Starting treatment--need encouragement

[MarylandMama]

My 8 year old daughter just saw Dr. Latimer for an evaluation last week and is starting treatment for PANS/PANDAS. The lab couldn't figure out her order form and has been trying to get clarification but hasn't been able to yet so we just went ahead and started on the medications she prescribed--30 days of clindamycin and a 30 day tapered dosed of prednisone. She has had 5 full days of medications at this point and it's been a rough few days. I have read about herxing and don't know if that's what's going on here but things are worse now than when she started the meds---disturbing obsessions, more compulsive behavior (she was previously almost all obsessional), urinary frequency issues, perianal irritation, and just more generally tied up in all of this. I'd say things were mild-to-moderate before treatment and she is solidly in the moderate range now. Still able to go to school and activities but just kind of miserable. We were supposed to have a follow-up at 1 month but due to the doctor's schedule we don't have a scheduled appointment until August. I am so anxious and unsure about everything and just want my daughter back. I was so relieved for a few minutes when the doctor seemed confident about being able to treat my daughter but now I'm so worried that this is all getting worse. I'm giving her a couple kinds of probiotics and trying to help her as best I can. I could desperately use some encouragement and some perspective on what the next month might look like. Thanks.

[Gpookie]

Hoping it goes well!!! From a fellow MD resident...

[MomWithOCDSon]

Hang in there! If you've poked around here on the forum a bit, you'll see that you are very early in treatment at this point, so while it's feeling rough, it will very likely get better as the days go by. Not having the benefit of any of your history, I'm not sure how bad things had become before you got to Dr. L., but certainly something told you your DD was suffering from something, and thus you sought out and were able to consult with one of the top docs in the field. Unfortunately, from what I've heard of from another of Dr. L's current patients, she and her office are booked to the brim, so it can be tough to get additional, timely support at times.

 

Keep the faith, stick with the abx and steroids, and do what you can to minimize the stressors for both your DD and yourself, if that seems to be helpful at all. Lighten the load via school and extracirriculars, if you can, and maybe indulge yourselves in something she especially enjoys while she fights back at the PANDAS.

 

Take care of yourself!

[MarylandMama]

Thank you for the idea to indulge a bit since she's been struggling so hard. I took your advice and surprised her with a trip to the swimming pool. When we were there she said it was the happiest she had felt in many weeks. That made my day. It made the rougher spots of the day easier to bear.

[ibcdbwc]

We discovered the hard way that the "brilliant blue" dye used in the clindamycin was wreaking havoc on my kiddo. Just something to consider. We switched to a compounded dye free version and all was well again.