The sequel...Deja vu

And just like that, we are back again.  Audra has been readmitted to the Medical/Behavioral Unit at CHOP. 

She did well for about the first 7-10 days after being discharged on April 11th.  When some of the concerning behaviors started showing up again I contacted the psychiatrist who had worked with us in the hospital and she managed to squeeze in an appointment to see Audra the same day she had her nephrology follow up visit.

And, oh the follow up visits...there have been lots:

Seating clinic:  she was evaluated and fitted for a medical stroller, now we pray the insurance company approves it so that we don't have to appeal

Urology:  continue the prophylactic antibiotic to prevent UTIs and will plan for a repeat study to assess her kidney reflux and discuss surgical options at her next visit...unless she has another UTI before then

GI:  plan to try to advance her G-tube feeds once all her tummy troubles settle down, still considering additional scopes/testing to evaluate her pancreatic function

Behavioral Health:  unfortunately the didn't feel they had any services to help Audra because she required physical hands-on care to keep her safe and their staff are not trained or certified to do that (Audra was literally jumping off chairs and trying to climb out the office window during this visit, so I'm not surprised that she scared them off!)

Nephrology:  continue the clonidine patch for now and monitor her blood pressure at home

Psychiatry:  increased one of her behavioral meds and added a supplement that has been known to calm irritability associated with autism--something Audra hasn't officially been diagnosed with yet.  And although she does show some signs of it, I am not convinced.  But right now I am willing to try just about anything to get her back to the "old Audra"

Audiology:  at the visit it was noted that her hearing aids needed to be sent in for repair...again!

Nutrition:  By this visit Audra had lost some weight but she was just coming off of 2 days of being zoned out, sleeping and not eating much after 2 days of being hyper and agitated (and probably burning off every single calorie as soon as it went in).  Agree with GI's plan to advance G-tube feeds when able

Neurology:  Audra was super ridiculously wild at this visit and her neurologist was concerned for her and my safety.  We discussed re-admitting her but in the end decided to try giving her Ativan around the clock to see if it would calm her.  Audra also had blood work done to see if she has an autoimmune encephalitis that is causing these severe behavior swings.

With all of these visits Audra missed quite a few days of school and she was also sent home one day each week for low grade fevers, which meant she needed to stay home the following day also so that she was 24 hours fever free before returning to school.  Plus she had one day of vomiting that I kept her home from school for.  So in the past few weeks she has only gone to school a handful of days. 

This past Friday and Monday they kept her in school all day despite her very challenging, dangerous and disruptive behaviors.  We had started the Ativan on Thursday but still weren't seeing an effect from it.  On Tuesday she threw up at school so I turned around on my way to work and drove back to pick her up.  Once we got home I checked my email and there just happened to be an email from her neurologist asking how Audra was doing with the Ativan.  After a few emails back and forth, detailing each day since her appointment with the neurologist 5 days ago we agree that Audra needed to be admitted to have her medications managed/adjusted.

After a long 8 hours in the ER (and one dose of benedryl that put her to sleep for 5 hours!) we finally made it to our room in the MBU at about 10:00pm.

In fact it was the exact same room that she was discharged from with the exact same nurse that discharged her exactly 4 weeks ago!  Talk about Deja vu !!

It was a long night last night...Audra woke up once we got her to the MBU and she was still quite agitated and aggressive.  She ended up only sleeping from 2-5am, which was definitely not enough sleep for this tired mama! 

Today we met with many familiar faces, all people we knew from her last admission: doctors, nurse practitioners, psychiatrist, nurses, and 1:1 sitters.  Right away the psychiatrist said that Audra's pattern of behaviors is not consistent with a solely psychiatric cause.  So they will be evaluating her for medical issues that could be contributing to her constellation of symptoms: behavioral issues, developmental regression, hypertension and facial twitching.  The bloodwork she had drawn last week to look for autoimmune encephalitis is still pending.  They will be sending more bloodwork to look for signs of an adrenal tumor (pheochromocytoma), rare and unlikely, but they will rule it out since they considered it during her last admission also.  Neurology came by and their plan is to stop the Ativan and start her on Depakote (a seizure med).  It is used to treat conditions other than seizures, and for her they hope it will calm down her abnormal EEG spikes which might in turn improve her sleep which could help her behavior issues.  Also on the list is to have the dentist come see her and look at the new teeth that are coming in behind her baby teeth despite the baby teeth not being a bit loose.  She had the same thing happen in the fall, so the dentist extracted 5 teeth to make room for the new ones to come in. 

So that's the update for now.