Monday, 6 May 2013

A Wild Week

This is going to be one crazy week for our household.  We already had quite a bit going on- John has to work late 3 nights, and we are attending the last portion of the SEED study for Nate on Wednesday up at Hopkins.  It goes from 9 to 5 and will involve assessments of Nate, blood and hair samples from Nate, John, and me, and questions for me and John as well.  Nate will also have an extra tube drawn for the study where they will mix his blood with mercury and look for an immune reaction.  So that's already a long week.  Next Monday, I am going on a field trip with Jack's class- to a park, with water, and canoes, and 5 and 6 year olds.  I do not have the time off from work available to do this- but I was asked by the teachers to go and look out for Jack, so that is what I'm doing.

Then the phone rang this past Friday morning.  It was really good news- however it was also very overwhelming news as well.  About 6 weeks ago, an acquaintance made me aware of a nationwide study being conducted on school aged children with Asperger's and Autism.  It is an investigation of the use of a medication called Namenda in kids with these conditions and tracks improvement in focus, social skills and over all behavior.  This drug was initially labeled for use in Alzheimer's patients, so it is already approved for safety, this is just a new use.  It has been being studied at 108 locations nationwide.  The idea of using this medication in Jack is exciting because of how ineffective the traditional approaches were for him- they caused major sensory issues which became intolerable.  I was thrilled to hear about this opportunity, and the only negative I could see at the time was that Jack needed to be 6- no problem, that was coming in a month right?  Not so fast- the study was closing on April 30th- 6 days before his 6th birthday.  Seriously?  I had already spoken with the boys' autism specialist about this issue and he was willing to try Jack on the medicine off study, but of course I would much rather he be closely monitored if possible.  The phone call last Friday was to inform me that the study had been extended by 1 week.  So Jack is in!

While this is wonderful, it is also a rush to get him through the evaluation process by the "deadline" to start the medication which is the end of the month.  This requires no less than 4 appointments at Children's National Medical Center in D.C.  First one was today- and it was for me only- to sign consents.  Jack and I will go Thursday for his evaluations, then on the 21st I will go for a parental interview, and then if all goes well, he will start the medication on the 24th.  It is a long commitment, possibly a year and a half.  And we will have to go down to D.C at least once a month.  But if it helps him, it will be worth it.

In case you're keeping track- that's a total of 3 days away from work for kid stuff in one week.  John asked about summer vacation planning today and I had to laugh.  THIS is where my vacation time is going.  John would be willing to split the study trips, but we can't because a bunch of questionnaires have to be filled out with each visit and the investigator needs the respondent to be one consistent caregiver.  Understandable, but well, blah.  Keep your fingers crossed for Mr. Jack.

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