Hi Janine...
I'm actually glad to hear that all turned out OK with the CT scan. I understand that it would help "explain" things if something actually showed up. I do understand how that feels , you'd like to get to something "concrete"... Riley's health problems (CVS) are the same way, it isn't something that can be tested for, we just have to have a million rule-out tests...to make sure it's not something else.
From what I understand, Autism does not always appear in those tests (someone please correct me if I'm wrong), I've even heard PET scans are a little more reliable for the things that do appear. If the standard tests worked, they'd have a better way of dx than the millions of interviews, questionnaires, observations that are currently used. Here's what I'm doing, don't know if you're already on this track or not.
I went to the Children's Memorial (Chicago) website, and searched for Psych providers using "autism" as a keyword....he's already been evaluated by the school...Grant is definitely of age for that, and you may have done that already. When he was young, I guess it's called "early intervention" and that dx was verbal apraxia, speech delay, sensory integration dysfunction. The reason I'm going through Children's right now, is that the school is disregarding their own evals...the SpEd admin. is claiming "ignorance" and I just want to know for sure what exactly is wrong. Maybe it really is just what they've said, but like you, I need to know from an expert what it all means.
I KNOW he has severe sensory issues, speech issues, he's severely lacking social skills, has a normal-high IQ in some areas (visual) and very low in others (cognitive, processing, written) and adaptive behavior was all <70....but what does it all mean?? I need to know from someone who "isn't trying to come under budget" but from someone that can just tell me flat out this is what it is or isn't. And I can work with that.
I feel for you Janine, and because you know it in your heart, I HAVE to say don't stop looking for answers. My poor son is almost 9, and we're still in the dark.
You sound so proactive, so I'm sure you know all this already...I just want to let you know that I understand how you're feeling, sort of let down that it isn't clear cut. Sometimes it's not...wihch sucks for us I know-but we can't let it stop us.
Good luck to you Janine,
~Lesley
Janine,
I'm a newbie on this message board, so pls disregard if this doesn't apply/make sense to you. It's just that with three special needs kids (bipolar/MR/Asperger/ADHD; bipolar/ADHD; depression/anxiety/ADHD), I've been through the psych mill three times. I remember having the same feelings when mine were your son's age. And believe me, if I had it to do all over again, I would do things differently!!
I think that I would shop around for a neuropsychologist. Somebody who knows how to diagnose or rule out all PDDs. A thorough exam should take anywhere from 4 to 6 hours. The resulting report can be anywhere from 8 to 16 pages of information about how Grant's mind really works. A good report will also give you concrete suggestions about how to improve his life; things you can do at home, at school, etc.
The neuropsych will sit down with you and go over the report, taking another 1 to 2 hours, answering your questions and explaining the result of the tests and what they mean. If the results don't jive with what you know about your son, go find another doctor. If what you get makes sense to you and helps you understand your son better, great!
Then, with this report in hand, go to the special education office of your school district. Consider yourself armed for battle (if necessary)! The diagnostician in the dept will know how to interprete the report. They will still want to do their own testing, but the neuropsych report will carry more weight.
Hope this helps a little bit.
We've been going through the diagnosing roller coaster for more than 2 years. It took over a year for us to be taken seriously, and for drs to admit that there was a lot more going on with our ds than we were first told. Unfortunately, even though we are now being taken seriously ,my ds is now considered to have atypical autism, seizures, encephalopathy, adhd, and other problems we still do not have a clear diagnosis, and may never have one. We are currently consulting with a top neuro in the autism field, he is one of the many drs that has told us no matter how many tests are done sometimes there are no simple answers. My ds has had an MRI, EEGs, spinal tap, numerous blood & urine tests, but many have come back normal, or with inconclusive results, only the EEGs were abnormal.
I guess I'm saying if you believe there is something different that is not being diagnosed with your ds keep trying and asking questions. It's not an easy journey navigating the medical system, but it's still worth trying rather than constantly worrying about those nagging questions that the drs are missing something, and not doing anything about it.
Hope this was of some help.
grant's ct scan results came back and everything was normal. I just do not know what to do because I know that there is something else going on with him, it just cannot be detected by an x ray or ct scan I guess. I know that there must be something else going on with him not just a delay. I am not sure where to turn now.We went through years of every kind of testing with our first son and finally aspergers was the answer. His MRI etc were all normal which ruled out any tumors or the like. When we saw autistic signs in our 2nd son, we saved our selves the run around and got a dx from a ped.psychiatrist. It was much easier and we could go about getting him services to help with out the constant running to different evals and Dr appts. I am not sure what caused my sons to be affected....it is a curiousity......but we concentrate on living with it and trying to overcome the difficulties.