How many doctors did it take to get a Dx

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Registered: 11-28-2006
How many doctors did it take to get a Dx
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Wed, 02-28-2007 - 1:42pm

Just got off the phone with Doc.......

I feel kind of empty, and sad for my son. He told me over the phone about the report he is typing up for the school, but as he has "Traits and personality Oddity's", he does not get the official Dx for Aspergers.

As a mother I know he has something on the Spectrum. I feel man, did I not tell this doc enough? Was I not clear enough? I mean how can he say his body bumping, and his eye rolling thing is a personality oddity?????

The school right now is freaking on me. The teacher called me and wanted to know about this report, because they don't have it in their hot little hands. This doc had told me 3 weeks ago that he would score everything and then get it to me within two weeks and today its going on 3 weeks, so I have been hounding him by phone because I really need this report. Even if its just for the Dysgraphia, he needs help.

And what am I supposed to do now about his thought disorder????? How about the times he just obsesses over money and business and thats all he talks about with the other kids in school? Now he won't get any social skills help without that Dx.

Right now the school wants to talk to me about retaining him, and I just don't know what to do. My husband did bring up a great point on them doing some standarized testing to see where he is at. It won't matter so much of the work he hasn't finished in class as to what he knows at this point. And I have a feeling he is learning, but just not putting it down on paper as he can tell me verbally every detail on Christopher Columbus or what they have learned in Science.

Anyway, how many docs have you gone thru?

Part of this post is also cuz I gotta let it all out. I'm trying to find a therapist right now, but when I ask for someone (for me) if they have a have alot of knowlege in Autism they get confused, like I have Autism, or I'm looking for a therapist for my boys.... Plus, there doesn't seem to be any in my area, and I might have to drive an hour to an hour and a half for one.

Big Big Sigh here....

Lainie

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Registered: 01-29-2004
Wed, 02-28-2007 - 3:22pm

Laine,
It took us only one physcologist, but all she does is this. This clinic is for diagnosing such problems only. Did you consider dysgraphia (sp?) where a child can tell but cannot write. My son has that. THis year we got him an alphaSmart and the first day he used that the teacher's comment was "Sravan looked like a big load has come off of him and he happily typed all the answers". Before that he used to transcribe the comprehension questions to the teacher.

Yes, you need a medical diagnosis for the school to offer support.

hugs and take care,
Anandhi

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Registered: 11-28-2006
Wed, 02-28-2007 - 3:29pm

Yes he definetly does have Dysgraphia, and that is the positive thing that has come from this dx, but he obviously has other issues going on that he needs help in, so thats why I still feel the frustraition....

Thanks, and I am not very hopeful that he will even get an alphasmart yet, at least that quickly, as the toopid teacher keeps on telling me he won't get one because their arn't enough funds in the district. But also because my sister went thru the dysgraphia testing thing for her son awhile back and someone pulled her aside and said it could be 6 months before her son got one and it might be in his best interest to just go out and buy one for him.

Luckily for him, he wasn't that bad off with the Dysgraphia and just needed some accomodations that seemed to help him, and it worked.

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Registered: 06-02-2004
Wed, 02-28-2007 - 3:51pm

(((Lainie))) I'm sorry that you (and your son) are having to go through this. While it only took one psychologist to dx my daughter as having PDD-NOS, it took 3.5 yrs and many doctors and tests to dx her rare genetic syndrome. I can understand some of the frustration that you're going through. We were lucky that our previous school district had a contract with a wonderful psychologist who specializes in ASD. Prior to his dx, we were told by all of Lily's ECI therapists that she smiled too much to have autism! What!?! Of course, at that point I didn't know much about ASD myself, so I believed them. Is there anyone in your area who could recommend a psychologist that works with children with ASD? We found out about Lily's psych. from several parents in the school district. Although the district was happy to refer her to this particular doctor, no one was allowed to mention him to us without us bring up his name first. Maybe there are some parents in your area that could recommend someone who has more knowledge about ASD. We did have to drive an hour and a half for her appt., but it was well worth it. The doctor spent 3 hours with Lily (and us) and sent us a 20 page report full of observations as well as practical advice on how to best help her individually. I hope that you are able to get some help for your son soon. Lily is only in preschool, so I can only imagine how much harder school issues can get once a child gets older and is trying to learn reading, writing, etc.

Amy~mom to Natalie & Lily

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Registered: 11-28-2006
Wed, 02-28-2007 - 4:55pm

Thanks Amy for your ideas. Actually a neighbor of mine said she has a friend who's son has Aspergers, so I might just find out who she went with. I think he was dx'd quite awhile ago tho, and I don't know if it was here in Visalia....

Lainie

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Registered: 03-26-2003
Wed, 02-28-2007 - 5:04pm

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Registered: 04-07-2003
Wed, 02-28-2007 - 5:50pm

I completely empathize with you 'cus I've BTDT! The pediatricians (first a large practice where dd & ds were seen by various docs, then single doc practice) always dismissed various concerns I raised over the years. It wasn't until 1.5 yrs ago when I wrote out a semi-comprehensive list of quirks that the pediatrician finally saw the bigger picture and said there might be some developmental delays that we ought to get checked out. Unfortunately, she didn't have anyone to point us towards for help.

Around that time I found this message board where I started to learn more about PDD and AS and began to suspect the kids had something like that. I spent HOURS and HOURS on the phone with insurance trying to find any kind of service providers who dealt with autism, developmental delays, etc. Almost all of the doctors turned into dead ends because none of them actually dealt with autism or children. We were thrilled that ONE therapist DID specialize in autism and, it turned out, was only 5-min from our house. Unfortunately, we didn't work well together, and I'm not certain that she had as clear an idea about autism as she proclaimed. The one thing she did tell me was that my dd definitely did not have autism but she might have something like NLD (non-verbal learning disorder). She also thought dd might have a form of schizoprhenia (family history of it) even tho' we didn't have any thoughts that she might. She was wrong on both counts!

When that relationship fell apart, I found the Kennedy Krieger Institute which specializes in autism. Although our insurance would only cover testing and no treatment, we got on the waiting list. Several months later I learned I could schedule an appt with a neurologist at Children's Hospital which I thought I'd do while we were waiting for Kennedy Krieger.

The neurologist at Children's Hospital told me, after a very brief interview with me and then the kids, that my kids were NOT autistic. I am not generally a crier, but I fell apart in front of the doc and bawled! I don't know if it was because I was so emotional or because the doc thought something else might be going on with the kids but he suggested we go ahead and get the kids tested to see what problems, if any, they might have.

The next day Kennedy Krieger Institute called (nine months after getting on the waiting list). Our health insurance had changed, and we discovered that KKI didn't take our new insurance, and we couldn't afford to pay thousands of dollars in testing for each of the kids. That was not a happy day. I felt like I'd run out of all options and no one was believing there was a problem, I couldn't find the right doctors, and I didn't have the financial resources to pay for anything without insurance.

After a few more months, we finally began our testing with Children's Hospital. It was hours and hours of filling out forms and answering questions in person as well as hours and hours of testing for the kids. Although the neuropsychologist was leaning towards PDD and away from Asperger's for dd, when the whole testing team (neuropsychologist, psychiatrist, language person, and someone else) conferred, although they waffled between PDD and Asperger's, they ultimately decided dd has Asperger's. I get ds diagnosis tomorrow, but I expect to get a similar diagnosis (he's more AS than dd in my opinion). They also said dd did NOT have a mood disorder or any form of schizophrenia even tho' she's moody, it's a feature of the AS, not something else (which I agree with).

In the written report, it said something like "mom seemed to understand the diagnosis and even seemed relieved to hear it." No kidding! It was the biggest relief of my life to finally have someone listen to my concerns, believe me, and tell me that they were seeing the same things I was!!!!! And now that there's an official diagnosis, we can start getting services to help her/them.

It has been interesting for me to observe a psychologist, neurologist, and neuropsychologist, as well as the pediatricians, all initially tell me that they didn't see any autism or necessarily even any PDD, yet a very thorough evaluation shows that the kids DO have it. I think that since so much of the dx is based on what info you provide the docs as well as what they see in the kid on a particular date, the dx can be hard to come by. If the questionnaires and oral interviews hadn't been so thorough, I'm sure our dx would have come out differently because I wouldn't have thought of even half of the stuff I was asked about. Even after the interviews, I'd later think of other things while driving in the car that I should have told the docs.

It is so terribly demoralizing to be told over and over that your child doesn't have the problems you KNOW they have. On the one hand you know your child has problems, but on the other hand, you start to doubt yourself when you keep being told by professionals that you're wrong. I kept telling dh that if it's this hard to get help in a major metropolitan area, how much worse it must be for people who don't have as many providers around them.

I'm feeling tremendously blessed that we were able to finally learn about Children's Hospital neuropsych dept where we could get such good testing done. I don't know what the answer is for others who don't have as many resources. I truly know your pain and wish I had better answers. I hope you're blessed with solutions soon!

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Registered: 11-28-2006
Wed, 02-28-2007 - 6:09pm

OMGosh hwife, I can identify with all of the emotions you just wrote about in your post!!! A few times today I even doubted myself and thought, maybe I'm just crazy, maybe I don't know what I'm talking about, but then I remember eveyrthing he does and go back to my gut feeling.

For 3 yrs I went thru 3 teachers, two administrators and my own husband telling me my son did not have Dysgraphia. I KNEW in my heart he did, and it was so frustraiting for everyone to look at me like I was crazy. And sure enough, he does have it.

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Registered: 11-28-2006
Wed, 02-28-2007 - 6:11pm
Thank you Tasha, you have reminded me to not give up! I almost did for alittle bit today. But not now. I'm gonna get back on my horse lol
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Registered: 03-26-2003
Wed, 02-28-2007 - 6:43pm

Lainie,

What did the neuropsych diagnose? Just the dysgraphia? How does he explain the meltdowns, etc. What you have explained definitely seems a bit more than a bit of an oddity.

GEEZ! I am not impressed with this guy.

Also on the school. There is no reason they need the docs report and since they didn't pay for it you don't have to give it to them if you don't want. Make them do their own assessment. They are goingt o have to for an IEP anyway. I don't know why they are waiting.

You are in Cali. He should already have been referred to an SST and started the process.

Renee

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Registered: 11-28-2006
Wed, 02-28-2007 - 7:32pm

Well he did a ton of tests, intellectually and emotionally. I can't remember all of them, but he basically said the emotional ones would detect the aspergers.

I haven't seen the final breakdown or scores yet, as I'm having him fax to me the report to give to the school, since they are harrassing me so. Normally he would sit down with us in a meeting and explain first, but since the school is being a pain in the butt, its not gonna be done that way.

I haven't done the letter yet as you suggested, because I in my mind wanted to wait for the whole thing to wrap up, and I also thought it would wrap up much quicker than it has. I really did think that he would get the dx, and then I could ask for more in the IEP, but then I forgot they have to do their own assessment....

I don't know why they haven't started the process yet??? I'm so new to all of this iep stuff and such. I also wanted him to get some kind of aide, at least part time to help him jumpstart back on the school work, but I can't without the dx. I have a feeling the alphasmart will not be the magic things that will "fix" this for him as he obviously gets confused easily. I don't know how to make things less confusing for him :(

And now I'm scared I'm gonna pick the wrong doctor again.... when I read his bio, it doesn't say anthing about Autism. I guess I just assumed he would know enough about it while he tested for Dysgraphia too. I originally thought he was a NP but re-reading his bio he is a physcologist specifically trained to give the neuro testing. But I guess thats pretty close. I think I remember telling the insurance co, that I needed a Neuro-Pyscologist and they referred me to him, and I just assumed. But then again, this was back in the beginning of 3rd grade, and I had to stop testing with him because the insurance co. denied the testing. At that time tho, I was just concerned about the Dysgraphia.

Renee, would the regional center know who to recommend? I just hope my insurance covers this this time.... (different insurance co. now)

Lainie

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