Where it all started. My husband and son sleeping mid-day because they both had strep!
So now it’s mid-June 2012 and I’m armed with a possible diagnosis. I read everything the NIMH has available on PANDAS, print it all out and make another appointment with the pediatrician.
During the 3 days we wait to get into see her, I spend all of my free time researching PANDAS and posting on Facebook to see if anyone I know knows anything about it. Two things happen that scare me to death:
- A friend, upon reading about The Dude’s symptoms on Facebook, reaches out to let me know that his wife is a social worker and that bedwetting, separation anxiety and OCD/tic behaviors often point to physical or sexual abuse. He asks if I’m sure my son isn’t being abused at school. We love our school and I feel certain that’s not the issue but can’t help but worry.
- I read Saving Sammy in one sitting. It’s a book about one child’s journey with PANDAS by Beth Maloney. Beth Maloney’s website While Maloney’s book was incredibly informative in a lot of ways, her son’s case was relatively extreme and went untreated for quite some time. Visions of my easygoing boy not being able to leave the house or go to school and wanting to kill himself keep me up at night.
For 3 days, I catastrophized about the possibilities:
- It’s not PANDAS and someone is hurting my child.
- It is PANDAS and we won’t be able to find a way to help him. A lifetime of struggle, treatments and the permanent loss of my boy’s personality loom large.
Two things I learn from my research:
- PANDAS wasn’t originally diagnosed until 1998, so only 14 years of actual data exists on the condition.
- Some controversy about exists about whether or not PANDAS is even a medically-recognized condition and thus it can be hard to find knowledgeable doctors to provide care and treatment.
Finally, after what seems an eternity, we see the doctor. The appointment lasts all of 5 minutes. She admits she knows nothing of PANDAS but is willing to read the documentation I provide. It indicates the the first course of action should be antibiotics and she offer to prescribe some if I’d like. I agree and we walk out with a prescription for Bactrim. Knowing that I’m effectively diagnosing, and developing my own treatment plan for my child doesn’t make me feel very confident.
It becomes my habit to research PANDAS every night after The Dude goes to bed. He’s been on Bactrim for a couple of days and we’ve seen no improvement but I’m holding out hope that it will just take more time and a full course of the antibiotic. Two days after our doctor’s appointment, while doing some of that research, I come across some additional information about strep and PANDAS: apparently, Bactrim is not for strep. If you want to treat it, Amoxycillin, Ceflex or Zithromycin are the antibiotics of choice.
While hesitant to be ‘that parent,’ I call the pediatrician’s office and leave a message indicating what I’ve learned and asking if Bactrim is really the best choice or if one of the other drugs might work better. I don’t get a return phone call, only a notification from the pharmacy that Zithromax has been called in and filled for The Dude.
We finish the Bactrim (because I’ve always been told not to stop a course of antibiotics mid-flight and I’m not getting a lot of guidance from the doctor at this point) with no improvement and switch to the Zithromax. Within 2 days, the tics stop. His personality begins to return to normal and he’s no longer wetting the bed every night. I’m stunned, thrilled and convinced: we know what’s going on – he has PANDAS.
And yet, here’s where it gets tricky. I have no idea what to do next. I know we need to finish the antibiotics but it’s becoming very clear that our doctor doesn’t have a clue and, from what I’ve read, PANDAS can be a lifelong condition that requires constant intervention. I’m stumped and worried.
When we finish the Zithromax, The Dude is 60% better. Bedwetting is still occurring, though not every night, tics are almost non-existent and, while he is still relatively sensitive, he’s starting to seem more like himself. But the antibiotics are gone and he’s not ‘cured’ and I don’t know where to go next.
Luckily, a 3-hour car ride to Cedar Point left me with plenty of time to dig around on the Internet. In searching for ‘PANDAS Columbus, Ohio’ in the hopes of finding a doctor who might know something about the condition, I landed on ‘PANDAS Parents – Columbus, Ohio’ which took me to the Facebook page for the PANDAS Parent Group of Central Ohio. You could have knocked me over with a feather! The associated website (Central Ohio PANDAS Support Group) had only been created a month before so I felt incredibly lucky. I immediately reached out to the woman who ran the group and asked her to call me. She called that night when we returned from a day at Cedar Point.
I told her my story much as I’ve told it here and she listened patiently and intently. When I finished, I asked, ‘So, what do you think?’ Her response: ‘I think you have a PANDAS kid.’ I had already read some of her child’s story online and knew that there were similarities in what we were experiencing. I grabbed onto her like a drowning woman grabs onto a passing log. ‘So, what do I do? Who do you see? Where should I start?’
She was incredibly patient and encouraged two things: 1) Make an appointment right away with a doctor who was very knowledgeable on the topic and practiced 20 minutes from my home and 2) Attend a PANDAS Parent Group of Central Ohio Support Group meeting.
I couldn’t believe there was a knowledgeable doctor near us and couldn’t wait to attend a support group meeting. I made an appointment with the new doctor (a DO, or Doctor of Osteopathic Medicine) immediately and began making plans to attend the upcoming meeting. The doctor was able to get me in within 2 weeks and suggested that, for our first appointment, I attend without my child to give her a sense for what was going on and try to bring video of his behaviors, if I was able. Finally, we had a little hope and plan of action for what to do next. More than that, we had support – somebody knew what I was talking about and other people (in our community nonetheless) were facing PANDAS and surviving!
Part 3 to come!