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|Thu, 11-01-2012 - 11:28am|
I need some guidance here. Yesterday, DS5 had his neurology appointment. We LOVE this neurologist as he takes a whole body approach to autism. DS is very high functioning autism. He has responded very well to nutritional supplements suggested by this particular neurologist. Well, yesterday we were told there is a neurologist shortage right now (one retiring, one transferring, etc), so the hospital has decided our guy needs to focus on higher priority issues (such as seizures). He said this was our last visit with him. He is referring his autism patients out to behavioral psychiatrists and developmental peds.
I'm devastated. First off, I've no idea what behavioral psychiatrists do. My understanding is they put kids on meds and do counseling. The peds in our area have been HUGE disappointments. I finally found a regular ped who does not get in the way, so I am loathe to change her out. But she is honest enough to say she knows very little about autism and follows my lead in this area. In the ped. group is a developmental ped, whom we have never seen. This neurologist has been the only one in our interactions to approach autism through nutrition and approach the treating the body as a whole. By definition, wouldn't we need to keep a neurologist on our team?
I just don't know what to do next. On one hand, yay! DS is not a high priority issue. He is doing really well. He still has motor planning issues and is behind socially, but he's in a good place right now with all the supports we have in place. On the other hand, it terrifies me to not have a neurologist overseeing a neurological developmental issue (autism).
The other part that bothers me is that DS is on iron and other supplements which this doctor normally monitors. He's been low in several things for quite some time. We've increased his dosage of things like iron to see if we can get those levels up. NO bloodwork this time for follow up or to see if the higher dosages are working. He said to take him off the iron and see if we see any behavioral changes. If so, put him back on it. Are you KIDDING ME?
DS asked if he outgrew this doctor. We told him yes. So he thinks this is all a great thing and he is the most awesome creature on earth.
I've reached out here in the past when our OT kept 'graduating' DS. The board advised we find a new OT to specifically address the motor planning issues. This board is also where I got emotional support and guidance for vision therapy. Can I call on you again for this one? I don't know which direction is up.