What’s the plan?

He is getting better! What does that mean? Well, he started with a new doctor this week, a Neurologist with PANDAS expertise and lots of experience. It took weeks from when we scheduled to see her till the appointment. DC’s Dr. L if you’re in the PANDAS/PANS crowd.

Smiling PL

She took a full history of the last few months and our family health and he had a physical exam. She confirmed his PANDAS diagnosis but thinks he may also have had Impetigo (a staph rash) which she said is common with Strep and possibly a secondary infection such as Mycoplasma (walking pneumonia) since he has responded so much better to the Azithromycin than he did to the penicillin-family drugs. He has never tested positive for strep, but did have high levels of the antibodies in early February, meaning he had been infected with it. We’re doing more blood work on Friday so it will be good to see where he is now.

She explained there are 2 parts to what we’re doing now.

STEP 1: Cure the infection
So more antibiotics for a month to treat the infection, she’s switching him to Clyndamycin. We have it in capsule form as she said the taste of the liquid is horrid. My husband tried to feed him the powder in Nutella tonight and apparently the flavor is so bad even that didn’t work. He has to take this 3 times a day. Any ideas? We’ve have tried to teach him to swallow pills for 2 weeks and haven’t gotten anywhere.

STEP 2: Repair the immune system.

We’ll revisit this in a month, but possible treatments include steroids or IVIG (intravenously administered immunoglobulin that contain antibodies collected from the plasma of healthy donors). And for now, that means no school (he’s already getting home instruction from our county thankfully) and I can’t take him in to our daughter’s pre-school as I had hoped now that he has perked up so much.

And for our family, she thinks I should probably have my tonsils out as I may be the one carrying the infections to us. I have had a lot of strep the last few years and was sure I had it in December when B and I were sick. I even went to the doctor and tested negative. But I’ve now been told by many doctors that you can trust a positive strep result but a negative one is unreliable. And I’m terrible at getting swabbed!  So it’s off to the ENT for me to hear their thoughts on the health of my tonsils. Not exactly what we expected, but definitely better if it’s me than my son!

We are still dealing with many of the symptoms (now more of the general anxiety and separation anxiety than the OCD) but it is so much more manageable, so we’re working through them and will re-evaluate working with therapists to help him or teach us to support him if we think we need it a little further down the road. My feeling is that we have learned enough to get us through a rough patch and the less appointments the better. And as we are through the worst of it, I will no longer be seeing a Psychologist either (it really helped!). But don’t tell the kids… we’ve decided to keep that appointment on the calendar as my weekly escape hatch!

~Ali

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