I took my son (diag aspergers) to the pedriatric neurologist yesterday figuring they would do an EEG or some other testing ( a year or so ago his old psychirist had him on major meds) to see if there was something more then what I know. Well I sat in that dr. office and answered all their stupid questions for over an hour to be told yep he has autism and that was it? I mean was I wrong to expect more??? Duh I know my son has autism. I guess I am frustrated and feel that no one wants to help us. I know (in our search for answers) the ped neuro...didn't do much except help with seizures and migraines....it was the ped psychiatrist that helped with the meds, therapies, etc. IMHO I think the ped neuro would've been a big waste of time if I had went in for actual help from him. The ped psychologist (did IQ test) helped some so that we knew where Payne's weaknesses academically were. Did that make sense or answer the question? Neurologists are what I call "mechanics of the brain." Their interest is in the way the brain physically works. They are literally BRAIN DOCTORS. Autism does not affect the structure of the brain in any way that medical science can help. However, it DOES affect the way the MIND works. The mind is not physical, so a neurologist's bag of tricks does nothing to help with the MIND. That's up to a psychiatrist. Psychiatrists can medicate, they can recommend or deliver counseling, they can recommend AGAINST medication. They can point parents toward other professionals that help with the mind. The truth is that autism is NOT a medical condition, it's a DEVELOPMENTAL condition. There are some medications that help with some symptoms that some kids have, but there are NO medications that help with autism, itself. No operations. No eegs that can "see" autism. So neurologists are really for relief of certain co-morbid disorders like Tourette's or ADHD or seizures. They certainly CAN recognize autism and diagnose it, but they have nothing in their bag of tricks to get rid of it. Research shows that, at this time, only educational intervention is shown to have permanent positive effects on autistic symptoms. Medication can help with some of the surrounding issues, but not with core issue of autism -- our kids have an essentially different way of thinking!
Just wanted to mention a couple of thoughts that came to mind, having seen more specialists than I care to remember when it comes to Zachary.
When you first met the neurologist, did you make it clear what it was you were needing help with? Sounds silly, but specialists need to know exactly what you are looking for, or they will head in the wrong direction.
It sounds like all he did was rediagnose your ds with aspergers, instead of answer the questions you came to get answered. Maybe I'm wrong, but it seems what you wanted was to rule out any medical reason for your ds's behavior, above and beyond aspergers.
At the onset of the appt make sure you tell the neuro yr ds has been diagnosed with aspergers, but his psychiatrist that has been treating him has concerns that more may be going on. As an example behavior problems can often be precipitated by subclinical seizure activity, and it would have been prudent to order an eeg to rule out that possibility.
From experience the more written background you take with you to an appt with a new specialist, the more help you will receive. Especially helpful would have been notes from the other dr with his concerns stated.
The other posters are completely right, most neuros have little experience dealing with autism and aspergers, their expertise is in seizures and structural problems.
Zachary's neuro is is charge of his medical care, but that's only due to his seizures, he has little interest in autism.
Good luck.
I know here too that our neuro sticks to the seizures. I've read so many times that neuro's diagnose autism etc, but not in our case...she sent us to neuropsych for that...and then from there we were sent to the psychiatrist for meds...it's a lot of running around and appts, and I get frustrated sometimes, but I guess I feel better knowing that each doctor is doing their parts in what they feel the most comfortable.
Were you looking for them to rule out something? Or maybe there is more than just autism presenting? Sometimes you have to be straight forward with doctors and tell them exactly what you want them to do.
Sorry it didn't go the way you hoped.
Sorry that you didn't get more out of meeting with the pedi. neuro. My ds also suffers from seizures and that is really where she focuses her energy.I'm sorry you didn't get what you needed out of the appointment. It's possible that the neurologist may have been following official guidelines.
Here is the extra testing that is officially recommended:
For every child where developmental delay is suspected:
Hearing test - "a formal audiologic assessment should include behavioral audiometric measures, assessment of middle ear function, and electrophysiologic procedures using experienced pediatric audiologists with current audiologic testing methods and technologies."
Lead test
Further testing only if indicated:
Genetic testing: specifically "high resolution chromosome studies (karyotype) and DNA analysis for FraX, should be performed in the presence of mental retardation (or if mental retardation cannot be excluded), if there is a family history of FraX or undiagnosed mental retardation, or if dysmorphic features are present (Level A). However, there is little likelihood of positive karyotype or FraX testing in the presence of high-functioning autism."
Selective metabolic testing (Level A) "should be initiated by the presence of suggestive clinical and physical findings such as the following: if lethargy, cyclic vomiting, or early seizures are evident; the presence of dysmorphic or coarse features; evidence of mental retardation or if mental retardation cannot be ruled out; or if occurrence or adequacy of newborn screening at birth is questionable."
EEG - "
Indications for an adequate sleep-deprived EEG with appropriate sampling of slow wave sleep include (Level B) clinical seizures or suspicion of subclinical seizures, and a history of regression (clinically significant loss of social and communicative function)"Other testing does not yet have enough evidence to prove its clinical utility at this time:
Recording of event-related potentials and magnetoencephalography
Clinical neuroimaging (even in the presence of megalencephaly)
Hair analysis, celiac antibodies, allergy testing (particularly food allergies for gluten, casein, candida, and other molds), immunologic or neurochemical abnormalities, micronutrients such as vitamin levels, intestinal permeability studies, stool analysis, urinary peptides, mitochondrial disorders (including lactate and pyruvate), thyroid function tests, or erythrocyte glutathione peroxidase studies.
Source: American Academy of Neurologist's "Guideline Summary for Clinicians: Screening and Diagnosis of Autism."
http://www.aan.com/globals/axon/assets/2605.pdf
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