7 year old assumed to have autism then pervasive developmental and then aspergers?
7 year old assumed to have autism pervasive developmental and aspergers?
for 6 1/2 years my son was assumed to have these three illnesses.but when a genetic test was performed it disclosed no fragile x and normal chromosones.so when i called back to the pediatric neurologist from 5 years ago (July,2006) who said my son had autism and fragile x within a 10 minute hospital visit I was confused from what the genetic counselor 2 days ago.He was also told to have pdd( May2009)and August 2011 while in the psychiatric unit was said to aspergers.But from the genetic counselor I was told you have a normal child with a behavior problem that he might have inherited a gene from his father But because of your insurance limitation we cant further research because it will cost thousands of dollars so lets call it the last name aspergers’s.Then the pediatrician from the same hospital said well your son’s behavior is out of my league let’s call it autism spectrum disorder dont waste your money spending thousands of dollars to do further research.I don’t know what to as a mother who has tried every medication every early child intervention,4 public schools 2 0 3 psychiatrists and psychologists.The genetic counselor said well you didn’t know what the cards were going to deal me because I was a rape victim by this child father 2 times while was conceived and when the child was 4 years old .the father found out where I lived at.I explained to the genetic counselor what I seen in the 52 years old I also see in the child.even him resembling the father.I’m 37 years old and dont know what to do.I dont know what to call what my son has I dont like sugar coating.
1 day ago- 3 days left to answer.
My son will be 8 in Nov. he was classified individually by different doctors for autism ,aspergers and pdd.I only see one symptom of that is behavior.His MRI in August 2011 came back normal.
He has normal set of chromosones and no fragile x.I dont see a sensory problem.I’m trying to explain this to the schools from the genetic doctors results.I could have said nothing of the results,but I did .I feel I have to lie about the truth vs the untruth.
18 hours ago
BN you heard my cry here.I have tried to talk to American psychological association.They act like they are stumped by my question of autism.Even the school psychologist at the board of education brushed me off by saying what is I can do for you.Then I called the doctor today who said Pdd 2/12 years ago he claim he forgot what he diagnosed him with.then the pediatric neurologist keep putting her nurse on the phone to explain fragile x when there no fragile x in his genetic test.I got a feeling these think I am going to SUE THEM.I even called a church for the right direction to go!! My heart is broken .I have advocated for something that may not exist.
Medicaid is what I have for my son.That’s why no further testing can be done.So I was told just call it aspegers by the genetic doctor or autism by the pediatrician.
The label may not really matter, what does matter is that your son receives treatment that does fit his needs and I’d check to make sure they ran the CORRECT Fragile X test (in that case the label DOES matter with the advances being made in research, the health conditions associated with fragile X and how you work with a child with FX, i.e., one should never force eye contact). Many neurologist still run a chromosome or micorarray analysis to test for FX and those tests are not reliable, too many false negatives. If they ran the correct test they should have given you CGG repeats – if they didn’t then I’d retest him using the FMR1 DNA test (aka Southern Blot with PCR analysis). There is a very active FB group the Fragile X Files, that you may be interested in, you may find additional support for dealing with behavior. I recommend the resource below, the columns are excellent I’d also recommend following some of the clinical trials associated with Fragile X and Autism on a new med STX209 (Arbaclofen) it may be out on the market within a year or two.
Please feel free to connect with me directly if you like. (((Hugs)))
Powered by Yahoo! Answers