Long Exacerbation: Bad to Worse Update

[SurfMom]

Update on DD15, first illness ever strep March 2012, first PANDAS exacerbation in October, fast and full recovery with course of amoxicillin, second exacerbation Nov. 2012 to now. Intensive and thorough inpatient diagnostics physiological and psychiatric at Duke, confirmed Autoimmune with only high DNAse and ASO...after 24 EEGs full body PET scan, lumbar punctures, MRIs, extensive antibody testing..and so on. 2 g. IVIG and pred.

 

We are just out of the hospital again, 2. 5 weeks after she went in for severe OCD refusing to swallow...anything...food...water...meds. We went from IV to a nasal feeding tube to now a G tube put in last week. Along with the aversion to swallowing, now an aversion to speaking. Mood swings that could be med. induced. High prednisone working towards a taper. She is essentially functioning like a 2 y.o. needing help with everything. On Valentine's Day in the early hours, she popped out briefly...lucid and conversant for the first time in months...we still know she is "in there".

 

She is now on pred, azythromycin, Zoloft, Ativan and finally we had her first near normal ASO titer yesterday at 240.

 

Just an update on her treatment, hoping to give guidance and support for others. We have a long journey ahead...with the primary goal of getting her to eat and drink again. Of all the possible OCD behaviors, this one is extraordinarily difficult.

 

Best wishes to everyone. Will check back soon. My only advise continues to be to get a full physiological exam for your child if you cannot get control of the exacerbations.

Edited February 28, 2013 by SurfMom

[Dedee]

I am so sorry for what you are going through. That must be so hard. It's great that you are so devoted and have your daughter immediately in the right treatment. You are great parents. My thoughts and prayers are with your family. Keep us updated.

 

Dedee