Titres back...now what

[kruse02]

I am new to this, so bear with me.

 

My DD is 8yrs old and began showing signs of what we now believe are tics back in Oct/Nov '11. These tics consist of severe eye blinking with loud sniffing. Her eyes stay closed up to 3seconds at a time. We started at the allergist, found out she is allergic to dust mites (who isn't??). Then moved on to the Opthomologist. Eyes are healthy, but that is where we received the possible PANDAS diagnosis. As we look back she may have had other vocal/motor tics in 2008, but that is too lengthy to discuss here.

 

Our Gen Peds doc is more than receptive to the possibility of PANDAS, but doesn't have any experience with it. Only one of her partners has seen only one case in his training. We drew ASO and DNASE-B levels in mid-April. Her ASO was 302 and the DNASE-B was 572. Prior to finding out these results DD had an "impetigo-like" lesion on her lip and was put on 10days of Keflex. The Pediatrician called today and said she doesn't know what our next step should be given that we just finished a 10day course of the suggested antibiotic.

 

We are taking her to a child psychologist d/t a panic attack DD had on 4/23. We have a working diagnosis of anxiety and are monitoring for OCD. I am so sad for her, and I don't know where to turn right now. I am a Pediatric nurse and I feel like I should be able to do more for her. I just don't have the knowledge base right now to help.

 

Any suggestions on what a next step should be??

How often are you supposed to follow ASO/DNASE-B levels?

Anyone have any experience with Occupational Therapy using Sensory Integration Therapies to treat anxiety/OCD??

 

Sorry so lengthy.

Kruse02 in Iowa

[AmySLP]

After successfully managing PANDAS in my now nearly 8 Yr. old for the last 4 years, and continuing to do so in my 5 year old, these would be my suggestions....

You need to get an appt. with a PANDAS doc for guidance (I'd recommend one of the top few...Dr. K , Dr. M, Dr. L, Dr. B, Dr. T) . We have a great pediatrician too but he needs the guidance of some one who specializes in this disorder.

 

While waiting for that appt. Keep your daughter on antibiotics. Most commonly used are Zithromax, augmentin ES (my daughter has been doing quite well on Bactrim). Full strength doses daily and journal symptoms to Document any changes.

 

Kim ballot if an OT here who you can message with Sensory Integration questions. We have used SI treatment with both our girls for auditory defensiveness, tactile sensitivity, etc. at storm point for each. It is a tool to use along side antibiotics and such.

 

Sounds like you have a good start with your pediatrician. We have never "watched" titers. The purpose is to document the strep history (in our case our daughters do not rise, despite positive rapids and cultures for months ). You just need to get your pediatrician on board with continued abx.

 

Best wishes for a speedy recovery for your daughter.

Amy