So upset after visit with neuro

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Thanx for all your support!
I feel much, much better after seing the pdoc!
She told me he phoned her after our appointment and told her he doesnt see what she see! Think he felt a bit worried after being so rude to us! Our pdoc and this neuro have been working together for YEARS.....
She told him nicely and firmly that she appresiated his feedback that nothing mager was wrong on the MRI! She explained to me regarding the EEG....this what he should have done: that yes there is abnormality in the right temporal lobe, bot not at the extent that it pushes over the epilepsy threshold and cause a full blown seizure.....as my son reach his teens it might develope into epilepsy OR will become better.....
She then also told him she is 100% sure of her diagnosis of PDD and possible AS, that this is her field of speciality and she would like him to respect that!
She thinks he just looked at the behaviour and made assumptions without thinking what caused the behaviour....
She told me that this neuro tried to convince her for years that her child has ADHD...that he got so frustrated with her that he once stamped his feet .....he wanted her to put her child on Ritilin....she persisted that her daughter only met 2 of the 3 criteria of ADHD and will not give her meds! Her daughter is a succesful grownup now!

lovelyboy

I am glad you have at least one good doc to rely on. I found this article interesting and it seemed somewhat on point with your experience with the neuro doc.

http://www.washingtonpost.com/blogs/ezra-klein/post/when-doctors-lie/2012/02/08/gIQAH8CfzQ_blog.html

WOW. So, I'm not the only one with an ASD who's had a terrible experience with a neuro-doc! (For the record, it was a neuropsychologist for me, not a neurologist). When Asperger's was brought up, he immediately dismissed it (after about 10 minutes of knowing me), saying that "people with Asperger's look like they're 'not really there'", and other such nonsense. He didn't even do the proper tests that I've read you should do when looking for AS - he just did this ridiculous "facial expression" test, in which he made exaggeratedly angry, sad, and happy faces and asked me to identify the emotions. To top it off, he screwed up a bunch of details in the "history" part of his report - details that I know technically don't matter, but make me think "if he screwed THAT up, who knows what other, more important things he also screwed up?" He was impatient and dismissive all the way around (and he blamed it on his ADHD). On the other hand, my psychologist and psychiatrist, who have known me for years now, do believe that I have AS (and the former even suggested it to me before I brought up my suspicions to her!).


I'm so glad to hear about your pdoc visit - thank God you have her! I bet you felt so much better. That must suck for her, though, that she has to deal with this guy all the time, and she can't cut her ties with him for professional reasons. (And she can't even complain about him freely, because that would be unprofessional.) If I were her, I would hate that guy!

Just because a doctor is supposedly an "expert" does not mean they are the right doctor for you or your child. The right doctor is one you feel comfortable with even when they tell you things you don't want to hear. That doctor should have explained why the EEG was nothing to worry about. I worked with a group of neurologists for 2 years and know that not all abnormal EEGs require treatment, sometimes it's a wait and see if anything happens and maybe do another one in 6 months to see if there are any changes. I have a feeling you would have accepted the nothing to worry about statement if there had been a rational discussion about it but that doctor insisted on being an a##.

They have found that some Neurologists can find small changes in the brains of Autistic children/people and they are doing a scan where they show pictures and see how the brain reacts to these pictures. They did this with Temple Grandin and found several very obvious changes in the way her brain reacts to stimuli.
Anyway, I think you were going to see if your child was having seizures werent you? Anyway, it is true that you can not diagnose Autism with an EEG and even some types seizures can not be detected unless it just happened or is happening. My daughter used to has what they call absence seizures, they are like mini seizures, and she still has them from time to time but not as bad and they never showed up on the EEG. I know she is having them and I had them too when I was little and my 19 year old did as well. She used to be a bit more obvious about it, she would lower her head and drool with this odd stare. Once her therapist came running to get me because Maddy was scaring her because she was doing the head down, drooling thing but her eyes were moving back and forth very quickly. It took a long time to get he in to see the Neurologist who basically told me that if she does it for more than several minutes to call an ambulance or if she looses consciousness. We just keep and eye on her and make sure that it does not get worse. Obviously it is something that is going away.