We're in the club

[kimballot]

I want to thank everyone who helped me over the past few months with managing my son's PANDAS. As many of you have heard, my 13 year old son has had a life-long history of allergies, severe chronic sinusitis, and behavior problems with sinus flare ups. By the time he was 2 years old we called the ENT every time he became hyperactive or started biting kids and the ENT responded with high dose augmentin, which calmed him down. Unfortunately, this did not cure the problem and along the way we had several "exorcist" episodes, OCD issues, tics, and down right depression from having to live like this (I was referring to his depression - though my husband, daughter, and I've had our moments as well in dealing with this as well!).

 

From 1997 until January 2010 we worked with one pediatrician, 3 allergists, 4 ENT docs, two ENT PAs, one immunologist, one neuropsychologist, one neurologist, one clinical psychologist, one gastroenterologist/allergist, one clinical social worker for play therapy, one summer program for ADHD, one family therapist, one psychiatrist, several OTs (at home) plus the full compliment of school-based special eduction, OT, social work, psychologist, and regular assistance from the principal and assistant principal an school nurse. Mind you - I really do not doctor shop. My daughter has had one pediatrician, one ENT and an allergist in her 15 years of life.

 

In January of this year I found out that my son was lost at school - not turning in work (that I knew he had done), unable to attend, forgetting everything (again). I tracked his grades and saw that he went from grades in the 80s from Sept - October to grades in the 50s in November-December. He was home the first week of November with the flu (presumable H1N1). I knew this was PANDAS, but have been told multiple times by local docs that it could not be PANDAS because he has chronic sinusitis and has never had strep throat. I took him back to the local docs who now thought I was even crazier because now I was thinking the flu caused PANDAS.

 

Thankfully, I found this forum. I found Dr. T, who helped me to organize all the medical records and did an initial phone consult to tell me that I was not crazy and it did look like PANDAS. Then I posted online because my son's blood work showed some mild immunodeficiencies and he was having another sinus infection. Momaine, Mama2alex, melanie, Shaesmom, and nevergiveup all wrote back and encouraged me to go directly to a PANDAS immunologist and get a Cunningham test.

 

Well - we just got back from Connecticut and Dr. B saw my son and agreed fully that my son has PANDAS and immunodeficiency, along with a sinus infection (ENT had dx that last week as well). We have a solid plan to deal with all of this with Dr. B and I am so grateful to be able to put all of this into the hands of someone who sees the whole picture! We will do lots of tests at home and go back in a month for follow up.

 

On the way home from CT we stopped and checked email - and my son's CamK was in - 156 - right in the middle of the PANDAS range (a big thank you to Kathy Alvarez and Dr. Cunningham!).

 

So that is my PANDAS story - Thank you to Sheila and to everyone who posts on this forum. I have learned more in the past 3 months from this forum than from any class I've ever taken! Thank you - and I pray for all of our families to continue to learn from each other and heal.

[MomWithOCDSon]

Wow! How validating it must be! Now on to the best treatment for your DS!

 

"Congratulations" sounds kind of odd, as in "Congratulations, you've got PANDAS!"

 

But "Congratulations" feels appropriate in the context of, "Congratulations! You persevered, now you know what you're dealing with and can begin to heal!"

 

All the best!

[thereishope]

I'm glad you are finding answers. Now it's time to get your son better!

[justinekno]

I'm so happy to hear that the visit went well and that you have direction now for your son. Your perseverance has paid off