Monday, October 27, 2014


B-man is supposed to see his developmental neurologist at Children's every 6 months.  He saw her in the Spring.  Ryan tried to make his next 6 month appointment at the end of that appointment but her schedule wasn't "open that far in advance".  So, I'm supposed remember to call and get an appointment when it gets close to 6 months.  The first problem is that I never remember.  Then when I do it's impossibly hard to get a hold of anyone.  If anyone from Children's is reading this: your new online/app system does not work.  It says that email requests for appointments will be handled in 24 hours.  I have yet to have my email request even handled.  I end up having to call someone. I hate calling people. Thankfully, Dr. Golla has moved from the general neurology clinic to the Center for Autism & Development Disabilities. CADD is not as busy as general neurology and I was able to get someone on the phone with the first call.  When you call general neurology, you get a voice mailbox which warns you not to leave a second message because you'll just be slowing things down.  Anyway, I got someone on the phone and was told Dr. Golla could see B-man in May.  MAY!?! That's a year between appointments.  I point out that he's supposed to be seen every 6 months.  We get a consolation prize - an appointment with a nurse practitioner.  I thought this would be ok because usually, the doctor pokes in or is around. I. was. wrong.

Facepalm designed by Edward Boatmanfrom the Noun Project
When we arrived at the CADD, the waiting room was empty.  Definitely different from general neurology.   We are taking back fairly quickly.  Also different.  We have to answer the now standard Ebola questions.  The medical assistant balked when I answer that yes B-man has had a fever and has thrown up lately.  His allergies are messed up.  His sinuses are draining and that causes him to throw up.  He coughs.  She asks if he will wear a mask.  I say maybe then I put one on too so B will keep his on.

When the NP comes in, she is a cheerful older lady.  Brennan doesn't want to answer her questions at first but then warms to her.  She has print outs.  One form to sign to ask the school to send his latest ARD paperwork.  The rest presumably his records.  She writes on them.  The computer is unused in the corner.  She asks about his sleeping habits.  She says some kids, more severely autistic kids,  take a medication to help them stay asleep.  I can't remember the name of the medicine.  It's not written on his check out paperwork.  She asks about school.  All standard stuff.  Do we have any questions?

Ummm yes we do! What about his past MRIs showing 'spots'?  Do we need to do another MRI to check on the spots?  It's been a year since his last MRI, are we the only one concerned with these spots.  Yes, yes we are.  She has no idea about the MRIs.  She'll have to ask Dr. Golla. She'll get back to us.

I ask, can you show my husband his MRI scans on the computer? He hasn't seen them.  She tries.  She shows us scans that don't look like the ones I remember seeing.  She doesn't understand my concern.  I can very clearly remember sitting in the room at the general neurology clinic with an intern looking at the first MRI and the second side by side.  Those pictures are done in slices.  They start at his chin and build up.  I very clearly remember seeing parenthesis shaped blank spaces on those films.  The ones we saw today don't look like those.

So either I remember incorrectly or we saw the wrong films.  I don't know what to think.  What I do know is that today was a waste.  The whole point of having a doctor is that someone knows you.  That you continuation of care.  Today we saw someone who had no idea who Brennan is or what our concerns are.  For that matter, I don't know that Dr. Golla does either.  But the problem is that there are very few developmental neurologists.  You kinda take what you get.  At this point, I don't if we need a developmental neurologist.  I need someone to look at B's brain scans and tell us about them.  What I do know is that I am frustrated.

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