not have PANDAS based on his blood tests and even though those same doctors told me antibiotics would do absolutely nothing to help him...I insisted we at least try the antibiotics. 

And so... on merely Day 4 (can be longer for some) of antibiotic treatment there was a dramatic improvement in my son!  I kept up the antibiotics (another area of controversy).  It took months to get an appointment with renowned PANDAS expert Dr. Denis Bouboulis but at last the day came.  He told me that if my son had not been on antibiotics the past few months, he would definitely not be doing as great as he is! Scary, right?  He confirmed that a child can still have PANDAS even if all the blood tests seem normal.  Told me to keep up the full dose of augmentin for now.  Yes, the full dose - not a tapered down dosage.

Again, a child can have PANDAS even if all his blood tests appear to be normal!  Do not let a doctor convince you that your child can't have PANDAS based solely on blood work.  Yes, I know I keep repeating that.  But, like I said, it's the reason I'm here.

One final note, and this also applies to parents of autistic children who may be affected by PANDAS as well - PANDAS is not rare, it is just rarely diagnosed.

I truly hope this helps someone.  Happy, Healthy New Year to all!