I'm so tired of the BS

mommyof4boys

We've been going to a developmental pediatrician for Matthew for 2 years now.  We're no closer to finding our "why" then we were when we started.  We were told that he possibly had ADHD but they didn't want to label on a kid who was not quite 4. 

We did genetic testing as Chris has a genetic syndrome and their delays are similar although Chris' are more severe.  It was negative, or so we thought, now we're being told that there could have been user error and he could very well be positive and we didn't know it.  We were told that he had a tethered cord and we did the MRI to rule that out; it's negative.  I think he has the genetic syndrome AND Aspergers.  What we know about the syndrome is that it is often a comorbid with autism.  We had a meeting last week with the school and the teacher said she saw exactly what I was saying with my concerns.  My concerns are a high vocabulary, poor grammar and articulation.  The articulation is improving.  He has poor motor control, balance, gait, walks either shuffeling his feet on the floor or on his toes if he has no shoes on.  He has poor social skills.  He is very social but to a fault sometimes.  Social ques are difficult for him.  He doesn't understand when someone may be playing or doing something not on purpose (the example I can give is that Jon took his hat off and it brushed agains't Matthew's face.  They sit on the same seat on the bus.  Matthew took that as an attack and started hitting Jon.)  He takes everything so literally and is very concrete (I know that 5 year olds are to a degree).  He perseverates on Mario and Wii/PS3.  He and enocpresis  and frequent accidents.  He's anxious.  He's afraid of the toilet and covers his ears as he flushes; I can't use the vaccuum in front of him. 

They want to medicate him.  I have no issue with medication.  I wanted to try other approaches before medicating my 5 year old, though.  DH said he refuses to medicate. Period.  That is another post. 

We were so very uphappy with the last developmental peditrician we saw that we decided to NOT go back to them.  Everywhere has a year waitlist.  I'm tired of the bullshit and the runaround.  Everyone agrees that there's something neurological, something not "typical" yet no one can tell us what that "something" is.  What more can I do?