Genetic testing results appt.necessarily make a difference. I'm curious about the $2,100 diagnosis. I have heard this before--that evaluations are very expensive in some cases. My son, though, has been evaluated by three different clinics, and each time we only had to pay our insurance copay. And we have an HMO! So is this something that is only a problem in some cities/states, or are different insurance companies the problem? You shouldn't need any kind of diagnosis to get an IEP. The school district will do their own evaluation and decide what your daughter's strengths and weaknesses are. You don't get an IEP specifically based on a medical diagnosis (i.e., you wouldn't get one kind of IEP for Asperger's and another kind of IEP for conduct disorder), so none of that matters. The goals of the IEP are designed to make your daughter successful in school. It's individualized, so even kids with identical medial diagnoses don't have the same IEP goals. How old is you daughter? Has she ever been seen by a developmental pediatrician or a pediatric neurologist? Those are the doctors who generally have the most experience with autism and related disorders. Genetic testing seems like and odd choice if you're trying to diagnose autism. What part of the country are you in? Wow -- chromsome 16 info is VERY NEW! Small wonder the doc was vague ... pingu, no a medical dx in our case was NOT needed ... which is a good thing, b/c I could not have gotten one from anyone I have seen so far, and it would cost me 2100 out of pocket to go the GOOD diagnosticians in town. However, I think camjen1 sought one, specifically BECAUSE she was denied services ... no? pingu I suspect some of it in our case is local politics ... and of course, our insurance, which covers no developmental delays but will cover autism. We have two local academic medical centers that have developmental clinics. One is a children's hospital that WILL NOT dx HFA. They are "philosophically" opposed to it ... and the atmosphere all through the place is absolutely atrocious. As are the attitudes of the psychs they train. And ... there is STILL a 12 MONTH WAIT to get in. We use them for other stuff ,and have been met with frank cynicism regarding T's dx. I avoid brining it up and STILL get remarks -- and SMIRKS. Their attitude is those silly school marms do not REALLY know anything. The other is a more general medical center, which has a better ped psych dept., at least for working with high end kids. They have a SIX MONTH wait. They do a 4 hour evaluation, and mail you a report with recommendations ... they are the $2100 one, and as I said the insurance does NOT cover it. But ... at LEAST, they "believe in" HFA! foxl: what's the closest major university to you?I am in Kansas City so Univ. KS is one, Univ. MO KC is another. We actually have got 4 medical schools in the city. The other two are osteopathic and chiropractic. Yeah. One reason we need legislation to provide coverage, I guess. However, all it takes is one opinionated person to hold a place back ... I just cannot imagine the arrogance it takes to see a kid for a physical illness, for perhaps a half hour per YEAR, and to presume to know there is nothing Developmentally wrong! T is doing great without a medical dx though! I have been pretty satisfied. So it sounds like the problem is your insurance, which is a shame. In mostcities, the universities are the best places to have a child evaluated. They have long wait lists, but it's usually worth it.And you've already tried The Center for Child Health and Development at U of KS? NO they are the ones that said $2100!!!
This being the MRRC at KUMed in KCKS, not the Lawrence folks. (CCHD) at KU Medical Center diagnoses and develops treatment recommendations for children with developmental disabilities. Our teams provide assistance to families, teachers, doctors and others who work with them. Professionals, along with the family, develop a thorough understanding of the child’s strengths and needs. Many children and youth seen at the CCHD present developmental and/or behavioral challenges that are often puzzling to families, physicians or teachers. The goal is to accurately diagnose the problem, understand the reasons and recommend the most effective treatments. Call 913.588.5900 to talk with our Intake Coordinator and/or Social Worker to determine which clinic is the most appropriate for your child. I did that already .... completed all paperwork, and THEN found out our insurance does not cover the visit. I know someone who works there, and had a long chat with her, actually. As far as that goes, I used to work in the Smith Center, long ago ... camjen, I am sorry you got an ambivalent diagnosis. Those are the hardest things to deal with -- the unknown ones. Have you researched chromosome 16 any further, online? I would think this would be more important for your daughter's genetic counseling, later -- perhaps she needs to factor it in in making reproductive decisions. As far as providing any "official dx" I do not know that any professional would provide a dx if they do not have confidence in their clinical observations, to substantiate it. Which means ... you probably need to see someone with more expertise in autism, and present her genetic info to them, as well. THEN you would get a dx with the school ... or perhaps the genetic info WILL nonetheless be enough for the school? I am sorry though ... it gets so $%!#@ EXPENSIVE, in terms of time, and money! I just wanted to update some on my daughters genetic testing results appointment. My daughter had several blood work done including micro array analysis back in Jan. Yesterday was the day that we met up with the doctor to discuss the results. What a disappointment AGAIN!!! I had expressed disappointment a few weeks ago when the psychologist diagnosed my daughter as having conduct disorder and mood disorder. My daughter's pediatrician, therapist and the doctor who medicates her all disagree with that diagnosis. They have all considered Aspergers while the psychologist ruled out Aspergers. My daughters test came back with a defect on chromosome 16. The doctor explained to me that this was tightly linked to Autism. She also explained that they are still researching chromosome 16 and they find stuff but just don't know what to do with it. Okay weird but she was the doctor! Then she states she wants to see her in a year to see how things are going. HUH?? A year??? It's almost as this doctor did not want to diagnose my daughter. She had the results, knew that autism was tightly linked to my daughters result but yet failed to go a lil further and say it was autism. My concern with not having a diagnosis is and IEP. Don't you need an actual diagnosis for an IEP. I rather her have an IEP for Aspergers then a conduct disorder. Then on top of that I applied for SSI (which went well suprisingly) to help fund some things this Summer and get her into a meal program but if I don't have the diagnosis then she'll get denied. Anyone suggest anything? I would appreciate any advice. :) No I am actually not that eager to get a dx. My school believes their own dx. and so do I. Perhaps someday the time will come, but it is not now. And I have spent far more time on understanding my child than a specialist would ... and so have her teachers. Can you tell I am feeling a little alienated from her docs? I know about DSM .... definitions seem to be a lost cause. I have spent a lot of time distinguishing among them, as have most of us here ... BTW, the CCHD offers a 50% discount if you pay at the time of service. $1,000 is obviously still high, but it's an improvement. There's also the Wichita State University Child Development Center, but maybe you've tried them already. And just to clarify, there actually is no such thing as "high functioning autism." It is not in the DSM IV, so it cannot be diagnosed as such. Nobody even agrees on exactly what is meant by "high functioning." Some say it just refers to the child's IQ. The medical evaluation is important, in my opinion, to get an accurate (and respected by the school district in most cases) label, and therefore better understand how to help your child. Although "high functioning autism" is not an actual diagnosis, there is a whole spectrum of ASD that any qualified developmental pediatrician or pediatric neurologist would be able to diagnose. [QUOTE=foxl] pingu I suspect some of it in our case is local politics ... and of course, our insurance, which covers no developmental delays but will cover autism. We have two local academic medical centers that have developmental clinics. One is a children's hospital that WILL NOT dx HFA. They are "philosophically" opposed to it ... and the atmosphere all through the place is absolutely atrocious. As are the attitudes of the psychs they train. And ... there is STILL a 12 MONTH WAIT to get in. We use them for other stuff ,and have been met with frank cynicism regarding T's dx. I avoid brining it up and STILL get remarks -- and SMIRKS. Their attitude is those silly school marms do not REALLY know anything. The other is a more general medical center, which has a better ped psych dept., at least for working with high end kids. They have a SIX MONTH wait. They do a 4 hour evaluation, and mail you a report with recommendations ... they are the $2100 one, and as I said the insurance does NOT cover it. But ... at LEAST, they "believe in" HFA! [/QUOTE] I know, I hate Children's Mercy for everything. I've never even tried to see their Developmental people, I'm just talking about "for everything else." The only time my ASD daughter was there for anything related to her autism was when she had her sleep deprived EEG. My older daugthers have had to go to the other clinics for medical reasons. |
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