NIH Study Day #1

Today was my first visit regarding the new study for Nate.  The study is with the NIH, so I have to say that I was a bit nervous driving down around DC after what happened at the Naval Yard this morning.  I needn’t have worried, as NIH is basically a medical Fort Knox!  I find that extremely comforting as some of the research that occurs is not appreciated by more conservative groups, and I can see that they could be a target in those cases.  The only other time I visited the NIH was for a job interview about 2 years ago.  It was during that horrible period when both boys were just diagnosed and we were scrambling to figure out and provide what they needed.  I had this brilliant idea that I should work weekend option and interviewed for a job there.  When I stepped back and thought about it I realized that since both boys would be eligible for early intervention programs that were 5 days a week, working weekends would actually be counterproductive.  Anyway, it was much easier to get onto campus as a potential employee than as a patient.  To get to the appointment I had to drive to a security check point where I had to open all doors of the car as well as the trunk, and the car was searched.  While this was going on, I was taken to the security building where I went through a metal detector and had my driver’s license scrutinized and scanned.  After this I was given a badge for the day.  When I got to the clinical research building I went through further security.  And for those of you who saw my comment on Facebook- I have to say that I truly was disappointed that with this level of attention to detail I found no toilet paper in the public bathroom.  Really??  Ha

Today was the parent interview portion of the screening.  When I drove in today I was seriously questioning what on earth they would have left to ask me as I filled out 2 written assessments and 15 online assessments before the appointment.  This took hours.  But somehow, we managed to fill up three and a half hours with even more questions this afternoon.  My migraine is trying to make a comeback.  These researchers are far and away the most friendly I have encountered in my travels of the last 4 years.  Things were presented in a very conversational format, not just question, question, question.  I know for a fact that the assessments we did today were the exact same ones I did for the SEED study back in May.  I know because today’s researcher used to work on the SEED study and told me.  She knew the developmental pediatrician who diagnosed Nate personally, as well as the primary researcher on the memantine study Jack is currently enrolled in.  All of these things definitely gave me a greater level of comfort.  I won’t go so far as to say that I “enjoyed” doing this interview, that would be stretching it, but it was the least unpleasant one to date and I didn’t cry.  That’s a big milestone for ME!

This is how structured the NIH is.  Today I signed consents- but not for the study.  I signed consents for the assessment to determine if Nate is eligible for the study.  If he is eligible then we will go through the second set of consents.  I have never been through this type of process, but I believe that since it is through the government all I’s must be dotted and T’s crossed even more than usual. 

My brain is fried for sure.  The next step is the actual assessment of Nate, which is next Wednesday morning.  No matter what way you slice it, watching your kid struggle in a testing situation is awful.  That screening will honestly just “confirm” the autism diagnosis, which sadly is a sure thing.  So they already broached the subject of the third screening step, which is a sleep study- a 2 night sleep study, in which Nate and I would be inpatient in the clinical center and Nate would have a continuous EEG.   I would normally kill to have that kind of one on one time with Nate, but contained in one room?  With a gazillion electrodes?  Eh, not so much.  Here is the best part of the study screening- all clinically significant data gathered, whether assessment results, lab results, or EEG results are shared with the parents.  So if Nate shows any seizure activity on the EEG we will be made aware immediately and actually this would exclude him from this particular study.  To date this is one of the few stones we have left unturned.  Nate does not have any visible seizures, but seizure activity in people with autism is actually quite common.  Just being able to have EEG data from such a lengthy period of time is worth the inconvenience of the rest of the screening.  In other words, all systems are go.