New and need a direction...

[airial95]

I would persue PANDAS first, and it's not just because I'm biased and have a child with PANDAS.

 

When we got the dx from our pediatrician, he initially said we were dealing with OCD, ODD and ADHD. From there, he gave us two options. The first was the traditional route, he'd refer us to a pediatric psychiatrist who would likely want combine therapy and medicate for the disorders. However, since my son had a strep infection several months earlier, he told us about PANDAS. He's not an expert, but had seen a few cases and treated them. He told us that the treatment is abx, and while he wasn't sure that's what we're dealing with (my son is young, so some symptoms are harder to pinpoint even though they're there), if we wanted, he'd give us a 30 day course of abx to see what happens.

 

I called it the "spaghetti on the wall" dx - let's throw it out there and see what sticks.

 

Within a week the violence was gone, within 2 he was significantlly better (well over 50%). Just from the abx. We've been on abx now for 8 months and doing very well. With the abx alone we've gotten back to about 85% normal, with some residual OCD, which we're now having some success with the CBT to take us the rest of the way.

 

I tell you all of this b/c my husband and I had the same discussion. If this is really OCD/ODD/ADHD, shouldn't we be seeing a specialist and getting him evaluated for those things as well?" In our opinion, trying 30 days of abx was far less damaging to our child than starting down a path that would surely have led to us using psych meds on our 2 year old. It was all about risk/benefit to us - the risk of the abx was low with a potential benefit vs. the medical risks of psych meds, especially at his age.

 

Talk to your pediatrician to see what they know about PANDAS and if they'd be willing to prescribe long term abx, or at least start you off with a 30 day script. Our Dr. gave us the initial 30 day course, and refilled us every 20 days after that, but we had to come in and see him to go over progress. After 8 months, my doc has seen the radical improvement (and instant deterioration when we go off) and we have a standing script and do a monthly progress update with him via email.

 

Since we're the most severe case he's seen (and needed treatment the longest), he's sent us to a pediatric neurologist (to rule out anything else), and Dr. Murphy, a PANDAS expert here in Florida to also get input. Both have confirmed his dx and course of treatment.

 

It sounds like you haven't had a detailed conversation with your pediatrician, so I would start there...the experts are all fantastic, and most of us have one on our team, but it helps also to find a pediatrician whose versed, or at least willing to learn about PANDAS.

[lmkmip67]

Wow, thanks for the info, everyone. I am hopeful that I will talk the pediatrician tomorrow. If not I will be making a same day appointment on Wed. She has my message and I am just waiting her call back.

 

I want to print out some stuff about it before I do see her. And I am going to request a referral to see Dr. B in CT. I just hope they take our insurance. I do feel I am doing what I can to help my child, this is new to us. I am reading daily, worrying, trying to figure out the right thing to do. I appreciate the input, all of it. His vocal tick is getting worse and worse by the day. I think some is the stress of school coming up. He doesn't love it. He is nervous. I feel like I am wading in quicksand. And all my husband can do is stress and worry. He can't even really listen to my worry about it. It all goes back to his worry. I feel be worries, but all of the doing falls on me. He has a job far away, so he can't really take him to appointments as he is our main income. We will see, I am taking it day by day. I just want to help my son, it makes me so sad to see him like this. I didn't wish this for him.