Update on our 1st neuro visit---

smiling76 · July 2013

So we had our neurology appt last week--and thank you to those who posted your experiences because that is exactly how the appt went down. I was shocked though to see that they were not going to do an MRI-not that I was thrilled with the idea, but thought perhaps that would give us "answers". We went to a reknowned pediatric neurologist at a children's hospital in Chicago- so I was happy to go to him but afterwards feel like he missed something.

Basically he tended to agree with the school speech path that said speech apraxia-however, he thinks perhaps there's something more with that--but said for insurance purposes so they would cover the visit would put that as a dx. However, basically recommended behavioral therapy for him. I have to say--he was pretty bad at the appt but that's because the appt was nearly 2 hours in the smallest room I've ever seen!! I brought tons of stuff but he's a little guy who wants to play. But by no means would I say he was hyperactive. He did mention possibly ADD but said that woudn't be diagnosed right now anyways.

So essentially I left with nothing except to continue with speech therapy (which at this point we only get in school becuase our f-ing sucky insurance won't cover anything except restoring speech) and keep checking behavior. Said he has a hard time self regulating-which I already know--he gets some OT in school too.

I feel immensely guilty about not putting him through speech therapy over the summer now---like HORRIBLY guilty. I should have just paid out of pocket because now looking at our physical therapy bills that just came through (he has an immature gaite and some fatigue issues)--- we could have just paid for speech out of pocket and it would have been cheaper than what insurance covered for PT.

I just want to get help for DS1 and was hoping that the neuro would give us some answers--but it really didn't. I'm so emotional and overwhelmed right now. I don't even know where to go for help for him. The school is pissing me off and when I ask for more OT they basically say they give what they can for him--they basically pull him out whenever he needs a "break". But I don't think that'll be the case when he gets in to developmental kindy.

smiling76 · July 2013

Thanks Auntie!! I really appreciate your input. No, he didn't collect any info from teachers or therapists to come up with his ADD/ADHD behavioral issue dx. It was purely what he saw in the office that day--which although my son does sometimes react like that, I feel like he kind of acted like any other 4 yr old would have in a small office for 2 hrs. He was purely bored and it was morning so he had energy. Having said that, he's not an angel--and certainly has his behavioral issues--but I do think a lot of that is self regulation and sensory as opposed to ADD (at this point) but who knows. I'm certainly not opposed to anything but just want to get him help.

So do I literally look up "behavioral therapist"???

funchicken · July 2013

I had similar thoughts to yours about the room size and lack of activities when we had our Dev Pedi appt. I thought DD did amazingly well being stuck in a room with me and the absentminded professor for an hour and a half. The dev pedi told me her gut feeling was that DD has ADHD-inattentive type. One really helpful thing that she did was point out a few things that DD did during the appt that an NT child probably wouldn't have done that pointed to ADHD. She also described how an NT child might have behaved in those instances.

I know how it feels to hope for answers and leave feeling like you didn't really get the clarity you wanted. It's a process. Just know that you're doing everything you can for him right now

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Update on our 1st neuro visit---

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