Autism Diagnosis for my 23 month old DS

[halffull]

Hi Everyone!
I have been lurking for a little while now, and I have truly appreciated all of the insight this group has to offer. I am hoping to gain some input/insight from you all. I apologize in advance for the length...I'm chatty

A little BG:
My darling son (will be 2 this Thursday) has just been diagnosed with Autism from the UC Davis MIND Institute. He has also received a diagnosis of an "unspecified genetic disorder" this past October. This means that our geneticist thinks he has a genetic disorder but he does not know what it is. We have taken the initial Fragile X test, the FISH and the Microaray (sp?) and all of his blood work has come back normal. We are scheduled to see another geneticist on March 28th at UCSF.

My question(s):
1. Does anyone know of a Sacramento area online forum/message boards for special needs children and their families?

2. We are in the process of enrolling Emmett in Dr. Rogers' Denver Model study (at the MIND Institute). Once we are accepted into the research program we will have a 50/50 chance of having the MIND Institute's Denver Model (20-25 hours a week in-home therapy). The other 50% would be local community services provided by Alta (our county service provider). Does anyone have any insight as to what other Autism therapeutic programs are available in the Sacramento Valley?

Thanks so much for any information/insight you can provide.

Tiffany

[cchrissyy]

you're in such a good area for help! Alta Regional Center has a good reputation for giving services, relative to the other California RCs.
Also of course you have the MIND studies and referrals available. good luck with that Denver Model program!
The big parents group in Sacramento is (or was, when I lived closer) FEAT families for effective autism treatment(?). they print a resource guide for local autism related services, professionals, daycares, schools, etc. Also they have regular meetings and can hook you up with a parent/peer councelor.

I am super curious about the "unspecified genetic disorder". My autistic kiddo was suspected of having genetic or metabolic disorders and we did the fish, fragile x, and microaray and found no abnormalities. my understanding was that if the microarray is normal, that therfore his genes are normal, at least so far as current science allows us to know. that would be maybe 2 years ago ... were you told diferent?

[halffull]

Thanks for responding! I just registered with FEAT today, so hopefully we will get some more info there.

Our geneticist explained that the normal test results are telling us that Emmett does not have too many or too few chromosomes. He thinks that Emmett has a mutation, which the microary cannot identify. He said that if we had more clarity or a better guess as to what Emmett has, there are additional tests we can run. However, there are too many tests to just play guess and see. This is what we are hoping to find with the UCSF geneticist. We are hoping that she will see some markers in Emmett that will trigger a possible genetic disorder, from there she can order additional tests.

Our geneticist explained that the current tests out there are just not powerful enough yet to catch everything...

I am curious as to what markers your child has that point to a genetic disorder, my son's are very random, and most occur in the general population...it is a puzzle.

Tiffany

[askew]

I don't know much about autism services in Sac, but wanted to add in that we see Genetics and Neurology at UCSF and have been really happy with the care we receive there. None of the doctors we deal with are fear mongers and they have never tried to take hope away from us, which we have appreciated.

[cchrissyy]

I thought the microarray did see mutations - but I don't know a ton about this. maybe there are different kinds of microarrays.


we did have a CGH microarray ordered by genetics/metaoblics clinic at UCSF and performed by some blood lab out of state. no helpful results but I did feel well-attended by the UCSf team both in-office and in phone follow-ups