Three weeks, three ER trips

Yesterday we were back at the ER.  After taking Joaquin to school, David still hasn't made it back to school, when I checked on David he reported he was feeling "funny." While checking on him, he began shaking and crying and stating that his nose was shrinking.  He got really scared and and started panicking.  He also became afraid of his angry birds poster in his panic so he made me take it down.  He was actually having a muscle spasm in his face, but it was very painful and it was over the bridge of his nose so it also felt very strange.  During the several more he had throughout the day he reported feeling like his nose was going into his head, fearing he was turning into an alien, fearing he was turning into a skeleton, fearing he was turning into a monster. He also had an increase in his shaking and tremors and had some focal tremors,  as well as short full body tremors that we were concerned might be focal and mini seizures.  So off to the ER we went again.

Once there he had a few more episodes.  They started blood work and observed him.  The ER doctor also consulted with both the neurologist and the psychiatrist. The doctors feel that David is still having dystonic  symptoms.  Unfortunately we also found out that David has not had any change in his Depakote level from two weeks ago when they reduced his medication.  While Depakote is not the medication that is causing the dystonic medication reaction, this information is very important for two reasons; one his Depakote level is still too high, and two his body does not appear to metabolize his medication  in the same way as most.  By the latter comment I mean, the doctors expected to see a change in David's Depakote level by now.  We were told it generally takes 1-2 weeks to see the Depakote level stabilize, therefore they would expect that his Depakote level would be within a normal range by now, instead of still 30% above what it should be.

The other reason this is bad is because despite stopping the medication that is causing dystonic reaction is going to take time (probably a week or two) to get out of his system.  This new information about how he is metabolizing his medication suggests it might take much longer... Not good.  For now all we can do is wait and hope that the medicine leaves his body quickly.

As for seizures, there is still concern that seizures are underlying. Tomorrow we go for a short EEG and an MRI. We are hopeful to have some answers with regards to the seizures after that.  If not, our next test will be a 24 hour EEG. David will also continue to have regular blood work to monitor his blood levels.

We want to thank everyone for your love and support through all of this.  It is a huge help to us to we have so many people supporting us. XO